tag:blogger.com,1999:blog-30463432303220863302024-03-18T20:47:46.194-07:00The eGremlineGremlinhttp://www.blogger.com/profile/09258661016704838142noreply@blogger.comBlogger53125tag:blogger.com,1999:blog-3046343230322086330.post-78508764718774047672015-08-11T11:42:00.000-07:002015-08-11T11:42:22.258-07:00So I met Jeremy Corbyn.<br />So me and Techiecarer went to hear Jeremy Corbyn speak. <br /><br />Even though we arrived early the hall was already packed. Asking for help we managed to get seated after someone had kindly offered their seat. Before the event had started the hall was filled with people spilling out of the doors and crowding around the entrance of the hall desperate to hear him speak. I obviously thought that this was likely as the same scenario seems to have been played out up and down the country. So arriving to a rapturous applause he began his speech.<br /><br />He was the first politician I have ever heard to categorically state that those on welfare are not to blame for the UK’s problems, that we should be proud of the welfare state, that the NHS should be free from the point of use and that society has failed so many people in need of mental health treatment. That immigrants fleeing atrocities should be seen as people in need and not as swarms, as if they were non human. That we need to invest, tackle tax avoidance and increase public housing and pay. That we should have more public ownership, look after our environment and invest in education. That people should be able to learn what they want without worrying about fees at any point in their life. For the most part I agreed greatly with what he said even though I still have some questions on some of his policies.<br /><br />After his talk he took random questions from the audience. <br /><br />He then dashed around to talk and take selfies with everyone that wanted one. There were people at the event who were obviously struggling in their lives but he approached them with no less interest than anyone else and listened to what they had to say. Too often politicians seem awkward when talking to ordinary people and it was nice to see they were treated no differently.<br /><br />Initially I didn’t think I would manage to grab a word with him, I was low on spoons and trying to ask something in a crowded room is not the easiest especially as I was sitting down. I thought I would only have a second as he was rushing to another event but he stopped and smiled. I spoke to him about how the disabled community felt especially about Labour’s actions and the discrimination faced due to the negative stereotypes portrayed in the media. He answered and when I mentioned my health asked about how I was managing. I also spoke to him about care leavers and he actively asked about my experiences.<br /><br />Although he was in a rush I can honestly say there was not a moment where I felt he wanted to rush the conversation. I shook his hand and he reached to the side of me to shake Techiecarer’s hand, as well as the lad to the other side of me.<br /><br />The main point that resounded with me from his speech is when he stated that no party has the automatic right to exist and that the public should play a part in helping shaping its policies.<br /><br />I have supported the party in the past, as well as other parties but more recently like others I haven’t felt like I could. Labour's inaction to hold true to its roots has been infuriating. The election campaign was run on an attitude that voters must vote for Labour otherwise the Tories would get in and that voters must accept austerity light. That any disgruntled Labour voter who votes instead for another left wing party are allowing the Tories to get into power and obviously this attitude did nothing to win voters over. Throughout the Labour leadership campaign, the other Labour candidates and political commentators have stated that Labour lost the general election because it was too left wing. The fact that they state this shows how little they are listening to the public. Labour lost because it was offering austerity light. So people either decided not to vote or instead voted for other left wing parties. Instead of coming to the realisation that people were voting for other parties because they didn’t believe in Labour's policies, Labour decided to attack them stating how much their vote would be wasted. It is true that under the current electoral system for Westminster that these votes are more often than not “lost” but Labour did not understand that people wanted to vote for policies they believed in and I respect anyone holding on to what they believe in. <br /><br />It is often stated that people do not care about politics any more but if that was truly the case why is this man packing halls up and down the country with people spilling out of the doors and jumping up to windows in the hope to hear what he wants to say?<br /><br />Yes Corbyn could be like any other politician, this could be an act and he could totally change if he becomes leader or even prime minister but at the moment he seems to have been the most genuine politician that I have met. There is also no guarantee that the party, like any other might not backtrack on any election promises made. With how current opinion is within the Labour Party, there has been doubt cast on whether the party will allow him to lead if he gets elected as leader.<br /><br />But you can not tell me that people aren't interested in politics, they just want policies they can believe in, an alternative whatever the party.eGremlinhttp://www.blogger.com/profile/09258661016704838142noreply@blogger.com3tag:blogger.com,1999:blog-3046343230322086330.post-84948728887292841122015-05-07T06:25:00.001-07:002015-05-07T16:36:49.051-07:00Election Campaign thoughts<div dir="ltr">
I think I can sum it up the nations feeling</div>
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Urgh</div>
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Well done UK after five years of a government who came to power with their lie that “we’re all in this together” and five years on, the richer are richer and the poor are poorer.The burden for the banks failings have been placed squarely on the shoulders of the young, disabled & the jobless.</div>
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This election campaign has been brought to you by fear. The media and the conservatives have continued to perpetuate a discriminatory atmosphere towards the disabled community over the last five years through the misuse of statistics and the unprecedented coverage claiming that benefit fraud was much higher than reality. Not only have the disabled community experienced a significant increase in discrimination, they have also borne a significantly larger percentage of cuts to services. Because of this distorted reality a significant percentage of the public believe that disabled people who claim benefits are part of the problem and are the reason that the working classes are struggling. </div>
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This same tactic has been used to stigmatise the immigrant population and to imply that they are a drain to society and contribute nothing when this couldn’t be further than the truth. Finger pointing at its finest instead of the reality that there was a significant lack of investment into public infrastructure, hospitals, schools and housing in some areas due to a lack of government planning which has lead to a strain on public services. None of which should be blamed on the immigrant population.</div>
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And then the conservatives throughout this election have shifted the focus to the Scottish people and scaremongering fantasy that the Scottish people want nothing more than to tear up the UK. Yes they had a vote on Scottish independence and many scots would love scotland to be independent but the fantasy that if a SNP/Labour coalition was to go ahead that the scots would some how systematically make bad choices in an attempt to break up the union is a farse. For the simple reason is that they are in it!</div>
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And if the people of Scotland decide to send all SNP MPs that is their democratic choice and they have just as much legitimacy to be in Westminster as any other MP.</div>
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Unfortunately I can't help but agree with the many in the disabled community that there isn't any real choice for the majority of the UK and the choice is between not great and horrific. Many are hoping for the best case scenario of a Labour/SNP/Plaid/Green coalition hoping that the smaller parties will push Labour further left to where they used to be.</div>
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The country needs proportional representation so that each vote will matter more than it does now and the union needs to change to give each nation an equal voice and this includes the north of England that so often gets forgotten alongside Wales and Scotland. </div>
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But please today vote, even if you only spoil your ballot. There are vast sections of society that the government often fails to represent and its often those that vote the most like pensioners that are better protected and represented.<br />
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eGremlinhttp://www.blogger.com/profile/09258661016704838142noreply@blogger.com1tag:blogger.com,1999:blog-3046343230322086330.post-2266390096662207652015-05-03T17:45:00.000-07:002015-05-03T17:53:13.625-07:00#BADD2015: Don't shove me into your stereotypical box.The other day I felt really angry, for me at least because I’m not a person who angers easily. However when I was younger, there were periods in my life when I felt really angry. My Auntie taught me that the things I was getting angry about may not be as simple as they seemed and to find out what the truth was. As I got older I questioned more and endeavoured to understand. I shied away from anger believing that it had no place in my life, that it would only bring negativity and pain. And although I still believe that anger is best kept in small quantities, anger can push us forward, it can prevent us from accepting the inequality within society and instead motivate us to fight for change.<br />
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The last five years have been especially hard on the disabled community and there have been many times when it would have been easy to be consumed by anger. Even before the last general election, the tabloids had increased the disproportionate amount of articles that falsely claimed or gave the perception that benefit fraud was sky high. And not only has this continued but it has steadily worsened.<br />
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Over the last five years society has been bombarded with an underlying ideology that disabled people that claim welfare are a problem and are not part of society.<br />
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This negative ideology is only further perpetuated by the Government. With a speech on the fairness of seeing the “closed blinds of their next door neighbour sleeping off a life on benefits” and the near constant references to those who “work hard and get on” and “hard working families” to name but a few.<br />
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But this simplistic and discriminatory view implies disabled people who are not in work are simply choosing not to do so because of the perception, that a life on benefits is an “easier” life. This shows an absolute lack of understanding about those who can’t work and of how restrictive disability can be. <br />
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But with this being portrayed as an injustice to the rest of society it is easier for politicians to form a regressive welfare policy if people believe that those in the disabled community are fraudsters. Because the perception then is of a government that is simply righting a “wrong” and not the truth, that this causes society to stagnate and discrimination towards the disabled community to worsen.<br />
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You would think with a government and the media that is so eager to criticise the disabled for not working it would be shredding away the barriers to work to enable those that could, with the right support, variety and flexibility in the work available but alas no. This Government that is so eager to criticise has not only failed to remove any barriers to work and social inclusion as a whole but it has closed or reduced existing schemes like the Independent Living Fund and Access to Work.<br />
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The prime minister only days ago stated “a life on benefits, is no life at all.” <br />
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This goes back to the same perception that a disabled person without a job, has no purpose, no life. It also implies that a disabled person’s value simply rests on their ability to work or not and belittles the huge contribution that disabled people have made in society. In the same way as the rest of society, the disabled community pursue interests and contribute to society as others do outside of their employment.<br />
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When highlighting the Government and the media’s position with the public and with people I know, it is obvious to see how much this distorted perception of the disabled community has influenced many peoples’ opinions.<br />
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In its more milder form it is not unusual to be told that the “Government are obviously not talking about you, you're obviously genuine”<br />
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I know I am but given that the vast majority of people claiming disability benefit are genuine, chances are however much this person may perceive me as genuine, another member of the public who doesn't know me may not and may discriminate against me. This feeds into the public's belief that benefit fraud is 34 times higher than reality.<br />
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For anyone that has read my blog you will know I have psoriatic arthritis and hypermobility alongside additional conditions and that I deal with pain every day. Although I walk with a stick and have had to use a wheelchair at times, I may look “normal” to an outsider that doesn't take more than a second to glance at me or get to know me. <br />
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I have had my disability questioned and have faced discrimination by passers by and those who even know me. I know that isn’t helped by the fact that stereotypically, arthritis is seen as a mild condition and one that only affects people in their old age. But the real crux of it is, that not only is the reality of my condition further from the public’s often misguided perception, I often receive discrimination and less understanding than someone who has the flu. <br />
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This is what I find truly ludicrous. I would love to say that this is uncommon but I and so many who live with invisible conditions have our validity questioned just because we don't have a snotty nose. It is even more ludicrous when you factor in that my arthritis can create a immune response that is equal to a severe bacterial infection or even burns.<br />
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Not only do disabled people have their validity questioned by society and even by people they know, they often are excluded from social gatherings and if invited the lack of an accessible venue or seating may mean they are unable to join in when they otherwise could of.<br />
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I have learned since the onset and the gradual worsening of my disability that friends that knew me well accept that my disability is just another aspect of me and that if they enjoy my friendship, they will make time for me as they did before. There are friends that care after every hospital stay and friends that will wait with me whilst I sit and rest, and there is the friend that has done all she can so I could be at her wedding.<br />
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Because of those friends and when I meet members of the public that give me their seat before I stumble, for those that don’t glare at me and instead open a heavy door, and for those that ask me questions with a thirst for understanding, you are the reason I do not submit to that anger.<br />
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The discrimination has been completely engineered to pull the public's attention away from the real causes of the inequality in other sections of society to easily blame those in the disabled community.<br />
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Society has gone backwards and peoples' perceptions have worsened. But this is not an problem created by the disabled community, it is one of a complete lack of acceptance. It is so hard for the disabled community not to be blinded by rage from the injustice experienced. The realisation that this shouldn’t be up to the disabled community to fix. There are those in society that will judge the disabled and do not want to change their ignorance and to those people I do not need to justify myself or spend time on you. To those that ask questions and want to reach out to understand, I am here.<br />
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<span style="font-size: x-small;">(I know im late this year but better late than never)</span>eGremlinhttp://www.blogger.com/profile/09258661016704838142noreply@blogger.com1tag:blogger.com,1999:blog-3046343230322086330.post-42207354287777577782015-03-10T14:15:00.000-07:002015-03-10T14:54:57.802-07:00The NHS: should we all have care?So I was looking at 4OD, looking through the factual section when I found NHS: £2 Billion a Week and me being me, who has watched so many documentaries I was intrigued to find out what it was and when I did my heart sunk.<br />
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The first episode of NHS: £2 Billion a Week follows three patients; a women in need of a breast reduction, a man in need of a liver transplant and a couple in need of the support of a Dementia nurse. After each of their stories were shown, it was detailed how much their care would cost and what the same amount of money could provide in other areas. Selected tweets were also shown live commenting on why each person should receive their care or not.<br />
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First was a women in need of a <b>breast reduction</b>. Generally, it is often felt that any breast augmentation is purely cosmetic and stories shown in the media like that of Josie Cunninghams only serve to reinforce this further. Many breast augmentations undertaken in the UK are for cosmetic reasons. However there are people, like Kim, who have particularly large breasts and this extra weight attached to the front of them day in day out will eventually take it’s toll on a person’s back. <br />
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She also referred to how she had and was working when explaining how she needed help. I have seen this more & more, consciously or not, many are using language to almost promote their “worth” before they are “allowed” to receive help both in the welfare and NHS system.<br />
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Then you have people like Josie Cunningham who had breast implants on the NHS and yes, she plays the villain well for the media. But the simple fact is she had no breast tissue, she was at the extreme other side in breast augmentation and for many girls they find this truly difficult to deal with psychologically. Do we therefore not allow anyone any argumentation because of the socially unpalatable person that came before them?<br />
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The cost of surgery was used to compare what the same amount could provide for elsewhere. It resulted in an inevitable tweet “Shall I miss dialysis for 6 weeks and die so you can reduce your boobs.”<br />
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<b>Cost of Breast Reduction</b> <span style="color: #990000;"><b>£4,000</b></span><br />
<span style="font-size: x-small;">the examples given for the money spent elsewhere</span><br />
<span style="color: #990000;"><b>1,000</b></span> inhalers for children with asthma<br />
<span style="color: #990000;"><b>6 </b></span>Weeks of Dialysis<br />
<b><span style="color: #990000;">100</span></b> GP visits<br />
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Next patient Mark, who has alcohol related liver disease and needs a <b>liver transplant.</b> Any transplant given is obviously a gift that anyone should be thankful to the donor family for giving and thinking of others at such a sad time. <br />
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However, there was the inevitable tweet stating “why give an alcoholic new liver so he can drink more give it to someone more deserving.” This person isn’t alone in their opinion, many feel this way. But because this is due to alcohol he or anyone else is not allowed a second chance to change and turn his life around?<br />
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Another tweet however, reminded people that alcohol is an addiction and an illness, albeit one that society finds unpalatable. One that too often we judge to be the individual’s doing, a choice. It is a choice but not to become an addict but one to escape from life and what the person’s feeling. Access to drink and drugs are available within minutes but access to mental health care can be months if well over a year away. With the systematic lack of mental health care provision and mental illness being too often viewed by society as something people can help if only they tried, there should be no surprise that when given the choice of lessening your pain (and emotional pain is legitimate) that people often chose to forget with drink or drugs.<br />
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<b>Cost of a Liver Transplant</b> <span style="color: #990000;"><b>£73,000</b></span><br />
<span style="font-size: x-small;">the examples given for the money spent elsewhere</span><br />
A nurses salary for <b><span style="color: #990000;">2 years</span></b><br />
<b><span style="color: #990000;">9 </span></b>Hip replacements<br />
<span style="color: #990000;"><b>40</b></span> hospital beds for a week<br />
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The third, Barrie, has Dementia and his wife and carer Ros wanted access to a specialist <b>Dementia nurse </b>who would support the couple. The couple are dealing with an awful disease which is only going to increase in frequency in the UK as the elderly population rises. Many will be supported by their carers who often aren’t supported and often are overlooked. The government knows these carers won’t abandon the person they care for and too often carers take the strain at a cost to themselves.<br />
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<b>Cost of a Dementia Nurse</b> <b><span style="color: #990000;">£375 a year</span></b><br />
<span style="font-size: x-small;">the examples given for the money spent elsewhere</span><br />
<b><span style="color: #990000;">2</span></b> Meningitis B jabs<br />
<b><span style="color: #990000;">2</span></b> ambulance call outs<br />
<b><span style="color: #990000;">19</span></b> blood tests<br />
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For me this programme brought up notions of the workhouse and the “deserving” and “undeserving” poor. The simple reality is the NHS is affordable but at present is being woefully underfunded and portrayed as unsustainable. The program detailed the costs of each procedure requested and what the same money could buy if used elsewhere. Instead of creating an environment where people feel they need to prove themselves “worthy” of help, the equivalent costs could have been shown for how much the same procedures would have been under a private health care model. The government want to portray the NHS as unsustainable, for us to reduce the NHS to the bare bones so those that can pay are forced to top it up with private health care and those that can’t go without.<br />
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Kim’s breast reduction would have been £4,000 on the NHS, the same privately would cost nearly double. Even if people paid more in tax, the NHS is still cheaper and more efficient. Its not perfect but satisfaction is often no better in countries that have a private health care model.<br />
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For me, the programme highlighted how decisions are often based on the short term in order to “save” money. Kim was refused a breast reduction and it was costly to decide this. However not once was she seen by a (NHS) plastic surgeon to assess the reality that if she lost weight (which she already had) would it reduce her cup size. Long term, the medication she is taking will be more costly than providing the operation. Providing a Dementia nurse also long term is more cost effective, supporting people in their own home, away from hospital which is so much more costly.<br />
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The programme also highlighted how society’s disregard in helping those with addiction is so much more costly and simply because it is seen as “immoral.”<br />
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The cost of not treating addiction is added to policing and seen in the increases to home insurance with both costs recurring. By not treating addicts, the odds are stacked against them being able to achieve recovery without the support. It is something that crosses all social barriers and could happen to anyone.<br />
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This programme opened up the debate on Twitter of who was deserving and who wasn’t. Many believed that addicts weren’t. But if were to get rid of the limited and woefully inadequate amount of support available for addicts, what is to stop the same happening to the next illness society finds unacceptable? <br />
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What would be the criteria? Do we exclude those who don’t work in favour of those that do? Or ration treatment for the elderly? Or no treatment for those that smoke? It would be a nasty downward spiral. <br />
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I am worth it. I personally won’t apologise nor justify myself because I have a disease that was not of my own doing, that I won the shit health lottery or that it happened to me when I was young. I will however say my gratitude for the NHS can not be summed up in a few mere words, the NHS is worth fighting for and is cheaper than private health care. You may be healthy now but probability states that you will need the NHS in your lifetime, it only takes a second for things to change.<br />
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We have already seen councils placing elderly and disabled up on bidding sites for social care providers, reduced to a list of conditions like you would sell an old Jacket you no longer wanted. How would you feel if that was your relative? Nobody should feel unworthy of care and feel like they have a price on their head.<br />
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Everyone should receive treatment but we are a generation that were born in the NHS and so often don’t understand the realities of not having it to rely on. People need to use each service responsibly. We can not let this be reduced to an argument about which condition is more “deserving” than the rest. The NHS was created at a time we could least afford it because it was the right thing to do, it is one of the best things this country has done and it will remain as long as there are people left to fight for it.eGremlinhttp://www.blogger.com/profile/09258661016704838142noreply@blogger.com1tag:blogger.com,1999:blog-3046343230322086330.post-83905836256308551592015-01-07T08:47:00.000-08:002015-01-07T08:47:20.964-08:00Westminster, If we can do it so can you!So a few weeks ago I watched Prime Minister's Questions, oh why did I. <br />
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I rarely watch Prime Minister's Questions anymore, it has descended into a circus of baying, laughing & taunting that any child could tell you is a deeply wrong way to behave especially when parliament discusses matters that affect the public so deeply. But even putting this aside, no genuine debate occurs, ministers on the prime minister's benches jostle for a turn to stand up & state how wonderfully they're doing, with the opposition of course taking it’s turn to say they could have done it better. Any genuine inter bench debate is silenced. There is no debate, no back & forth of ideas & definitely no compromise. So whats the point? All Prime Minister's questions shows us is what the government & the opposition is arguing about on a given week. What they accuse each other of failing at & what achievements they claim to have accomplished, regardless of the truth of them. All of which are covered by any news source that covers politics within the UK.<br />
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Watch one Prime Minister's Questions & you can't wonder why people are disillusioned with politics in Westminster.<br />
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This is however not how Questions are done throughout the rest of the UK. With the countries that make up the UK having their respective devolved Assemblies & Parliaments that sit depending on the nation, on a differing amount of devolved legislative powers.<br />
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So I decided to look at the most recent sessions (at the time of writing), in the respective parliaments & assemblies across the UK, that were currently available online when all nations sat during the week. (I couldn't find any link for the London Assembly)<br />
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The First Questions were on Monday 24th November - First & Deputy First Ministers questions: Northern Ireland's Assembly.<br />
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<span style="text-align: start;">During this session the chamber talked about the troubles, the Irish language & religion. Northern Ireland with such a troubled past, can gather in the chamber & discuss topics which outside the chamber can still be very heated without resorting to the same type of behaviour seen in Westminster.</span></div>
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<span style="text-align: start;">The Second Questions were on Tuesday 25th November - First Minister's Questions: Welsh Assembly</span></div>
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<span style="text-align: start;">During this session the chamber talked about transport, including roads & rail. The First Minister was asked about the changes in fares & admitted at present he did not know the information to give to the minister but that information would be made available in due time. There was no spin given & no guess work & the minister asking the question accepted the First Minister's answer. The chamber got a little more heated at 18.20 in the video when Plaid Cymru leader Leanne Wood spoke about Welsh under funding. However this didn't continue for long after the speaker intervened & brought the chamber to order. There was then further debate about health & domestic violence.</span><span style="text-align: start;"> </span></div>
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<span style="text-align: start;">Wednesday 26th November - Prime Minister's Questions: Westminster</span></div>
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The debate started with VAT & how the Prime Minister believes there should be a debate in the commons about the Welsh NHS even though this is a devolved issue. Even if there was to be any debate in the Commons, it should be about the NHS as a whole & not instead an attempt to politically point score by attacking the Welsh NHS. The Coalition attacks the Welsh NHS because a Labour government is sitting in the Senedd (Assembly) & a there is a Labour opposition in Westminster. There are various problems within the NHS as a whole but as a Labour government doesn't hold a majority in any other parliament, there is no other opportunity to attack the Labour opposition. </div>
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The debate then moved onto those with learning difficulties, often those who get placed into institutions away from & against their families wishes instead of being supported in the community.</div>
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Then there was A LOT of it's your fault, no it's your fault. There was also a lot of “will you congratulate” so & so & oh our economic plan was so “awesome”. If this was cut out, all of the peppy filler, there may be so much more time to discuss more pressing issues?</div>
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Anyway, after the peppy interlude, the debate moved on to accusing the government of pandering to UKIP. Followed by the NHS & the Israeli bill removing the rights from non jews. A minister then tried to praise the personnel who were going to help with the ebola outbreak. Something very worthy of praise, however people continued to speak whilst she was trying to talk. Its worth noting that this help is arriving months after charities on the ground had stated the urgent need for further assistance & unfortunately this help was only given after westerners had become infected.</div>
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The session began with Jackie Baillie asking what the First Minster was doing & wishing her a safe journey to the Isle of Man. Could you really see an opposing party member doing this in Westminster? The debate primarily focused on further powers being given to Scotland. Although the debate was a little more rowdy in parts, the debate still continued with the Chair bringing the chamber back to order.<br />
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I have included all of the videos of each debate, from each of the respective parliaments & assemblies. I don't expect anyone to sit through & watch each session but click on each video, a few times on each & the difference in noise level between Westminster & the devolved parliaments is astounding. Especially the shocking frequency of how people are not talking when someone else is trying to speak in the devolved parliaments. Has it come to the point that we must implement a talking stick within Westminster & for ministers not holding the stick, to sit with a finger to their lips like children do in primary school before they learn to listen?<br />
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Although there has always been debate about the effectiveness, along with the ability to efficiently legislate in the devolved parliaments, the fact remains there is much more purposeful debate seen in these parliaments. There has been research to suggest that parliaments that sit in a rectangular chamber with two sides are much more confrontational than those that are round & parliaments that sit in a rectangular chamber are much less likely to compromise. In addition, in all of the devolved parliaments within the UK there is an opportunity for the member posing the question to the First Minister to respond to their answer, something which is not seen at Westminster with the exception being the lead for the opposition. Regardless of the reason it is clearly possible to have an adult debate without the behaviour seen in Westminster. When people are watching ministers laugh when pressing through legislation that may impact upon a person's life so significantly that it may mean they have less food, no roof over their head & less opportunity in life, there should be no surprise how little faith people have with Westminster. Laughing shows how little they are in touch with the people in which their legislation affects & that I think is the main difference, that too often Westminster MPs forget who they represent until the next national vote.</div>
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But it is always important to remember. These MPs are voted in, they represent their constituents with their consent. We are the ones that must push for change & understand the importance of who you vote for on election day. </div>
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eGremlinhttp://www.blogger.com/profile/09258661016704838142noreply@blogger.com1tag:blogger.com,1999:blog-3046343230322086330.post-8742666695715078682015-01-01T14:28:00.000-08:002015-01-01T14:36:21.403-08:00and a Happy New Year!!<div dir="ltr" style="line-height: 1.15; margin-bottom: 0pt; margin-top: 0pt; text-align: center;">
<span style="color: purple; font-size: x-large;"><b>Blwyddyn Newydd Dda</b></span></div>
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So Happy New Year to everybody! We rang in the New Year watching people standing in the no doubt freezing cold weather watching some pretty fireworks whilst Techiecarer & I sat at home with one very excitable bunny bounding around us, he seemed so very pleased to ring in the New Year. <br />
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There was some lovely times this last year & some sad especially with my Dad’s passing & although it is part & parcel of my life, it is truly ridiculous to see how many hospital visits I’ve had. <br />
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I’m not for resolutions. Promises that so often you don’t keep to yourself. However as always I have things I want to do but on the understanding that I may not complete some of the things I would like to do this year but that doesn’t mean I never will. I also know that I will no doubt do things that I hadn’t even planned for this coming year.<br />
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However the main thing I want to try & do this year, is not to care about peoples’ judgement as much. I always try to be a nice person & be someone who cares but when I know that I am doing all that I can & that I need the help & support that I receive I still however get judgement. For me, it makes you feel like you have to explain, to justify yourself, where there is in fact nothing you need to justify yourself for. I have always known that for some they will never accept how things are regardless of what you say. So I’m going to try to conserve my energy & not defend something I don’t need to defend. I also want to make sure that I don’t let people define my worth by my disability or my lack of a job, my disability is part of me but it is not the only part & that just because I don’t have these things does not make me worthless nor mean I have no purpose. <br />
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I also want to write more. Manageable amounts that aren’t necessarily huge essays & to not worry about what I’m writing as much as I do & to improve upon it. For me with my dyslexia I have always found speaking a breeze but writing is a lot harder especially coupled with brain fog & fatigue. There are also so many small things I’m thinking about focusing on & will mull it over in the coming days & I know that Techiecarer has his own challenges ahead for this year but I know how very I proud of him I am. <br />
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To everyone I wish you a very happy new year & for everyone to be kind to themselves this coming year. To be helpful to others, to stand up for whats right & for the disabled community to support each other, to not allow people to create a climate where disabled are made to feel inadequate.<br />
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No one should define you but you.</div>
eGremlinhttp://www.blogger.com/profile/09258661016704838142noreply@blogger.com1tag:blogger.com,1999:blog-3046343230322086330.post-59620810286583358732014-11-23T08:48:00.000-08:002014-11-23T08:50:12.952-08:00Counting Spoons <div dir="ltr">
So what has happen since my last “spoonie” bod update? </div>
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Well all I can say is having multiple overlapping conditions is just damn complicated & inconsiderate some times, well a lot of the time. Too often than not I have learn’t that you can calculate how many spoons you may need for a particular task & often half way through a plus changes to a minus & you have to deal with the “fabulous” consequences.</div>
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But on the whole there have been many hospital appointments, GP & nurse appointments & I underwent surgery.</div>
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I was waiting to have a nerve test done which i've had & my nerves at least are doing what they are suppose to. Great, but that obviously doesn't explain the pins & needles in my feet & legs. The guy however that was doing the test said I need to be sent for a head & spinal scan & also mentioned that Doctors have found that some people on Anti-TNF treatment have discovered that it has messed up their nerves. </div>
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Oh, well that's peachy then !</div>
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It’s not like I can really choose not to take medication for my arthritis so it does "slightly " complicate things some what however there are a few similar medications that I could switch to if need be.</div>
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I've been off my Anti-TNF treatment for awhile as I had to have an operation & as my medication suppresses my immune system, my rheumatology team took me off treatment so to try & give my body the best chance of healing afterwards . Although not great, it’s worse to be left on the medication (for me personally anyway) like my old team would (different treatment but it still suppressed my immune system) as often I wouldn't heal properly & I would be more prone to infections.</div>
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The operation hurt, I was awake though sedated. I'm not a wimp about these things been as I have pain all the time but I tried to tell the anaesthetist that when I had sedation previously at this hospital for a non surgical procedure, I was barely sedated at all & obviously as this was surgery I didn't want that to happen again. </div>
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Unfortunately he took this as me having a low pain threshold instead of having a higher level of pain to deal with but I didn’t try & argue & just agreed with him as it was easier. He told me not to worry that the sedation that he was going to give would be enough but it wasn't, he had to give me more sedation & pain relief because I was too awake. </div>
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I then had to lie in recovery for an hour whilst I came round & after you have eaten they move you to a chair recovery before you are seen by a doctor & then discharged. </div>
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So half way though being discharged I started to feel bad & that I was going to be sick so I told the doctor who asked if I "hold on for a minute" & they would get me a sick bowl. Ookk? So shes talking about my discharge whilst I try & concentrate on not throwing up on her or that's what I thought. About a minute maybe? Later she asks me if "I'm ok" I proceed to slightly shake my head, mumble "no" & then I blackout. I mean how it happens in films, think Harry Potter & the dementors without the dementors, soul sucking & the screaming. I came back around to people holding me up right on the chair on oxygen with a blood pressure cuff on & O² sats monitor. They proceeded to plonk me on a trolley & wheel me back into the recovery for another hour & a half. </div>
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Nooooo! I was trying to escape!</div>
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Turns out that my blood pressure had got really low 60/40 but by the time I left recovery (for the second time) it had got nearer normal at around 100/80. I asked the nurses if TechieCarer was ok throughout this & she said “Oh yes but you scared the doctor half to death”. </div>
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Whoops, well I did warn her!</div>
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Anyway other than an early infection which my GP was awesome quick to treat, I healed as I should & when I went to my doctor to talk to him about some other tests I had & my bowels, (I know! but everybody has them) he suggested that I had another blood test. </div>
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This was to check my ferritin levels which is an important little protein for those that don't know that stores & realises iron. I had had my red blood count done, the amount, size & shape were all as they should be & usually if they aren’t, it is a good sign of anemia. However when I had my ferritin checked my levels were really low indicating that although the other signs were fine I was infact anemic because I was deficient in the little protein that knows what to do with the iron.</div>
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This is also likely one of the main reasons I blacked out after my surgery & so I’ve now been put on quite a significant dose of iron tablets to try & get everything to how it should.</div>
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Also my usual physio is off sick (Boo! Hope she is better soon) so I have been seeing a new physio who is really nice. She had me trying wax therapy which is very odd & since I have been off my medication I’m in quite the flare & have been having alot of inflammation in my joints. My hips have been especially more painful which the physio has said is because I have bursitis in my hip (again) & inflammation in my pelvis. So unfortunately i'm not going to be able to avoid a steroid injection this time but hopefully it should get the flare inflammation back under some kind of control.</div>
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So yep that’s what's been occurring <br />
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eGremlinhttp://www.blogger.com/profile/09258661016704838142noreply@blogger.com1tag:blogger.com,1999:blog-3046343230322086330.post-88539872751365475562014-11-18T09:45:00.000-08:002014-11-18T11:10:06.577-08:00Chronic illness, disability & a box that doesn’t “quite” fit<div dir="ltr">
So I am referring to a blog post I have read titled <a href="http://www.huffingtonpost.co.uk/simon-stevens/disability-welfare-stop-framing-it-as-just-welfare_b_6138144.html">“Please Stop Framing Disability as Just a Welfare Issue” </a>& although I refer to the piece it is not an attack at the bloggers character but criticism of a piece that I felt was deeply one sided in parts.</div>
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I have linked to the blog post that I am referring to above & about half way down the post it refers to a section of the disabled community as the “Sick movement”. </div>
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I can’t see how refusing to accept a section of the disabled community as that, disabled, is suppose to support a move to have the disabled community included fully into society?</div>
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Just because someone may personally believe that these people do not “fit” into the definition they have of disability doesn't make it true.</div>
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It is also deeply disturbing & damaging to imply that if one person is perceived to have a severe disability & can do a proportion of work, that people with perceived “less severe” disabilities should have no excuses. When in reality most have additional difficulties that are not taken into account when casting judgement, which in itself can often be most damaging to the individual & will not support any idea of being confident living with their disability.</div>
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I have several overlapping medical conditions including psoriatic arthritis & hypermobility & although some conditions with the appropriate medical treatment can be well managed, medicine is still not perfect & often a person's condition is still disabling.</div>
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I have a condition which as a result causes disability & so therefore i am DISABLED. My arthritis causes me pain, fatigue which restricts my movement. I am restricted in my movement by the inflammation & pain & I can not carry anything heavy because my wrists will physically give way & this is just to start. Although I have medical treatment, I am one of those where medicine can not control the disabling aspects of my condition.</div>
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Disability by definition is a restriction & a limitation. It is not because we aren't trying hard enough, that we’re not “determined” or that we are giving in. With all the will in the world it won’t necessarily be enough if the body can’t keep up, even if the person had unlimited support & adaptations & this is not a failing on the person’s part. </div>
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It is bad enough that the government & the media consistently bash the disabled community on its legitimacy (which creates a more ablest environment) without members of the disabled community excluding people, often newly disabled, because they don’t believe that these people belong in their definition of disability.</div>
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However much the blogger in question may not like welfare being part of the immediate debate it is because if people are left without money & security when you are disabled (especially newly so) it will worry the life out of you, as it would for others disabled or not.</div>
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At the point when the brown envelope hits the mat the last thing a disabled person is thinking about is how to change disability policy for the better but instead are hoping that they will have a roof over their head, food & heat. The blogger makes it come across as if the first thing that enters a newly disabled person’s mind are pound signs but instead it is worry. </div>
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The work capability assessments work on the basis of the person is "guilty" or has something to hide & it grades on how “damaged” a person is. I would argue that the work capability assessments are the immediate basic problem for many. They are disabling in the way they are carried out & inspire no level of confidence from the individual that they will receive the support they need. </div>
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From what I have taken, from what the blogger has written, I agree that society is disabling but even if we had some beautiful utopia (oh how I wish) people will still be disabled especially those with chronic illnesses until medicine advances further. The WCA is broken & campaigners are drawing attention to the failings of the assessment to try & improve the situation. If the WCA was altered or removed this wouldn’t be the end to campaigning, it is only the start.</div>
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It is not seen as a "black or white" issue or that simply welfare is the only issue affecting disability. I find it incredibly patronising that people who campaign for improvement in the WCA apparently want the "protective feeling of a hospital environment".</div>
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The campaigners that campaign against the WCA want greater support given to disabled people so that they can realise their full potential. However many of the policies that were moving towards this have been cut, altered or greatly reduced including the ILF, PIP & access to work. Although imperfect, these were steps towards giving greater support to disabled people to realise their full potential & to be independent but due to the cuts the progress that has been made is largely being undone.</div>
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Disease does disable people & so does society. I would love society to lift the barriers around access to transport & buildings, for flexible working, job sharing or variable hours. But also for society to see that some people can't do paid work but could volunteer & that some can’t work but still have valuable contributions to make in other ways & to appreciate the value in it.</div>
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But this takes time & for society to care, which seems to be happening less & less with the increasing scrounger rhetoric portrayed by the media. Disability doesn’t fit into a tidy box or category it is as unique as the individual affected. The blogger only sees the final goal, not appreciating that we can not ignore the issues of the WCA if we want fair treatment for disabled people.</div>
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The process takes time.</div>
eGremlinhttp://www.blogger.com/profile/09258661016704838142noreply@blogger.com2tag:blogger.com,1999:blog-3046343230322086330.post-29995375520105871632014-10-20T22:45:00.000-07:002014-10-20T22:54:37.174-07:00NHS Wales: Problems either side of the divideSo a certain paper has in their eternal wisdom decided to do a week long “investigation” into lets bash NHS Wales for a laugh.<br />
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In my honest opinion I can’t see that this is going to be anything more than cheap political point scoring & an attempt to imply that similar issues can’t be seen within NHS England.<br />
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This however isn’t to say that there aren’t issues within the Welsh NHS system, I live through these issues & use many different services. Just one issue is not being able to rely on appointments & procedures to be scheduled when they should be & having to constantly chase things up which adds additional stress that could be avoided. And this is just one of the problems I have encountered & myself & my partner will be contacting those who need to know further to try & address these failings.<br />
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However, throughout the whole of the NHS there are failings but there are also services that are under the most intense strain in modern times, are struggling to provide the best for their patients & often succeed by relying most often on the dedication of the staff in those departments. So often we condem a whole hospital or a whole system on the parts that are failing instead of acknowledging the good parts & correcting the failings. In so doing we will only manage to further alienate staff that are doing a great job, in difficult circumstances, that the NHS desperately needs to keep hold of.<br />
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I also can not see nor believe that the failings within NHS Wales would be fixed by wasting billions in top down reorganisation which even senior tory party heads have agreed was a bad decision. There is also no mention about the continued underfunding to the Welsh Assembly, the difference in demographic, geography or that patients have been sent across the border for specialist treatment for years & NHS Wales funds them.<br />
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Usually NHS Wales patients have been sent across the border because of the intensive resources needed for a specialist centre would have made it a much more expensive option for a centre to run in Wales. For example if a minority need the specialist service it can be more viable to share facilities. However there are cases where a specialist centre has been put off when a need has been identified. <br />
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This isn’t however just seen in Wales. Specialist centers are highly resource intensive so centres can often serve people from outside the hospital’s trust with patients having to travel to other trusts for specialist treatment.<br />
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The simple fact is that parties are using the NHS for political point scoring as they have done for many years. That by looking at reports from the Welsh Assembly & other media coverage, the Data actually says Wales fared better than the English NHS system whereas other data contradicts this. So often data can be taken out of context or isn’t extensive.<br />
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In my honest opinion the only reason that the NHS Wales system has been attacked is because the Welsh Assembly has a minority Labour government & Westminster wants to "prove" that the Welsh NHS system has fared worse than the English. By bashing Wales it only stands to harm England as well as it attempts to brush over the major failings in NHS England.<br />
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Inherently the Welsh & English systems face different challenges. Both systems have issues & political point scoring is damaging & serves nothing more than to detract from real productive changes being made within the NHS. Its time that parties took a step back, looked for a longer term strategy for the NHS & that patients where the core focus. At the end of the day patients deal with the problems & use the service. These patients know what they truly need, what is wasteful & what works. I also urge MPs & AMs not to pander to the papers or create spin because this isn’t going to help your constituents. Instead talk to people in your constituencies that use these services & understand what needs to be put right in each hospital.<br />
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When a AM is turning to Google to get information & opinion about the NHS in Wales instead of talking to the patients that use the system, there is something fundamentally wrong.<br />
<br />eGremlinhttp://www.blogger.com/profile/09258661016704838142noreply@blogger.com0tag:blogger.com,1999:blog-3046343230322086330.post-87517932055541324692014-10-12T17:14:00.000-07:002014-10-12T17:15:46.668-07:00World Arthritis Day: Arthritis & the extras.<div class="separator" style="clear: both; text-align: center;">
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So this is my second time writing a post for World Arthritis Day, an event that I never knew that I would be writing about, as many others would have never have thought they would do either & my first blog post can be found <a href="http://theegremlin.blogspot.co.uk/2013/10/world-arthritis-day.html">here</a>.<br />
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However, this year I thought I would focus on the often missed “extras” as many often see arthritis as just a disease that you have in your pension years that gives you “Creaky Bones”. When in a matter of fact that is only the headliner, the “star attraction” & there are many added extras that come with it & that these “extras” can vary from type of arthritis, down to the individual, with people experiencing the same disease quite differently.<br />
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For myself personally, I have Psoriatic Arthritis (along with other conditions) so I will be referencing my experiences & my specific type of arthritis. <br />
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As well as inflammation affecting the joints, there can be inflammation affecting the ligaments, cartilage, other tissues & even an individuals organs. I often have inflammation affecting the muscles & cartilage in between my ribs & have had many bouts of tendonitis (inflammation around the tendons). I’ve also have had bursitis which is inflammation of the synovial fluid in the joint, none of which did I know could happen when I was first diagnosed.<br />
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Also a major factor is fatigue & this occurs due to elevated levels of inflammation in the body.<br />
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The best way to describe it to someone who doesn’t have the disease is to think of the worse bug you have ever had & how exhausted you felt. You were exhausted because your immune system is going into overdrive fighting the bug (so obviously hence why you're tired) & when someone has psoriatic arthritis, their immune system is overacting but with no infection present.<br />
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People don’t know exactly why the immune system is overactive, the general consensus is that it’s likely caused by a genetic fault &/or triggered by an infection.<br />
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Because my immune system is overactive, I have to take a drug called Humira which is an anti-TNF to suppress my body's immune response, thus lessening the inflammation. For some people they find that it halts the active inflammation & for others a level of inflammation remains which seems to be what has happened in my case.<br />
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I take my Humira with the use of a subcutaneous injection (didn’t think i’d be doing that) & as a result of the medication it means that i am immune compromised, didn’t think that would happen either. Obviously, when you're immune suppressed you're more susceptible to infections & this unlocks a whole new level of possible sucky extras. There is some suggestion that people with arthritis may experience added dental problems & for me this has certainly been the case where I had some dental work completed & all seem successful.<br />
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However, it is believed that a small gap had remained & due to my immune compromised state, a cyst formed which later became infected. Due to the infection I had to come off my arthritis medication in order to not compromise my immune system further. However this meant my arthritis was uncontrolled for 6 months whilst my dental cyst was diagnosed, treated & I recovered. As a result of being off my medication for that period I now experience pins & needles in my feet & legs which they think has happened because of damage caused from high levels of inflammation in my system. I am currently awaiting nerve tests to confirm the cause & extent of the damage.<br />
<br />
This only briefly highlights some of the issues that I have experienced, one individual with one type of arthritis & is by no means the complete story. Many won’t experience what I have, they may experience different symptoms depending on the type of arthritis but I am writing this to highlight that arthritis isn’t as simple as just “Creeky Bones” & is still greatly misunderstood by the general public. <br />
<br />
It’s not surprising when there are between 100 & 200 different types of musculoskeletal conditions depending on reference cited & many people still view it as a disease of that you get in your elder years. People still don't understand the great impact arthritis has on someone’s health & they often miss how complex a disease arthritis is & that although you may not see an effect outwardly, it can have a deep effect on the individual.<br />
<br />
The public needs to be made more aware of the complex nature of arthritis so that to better understand some of the difficulties someone with arthritis may face. To also understand that there needs to be more research conducted & that arthritis research still receives markedly less in funds than other conditions. There also needs to be a more inclusive nature in the campaigns that arthritis charities conduct, as too often they focus solely on older people with disease & when charities do focus their campaigns, they are often at children & teenagers, often missing those in between. This will help to change peoples’ perceptions towards those that are not elderly & have arthritis & may also help with some of the hostility that often these people may face. <br />
<br />
Finally if there is anyone reading this that has been newly diagnosed with arthritis, don’t freak out. I know that is harder said than done but arthritis is really very unique to each individual & often people don’t experience the complications I have. However, I have no doubt that it won’t be as you expect & my best advice is don’t panic, don’t think you’ll get everything & become as informed as you can.</div>
eGremlinhttp://www.blogger.com/profile/09258661016704838142noreply@blogger.com0tag:blogger.com,1999:blog-3046343230322086330.post-42845031359765564432014-09-22T07:08:00.000-07:002014-09-23T08:01:53.715-07:00So ass pinching isn't OK?(Trigger Warning: Sexual harassment)<br />
<br />
So a YouTuber recently has made a "prank" video where he pinches random girls asses. Now this is never ok to do either to a man or a women without permission but especially to people that you don't know.<br />
<br />
Thankfully the YouTube community have been on the ball with many YouTubers voicing their concerns & outrage to this video, which included composing a <a href="http://lacigreen.tumblr.com/post/98083811325/an-open-letter-to-sam-pepper">Open Letter</a> which many have signed. Also viewers & the general public on the whole have been quite understandably upset about this video & appalled by it especially as this doesn't seem to be an isolated video from this particular YouTuber.<br />
<br />
But then there will always be some (there always is) that have views from the past that should have stayed there & you will always have trolls coming out from under their bridges baiting them on.<br />
<br />
So here is the tone of some of the negative comments so far.<br />
<br />
People saying "Don't be such a crybaby hes only pinching girls asses, its harmless"<br />
<br />
Well, no its not.<br />
<br />
You have no clue what it happening in those girls' lives. Any of them could be being bullied, have had experienced sexual abuse trauma or be in a violent relationship.<br />
<br />
"The girl was laughing she saw the funny side!"<br />
<br />
Erm, no that laugh is an uncomfortable one, it's a laugh of "Did this really just happen? Is this guy serious?" It's a laugh when something so socially unacceptable is thrown at you & your brain needs a second to work out what the hell has just happened.<br />
<br />
Then reading further down the comments we go into more uncomfortable territory such as to include comments like "She shouldn't dress like that". I shouldn't have to repeat that the way a women dresses means nothing more than she like likes that outfit & is not a pretext to anything else.<br />
<br />
And this is what I would like to address, what he did was wrong, that's plain to see but what it causes can be far reaching. It causes a ripple affect & this can be even seen throughout the comments. The trolls undoubtedly come out but there are people pushed on by the trolls. As soon as sexual harassment like this is normalized as "OK", it's a slippery slope downwards.<br />
<br />
As for the YouTuber in question, the best advice I could give him is own your mistakes. Everybody should have the chance to & stop burying your head in the sand. Personally if I were you I would pull the video & donate the money to a charity on sexual harassment & abuse, let something good come out of it.<br />
<br />
And for anyone that watches his YouTube video & wants to comment back on any of these negative comments, try not to (I know it's hard). Report them instead because the more people that comment on those negative comments will push the negative comments up & all the outrage will be washed out of view by the sexist & troll comments at the top. YouTube needs to fix this but that is perhaps a topic for another time.<br />
<br />
<span style="color: #134f5c;"><b><u>Update</u></b></span><br />
<span style="color: #134f5c;"><b><br /></b></span>
<span style="background-color: white;">Since the YouTuber's first video was posted it has now been removed for violating YouTube's terms & conditions & their channel was briefly suspended. Since the first video was uploaded two successive videos have now been uploaded. The second where it was with a woman pinching mens' asses & the third video where the YouTuber explains that the videos were a "social experiment".</span><br />
<br />
eGremlineGremlinhttp://www.blogger.com/profile/09258661016704838142noreply@blogger.com0tag:blogger.com,1999:blog-3046343230322086330.post-46289089830150467042014-09-18T10:24:00.000-07:002014-09-18T10:30:59.128-07:00A Welsh opinion on today's vote on Scottish independence.I was born in England next to the border with Wales, have ancestry from both Scotland, England & Wales but for me personally I have lived longer in Wales,, love Wales and consider myself Welsh first & British second.<br />
<br />
I’ve been following the debate I have seen both the English & Scottish point of view, the views portrayed by the media and the views of my friends on both sides of the border. <br />
<br />
Unsurprisingly the Better Together campaign has seemed at the very least patronising at times often resorting to fear mongering about issues that shouldn’t even be issues. Issues that have been made out to be impossible to work around when plenty of new countries have found solutions to these problems with relatively little fuss. This wasn't helped by Westminster refusing to confirm their position on a yes vote, bringing uncertainty that isn’t needed. And now in the later stages we have bribery, more funding promised instead of giving people guaranteed policy change if there was a no vote. It also doesn’t help prove that you will follow through with your promises when in the next breath your backbenchers swear to reject it. <br />
<br />
The thing is England still thinks along similar tones as it once did in the days of Empire & often doesn't realise how things said can come across badly & how often the Welsh & Scottish people can be treated like second class citizens.<br />
<br />
We get our money given to us like an allowance & when we have different priorities like free prescriptions & free or subsidized education you moan. that its not fair. Its not fair that England has to pay what it does, we agree but thats why we have prioritised money for these, we don’t get any extra money for this, we just spend it differently.<br />
<br />
Also people may feel differently if Scotland was represented better in Westminster but how can they? They did not vote for this government that has imposed some of the harshest cuts in recent times & it doesn’t represent the majority of Wales either with only eight Welsh Conservative MPs sitting in parliament. <br />
<br />
Wales achieved full devolution in 2011. I know that there were many in Wales who as well as voting for devolution to have more control over policy, also voted for devolution for a degree of protection from Westminster. The ability to lessen the impact of the cuts just a little. <br />
<br />
Also devolution makes sense. For example planned changes in NHS England to make up to half of NHS A&E departments specialist units wouldn’t necessarily work for Scotland & Wales with countries that have fewer hospital’s & more space in between them. With small community hospitals that are sometimes the only provision for 2hrs + in any direction, they become a jack of all trades to serve the community. Although Scotland & Wales have lost some of these hospitals it would have even made less sense for a minister in London to make the decision when he or she can get to a hospital within mere minutes.<br />
<br />
Furthermore when Scotland's Parliament (Pàrlamaid na h-Alb) asked for Westminster ministers that included Ian Duncan Smith, Ester Mcvey & Lord Freud to come to the Scottish Parliament to answer questions at the Scotlands Welfare Reform Committee the ministers seemed to refuse. This included Ester Mcvey agreeing to meet ministers “informally” but not appear in front of the committee in the same way that she can be summoned to Work and Pensions Select Committee at Westminister. This just screams of a lack of respect, no MP wants to be dragged in front of a committee to answer questions on what their department has done but if you want Scotland to feel that Westminster thinks about & cares about what the people think & that you treat them as equals, you should treat their committee in the exact same way as its Westminster cousin.<br />
<br />
For me personally I don't want the United Kingdom split up but we can’t stay with the current model of the union which was made in days before & during the empire. It is modelled on a system that fundamentally doesn’t treat people equally as it comes from the days of the conqueror and the conquered. The only way to keep the union in the long term would be to change together as equals & that involves compromise which I don’t think Westminster still really wants to do. The union could continue but not in its current format, countries like the USA & Switzerland show there is more than one way to do it but things would need to change.<br />
<br />
You can see that regardless of the outcome of today's vote that people want their own voice. Many in Cornwall want there own parliament as Scotland & Wales has & the Cornish people have only recently been officially recognised as a minority people too.. There have also been calls for Yorkshire to have their own parliament as well. <br />
<br />
I don't want to see Scotland leave but they deserve the right to self determination. I know there are risks for them leaving but there a risks for them staying. For us I think that if Scotland leaves there is the possibility that we will see harsher times as the Government clamps down further with knee jerk decisions & ill thought out plans in response to independence. (which I hope wouldn’t be the case). I also think that the Welsh independence movement will grow (it already has with the Scottish vote) but our Assembly is younger, we need stronger industry & we still have a way to go.<br />
<br />
For Wales & Scotland we are Celtic siblings along with Cornwall, Ireland & the Isle of Man, as well as Celts on other continents. The Celtic link will never be broken whatever happens & we have a strong identity & a strong culture of our own. But people suggesting that if Scotland votes yes for independence that they will lose their shared history with the rest of the British Isles including England is nonsensical. That history will be there for better & for worse Scotland is just deciding today on what the next chapter will be.<br />
<br />eGremlinhttp://www.blogger.com/profile/09258661016704838142noreply@blogger.com0tag:blogger.com,1999:blog-3046343230322086330.post-58632164076599212292014-08-21T18:23:00.000-07:002014-08-21T18:33:12.424-07:00The ICE Bucket Challenge & Drug Creation<div class="separator" style="clear: both; text-align: center;">
<iframe allowfullscreen='allowfullscreen' webkitallowfullscreen='webkitallowfullscreen' mozallowfullscreen='mozallowfullscreen' width='320' height='266' src='https://www.youtube.com/embed/h07OT8p8Oik?feature=player_embedded' frameborder='0'></iframe></div>
<br />
So many of you may have seen the Ice bucket challenge going around on the internet recently. For people that don’t know its in aid of raising money for a charity ALSA who support people with ALS (Amyotrophic lateral sclerosis) or other wise known as Motor Neurone disease in the UK.<br />
<br />
Motor neurone disease is terrible.<br />
<br />
The reason that I have chosen to share this video is that it shows someone whose family has been deeply affected by the disease & shows a glimpse of their reality. And the main factor that touched my heart, that I know too well is that he says:<br />
<br />
"I’m not profitable….I’m not worth saving"<br />
<br />
& the shit thing is pharmacy company’s will manly only invest in the creation of drugs if they believe that they can make a reasonable return, like any company. I often wonder if they had a patient in front of them, if they would feel different but at the end of the day they are a company & like any company they want to make a profit.<br />
<br />
The more well known a disease is like cancer, there is a much higher rate of drugs coming into the market but the rarer the condition, the less drug choices you have because there are simply not enough people affected to be deemed profitable, its not that it can’t be done.<br />
<br />
This is why we need to give opportunities for our universities to research & make affordable treatments for rarer diseases (which many do magnificent research anyway). It shouldn’t be the case that access to a broad spectrum of treatment is based on how common a disease you have.<br />
<br />
To help you realise how few new specific treatments are created for one of my conditions, psoriasis arthritis, the older type of medication, disease modifying antirheumatic drugs (DMAs), were mostly created in the 50s to 60s & of these there are five! <br />
<br />
Of the newer type of medications used today, biological response modifiers (anti-tnfs), there are also five & these began to be approved from 2002 onwards, so a 33 year gap between medical advances. This is for a condition that affects a much wider range of the population & although the rate of new medications has increased it is still low & this is why the more rarer diseases than my own need proper medical research. <br />
<br />
Everybody is worth saving<br />
<br />
So if you can donate please remember to donate to your local charities also & make sure that the charity is utilising funds correctly.<br />
<br />
MNDA UK Charity: <a href="http://www.mndassociation.org/">http://www.mndassociation.org/</a>eGremlinhttp://www.blogger.com/profile/09258661016704838142noreply@blogger.com0tag:blogger.com,1999:blog-3046343230322086330.post-63207300127566777342014-07-30T06:40:00.000-07:002014-08-02T18:12:14.023-07:00There will always be bends in the road (& in my bones)So, I haven't posted in awhile! <br />
<br />
Its not because I haven’t wanted to but as life does, it throws up bumps in the road that we can not foresee & everything can come at once.Top that with having a spoonie body & things can easily grind down to a halt.<br />
<br />
So, since my last post I have seen the duty rheumatologist (again!), as I have been experiencing pins & needles in my legs since my last flare. The rheumatologist thought it was either steroid diabetes or something wrong with the nerves due to the inflammation I had in my legs. So I’ve been tested for steroid diabetes & its not that so I’m now currently waiting to have nerve tests on my legs… sweet! (urgh)<br />
<br />
I’ve have also been diagnosed with another skin condition (my immune system hates me!!). So this means that although my psoriasis is now under control (thanks to my Humira) it is now being replaced with another skin condition, oh the irony!<br />
<br />
I’m grateful that my new Doctor is really nice but its been a pain in the backside trying to get appointments because the administration is so messed up. To top it off, I have to also have surgery, luckily it should be small. The bigger issue though is that I will have to be off my arthritis meds for two weeks before & six weeks after, urgh. So there goes my rheumy nurse’s wish for me to have a solid run on my meds. You see this is what a lot of people don’t understand, complications arise & people don’t seem to understand that arthritis is not just a dull ache.<br />
<br />
And then to end unfortunately my Dad passed away, I’ve left it until last to write about not because I don’t care, I really do but I just don’t know what to say really. He had been ill for awhile, not that that is a comfort & although things in my family haven’t been simple, many families aren’t simple, I do miss him.<br />
<br />
So yep! you get the general gist, its been a bit tough & this doesn’t even include tearing my shoulder muscle or computer problems etc. I’m hoping to start posting again soon but you can see why I haven’t <br />
<br />
So bye for now! eGremlinhttp://www.blogger.com/profile/09258661016704838142noreply@blogger.com0tag:blogger.com,1999:blog-3046343230322086330.post-4065597933319629392014-05-22T08:41:00.001-07:002014-05-22T08:49:15.346-07:00EU elections?<div class="separator" style="clear: both; text-align: center;">
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So it EuroVision!! Oh wait…..<br />
<br />
So today is the EU elections, not that a significant percentage of the population actually seems to care. By watching tv & the mainstream media, it would be easy to think that UKIP were the only party standing & that different opinions almost seem to not exist. However, this has seemed to be the status quo in recent years, that less care has been put in to include all sides of an issue, with some issues completely missed from the mainstream media. <br />
<br />
It is slowly getting better, more papers are picking up on important news stories that were once missed & Twitter, as always has stepped into fill the void. <br />
<br />
The main reason I mention this is because most of the general public doesn’t know what the EU exactly does, other than it costs money. Leaving out how racist some have been which I for the record do not condone, If you have a party that is telling the public these “facts” about the EU unless you research it yourself (a lot don’t) many could believe in what they are saying.<br />
<br />
In other countries kids are taught much more about how their government works. And when you are educated on something, you will come to care a lot more about it if it is lost, who is running it & if you want it changed. I think we need to educate on what the EU actually does. We rarely hear a mention of the EU (unless its an election), of debates from within the parliament. And when the mainstream parties don’t put anywhere near as much value on the EU elections as the UK general election it gives off the impression that not even the main parties give a monkeys.<br />
<br />
You really can’t complain, if you chose not to vote. Our inaction can aid things we don’t want to happen, more extremist parties will & do get seats. All I would ask of anyone is to please vote but research their policies for yourself & know what you're voting for. The EU is proportional representation, the little parties do get seats, even spoil your ballot. And for me personally what womens suffrage went through for the vote, it would be awful not to use it.<br />
<br />eGremlinhttp://www.blogger.com/profile/09258661016704838142noreply@blogger.com0tag:blogger.com,1999:blog-3046343230322086330.post-34836388810295755152014-05-02T14:27:00.003-07:002014-05-02T14:27:37.588-07:00#BADD2014: Things are not always what they seem<span>Please take a seat, sit back & tell me what you see?</span><br />
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<span><img alt="514_400x400_NoPeel.jpg" height="400px;" src="https://lh6.googleusercontent.com/43LYUA8o7rYpwWB-RqTxJMipI1o6Zx40u3mdDuX7wsBhbbqsNDIR24X9irvgr0D4R_lMuaq5_K17lWTU4zybspfP8lCeVHxnGjMv7ux0FlyDTAsJK0mgcYIMS7foqUnLDQ" width="400px;" /></span><br />
<span>You may see the same thing as someone else, you may see many things. </span><br />
<br />
<span>You see perception, is a funny thing. </span><br />
<br />
<span>Its not static, it is changeable & it is different for all
of us. Our experiences, personalities, history, the people in our lives
& our environment mold it, but it can also lie to us.</span><br />
<br />
<span>I have Psoriatic Arthritis, Hypermobility, Bile Reflux Disease to name but a few & I am also young. </span><br />
<span>So when I venture out into the outside world society perceives
that if you are young, in general you should be “well” but this isn’t
always the case. And this is the problem, no one fits perfectly into a
“box”, we are all unique, disabled or not. As a result, young people
with disabilities visible or not, often experience a great variety of
response when venturing outside from good to down right nasty. </span><br />
<br />
<span>I too don’t like putting people into “categories” but in the
spirit of saving time & to explain how society can perceive disabled
people, please bear with me.</span><br />
<br />
<span>There are people in society who are empathetic & quite
often have disabled friends &/or family & so understand more
than most how things are & are willing to give help if needed.</span><br />
<br />
<span>Then there are people who are oblivious to you or lack
knowledge. This isn’t necessarily purposeful, we all get preoccupied
with our own lives at times & if you haven’t come across a
particular situation you won’t necessarily react correctly. </span><br />
<br />
<span>Yes, often these people can be confused with those that just
don’t care because they sit in the disabled seats so they can have a bit
more leg room & don’t offer you the seat when you hobble on to the
bus, but often although they are looking at you, they are too
preoccupied with their own lives to notice those around them. This is
the same when I have had to use a wheelchair & have be stepped or
lent over.</span><br />
<br />
<span>This is however not ok, pre occupied or not so to these people please pay attention.</span><br />
<br />
<span>However often when they do spot you, they often ask questions
& as long as these questions are not just plainly rude or intrusive
most disabled people should be happy to answer them but if not please
respect that. I know there are some that aren’t & that’s their
choice but especially for those with invisible conditions, if we want
things to improve without the need to tattoo it on our foreheads we need
to communicate so that people can understand.</span><br />
<br />
<span>I have been asked many questions about why I’m using a stick or
I’m in a wheelchair. When they find out I have arthritis they usually
say I’m too young because its associated as being an “old age disease”
as most people don’t understand there are hundreds of musculoskeletal
conditions & even children can have it. I’ve even had people argue
with me that it wasn’t possible for me to have arthritis because I’m
young which is obviously not ok.</span><br />
<br />
<span>Then I, like many with disabilities have been given “advice”
which generally the rule of thumb is if you aren’t disabled yourself
best to leave well alone as not to offend. </span><br />
<br />
<span>It has ranged from the wildly misguided to plainly offensive.
With comments of have you tried glucosamine, to wrapping myself in
copper (copper bracelets, insoles etc), to have you tried exercise &
juicing. These won’t cure me, a healthy diet is always beneficial for
anyone but to suggest that it will stop my immune system attacking
itself is misleading at best & for some very damaging.</span><br />
<br />
<span>One particular topic which can also be offensive is when
talking about joint pain & an able bodied person says, “me too.” Our
pain is our own & it is significant to each of us but it is not the
same as my immune system attacking itself. Another is fatigue. Fatigue
is not sleepiness, it’s not “I’ve only had two hour’s sleep”. It’s
different for all of us but the most simplistic way I know to describe
it for someone with arthritis is, if you think of when you had the flu
or a really bad infection how drained you feel, that’s because your
immune system is elevated trying to fight infection & for someone
with arthritis they live with a immune system that “flares” up far
greater than flu & a lot of other infections thus creating fatigue. </span><br />
<br />
<span>I go into more detail about my arthritis </span><strong><a href="http://theegremlin.blogspot.co.uk/2013/10/world-arthritis-day.html" target="_blank">here</a></strong><br />
<strong> </strong><span> </span><br />
<span>And lastly there are some people that just don’t care, have
prejudices of their own or have been influenced by the media & the
Government.</span><br />
<br />
<span>In recent years the news & media have become increasingly
biased, with certain newspapers writing a constant barrage of “articles”
involving a tiny minority of people who have misused the welfare
system. This in no way is representative of those who are disabled &
never mentions that not all of those with disabilities don’t work,
people do. It also doesn’t cover the difficulties that disabled people
face trying to get work & how support to help has been taken away
which Bendygirl mentions in her blog </span><strong><a href="http://benefitscroungingscum.blogspot.co.uk/2014/05/hard-working-species-striver-scrounger.html" target="_blank">here.</a></strong><br />
<br />
<span>Another example of how the disabled community is losing support
is DSA. A support scheme that is being striped to the bone. Because of a
misperception made from the use of a small survey of students that said
most students had a laptop upon entering university & so most will
now not be provided with one. Same with note takers & readers &
many, many more. As someone that studied in uni as my disability got
progressively worse & who is dyslexic, I can not see how this will
not make it even harder for disabled people to reach their full
potential & for it not to have an impact on the student’s health
with the extra strain imposed. This is not as simple as “you need to try
harder.” You can read more at Spoonydoc’s blog </span><strong><a href="http://loopys-rollingwiththepunches.blogspot.co.uk/2014/04/vital-disabled-student-support-to-be.html" target="_blank">here.</a></strong><br />
<br />
<span>The media & the government often dresses up welfare reforms
as something positive, that they will help more people & improve
peoples lives. But policies are mostly ill thought out, with support
being removed & more people falling through the net.</span><br />
<br />
<span>But as I have covered before, something doesn’t have to be true
for people to believe it, as long as it is repeated often enough,
history has taught us that of course this is going to skew peoples’
perceptions. You can see my blog post </span><strong><a href="http://theegremlin.blogspot.co.uk/2014/03/disability-thinking-for-two-more-seconds_10.html" target="_blank">here</a></strong><br />
<br />
<span>These “stories” have impacted the disabled community
significantly. From rude remarks to physical attacks. A common remark
heard all too often is “I know so & so who’s faking it” on the basis
that they see that person for a moment of their day. </span><br />
<br />
<span>Because of the media & the Government’s influence, at
present we have been told that there are many of these “scroungers”
lurking in every neighbourhood so perception changes & we try to see
what’s often not there, the two faces instead of the vase.</span><br />
<br />
<span>But rarely will you see the effort that it takes for that
person to go out & what the costs are. I’m not talking about
financial but instead energy & effort because disabled people still
want to do things they enjoy, like anyone but the difference is we will
pay for it like hell the next day. But because we enjoy it, regardless
of the agony we’re in the next day the enjoyment will keep us going
& make us feel normal.</span><br />
<br />
<span>But the rest of the time it is learning to pace yourself &
find different ways of going about it. For example blogging, I have
witnessed many a blogger being harassed, told they’re a scrounger &
they should be working but what they don’t understand is they only see
what is on their screen, the blog or the tweet but not what is going on
behind the scenes. People writing from their beds using their phones
& assistive software. Having to change position from their beds to
their desks & back again. And of course having no deadline so when
your condition throws a tantrum you can rest. Tweeting & blogging
connects us to each other & makes us not feel so isolated. </span><br />
<br />
<span>It has also been particularly hard for the disabled community
to be portrayed so badly but as a result of this distorted media, a new
type of activism has formed within the disabled community, knowledgeable
of the bias “news” that’s being reported we found a common bond. The
community listened to those affected by the most devastating “welfare
reforms” ever seen & over time produced their own reports (<a href="http://diaryofabenefitscrounger.blogspot.co.uk/2012/01/i-support-spartacus-report.html" target="_blank"><strong><span>Spartacus Report</span></strong></a><span> & <strong><a href="http://diaryofabenefitscrounger.blogspot.co.uk/2014/04/beyond-barriers-launch.html" target="_blank"><span></span><span>Beyond the Barriers</span></a><span></span></strong><span>) when the Government refused to. More of the media is taking notice & more people are seeing things for how they truly are.</span></span></span><br />
<br />
<span>It has made the disabled community stronger. However it has
also made a certain section of the community harder on others, people
saying things like “we must get on, we must not whinge.” I agree we must
be strong, however we must understand that there are people that have
just been diagnosed, they naturally want to be how they were before, its
a loss & they’re trying to work out how to manage their condition
& it’s as individual as we are So please, let’s be kind to each
other.</span><br />
<br />
<span>But to the rest of you, I would like to ask you to come to your own conclusions based on unbiased research.</span><br />
<br />
<span>So for last time I ask you kindly to look again & tell me what you see. Thanks guys :p</span><br />
<br />
<span style="font-size: x-small;"><span>Acknowledgements</span></span><br />
<span style="font-size: x-small;"><span>I would like to thank my dyslexic head for being a pain &
not deciding what it wants to write. I would like to thank there for
being so much stupid in the world that my head couldn’t decide what to
WRITE! It took me a long time to write it & my “mutant” body did not
want to co-operate so I’m sorry its late but this is how it goes some
times.</span></span>eGremlinhttp://www.blogger.com/profile/09258661016704838142noreply@blogger.com1tag:blogger.com,1999:blog-3046343230322086330.post-84887639843320015562014-04-28T14:20:00.000-07:002014-04-28T14:20:49.800-07:00One of "those" doctors<div id="docs-internal-guid-3ae69cf3-aa28-f20e-c384-80a30d436175">
<span>Yesterday
I read a blog post a friend had tweeted out about a Doctor in the US
that has a radio show & what transpired.(See link to Red Hairings
blog <a href="http://red-hairing.com/2014/04/26/an-open-letter-to-dr-drew-pinskey/" target="_blank">here</a>)</span></div>
<div id="docs-internal-guid-3ae69cf3-aa28-f20e-c384-80a30d436175">
<span><br /></span></div>
<span>For me he sums up one of “those” Doctors, that think so highly
of themselves & because they are convinced they are an expert, that
they don’t need to listen to what the patient is telling them &
instead come up with their own random conclusions. I think many with
chronic illnesses have met this type of doctor before & I am one of
them.</span><br />
<br />
<span> I have had Doctors not pay an ounce of attention to what I
have said because they have already made their own assumptions. I’ve
been ill in hospital & on several occasions had one of these bozos
show up, intent on not listening to a word I would say which
particularly on one occasion led to what the hospital calls an
“incident” which is code for messing up so badly it could have risked my
life. </span><br />
<br />
<span>Thankfully Mr Techie Carer insisted on a second opinion when I
just wanted to go home.</span><br />
<br />
<span>And thats the thing. If you’re in hospital especially in
A&E you’re likely going to feel awful & be in pain, couple this
with a doctor unwilling to listen & its easy to feel upset &
despair. And if you did get upset or cry it seems to validate what they
were saying to their mind. I have no doubt that people with mental
health issues face even further problems with the “its all in your head”
stigma.</span><br />
<br />
<span>But when Mr Techie Carer came into the picture & would meet
these type of doctors with me, they still wouldn’t listen but then he
would back up what I was saying or repeat it & suddenly what we were
saying was accepted. </span><br />
<br />
<span>I can’t help but think is the magic trick that you need a penis or two people??</span><br />
<br />
<span>This of course doesn’t work every time but usually in these
cases I have learnt to play the wait music in my head & tune them
out whilst they redirect all their doctrine at him (poor guy) & then
we ask for a second opinion from the other hospital because
unfortunately when they make up their mind, there’s nothing more to say. </span><br />
<br />
<span>I’m extremely glad of the support of my partner but people
alone & understandably overwhelmed shouldn’t have to go through
this. </span><br />
<br />
<span>However, saying all of this, there are some fantastic doctors
like my GP who always has time for you, listens & works with you.
These doctors are the ones that trundle away in the background, want to
get to the bottom of things, keep everything going & </span><span>don’t</span><span> call themselves experts. </span><br />
<br />
<span>And you may be an “expert” but we all have something we can learn.</span>eGremlinhttp://www.blogger.com/profile/09258661016704838142noreply@blogger.com0tag:blogger.com,1999:blog-3046343230322086330.post-30429844958349908852014-04-05T05:50:00.000-07:002014-05-25T12:20:18.475-07:00My spoonie self & shinanigans<img alt="image" height="283px;" id="docs-internal-guid-443fc7a0-31ec-7d0a-67cc-800d550c34a2" src="https://lh4.googleusercontent.com/DuYr5lxUYH5eiCstAb2bBefCSZjlarGllMF1IkJxwszTOoeC8fSyO6qlRH_uCNWJju7qREG72nw-K_DtxvgwKPc1Q2oo6bH3cLawKuygS5DNbVQIsyuayDwF3hnrpg" style="-webkit-transform: rotate(0.00rad); border: none; transform: rotate(0.00rad);" width="500px;" /><span style="background-color: transparent; color: black; font-family: Arial; font-size: 15px; font-style: normal; font-variant: normal; font-weight: normal; text-decoration: none; vertical-align: baseline;"></span><br />
<br /><br />This has summed me up recently. I have come to the ultimate realisation that baby gremlins have been slowly stealing my spoons over time & making off with them, little scamps.<br /><br />Well since my last update I'm still in a bad flare up, my arthritis has given my bones a heck of a beating but finally I’m back on my arthritis medication (Humira). I’ve always imagined Humira as a sweet guide/friend for my ever confused immune system, forever trying to steer it in the right direction & away from beating itself over the head with a frying pan.<br /><br />When I finally got the ok to go back on my medication, my rheumy nurse made me an appointment to see the Locum rheumatologist. Obviously they were concerned how my poor bod was fairing & thought it was likely I would need a steroid injection to calm down the inflammation until the Humira was back in my system again.<br /><br />He was a really nice guy, who had trained overseas & didn't agree with the UK system of steroid injections instead favouring tablets. I can understand why, its a logical argument as steroid tablets give u a balanced dose whereas an injection gives you a large dose that fades off over time.<br /><br />However, I was reluctant to accept the tablets as I was concerned about how my stomach would fare, as I had had tablets before & knew they could be quite harsh but he reassured me it would be fine. <br /><br />Sure enough it wasn't & I had to stop the tablets after bringing up dollops of blood as my stomach couldn't handle it. So I went to my GP & received a kind reprimand saying that "You know your body, you shouldn't be on them & not to take them again" & after all of that, I had the injection after all.<br /><br />A month or two later although the first injection helped, I was still in a flare so my rheumy nurse arranged for me to have another. I held off, wishfully thinking that my Humira would kick in but alas no & I had to admit defeat at my next appointment where she confirmed that I had bursitis in my hips. I can only describe feeling as like gremlins gnawing on the bone....painful. But even this wasn't enough & I had to have another, this time directly into the joint. We'll just have to wait & see if it works.<br /><br />I never thought when I was first diagnosed, that in my wildest dreams that arthritis would mean this. Oh how I lacked knowledge of what living with arthritis truly meant.<br /><br /><br />When most people think of arthritis, they think of "creaking joints" & being the equivalent of a human weathervane. But often people don't understand that it doesn't simply affect your joints & different types of arthritis affect people differently.<br /><br />I have Psoriatic arthritis & associated issues that people often don't know about include fatigue which is really common, that you are more prone to dental issues, tendinitis, inflammation in the eye & other organs to mention a few.<br /><br />There are often also complications due to medication like being immune suppressed, that can lead to infections & additional conditions along side AKA in my case having an infected dental cyst.<br /><br />Thankfully the wounds are healing up as they should after surgery & as I know I am more prone to issues, I'm going to be dragging myself to see my dentist more frequently despite how phobic I am & how much I want to hobble out of there as quick as I can!<br /><br />Also my awesome, if not a bit quirky Physiotherapist arranged for me to have thumb splints because my thumbs slip in & out of place due to my hypermobility, it can be pretty severe so hopefully these will help to stabilise my hand. It also doesn't help that because I had to be off my arthritis medication for over 6 months I now have damage in my right middle finger which along side my dislocating right pinky has made my right had pretty unstable.<img src="https://lh6.googleusercontent.com/bMCB4kGjhSvUgq-Ju1MGOiFOCIFEVzHMmk7wuc16yaj0-y7jSIBHxcsGWCqb1XqdIcnFoEDMzxz5gftlyTn_K2J8WuC210gt_tV8gO3fNPBJZhOEbbdTOqTvz3O8BA" /><br /><br /><br />Additionally I had to have a manometry pH test. Which first involves going off all the medication that helps you not be sick & then sticking a very uncomfortable tube down your nose & slowly bringing it back up whilst asking you at certain points to swallow sips of water. After this they remove the tube & “kindly” replace it with another which they leave in for 24hrs.<br /><br />The first test is to see how your throat is working. They found my throat squeezes too hard in the middle which explains why for me, bile randomly comes up of its own accord without me needing to cough or be sick (although that does happen) which doctors usually ask which is the case & are perplexed when I usually say neither.<br /><br />The other part is to see if there is acid reflux present which for me there isn't (which I knew) but the test did reconfirm bile reflux disease.<br /><br />And the other main thing I’ve been doing is sorting out my hard drive. Which is no mean feat given that due to my spoonie body I often haven't had the spoons to sort it & that it is filled with duplicate documents so it has got to the point that I really must. We also got a Western Digital wireless hard drive that I’m hoping will do the trick. <br /><br />I should be doing another post soon when the spoons allow, bye for now! <br /><br /><br /><br /><br /><span style="background-color: transparent; color: black; font-family: Arial; font-size: 15px; font-style: normal; font-variant: normal; font-weight: normal; text-decoration: none; vertical-align: baseline;"></span>eGremlinhttp://www.blogger.com/profile/09258661016704838142noreply@blogger.com0tag:blogger.com,1999:blog-3046343230322086330.post-11340285367822540282014-03-10T12:55:00.000-07:002014-03-10T12:55:32.277-07:00Disability - Thinking for two more seconds<div class="post_content clearfix">
<div class="post_content_inner clearfix">
<div class="post_container">
<div class="post_title">
<br /></div>
<div class="post_body">
Growing
up I felt very proud of my country, a country that after the war, after
going through so much, created the NHS & the welfare system because
it was needed & the right thing to do.<br />
<br />
Aneurin Bevan said on the formation the NHS that “despite our
financial and economic anxieties, we are still able to do the most
civilised thing in the world: put the welfare of the sick in front of
every other consideration.”<br />
<br />
And growing up this is how I felt my country was, that on the whole
we would always try to do the right thing, the moral thing. Later,
naturally I lost my child-like naivety, I know as a country we have got
it wrong but somewhere down the line the truth has been twisted, moulded
into something that is not.<br />
<br />
Certain sections of the media have perpetuated stories
unrepresentative of the majority, twisting stories to create
sensationalised headlines, backed up with manipulated statistics.<br />
<br />
Stories on “welfare reform”, benefit claimants with 60in TVs, of
disabled claimants that dare to step out of the house, even implying
welfare is somehow responsible for murder.<br />
<br />
And if history has shown us anything, if something is repeated often
enough, regardless of validity, people will start to believe it.<br />
<br />
As a result, media & public opinion have become so hostile in
parts that many disabled people feel guilty or feel that society expects
them to feel guilty, like they have done something wrong, whereas in
reality they have done nothing of the sort.<br />
<br />
And the thing is, why should any disabled person feel guilty?<br />
<br />
I have multiple conditions, none of them were my fault, it is rarely
anyone’s fault that they become disabled & it can happen to anyone.<br />
<br />
When using public transport, I’ve been glared at, muttered about
& verbally attacked because I’m a young girl sitting in the priority
seat with my walking stick in hand even though I’m more than entitled
to be there, just as any disabled person is.<br />
<br />
When I have gotten on & there are no seats, people will
automatically move for an elderly person that gets on. I have no problem
with that. When I was younger & able, I was brought up to offer
your seat to an elderly person if they got on & there are none
available as a matter of respect. My point is many a time an elderly
person has gotten on with better mobility than my own & they are
offered a seat automatically, but for me people will wait & stare,
the cogs in their head trying to work out, why does a young girl need a
stick, inevitably as I start to stumble someone else moves & offers
me their seat.<br />
<br />
My point is that some people believe that, of course an elderly
person will have mobility problems but a young person surely wouldn’t.
They either don’t fully understand how & to what extent young people
can be disabled, or believe what has been said in the media, that
benefit fraud is high.<br />
It has got to the ridiculous stage that people have even been berated in the media for having “nice things.”<br />
<br />
The amount of times I have heard people say “Well I can’t afford an
iPhone so why should they be able to get one,” is enough to drive anyone
insane.<br />
<br />
But people don’t take the time to think for longer than a second that
it may have been a gift, that it may have been bought before they got
sick, that they took out a loan for it or got it on the never, never.
Also often people don’t realise that many disabled people do work.<br />
<br />
They don’t think for a second that we all have different priorities,
you may go out 3 nights a week at £50 a go, whereas the disabled person
may not go out at all or very rarely & instead saves their money for
their contract phone of £40 which in comparison means they are spending
considerably less.<br />
<br />
People don’t think for a second that its their lifeline, their
contact with the hospital or GP, to friends or family, their ability to
socialise & keep up to date with the outside world which is
especially vital when enduring stints in hospital.<br />
<br />
People don’t think for a second how much technology is an aid for
people with disabilities & that this is only going to get bigger.<br />
<br />
An iPad or tablet for example is great for people that can’t lift up a
conventional laptop & need to move position & location during
the day. Voice dictation & predictive text software is improving
with every new update, helping people with dexterity issues such as
arthritis & hypermobility. Disabled people do so much with
technology, often using technology to complete tasks they can’t
physically do in real life.<br />
<br />
Another topic I have found people to obsess on is that people should
be given food stamps or their benefits on a government card that
excludes items such as alcohol & cigarettes.<br />
<br />
Firstly I will never understand how someone can become so obsessed
with making sure that people don’t have certain things & how they
find the energy to, but in countries that have adopted these systems,
they are always more costly to implement & a black market always
forms along side it.<br />
<br />
You also would be creating a level of stigma, a way to recognise
those who are receiving support & I often wonder if people want that
to make themselves feel better about their own lives.<br />
<br />
I have also heard people state that “unless you have paid something into the system, you shouldn’t get anything out.”<br />
<br />
So what about children born with severe learning disabilities &
disabilities? Or teenagers who are diagnosed with a disability? Tough
luck?<br />
<br />
Yes, some disabled people are able to work but others can’t, with
better systems in place & real support, it may be possible to help
more people in the future but I don’t think anyone should be penalised
because they were born disabled or developed a disability when they were
young before they had a chance to pay in. Disabled peoples’
contributions to society are too often dismissed if it isn’t through
paid work.<br />
<br />
People complain about what their taxes are spent on, I don’t think
that will ever change but in comparison to countries with mostly private
services, it is so much more expensive added together. Due to the type
of system we have, there is no profit made & as many pay in, it acts
like a group discount meaning that it is cheaper for all.<br />
<br />
People seemed to understand that although you may not receive
anything at the time, that it was there for if you were ever unfortunate
enough to need it or for any of your family or friends. I didn’t have
my disability or illnesses from birth, like most they came later in life
& it can happen to any of us.<br />
<br />
I think we are too quick to pass judgement, possibly more now through
the advent of social media.We used to think deeper about what we were
going to say, not to edit ourselves but to form a balanced opinion.
However I feel that when we don’t take more than a second to look
deeper, like with the media, inaccuracies & prejudices
unrepresentative of the majority will continue to be passed off as the
majority, This is only going to increase the toxic nature &
hostility towards people that require assistance & we should hold on
to some of our child-like instincts & embrace a balanced, factual
judgement.<br />
<br />
I can’t understand how people are attacking the most vulnerable in
this country, on a misguided belief that what a minority of the group
do, is some how representative of the majority but ultimately disabled
people in this country didn’t get us into this mess in the first place
& deserve support. It is also not that benefits are too high but
that people have different priorities & for some, wages are too low
in relation to living costs.<br />
<br />
And to the disabled people in this country, you shouldn’t feel guilty
as long as you have the conviction in your mind & in your heart
that you are doing all you can, you can’t ask for more. Disabled people
should no longer feel guilty for peoples’ inaccurate beliefs &
should no longer feel guilty because people aren’t thinking for longer
than two seconds.</div>
</div>
</div>
</div>
eGremlinhttp://www.blogger.com/profile/09258661016704838142noreply@blogger.com2tag:blogger.com,1999:blog-3046343230322086330.post-52452521111000273752014-02-19T05:33:00.001-08:002014-02-19T05:33:36.831-08:00Who cares about carers?I have heard many a time on forums & such people stating, why
should we pay a benefit to people for caring when surely if they care
& love the person in question that requires the care, they would do
it anyway?<br />
<br />
The thing is, yes they all would.<br />
<br />
Caring includes everything from round the clock nursing, to
completing some tasks & aiding the disabled person to do the rest
themselves, to being more of a personal assistant.<br />
<br />
It’s not about the grand sum of £59.75, if the short change that the
government pays to carers was paid to a care provider to instead provide
the ‘care’ it would equate to £1.70 an hour & I can’t see any
outside care company providing anything for that, no where near close to
the minimum wage.<br />
<br />
This you are only entitled to if you provide 35hrs of care, of which
there are many carers that provide way over this many providing 24hr
care, always on call with very little respite & others that provide
less & don’t get the “marvellous” sum of £59.75 but still care &
aren’t any less valuable<br />
<br />
Carers & the disabled people they care for don’t want pity mind
you. Although disabled people have some limitations due to their
disability, it doesn’t mean that they don’t have aspirations. By
completing the tasks that the disabled person can’t do or the tasks that
would take so much out of them, can mean the difference between the
disabled person just ‘existing’ & the disabled person being able to
concentrate on some of their own life choices whether this be working,
studying, arts & crafts etc. Disabled people in this country have
valuable contributions to make to society & their carers are vital
in enabling disabled people to fulfil their life choices.<br />
<br />
Carers also look after friends or relatives that are living with some
of the most challenging or terminal of conditions. For a carer to
slowly see their loved one taken by dementia for example must be
heartbreaking, to slowly lose someone you care about over time.<br />
<br />
People also don’t realise how heartbreaking it can be to watch
someone you care about so deeply go through pain & illness. I myself
always deal with a level of pain all the time, people often think how
the disabled person is dealing with their condition but often the
distress that the carer feels is often overlooked.<br />
<br />
Carers often see & face the hostility that disabled people have to contend with from certain sections of society.<br />
<br />
Carers are often the people that fight your corner for what you need,
often it can be when rushed to hospital & as you are too ill, you
no longer have the strength to argue yourself to remain in the hospital
for treatment (you would rather be in your own bed) as the Junior Doctor
fails to fully understand your condition & the gravity of the
situation & wants to send you home. Your carer fights your corner,
makes a “fuss”, insists on being seen by the registrar which when you
do, they apologise as the information you had given the Junior had not
been shared & now the registrar understands the gravity of the
situation & how serious it could have been. The carer had seen it
all along, this isn’t unusual.<br />
<br />
I always wonder were carers fit into the Conservative’s “Hardworking Britain ?”<br />
<br />
I detest this statement, what is your definition of hardworking?
Would a person that owns a multi billion dollar company be your idea of
hardworking because they make so much money? Would they still be the
ideal hardworking person if their company dumped chemical waste &
exploited their workers? Would they still be the ideal person if they
never saw their family?<br />
<br />
Just because a person may not make millions, does it mean that their contribution is any less?<br />
<br />
Hardworking has nothing to do with the amount in which you are paid,
some of the most important things that keep our society together are
done by people that get no or little financial reward. We must focus on
making a conscientious society & as well as a strong economy but not
one where the focus is on obtaining the biggest financial reward at any
cost to society.<br />
<br />
Carers are deeply under valued & unappreciated by the state but
they don’t care for people because the state tells them to, they see
they are needed & are valued enormously by the people they care for.
Our ability to care is one of the best aspects of humanity & if
carers stopped caring the cost to the state would be enormous. The fact
is that even with giving this small amount of £59.75 (too low in my
opinion) to the carers in this country, it is much more “cost effective”
than if the country had to employ an army of carers. It also means that
even a small amount can allow the carer a break & allow them to do
something they enjoy. Caring isn’t the same as looking after a loved one
that has the flu. Many people often don’t understand the effort that
people put into caring often the putting the person they are caring for
before themselves & often can’t have a ‘day off’.<br />
<br />
The thing is you can’t put a price on the care & support that the carers of this country provide<br />
<br />
Carers enable, carers are anyone. They are wives, husbands, sisters,
brothers, mothers, fathers & friends & regardless they will
always keep on caring.<br />
<br />
<a href="http://www.carersuk.org/">Carer’s UK</a>eGremlinhttp://www.blogger.com/profile/09258661016704838142noreply@blogger.com0tag:blogger.com,1999:blog-3046343230322086330.post-51458200283180215842014-02-05T18:01:00.000-08:002014-02-05T18:01:41.848-08:00The Big Benefits Row: Facts, fiction & a whole lot of yelling <div class="post_body">
The show began first with a montage of
multiple clips from the bewildering amount of benefit shows that have
been produced recently from it being mentioned in the papers, to the
news, in documentaries & through benefit bashing tv.<br />
<br />
The long & short of it is, the small percentage of fraud that
occurs is drowned in the sea in coverage it receives & I think this
is the single most important point that people don’t understand. This is
a trend that has been seen throughout history, that it is not
necessarily a reflection of the reality of the time but instead reflects
the attitudes of society which I covered a bit in <a href="http://tmblr.co/ZMGJ2x15dwobU">The evolution of benefit tv</a>.<br />
<br />
<strong>Question 1:</strong> “Do you think the benefits system is fit or unfit for purpose?”<br />
<br />
Apparently 66% believe that it isn’t.<br />
<br />
I’d love to know how many people actually know what support the
benefit system provides & how many voted unfit because they were
thinking instead about even with the countless forms filled in &
assessments people have, that many people found “fit for work” are
having their benefits reinstated on appeal.<br />
<br />
At the start you had <strong>Katie Hopkins</strong> as usual never
pausing for a moment to engage her brain before running her mouth. She
started as many have done on this topic trying to pass off prejudices
& stereotypes as fact but was pulled into reality by<strong> Mathew Wright.</strong><br />
<br />
Then Mathew Wright explained that they wanted to separate the facts from fiction.<br />
<br />
<strong>FACTS?!?!?!?</strong><br />
<br />
Excuse me while I wet myself in delight at a show that is presenting the facts instead of perpetuating myths further.<br />
<br />
Matthew Wright highlighted that tax evasion is far greater than
benefit fraud (with the resources dedicated to tackling this far lower)
& <strong>Annabel Giles</strong> spoke brilliantly even with Katie attacking her in a childish voice that she “wanted to be a model & didn’t make it”.<br />
<br />
Katie went on further about people having multiple children & was
quickly told it is a very small minority, not the norm. This was
followed with people on housing benefit living in posh neighbourhoods,
again not the norm & this was finished of with remarks about how
“hardworking Britain” had had enough of going to work & seeing
people staying at home, this being said without any thought to what the
person behind the curtain may have to contend with.<br />
<br />
<strong>Question 2:</strong> “Do you think the portrayal of people on benefits is fair or unfair ?” A close split.<br />
<br />
<strong>Peter Stringfellow</strong> like many doesn’t consider a
pension a benefit. He said that his main concern was the “abuse, not the
majority of people. I’m looking at people over there” (pointing to the
people in wheelchairs) “that deserve everything they can get”. But when
Mathew pointed out that the abuse was small he replied “Not it’s not
small.”<br />
<br />
I doubt that he meant just people in wheelchairs but people with
disabilities as a whole. However so often people don’t understand how
significant invisible & variable conditions are, how much people
struggle to walk on crutches or with a stick & the effort, pain
& discomfort they go through. This is particularity important when
people in the latter have to use a wheelchair to get around, this can
often be on occasion when their condition is particularly bad or
dependant on the situation. It can also be when they go out because
their condition is such that they can’t move quickly, safely or the pain
& exhuastion would be too much & can’t simply “hop out” without
a great deal of difficulty.<br />
<br />
Ironically this occurred just before the show when <strong>Sue Marsh</strong>
had to leave her chair outside then struggle up into the seats because
the disability provision wasn’t adequate. People often don’t understand
the effort it takes to do things that people take for granted & the
amount of time it takes from you to recover which Sue details in her
post about her <a href="http://diaryofabenefitscrounger.blogspot.co.uk/2014/02/the-big-benefits-row.html">experience </a>about being dropped from the panel & the lack of provision.<br />
<br />
Then there was <strong>"White Dee"</strong>. I thought she was either
going to blow her top or say her piece, keep quiet & let Katie
Hopkins tie herself in knots which she did beautifully.<br />
<br />
Annabel Giles pointed out, that if ‘White Dee’ was well & didn’t
have depression of course she would be working & Dee agreed. I can’t
understand why some people believe this is the “optimum lifestyle
choice” whereas in fact they have no choice at all because they are ill.<br />
<br />
<strong>Question 3:</strong> “Would you support or oppose tougher means testing & rules about claiming benefits ?”<br />
<br />
Apparently 66% were in support & I wonder greatly how many have
any idea how difficult, demeaning & time consuming the whole process
is.<br />
<br />
<strong>Rachel Johnson</strong> was a pleasant surprise, coming from
the point of not knowing much about her, she commented on the worryingly
high percentage of people being sanctioned on JSA & that for people
to get help from a foodbank they need a voucher to <strong>Edwina Currie</strong> to which she replied “only some of them”<br />
<br />
Matthew saw this as a great opportunity for <strong>Jack Monroe’s</strong>
opinion. It would have been nice to have heard more of what Jack had to
say, unfortunately Edwina was intent on childishly shouting her down.<br />
<br />
Jack explained that “You can’t rock up to a food bank & just ask
for some free food” but Edwina disagreed. Jack pointed out that she
works with the Trussell Trust, the biggest foodbank organisation in UK
which in order to get help you need a voucher.<br />
<br />
Then for some bizarre reason Edwina said they only run one & when
she’s asked if she’s ashamed that people beg for food, she says no.<br />
<br />
Jack started to make a reasonable point about the economy & bankers when she’s cut off again by Edwina.<br />
<br />
"You come from a rich family." Jack explains again, no she doesn’t.
"Yes you do come from a rich family," Edwina says with all the finger
pointing of panto.<br />
<br />
I had read that Jack had said these accusations had been happening
before the show & she said she wanted to say her piece which she is
more than entitled to do. She explained that her mum was a nurse, dad
was a fireman & that they were hardworking ‘blue collar’ workers.<br />
<br />
Edwina throughout Jack trying to speak made countless rapid
interruptions, to the point she spoke so quick at times you could barely
make out what she had said. It’s clearly obvious when you’re
interrupting someone like this you want to stop them from talking, bate
them & nothing more.<br />
<br />
Edwina continued with countless interuptions about how they both went
to grammer school….so what? Many a kid from council estates did also
& that it was Jack’s grandfather who was “rich”, that he was a big
property owner. By this point Jack, obviously upset, stated he had died
with Edwina stating that she knew because she had seen the obituaries<br />
<br />
Creepy.<br />
<br />
Even more so when you know that she had taken the time before the
show to search through Jack’s blog, to find a post she had done &
tweet it out before hand. It also shows that before the show she knew
she was likely going to bring up her grandfather, to get personal maybe
because she didn’t have any defence. She says she admires Jack but her
behaviour says anything but.<br />
<br />
Also because she wasn’t willing to listen she missed a vital point<br />
<br />
<strong>Jack is anyone</strong><br />
<br />
Jack didn’t come from an abusive family or a family dependent on
benefits. The government rhetoric is if you work hard & get on you
will be fine & in the unlikely case that you do fall, the system
will protect you but it doesn’t and in Jack it proves it. See Jack’s
heartfelt post about what she didn’t get to <a href="http://agirlcalledjack.com/2014/02/04/dear-edwina-thankyou-for-last-night-i-hope-it-was-as-good-for-you-as-it-was-for-me-bigbenefitsrow/">say.</a><br />
<br />
Next they played a clip of “On Benefits & Proud” featuring <strong>Emma</strong> & <strong>Sophie</strong>.
They explain the programme made them out to be something they’re not,
that the system has helped them a lot & no that it wasn’t a
comfortable existence.<br />
<br />
Yet again, Edwina interrupts “go & get a job” repeating it over & over.<br />
<br />
She then got a massive piece of her own medicine, the girl turned
around quick as a flash “gimmie a job, innit” repeating it over &
over. It reminded me of some Catherine Tate sketch that I couldn’t help
but be pleased to see on this occasion.<br />
<br />
<strong>Question 4: </strong>"Would you support or oppose new immigrants being allowed to claim benefits in the first year in the UK?" 76% oppose<br />
<br />
Weirdly there was applause from the audience. Often there has been,
in the same way as with benefit claimants a lot of stereotyping &
myths surrounding immigration issues which people believe including
those on benefits. Often pitted against each other, some benefit
claimants believe that the reason that they can’t find a job is due to
immigration.<br />
<br />
<strong>Owen Jones</strong> brought up points about bankers, tax
avoidance & the stereotyping of immigrants & the good that they
have done for this country is often over looked.<br />
<br />
I think the issue of immigration needed to be on a separate show
(which Channel 5 are apparently going to do) as it felt squeezed on to
the end, they didn’t have enough panellists to have a proper debate or
the time & like with welfare it is yet another issue that has been a
used as scapegoat topic.<br />
<br />
The fact that they presented facts at the start of the programme was
uplifting, I think it is truly disturbing how many programmes are aired
with no reference to the actual facts of matter but instead just help
perpetuate myths further.<br />
<br />
There wasn’t enough time to address everything in the detail that it
needed to be. A 45 minute show can’t undo the countless months of
government opinion, tabloid “news” & benefit bashing tv, much more
is needed to get to that point. People didn’t understand or want people
like Katie Hopkins & Edwina Curie up there but the fact of the
matter is it’s exactly people like Katie & Edwina that are helping
perpetuate myths further because they either do not care about the
people affected or that they don’t understand that things that they are
annoyed about are myths or don’t represent the majority. When you put
people like Katie & Edwina on a show like this against people that
know their facts, they show themselves up to be the narrow minded people
that they are….as long as people can speak that is.<br />
<br />
Fleetstreetfox’s article on her <a href="http://www.mirror.co.uk/news/uk-news/big-benefits-row-live-night-3110786">experience</a><br />
<br />
Owen Jone’s article on his <a href="http://www.independent.co.uk/voices/comment/owen-jones-on-the-big-benefits-row-the-hopkinsisation-of-political-discourse-9106227.html">experience </a></div>
eGremlinhttp://www.blogger.com/profile/09258661016704838142noreply@blogger.com0tag:blogger.com,1999:blog-3046343230322086330.post-31898651888784485812014-01-27T13:38:00.000-08:002014-01-27T13:38:14.606-08:00Evolution of benefit tvIn recent years there seems to have been a greater focus on
programming that covers topics that involve illness, disability &
social deprivation.<br />
<br />
It’s not a new phenomenon, these types of programs have always popped
up from time to time & it’s well known that what the media shows us
of these times may not be the reality but often will instead show the
attitudes of society.<br />
<br />
I’m very divided on these shows, I love documentaries, I will watch
documentaries that are controversial & opposite even to my beliefs.
The reason why, is that I firmly believe that the instant we cut
ourselves off from knowledge, from the possibility that we may be wrong,
we will never learn anything new.<br />
<br />
I know that some people didn’t like the way that these shows had been
filmed, I know these ‘shows’ have ranged vastly from benefit bashing tv
made solely for entertainment to valuable insights to what the disabled
& disadvantaged are facing at that time but also the public’s
perception.<br />
<br />
Unfortunately through over reporting of certain issues, certain
sections of the media have given the false impression that fraud is
rife, that there needs to be a crackdown on the ‘wave’ of benefit cheats
but ‘real’ disabled people will always be protected. Unfortunately
there is also a further section of society that believe that benefits
should only be given to the ‘housebound’ because if people can get out
of the house then why don’t they get a job? People don’t understand how
exhausting it is to function as a disabled person & that no two are
alike. They look at the surface & no deeper.<br />
<br />
I know that some didn’t like Channel 4 referring to Paralympic
athletes as ‘Superhuman’. It has unintentionally, to a degree resulted
in people becoming more misguided, believing that Paralympic athletes
have got ‘passed’ their disabilities because they were just more
determined to succeed. Whereas in reality these Paralympians rely
heavily on support behind the scenes & benefits to get them where
they are. And that it’s not because one simply tries harder but more
that a disability can effect many individuals, in many ways & not
even to mention the fact that disabled people may not want to do
athletics but instead may be a talented writer or artist. I still
however think they are awesome for what they do.<br />
<br />
I really enjoyed The Last Leg, the hilarity & stupidity of
things. I loved how the show tried to engage with people with the show’s
“Is it ok ?” questions such as “Is it ok to punch their friend in a
wheelchair if he’s a n00b ?”.<br />
<br />
Then you have 999, What’s Your Emergency, that highlighted
beautifully how much strain the ambulance service is under & how
much more it will be in the future due to the significant NHS &
welfare cuts which will mean that even more people will likely fall
through the net.<br />
<br />
But unfortunately any good work that is done on one show can be undone on the next.<br />
<br />
BBC’s Saints & Scroungers always shows two cases of benefit fraud
to the one ‘Saint’ helping those to get the benefits they need.
Although it is great that these people help in times of crisis, there is
no disclaimer to explain how low the rates of benefit fraud are &
that the show’s ratio is in no way representative of actual statistics.<br />
<br />
Then you have Channel 4’s programme “Benefit Britain 1949”.<br />
<br />
Now I’m ‘sure’ that Channel 4 were trying to show that the welfare
budget can’t be carelessly cut & that people have been & are
being affected by cuts detrimentally. That although the original system
was much more tailored towards the individual, a good thing, it was only
supporting those they deemed ‘deserving’. Unfortunately when reading
peoples’ reactions to these types of programmes on Twitter, this is a
theme that keeps cropping up. Unfortunately I think this show whilst
trying to show why we had moved on instead gave more titbits to those
that believe all the inaccuracies.<br />
<br />
Also it was a different system to today, a different time,
society isn’t the same & so consequently, it was often out of
context. I also found it odd that the show split the claimants into
‘sickness’ & ‘disabled’ categories as often these go hand in hand.<br />
<br />
Yes, it did not help matters that the sickness claimant came across
as little miss gobby, very rude & aggressive, hardly the average
claimant but this may have come across a lot worse due to editing.
However I can not stress how much my heart sank when I saw how people
with less visible illnesses were being portrayed through this women.<br />
<br />
It’s a shame that they didn’t chose someone else that could have
highlighted truly how debilitating a invisible condition can be, as this
is something that it seems the general public fail to understand.<br />
<br />
Then there was the programme ‘We Pay Your Benefits’ which saw tax
payers following claimants to more or less ‘judge’ what they feel is
acceptable for people to buy & do using their benefits. People now
have obstinate objections to people having mobile phones, internet &
family pets. These previously weren’t seen as a luxury with the
exception of probably family pets but people seemed to understand that
people mostly had family pets before becoming unemployed &
understood they were a key part of the family & a massive comfort.
Also mobile phones & internet were seen as a necessity & now
people believe that they are a luxury. It seems so illogical in this day
& age where mobile phones & internet are such an integral part
in life that people can think this way. I found it sad that people seem
to have lost sight that the system we have supports the people in our
society who need it the most, that it is there for them in case the
worse did happen & that fraud is low.<br />
<br />
And finally we have Channel 4’s ‘Benefit Street’ which if you were to
believe was typical representation of people claiming benefits, which
by the looks of Twitter a lot did, the majority of claimants would be
committing benefit fraud, shoplifting & growing cannabis in their
spare room to pay the bedroom tax. There were death threats after the
show on social media & the whole filming of the show lacked
responsibility. However it did highlight how you can’t just simply beat
people with a rod & expect them to change, people need opportunities
& the right help, but also some people just won’t change, that’s
human nature.<br />
<br />
The second episode showed immigration in the UK. It highlighted the
racism & the inaccurate beliefs like they can earn £2,500 a day.
However it also showed how immigrates without permission to work are so
easily exploited & how when they report this to the police, they
fear major retaliation but many people on social networking sites again
didn’t see this, instead fixated on inaccuracies.<br />
<br />
The third episode followed a young family with children. It portrayed
a young couple that seemed to struggle with parenting. Its not a
surprise that the kids behaviour was challenging when given a sugar
coated cereal at midnight, with one parent telling the other to f**k
themselves & ‘Fungi’ & other drunken idiots outside the front
door creating a bad influence. But because of the way this documentary
was filmed & because a proportion of society that seems to think if
they witness one thing happening on TV, that this some how means that
this is representative of everybody in the same situation. Just because a
child has either a single parent or young parents does not mean that
they’re not going to bring up their children correctly & the rest of
parents out there have just as much chance of messing up the child’s up
bringing or not as anyone else.<br />
<br />
The episode did also show that the couple was trying to improve their
child’s behaviour, although I doubt how much of the public remembered
that as much & a later article stated that the couple have learning
difficulties which isn’t mentioned in the show.<br />
<br />
I understand why people are upset about about these “documentaries”,
some are upset that documentaries on these topics happen at all, others
are upset that a valuable opportunity to highlight a issue has been lost
in favour of being exploitive & creating “entertainment” instead of
a documentary. In these cases they usually lack the full facts, are
shown out of context & people within the disabled community face the
backlash as a consequence.<br />
<br />
However if we don’t discuss these issues we will never move forward but
the public needs to be more aware that it is impossible to produce a
doumentary that isn’t bias in some way because the individual is bias
& that viewers should show more common sense & take these shows
with a pinch of salt. It is also up to film makers to always maintain a
level of detachment in making a documentary & to make sure, as much
as possible, that the topic is portrayed in a true & balanced light.<br /><br />
I think there were many failings in making Benefit Street,
particularly the disclosure of the actual street name which made these
people more of a target so much so that a number of the residents have
been moved. Also that it was made by an outside third party company,
that they obviously lost control over it but they had responsibility to
air it or not.<br />
<br />
With the airing of Benefit Street it has shown that certain sections
of the media have become so toxic over the subject of welfare but this
is only allowed to continue because people blindly believe in these
misrepresentations. If people on benefits & the disabled were
instead an individual, in certain countries I have no doubt that they
would be pulled up on slander or for liable way before now.<br />
<br />
The fourth episode airs tonight to be followed by a final episode
& TV debate which is supposed to let the participants have their say
unfortunately we will have to wait to see if this is a intelligent
discussion or if this becomes just more viewing fodder. <br />
<br />It has taken me a while to write this as I hadn’t intended on
writing this much in the beginning but have been adding to it little by
little as more and more shows have been produced. Originally it was
supposed to be on the first ones I watched but as time goes on there
seems to have been an increase in this type of programming & I
thought it interesting to note the effect of all these shows combined .
With this increase it seems like certain sections of the public have
lost sight that the fraud rates are low & that this system is in
place to assist in times of need, as it should be. They seem content on
judging on face value & not realising they don’t have the full facts
at hand, how would you like this if it was done to you?eGremlinhttp://www.blogger.com/profile/09258661016704838142noreply@blogger.com0tag:blogger.com,1999:blog-3046343230322086330.post-49915991980714284682014-01-03T01:37:00.002-08:002014-05-25T12:30:09.250-07:00Happy New Year<div class="post_content clearfix">
<div class="post_content_inner clearfix">
<div class="post_container">
<div class="post_body">
<img alt="image" class="toggle_inline_image inline_image constrained_image" src="https://31.media.tumblr.com/c92f650f167c796df4acff5f9fdc6e93/tumblr_inline_mypvtnslJb1qm9m6s.jpg" style="cursor: pointer;" /><br />
So welcome to 2014!<br />
<br />
2013 was a odd year, lost my bunny that hadn’t been well for a while,
we then got a beautiful mini lop that unfortunately passed away so
young but the short time we had with him was so precious. Then we have
our current mini lop Aslan who is so beautiful, even if he has issues (I
think he thinks he’s a puppy). He’s such a content bunny.<br />
<br />
Health wise it has been pretty poor, stomach bleeds which finally
lead to me being diagnosed with bile reflux disease. I have got further
tests to have on my stomach & throat & throughout the year
doctors have suspected a range of pain disorders including Fibromyalgia
to go along with the Arthritis, Hypermobility & such.<br />
<br />
Also as with every year I have had to deal with something that I know
I’m not alone with, that many people deal with the same but its also
something that many people don’t understand is an additional
complication in someone’s condition & how it makes a condition very
unstable.<br />
<br />
I have to take medication for my arthritis which means I’m immune
suppressed, this means that I often get infections, so then I have to
stop the medication, my arthritis flares up & the infection makes
this worse, I get over the infection then I have to restart the cycle
all over again.<br />
<br />
Its frustrating as you never truly establish a plateau level with
your condition but this for some is unrealistic & instead I’ve found
my efforts are best placed trying to learn to live with a condition
that is unpredictable.<br />
<br />
This year this has occurred many times but the main occurrence was
when I had to go over 6 months without meds, arthritis flared up pretty
bad & later found out that I had a cyst in my face resulting in
surgery.<br />
<br />
2013 was definitely a year of what’s next in politics, knowing that
some knee jerk reaction to put another poorly thought out ‘plan’ into
action at the last minute would happen in response to something someone
might have said or done & wondering how bad the fall out will be.
The years of knowing nothing would happen until the budgets are long
gone & it is sad knowing how much anxiety people are facing, knowing
that the rug may be pulled from underneath them at any time. How do you
relax? & concentrate on your health?<br />
<br />
I also found such a massively determined set of people that won’t be
silenced, that deal with a range of health problems & disabilities
themselves but know how important it is that the facts reach the public
and that people shouldn’t be scapegoated.<br />
<br />
I have my own ideas & wishes for the year ahead & have learnt
through the years that plans may get derailed or they may have to wait
as my spoonie body takes over however frustrating that may be but things
can get done with a little time & a lot of stubbornness.</div>
</div>
</div>
</div>
eGremlinhttp://www.blogger.com/profile/09258661016704838142noreply@blogger.com0tag:blogger.com,1999:blog-3046343230322086330.post-41936134867340076562013-12-21T10:05:00.000-08:002013-12-21T10:05:13.276-08:00Food banks, poverty & a parallel universeSo I watched most of the food bank debate. Not at the time as my bendy spoonie arthur body wasn’t playing ball.<br />
<br />
It was a sad sight to watch as Labour passionately recalled stories
of people, in desperate need in their constituencies. As Labour were
trying to make their point the coalition benches laughed, brayed &
tried to shout them down as they attempted to highlight the crisis that
is unfolding in this country, one of the richest countries in the world
where people are being propped up by food banks, charities as there
government continues to fail them.<br />
<br />
The coalition benches made the whole Charade feel like the Goverement
was implying that poor people are just darn stupid, we’re beating them
with this rod with all the welfare cuts & telling them to work so
why arn’t they? Their problems would be resolved. If they are at food
banks they deserve nothing more, it is of their own doing.<br />
<br />
The coalition further blamed people for poor budgeting skills but
didn’t understand that for many, when they reached the foodbanks they
have fallen so hard & so quickly & for others they have already
striped their outgoings down to the bone. If the end line is that you
need £60 & you only get £40, how are you supposed to win? Just
demonising people further isn’t the answer.<br />
<br />
Most of the coalition MPs come from much more privileged backgrounds,
that have never had to deal with these problems. These MPs live in a
world where they get a food allowance, expenses & subsidised bars.
They have never had to hardcore budget like the people that end up at
food banks do. They’re in a parallel world were they constantly live
with their fingers in their ears & take their party’s doggy
statistics on face value.<br />
<br />
The coalition put these policies in place & they’re just not
logical. If you speak to most, they agree that the system needed reform
but it needed to be fair, the coalition need to accept that there are
people that are just not able to work & that working isn’t the only
solution out of this kind of situation, that work doesn’t always pay
which can be seen by the increased number of people in work, forced to
rely on food banks as wages are low & commodities high.<br />
<br />
The coalition throughout continued to state that the food banks began
under the last government which is indeed true but the explosion in the
number of food banks under this government demonstrates how much policy
is not working & that the simple truth is, that if social policy
was better there wouldn’t be anywhere near the demand that there is now.<br />
<br />
If anyone agrees that its ok for people in this country to have to
rely on food banks, for children to be so grateful that they were given
chocolate because its one of the best things they have seen in a while
& that for the red cross to be doing its first appeal since world
war 2 for the people in the UK, then remember this; anyone can find
themselves in this situation & if you’re saying to yourself not me?
there have been many people before you that have said the same & yet
found themselves in a position they would never have seen coming.<br />
<br />
These MPs call each other honourable members, if this is honour, its not an honour I recongnise.eGremlinhttp://www.blogger.com/profile/09258661016704838142noreply@blogger.com0tag:blogger.com,1999:blog-3046343230322086330.post-24691236146829379422013-12-14T07:44:00.000-08:002013-12-14T07:44:25.982-08:0017# Weekend cute, humour & awesome<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEigSYfpZjCxAr4aUcPQtnci6ZFZBsSueQZ06L6z6w1PaXDH3qe2xlc1YsHK2PeVvT6fLrf5mnF22ORSH6NOV8plvyWI8vJhtYYAnRgHTLtkV7Y65crG0lZDCxXmDTyMEqhDe8H8HFMnITIv/s1600/993471_622418221155984_675435820_n.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="181" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEigSYfpZjCxAr4aUcPQtnci6ZFZBsSueQZ06L6z6w1PaXDH3qe2xlc1YsHK2PeVvT6fLrf5mnF22ORSH6NOV8plvyWI8vJhtYYAnRgHTLtkV7Y65crG0lZDCxXmDTyMEqhDe8H8HFMnITIv/s320/993471_622418221155984_675435820_n.jpg" width="320" /></a></div>
For everyone that feels this way this week.<br />
<br />
My body has not wanted to do anything & hasn’t co-operated at all
due to my arthritis flaring up & my hypermobility playing up. Don’t
get my started on my stomach >.<<br />
<br />
Hope everyone has a brilliant week to come<br />
<br />
(I do not own the images but respect the awesome)<br />
<br />eGremlinhttp://www.blogger.com/profile/09258661016704838142noreply@blogger.com0