Showing posts with label illness. Show all posts
Showing posts with label illness. Show all posts

Tuesday, 10 March 2015

The 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.

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.

First was a women in need of a breast reduction. 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.

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.

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?

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.”

Cost of Breast Reduction £4,000
the examples given for the money spent elsewhere
1,000 inhalers for children with asthma
6 Weeks of Dialysis
100 GP visits

Next patient Mark, who has alcohol related liver disease and needs a liver transplant. 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.

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?

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.

Cost of a Liver Transplant £73,000
the examples given for the money spent elsewhere
A nurses salary for 2 years
9 Hip replacements
40 hospital beds for a week

The third, Barrie, has Dementia and his wife and carer Ros wanted access to a specialist Dementia nurse 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.

Cost of a Dementia Nurse £375 a year
the examples given for the money spent elsewhere
2 Meningitis B jabs
2 ambulance call outs
19 blood tests

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.

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.

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.

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.”

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.

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?

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.

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.

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.

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.

Sunday, 13 October 2013

World Arthritis Day

I thought I would write a post as yesterday 12th Oct was World Arthritis Day & I thought I would write a little about what I have & what I experience living with this condition every day.

My diagnosis

I struggled tremendously to get diagnosed, it took years. I started experiencing mild niggling symptoms when I was about 15 on & off until I was about 18 when the symptoms got much worse beginning in my knee. I was sent to see a physiotherapist by my doctor at the time, as I had a golf ball type swelling on the top of my knee & he was the first to suggest & was convinced that I had arthritis. So off I went back to the doctors to tell them what he had said but they were convinced that I was far too young to have arthritis. In the end they conceded enough that they agreed that there may be at least something wrong with the mechanical side so sent me to orthopedics, one MRI later & they confirmed that it was arthritis.

1. You’re too young to have arthritis & why do you walk with a stick?

I have had full blown arguments in the past with people that have argued, sometimes nastily, that I couldn’t possibly have arthritis because I was too young. Most people that have approached me, have thought that I walk with a stick because I must of hurt my leg in some way, they never think that its arthritis.

Unfortunately people are less aware that young children can have arthritis so it really affects people of any age.

2. What kind of things do people say when people find out I have arthritis.

Can’t they cure it? No at best they can manage it

But I’ve read that supplements, diet & exercise changes can cure it? Again no, although a healthy diet & low impact exercise (which not everyone can do) would help a little for people with inflammatory arthritis, supplements such as Glucosamine, diet & exercise isn’t a cure.

I’ve tried to think of the best way to explain inflammatory arthritis. I live with it & I’m still trying to understand it. But I’m going to try & explain it briefly

Inflammation occurs naturally when people are sick or injured, if you did a blood test some of the same markers may come up in someone with inflammatory arthritis but they would also have additional blood markers. Someone with inflammatory arthritis still gets inflammation if they’re sick or injured but their body also produces an inflammatory response that starts to attack the body affecting bones, tissue & cartilage. People experience an array of symptoms including pain, discomfort, stiffness & fatigue & scientists are still not certain as to why it occurs

This is in contrast to osteoarthritis which is degenerative & without the inflammatory response seen in inflammatory arthritis.

People with osteoarthritis still have pain & discomfort but that’s because there is damage present whereas with inflammatory arthritis the pain can be present even before bone damage has occurred as well as after.

This is why for example for some people with osteoarthritis, exercise to strengthen the muscles around an affected joint can help support it, whereas although it is beneficial to have strong muscles for someone with inflammatory arthritis, unless the inflammatory response is treated with medication, minimal benefit could be achieved and this seems to be where peoples’ misunderstanding lies.

3. So if you have a certain type of arthritis is everybody affected the same way?

You guessed it, Nope. I have Psoriatic Arthritis which some people may be affected quite mildly by but i’m one of the few that get affectef quite significantly. I also like many have additional conditions as well as my arthritis.

4. So what is it like dealing with your arthritis?

My day to day living - I have difficulty doing various tasks even personal tasks (that i’m not going into) but even being able to brush my teeth can be too painful because of my wrist, similarly with other tasks around the house. This also includes any task that includes sitting, standing or walking. Kneeling is out of the question.

Going out - For example you may want to go to an event so you book tickets & go. For someone like me you would need to….

Check accessibility. Are there seats? can they provide wheelchairs? if not, can we hire one nearby? what if there’s too many people & we start getting crushed? & then plan the travel arrangements & then back up arrangements & booking assistance for the travel arrangements & so forth.

Then additionally we have to deal with various GPs, Consultants, nurse & physiotherapist appointments & such & not just for my arthritis. It’s common for me to have three appointments a week but as my Gp said dealing with long term chronic conditions is like doing a full time job when you’re sick all the time.

I’m not going to go into more of the personal details of how my arthritis affects me because I have to explain so often to doctors & in forms that if I don’t have to I don’t want to :)

However, I am very thankful & lucky to have the support of my amazing fiancee & carer who helps me greatly.

5. How do people treat you?

People seem to fit into three categories.

The ones in their own bubble who don’t see you so may inadvertently walk into you or ignore you without knowing.


The people that do see you, may glare at you, muttering things at you or verbally assault you. Unfortunately these people believe the propaganda, that there is huge benefit fraud, that things are harsher for them because people are getting huge amounts in benefits & receive things that they don’t.
I think that there is a misunderstanding of  benefit entitlement, that people believe you must be bed bound to qualify & they don’t understand how difficult it is to manage a disability & maintain any level of normality.

And finally the last group of people that have an understanding of disability, usually because they know someone that has a disability.

For me personally, although at the start I had just a few niggles, now I’m always in some degree of pain (not just because of my arthritis) & things that you never needed to consider without the disease you now have to. I have found a great way to explain the types of compromises that people have to do when dealing with a disability is through the spoon theory.

I’ve covered a fraction of what its like to have arthritis but the best thing to come through more awareness, would be for people to see a girl struggling to get on a bus with stick in hand & instead of ignoring her existence or thinking shes a fraud, offer a seat before she stumbles? Please educate yourself as intolerance can be worse than dealing with the condition itself.

There are many types of muscular diseases. Depending on the source there are up to 200 hundred different types which shows how there needs to be more awareness & that for each type we are all affected individually. People need to start asking if they’re unsure (reasonable questions) & for us to be open to answering them.

Stay awesome & at all times keep hold of your spoons :)

Useful resources on arthritis

Arthritis Care - For support & information, they have a helpline & forum

Arthritis Research -For further information

What I have written about is only a fraction about my condition & what I experience. Each condition can affect each person differently. If you are worried or want further advise there are many resources available don’t worry in silence :)