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.

and a Happy New Year!!

Blwyddyn Newydd Dda

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.

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.

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.

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.

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.

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.

No one should define you but you.

A lack of understanding

So hi there!

So I haven’t posted in a while but with good reason as my health has taken a pretty big beating.

I’ve been off my arthritis meds for over the last 4 months as the medication I take means that I am immune suppressed & with my rheumatology team greatly concerned that I might have an infection, I haven’t been able to take it & they were right to be concerned.

I’d had a swelling in the back of my mouth. There was massive debate, a lot of to & fro, back & forth from the dentist to the doctor.Is it an abscess, sinusitis or trigeminal neuralgia?

My GP thought that It may be trigeminal neuralgia due to the intense brief but repeated pain I was having.

In the end? None of the above, instead a large cyst with a bucket load of infection thrown in for good measure. It also seems more likely now that it was the cyst pressing on the nerve than trigeminal neuralgia.

It took until I saw my hospitals maxillofacial team to find out what the problem was but even then I had seen a junior doctor & they didn’t fully understand how significant the problem was, even then initially thinking that I could have it taken out under local anesthetic & sedation.

Unfortunately though it seemed that the doctor underestimated how significant it was & with her trying to examine it, aggravated it further as when I woke up the next day the swelling had increased along with the pain.

So I rang up maxillofacial, & they advised us to go to the hospital which we did. When we arrived a triage nurse came over to me concerned how pale I was & what was wrong & sending us to wait in the waiting room. Eventually we saw a juniour doctor, tried to explain that I was immune suppressed, that I had arthritis, that I was in pain & It seemed that pus was draining from the lump (yep, sorry I know that ones a bit gross, I was there >.<)

Junior comes back from ‘consulting’ with his seniors saying I could go home. We re-emphasised that there is something really wrong, he goes back to his seniors, the answer is still no, you need to wait for us to do it routinely.

In absolute despair I tell the A & E sister whats wrong & she agrees that its not right & will do all she can. She asks the junior, he sticks with his decision but says a senior doctor is coming in & if that doesn’t work she said I could see one of the A & E doctors.

The sister was amazing running around & chasing up anything she could, she fought for me & for that I am truly grateful. She was like a bulldog that just wouldn’t let it go because she knew that I needed treating urgently.

So she gets the senior to see me before he has even taken his coat off & within about 5 minute he had admitted me for IV antibiotics with the hope of surgery in the next day or two.

So the next day the junior comes on the ward, you can go home, take your arthritis medication & if you want it doing quicker your dentist can do it (which isn’t the case)

By this point, I feel so ill that I cant fight but my partner takes over & stubbornly says we want to see the registrar.

So we wait, they take away my bed & then the registrar sees me. He examines it & then pokes it really hard resulting in me uncontrollably crying out in pain.

When the registrar finishes he tells me not to eat or drink because I might need surgery in the next few hours. He sits & explains, that the junior hadn’t told him that there was pus, didn’t tell him I had arthritis & didn’t tell him that I was immune suppressed which had he had known he wouldn’t have told the junior to send me home. The junior wasn’t seen on the ward after that.

In the end it was agreed that it was best that I went home with a strong dose of antibiotics because although the cyst could be removed in emergency surgery, the x-rays were limited in what they showed them. They also didn’t know if there was a hole between my mouth & my sinus & what amount of infection could pour into there, which wouldn’t have been good & they didn’t know if any restoration work would be needed that would have been difficult to perform on an emergency basis.

They agreed that having time to lessen the infection & having a full amount of staff would be the safest option.

So I told the nurses that I would need a bed & not a theatre trolley due to my arthritis as I was in enough pain due to being in a flare up along side the cyst.

However, this didn’t happen the ward sister tried to arrange a bed but the nurse that was ‘looking after’ me couldn’t understand what the fuss was about.

So very anxiously I went down to surgery, luckily the surgeons kept their word resulting in four surgeons doing my surgery. Three hours later, I was out & recovering on a very uncomfortable trolley with two teeth missing & two sets of many stitches.

The surgeon comes around tells me they got it all out but the cyst running out of space where it was had pressed upon the bone separating the mouth & sinuses destroying it as it was trying to push in leaving me with a hole into the sinus. For non immune suppressed people they can risk leaving the hole but for someone like me that is its simply too risky so they made a graft sealing the hole with tissue in the hope that bone will follow behind.

So whilst groggy from the surgery I had staggered over to my partner who was not allowed to sit with me, to get hair clips as I was conscious enough to know that I didn’t want the blood that was coming up going my hair. This staggered painful hobbling constituted ‘running off the ward’ so expressed one of the nurses. This was accompanied with one of the care assistants getting angry at me when I shied away from the ear thermometer, one of the other care assistants had tried twice to check my temperature with me shying away both times. The first care assistants tells the other, she comes in & shoves the thermometer in the ear stating angrily that ” You had surgery on your mouth, not your ears,” not realising that her shoving the ear thermometer in was creating unequal pressure in my ears & head as the graft they had placed over the hole hadn’t had enough time to create a complete seal.

So after some time we were about to go home when the nurse from before whilst discharging us thought it was perfectly ok to ask both me & my partner what we did & proceed to say we needed purpose & focus in our lives that only a job could give & that it was evidence enough that i was fine when i ‘ran off the ward’

I find it extremely sad that this nurse could both judge me quickly & be so ignorant to how disabling arthritis can be. It is after all the reason that I ultimately ended up in hospital. The medication I take means that I’m immune suppressed & much more susceptible to these type of things. This is what some people don’t understand the stopping & starting of medication & the infections & effects as result of it & that this isn’t even with trying to understanding my condition & that like many, I don’t just have one disability or illness but multiple.

The other factor I have learned living with a chronic condition is that doctors can get treatment wrong. It is expected that doctors know all & that the treatment they give is always in your best interests.

However more & more I have noticed that this isn’t always the case & I know more & more they don’t always know everything & that what they may prescribe may not be in my best interests & in this I know i’m not alone & there are many people with chronic conditions that experience the same. We’re also not allowed to question it, do & you risk becoming one of ‘those’ patients which may result in some nurses that won’t answer your call bell.

I’m now hoping that the wounds will heal but after I get the all clear I then have to start the process of seeing my rheumatology team to resume my arthritis medication along with other medical appointments.

If anyone reading this has ever had a go at a disabled person or is resentful its not as simple as you think. There are many complications that disabled people face from the side effects of there conditions, to the complications with treatment on top of dealing with the condition.

Anyway I hope that I can get back to normal posting :)