Hard work can pay off...
It was several months ago that I posted on social media about the sudden discontinuation of my biologic therapy due to a local CCG funding issue. This meant that after 6 months of really successful treatment - being able to work full time, exercise 4 times a week and feel the most well I had as an adult, it all changed unless I could afford to pay for it privately at a cost of around £900 a month.
A few people told me that I should bite the bullet and pay the price; one was a doctor and one was an old teacher of mine. My school physics teacher explained that life is short, family is essential and for me to consciously compromise my quality of life for the sake of money was a pretty poor decision. However, I do not have £900 a month of disposable income, not even close and perhaps if we could have found the money it would have been a huge change to my family’s and my life. Very generous people offered to help out and some also suggested crowd funding, but this made me feel very uncomfortable and I also felt an element of responsibility that this was my own problem, so I had to sort it.
Rather than hold you hostage until the end of this, I can tell you with huge relief that we won the appeal. My medication has been made available to me once again on the NHS and below is how my incredible doctors made it happen.
Whilst my consultant and his colleagues compiled a hugely labour-intensive appeal, I wasn’t really able to talk about it in case of influencing any further decisions so aside from a brief discussion on BBC 5 Live and BBC Newsbeat about it, I kept quiet. To help my case I met with my local MP, Louise Ellman, who kindly wrote a letter of support. My work supervisor and friend Craig wrote a wonderful letter to both the CCG, my MP, the health secretary and it was also put in my appeal directly. A professor of rheumatology who runs the JIA register, many of the rheumatologists at Manchester Royal Infirmary and the Royal Manchester Children’s Hospital were also involved in what ended up being a very extensive document.
What I learned during this process is that my case for this medicine is truly unique. I am the only person in the UK that this specific Individual Funding Request has applied to due to my age at diagnosis and the path that my disease has taken, all the previous biologic therapies that have failed and now the medication itself. We were confident that the initial request would be accepted because we had good evidence that the medicine was working so well for me.
After a night shift in the Emergency Department after a few weeks off the medication due to discontinuation by the hospital pharmacy but pending the decision, I went to the rheumatology department for an appointment. We’d had a terrible night in work and I was feeling a little on edge but I thought I was going to get my prescription for the Baricitinib and everything would return to normal. Sadly that was not the case and my poor consultant had to give the bad news that the IFR had been rejected.
I was so upset and after initial disbelieve as I hadn’t even considered this an option I was angry, then very sad and totally defeated. Within 3 further weeks I couldn’t work to the required standard, my joints were needing aspiration under ultrasound guidance and I was in so much pain. My mood was low, my exercising stopped and I was back on crutches and in a walking boot.
What I found particularly soul destroying and infuriating was that my health, ability to work and my quality of life was completely in the hands of a panel of random people who had never met me, spoken to me or knew anything about my life. I felt angry that there was no more that I could do and that they had the power to do this to me and my family.
My amazing consultant was so supportive however and his commitment to getting this sorted never wavered. He rallied together the top people in the country to argue my case, get the facts and statistics together and the appeal was filed.
Fast forward to August and I had just started my new career as a Radiologist (blog post to follow, eventually!). This with an impending house move, large weight gain and increase in two dress sizes with no exercise meant that I have not been feeling great, but during an afternoon at work I received an email from my rheumatologist to say that the appeal had been successful; I can have my medicine on the NHS.
This is such fantastic news as I had taken it upon myself to make this appeal not just for myself, but for anyone else in the UK in my position.
I have no doubt that the panel looked at what they had in front of them on that day, money will have played a part and I was initially an unlucky patient that may have meant someone else got some medication that they needed in my place. Mostly from all of this it has been further confirmed that I have the most passionate and committed rheumatology consultants in both Manchester and London that were not willing to let this lie, as they knew that taking this medication was in my best interests and we had proof that it had helped me so significantly.
If I was not a doctor, or if I was single or a parent this could have been a million times harder. I am in email contact with my consultant, I understand the process of an IFR and why these decisions are made and what dire straits the NHS is in. I felt it was my responsibility though to represent the other people who may be in a similar situation, no matter what the outcome was going to be.
So what next?
I feel after this 4 month ordeal my family and I can now start looking forward again. I have stopped the Azathioprine that was started with Hydroxchloroquine as compromises. They are very old medications and it didn’t seem to have changed any symptoms for me in the several months that I was on it, aside from my hair becoming even more frizzy!
Weaning my steroids is a huge priority; I have had a stress fracture this year already and have been on over 25mg for 4 months, put on tonnes of weight, lost all my muscle mass and also the ability to feel full! My endocrine system is shot to pieces and I would like to regain a little control over it. So although only decreasing by 1mg a fortnight, I’m down to 21mg now and feeling no negative affects so far.
I truly believe since starting Rheum For Improvement that exercise has helped me to get better. I feel better mentally as well as physically and know that my body benefits from it. Rise and my wonderful friend Harriet Jefferies helped to transform my life last year for the better, so I know that with hard work I can do it again. It really feels so good to be doing something active after so long.
Finally, I am now in a job that allows me to sit down a lot more, not work shifts and so live a life with much better routine. Alongside my medication restarting, I really hope that these things can allow my Arthritis to change for the better.
If any of you reading this have had trouble with your medication, do not give up. As patients our doctors really do advocate for us, and our families will always try to help us. As a doctor I don’t know why I was still so humbled to know how committed my consultants are and the insane number of additional hours they all spent doing something they shouldn’t have to have done.
I am so grateful to my doctors, to my colleagues in Manchester and to my family and friends for all the support they gave me during all of this, so this is a little public thank you to them. I also wanted to finally write something now that I can, to support those who are in a similar situation.
Please share this post to anyone you feel it could help, or email me if you have been in a similar situation. I would love to talk to others about this and learn about your story.