Being given the diagnosis of a life-changing condition is going to carry trauma, no matter how well-adjusted and resilient a person might be.
In my case, the diagnosis was a complete double-whammy, as my younger sister had been diagnosed with Primary Progressive MS (PPMS) just a few weeks before. The fact that she was diagnosed PPMS and me Relapsing Remitting MS (RRMS) instilled some sense of guilt in me; I will be honest, the only times I’ve ever shed a tear in this whole process, have been when I’ve been talking about my lovely sister.
I guess nothing symbolised the comparison between the two of us more so, than with the NICE decision to approve Ocrevus (Ocrelizumab) for RRMS folk, but not for those with PPMS. To me, it was an utterly ridiculous and groundless basis upon which to extinguish any last bastion of hope for people in the UK with PPMS.
I was aware that the MS Society had launched a petition to overturn this decision, which I swiftly signed with a flourish of rebellion, and which other family members posted on Facebook (I don’t do FB!). Next, I searched the NICE website for access to their consultation document. NICE were the enemy, the holder of the scales which held medical and social ethics on one side, and scientific evidence and cost on the other. And I was going to give them a piece of my feisty mind, MS-addled brain fog or not!
I remember spending a Saturday afternoon submitting my well-constructed objection to their decision. I also remember thinking that my intelligent reasoning was so professionally crafted, that it would at least yield a response from NICE. (On that note, I’m still waiting….).
The next step was to write to my local MP. My brother-in-law Tim did the same, and his elicited an immediate response from his MP, inviting Tim and I up to his office in Westminster for a discussion. Tim had prepared well for the meeting, spouting all sorts of well-researched facts and figures on government spending. Me, I had my feisty, heart-driven, sentimental and compelling head on. I went straight for the ‘I can tell you’re an earthy, people’s-person MP….’ jugular and hit him with my piece-de-resistance trump card. This was that I wanted to invite him, NICE and our whole family to a big family dinner, so that NICE could tell me why I was worth the monetary investment of Ocrevus, but why my younger, tax-paying hard-working sister was not.
The MP duly seemed moved, if a little startled, by this analogy of the situation. He starting googling for NICE but, having planned ahead with factual interventions, I had printed out a copy of NICE’ decision and associated information for him. It was a lovely moment; within seconds he had spelled out his plan of action; he would invite the MS Society in to verify the facts (which he did), he would request an Adjournment Debate in the House of Commons (which he did, but which was turned down), and he would write to Matt Hancock (which he did), Secretary of State for Health to demand an intervention. We left that day on a quite a high, and I scurried home to write a post on Shift.ms. A week later, we were invited back to Westminster to participate in an information event. It was there, I was linked up with the MS Society who asked if my sister and I could give our story to their campaign.
We were very happy to work with the MS Society, which involved being interviewed to prepare for a possible press release. The only thing was, before we could whole-heartedly do this, we would need to disclose out diagnosis to friends, family members and work colleagues who were previously unaware. This was, as you’d understand, really quite tough. But when faced with our own discomfort as opposed to The Greater Good, there was no contest. And so disclose we did!
The next stage was to finalise a Press release in the event of NICE making an announcement. At the end of April we were informed – confidentially by the MS Society– that it was thought NICE were going to make an announcement on reversing their decision. My sister and I were asked to ratify a press release, which, most excitedly, carried a press embargo which was to remain active until 12.01 am. I asked if it would be acceptable to post on Shift immediately after this, and was assured this would be OK. I was beside myself with excitement! On the Wednesday evening, I stayed up until after midnight and was delighted that the news of the decision reversal went out on the good old Guardian website at 12.01. Shortly followed, even more importantly, by my own post on Shift: Jubilation! Ocrevus approved in the UK for PPMS!
The MS Society had said that there might be an article in the Metro, possibly the Daily Mail. Imagine my disbelief when I performed my usual 6.45 pre-work check of the BBC news website, to find me and my sister smiling out at the world! I can’t describe the feeling; a mix of embarrassment, joy and accomplishment I guess. By midday, we had been interviewed to appear on Channel 5 News to tell our story. And all I can say about that, is that it’s true in what they about the TV screen adding another 10 lbs!
On a personal level, this 15-minutes of fame we have enjoyed has left its ‘MS Sisters’ mark on the Health section of the BBC website; more importantly for us, it has made us feel less useless in the face of this creeping monster we were diagnosed with. But on a wider scale, the reversal of this decision means that those who have previously felt – justifiably – that they have been side-lined and left to their own devices, can be brought to the forefront of consideration. I see that neuro teams around the UK have been encouraging SPMS/PPMS folk, way-down on the patient priority list, to ask to be reassessed, in the belief that even if not suited for Ocrevus, then they might be eligible to participate in other trials from promising medicines and treatments in development.
This campaign has, in all its forms and guises, yielded a huge victory for those with PPMS. It has reached out to a group of people who have always been there among us waiting on the sidelines, but without having an audible voice in terms of medicine and social politics. I’m proud to be an MS Warrior, and already planning the next bee-in-my-bonnet tirade!
I live in London with my husband and have been involved in special needs education for twenty years now, as teacher, dyslexia/ASD specialist and Headteacher. At the ripe old age of 50 I was diagnosed with RRMS and have spent the last few years coming to terms with that. My sister has PPMS and my 27 year old daughter also has a serious autoimmune disease. I currently take Tecfidera and follow a moderately- keto diet. I spend my weekends recovering from the working week, craving sunshine and warmth, and indulging my obsession with property programmes on TV. I log in to Shift.MS every day and am a frequent-flyer with responding to posts under