Through my involvement in research with AUKCAR I have had the opportunity to meet other people who get involved in research because of a condition they have. Patient and Public Involvement (PPI) in research is slowly appearing in research in a range of different medical conditions. It doesn’t happen enough but it is good to see it! I had the pleasure of meeting Sue when we were both speaking at a PPI course run by the Edinburgh Clinical Research Facility. I asked Sue if she would mind sharing her experience of how she got involved in PPI and how she has found it. Below is her story about how she was diagnosed with multiple sclerosis (MS) and how she got involved in research, and how she has found it. It is great to be able to share someone else experience and from someone other than an asthmatic. I want to extend my thanks to Sue for allowing me to post this blog. This was a talk Sue did back in 2012.
“My life changed on a wet, cold, November day in 1996, when I rushed out to the garden to plant leftover bulbs. The following day I had a numb left foot but dismissed it as being nothing. The numbness continued up my leg, so I thought I had nipped a nerve when planting those stupid bulbs. I worked in Dollar, 37 miles away: it was busy, stressful and I was constantly on the run so did not have time for this stupid injury. I sought out a private physiotherapist hoping she would be able to release this trapped nerve, but when I made contact, she told me to go straight to my GP as she thought I had damaged my spine! I only had a numb leg. After work I headed for my GP in Edinburgh who told me to expect to have spinal surgery that night. He sent me to the Western General where they were waiting for me – seems as ridiculous now as it did then. 10 days later, still in the ward, thoroughly frustrated (so much so that the nurses called me Mrs P!), having had endless tests, the consultant told me I had had a neurological episode – (or clinically isolated syndrome to give it the correct term) which would resolve itself within 3 months. He was right, it did. But it returned 8 months later.
By this time I was working in Edinburgh and when I saw the consultant again in February 1998, he said he was very sorry but it was definitely MS and there was nothing he could do but see me in the clinic annually. He handed me the address of the MS Society and I left, got on the bus back to work and collapsed weeping in the arms of one of the staff! I knew nothing, less than nothing, about Multiple Sclerosis. Apart from breaking the news to my poor husband, the best thing I ever did was to telephone the Society and ask for relevant information to start my education into the disease I was to live with for the rest of my life.
Someone explained the categories that we group MS into and I was diagnosed with late-onset (I was 48), aggressive, relapsing/remitting MS. Within 6 months I could no longer cope with my career and began spending regular periods in hospital being treated with steroids – the only drug available at the time in this country. The relapses began to strengthen and lengthen until I had to spend the middle two weeks of any relapse holed up in my bedroom as I couldn’t use the stairs. Remissions were like gold, sometimes only 3 weeks long. I didn’t need my GP to tell me the outlook was grim, I knew I was getting weaker.
At the end of the 20th century, very little was moving in the MS research field. MS was neither attracting government attention nor recruiting the high standard of researcher required to move forward. Of course, I spent a lot of time reading up on the subject and quickly realised other countries were using new disease modifying drugs, banned in this country due to their cost. I was beginning to build up a head of steam and used my hospital stays to constantly question my consultant and his registrar – eventually they could be seen creeping past my room hoping I wouldn’t bother them again! But it paid dividends because, eventually, the registrar mentioned an old, cheap immunosuppressant drug used for transplant surgery that had displayed good results for MS. They decided, as long as I was willing to accept the risks, I could become a named patient. It was just at this time that that I had a catastrophic relapse and lost the use of my core muscles so could no longer walk. I was taken to hospital by ambulance to be assessed. That was one of the lowest points of my life. I lay in a side ward, unable to do anything, knowing that this was quite probably going to be my future, and my family’s future. It was decided that I should be transferred for rehabilitation to a dedicated rehab hospital and at the same time we all agreed that I should begin on that immunosuppressant.
For me that was a desperate time. It was an awful ward to be in, but thankfully the physiotherapy department was wonderful. A week later, after lots of work on my core muscles, I was tied to a standing frame for the first time and felt so tall, so far off the ground that I couldn’t believe it. Gradually I began the work of learning to walk again using parallel bars with my wheelchair being pushed behind me. It was so very hard to make my left leg move through to the front that I did not think it would ever happen. But it did and I decided that once I could walk enough steps with a zimmer, I could manage the journey from my bedroom to the bathroom so I told them I was going home. The consultant tutted and muttered and said he felt I should stay another week. My response was that on the whole, men found it easier to fall in with my wishes! So he gave in. Once home, I was so lucky to be given daily physio in my bedroom and, a few weeks later, using elbow crutches, I descended the stairs for the first time! What an amazing feeling to see my lounge again.
That little tablet had begun to work and I was aware that the relapses were less frequent and much less severe. Once I was able to get about a bit, with my husband’s help, I became more active within the MS Society. In 2002, an advert “Have your say in research” leapt out of the page of the Society’s newsletter and I immediately applied. I50 of us around the UK were accepted for training for the new Research Network. The Society had made the historic decision to involve people with MS in everything to do with research so that the projects they funded would have more relevance and make better use of scarce resources. After training we were ready to get to work helping to review grant applications to the Society. Gradually I began to take on other work and through that found a channel for my frustration. Suddenly I was asked to speak to others about the Research Network. I was scared witless but so pleased that I managed it and from that grew a whole new confidence and purpose. The Research Network went from strength to strength and I began to be asked to respond to breaking stories about MS research on television, radio and newspapers! Amazing. I thought my days of using my brain were well behind me but, with the support of the Society in Scotland and London, I was encouraged to take up the many challenges they sent my way. I have continued to speak as a patient rep whenever I’m asked and have become involved with the Scottish Stem Cell Network for whom I have since carried out regular speaking engagements in their outreach programme. I’ve chaired meetings (one of them in the Scottish Parliament), I have worked on panels and on reference groups and am now part of the Steering Group that guides the development of the Research Network. I’ve been privileged to meet with many outstanding MS researchers and have listened when they speak about their amazing work. I’ve even spoken on the same platform as some of them.
Am I the same person who lay in a darkened room in the Western General unable to walk or to see any future? I hope not. I have, through all this fascinating work learned about my own disease from those whose lives are spent working to find new treatments and that in itself has been payment beyond price for the small amount I do. And through these difficult years, my husband and family have been my rock and have continually supported my wish to meet the challenges the MS Society has laid down. Without that amazing support all this would have been just a dream. The Research Network came at just the right time. Those cheap tablets I have been taking since that long spell in hospital, have kept me out of the ward since then and have made my MS less aggressive so that it can be managed. Do I still have bad times? Yes I do – regularly. My MS has moved on to being secondary progressive so that the damage is now permanent and the disease path is downwards. But on the good side, there are less violent ups and downs and the whole thing is calmer. When I look back over a year gone, I can do less physical things than I did last year and of course that will continue. How long I can remain active, using what ability I have left is anybody’s guess but I’ll keep on until it beats me.
MS research has moved on incredibly in this new century to the extent that we are on the cusp of great life-changing results with the use of stem-cells. It is a very exciting time for people with MS, but developing research outcomes so that they can be used in the clinic is a phenomenally expensive process and takes years. The Society supports much of the quality research being carried out in this country but it is of course limited to the amount of funding available.
Last autumn I was interviewed by the Society for one of two lay places on the Board of Management of the MS Translational Research Centre in Edinburgh. I am very proud that I was accepted because I have great faith in the work that is taking place there. I attended my first all day Management Board Meeting last December – two MS Society staff up from London, the other lay member, 6 international professors………..and me! Even though it was a little bit terrifying having to contribute and discuss in such august company, it was an amazing day in an amazing new building. The mind-blowing work that is happening there, in close cooperation with the Cambridge Myelin Centre, left me breathless, and excited for everyone who is suffering MS and for all those yet to be diagnosed. I am therefore in a perfect position to assure you that the results Hazel speaks of are absolutely true. I believe our future is contained in that building behind the Royal Infirmary.
I am now a grandmother of two and naturally I am very concerned that this vile disease will visit one of them. But, because of my experiences, I trust the future will be very different for those little ones if they have to live with this disease. Many years in the future, I think science will look back and note that the biggest break-throughs came from this period of research.
The MS Society staff have been my mentors and are always ready to help if I have problems. Yes, I have tried to make the most of what was on offer but I thank them for presuming I still have something to give when I have constantly doubted myself. Without the MS Society and the Research Network, life for me and my family would be very different. They have quite simply saved my sanity.
(this extract below is taken from a more recent talk Sue did)
In 2014 I was elected to the Scotland MS Council which was a huge sideways step for me, having been immersed in research for so many years. Here was the actual workings of the charity, the branches and committees, the fundraising and staffing, none of which I had a clue about. I am still learning and am at present awaiting the outcome of my re-election (it is a 3 yr term of office) which was voted on by the membership. If I am fortunate enough to have been elected I will serve a further 3 years and hopefully by that time, I might understand what I’m doing!
I continued my work for the Reserch Network and, as you heard, it was at my annual review that the registrar asked if I would be interested in meeting A who is a Patient and Public Involvement advisor for the CRF. I was delighted to learn that so much was going on in the wider world and happily agreed. We met and had our coffee and I was impressed with the work already achieved so, hoping I could be of help, signed up. A is amazing and very impressive but it is ridiculous that she is not properly funded – that makes me angry. I am enjoying the various tasks I am given and it is good to know that my experience can be put to good use in the wider world.
I hope that tells you a little of what my life with MS has contained. Unfortunately, I continue to go gently down the disease path no matter how much I fight it but I will keep kicking on as long as I possibly can! I’ve been so lucky to have had the chance to use this vile disease to represent others and to try and educate both researchers and the public about MS. It is a small charity in comparison to the huge ones like cancer. 100,000 folk have MS in the UK, 11,000 of them in Scotland, making us the MS capital of the world – the worst place to be is Orkney!”