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Representing people with MS in the UK

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Photo of Pia, a lay member for MS Forward View

Pia Reynolds, advisory group lay member for the MS Trust’s project MS Forward View, explains what it’s like to represent people with MS in this innovative project.

My MS

I was diagnosed with relapsing remitting MS in 2011.

I’d had a bout of optic neuritis, and when I had a ‘sensory relapse’ 6 months later, my neurologist confirmed that it was MS. Of course, everything they told me during that meeting went in one ear and straight out the other. Once I got in the car after the appointment, I broke down thinking this, surely, was the end of my life. I’m sure my neurologist did tell me everything I needed to know at that point, but I hadn’t taken anything in. I’d heard the term ‘MS’ before, but muddled it up with all sorts of other conditions, and was convinced I’d be in a wheelchair in a week!

I then embarked upon a determined quest to find out all the information about this condition I possibly could. I joined internet forums and groups, and found out what it was really like to have MS by hearing from other people living with it. It was fantastic having access to these real experiences, and to realise that people with MS are the ones who really know all about it.

Representing people with MS

You may have heard MS described as the ‘snowflake’ disease, so named because no two MSers have the same symptoms, progression or severity. However many years a neurologist, MS Nurse or other MS professional has studied the disease, however many patients they have seen, only us, the MSers, can really know what it is actually like to have MS.

So, back in December when I saw an advert from the MS Trust looking for lay members for the new Forward View project, I couldn’t wait to get involved – to be one of the voices of people living with MS.

MS Forward View

I’m sure by now you’ve heard about the MS Forward View project – it is a great undertaking by the MS Trust to look into various aspects of MS care within the NHS, and to ensure that the care is equally accessible to all, is efficient and cost effective.

Involved in the project are MS specialists from various areas – neurologists, MS Nurses, occupational therapists, pharmacists and many more. And then there’s us: Caroline, Amy and myself, the advisory group lay members.  We are not here because we’ve studied MS, read the books or done the training. We are here because we live it! We are here to ensure that, when a discussion is going on, we can interject at any point to say “it might say that in the book, but that is not what it feels like when you are the patient”.

For this ‘snowflake disease’, having just three lay members really isn’t representative enough, so we have set up a wider lay forum, in which 60+ people with MS help to represent the widest possible range of MSers, and carers too. This is a virtual discussion forum – a closed Facebook group (and also a small email group for successful applicants who preferred not to use the social media site) – which over 130 people applied for. When a question arises from the Forward View project, we ask the forum for opinions, ideas and inputs, and these contribute to and influence the project. This ensures that every idea, suggestion and piece of advice is thoroughly vetted by those of us who live with MS every day.

You may think that this is a ‘tick box exercise’; that the lay members are just there to ensure the Project can say at the end of the day that ‘patients were consulted’ – I can assure you that this is not at all the case.

I was recently involved in a workshop for MS Forward View in which the whole process surrounding DMDs was discussed, right from initial guidance for choosing the right DMD, through the prescribing and delivery of the drugs, and to further monitoring. The workshop was attended by neurologists, MS nurses, neuropharmacists and other MS specialist professionals. Caroline and I were there as lay members representing people with MS, and I promise you we were listened to! We commented, for example, that certain procedures, which professionals assumed were working fine, were perhaps not ideal in the eye of someone actually using the service. We also noted that parts of the DMD process could be streamlined, freeing up MS nurses’ time to deal with more pressing issues and care. It was made clear to me that the MS professionals on this project really appreciated having the MSers’ views represented as it reminded them that these processes and issues actually affect people with MS – that we are humans, not statistics. 

I find it a real privilege to be a lay member – I am proud to represent people living with MS, especially in the MS Forward View project with which we are hoping to bring positive change to MS care. Caroline, Amy and I are so grateful to the wider lay forum for their time helping us ensure everyone with MS is represented as best as possible.

A word from Caroline:

“The lay forum has been fantastic in helping Pia, Amy and I represent people living with MS in the UK, and has provided some very useful discussions. It also helps the MS Forward View project team understand services from the perspective of the people using them. This was especially valuable when the team ran a workshop on advanced MS in May. I was able to get opinions from the forum regarding what services are needed before the event, and these were well received by those attending, and were taken into account throughout the meeting. The meeting was one of the most positive I have attended because I really felt the forum’s opinions and experiences had been taken into account.”

A word from Amy:

“It's such a privilege to be part of a project which focusses on real people living with MS. I've been in awe of the honesty of members on the online lay forum and sharing their real life experiences. Discussing personal issues can be hard work and emotionally taxing, but everyone in the lay forum has opened up, and been keen to contribute to any questions asked. Having so much feedback to draw upon makes sure that the wider views of people living with MS are represented in the advisory group. Hopefully we can all make a difference to MS care by working together."