A Manifesto for MS Care

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Posted By Scott

I recently joined a Zoom meeting hosted by the MS Society Scotland to discuss ideas for a manifesto. The Society will ask candidates for the 2021 Scottish Parliament elections to support this manifesto.

In 2016, the MS Society asked candidates to “Get Loud for MS”. Four years later and having seen improvements in many areas, this year’s campaign is titled “Get Louder for MS”. This emphasises there is still much to be done to improve care. The meeting invited people from around Scotland to comment on an early draft of the manifesto.

The manifesto is still a work in progress, but two areas of discussion stood out to me.

Care, Support and Treatment

First up there was “giving everyone in Scotland equal access to the right support in the right place at the right time” and “Access to MS Nurses when you need them”.

Location, Location, Location

I’d never given much thought to this, but it is apparent that, much like houses, location location location is everything. I live a few miles from the Queen Elizabeth University Hospital which is home to the Institute of Neurosciences. There is a lot of expertise and technology nearby. I have had Lemtrada infusions, regular blood checks and consultant neurologist and MS nurse appointments at the hospital. If you can be lucky in getting MS, being close to such a centre of knowledge counts as good luck.

Not everyone has such access. Two ladies from the Borders were in the meeting, and they do not have such resources on their doorstep. I think this would increase the level of stress associated with an MS diagnosis, something that is already stressful enough. My MS Nurse Pauline has been invaluable. In the first year following my diagnosis, I had a lot of contact with Pauline and she answered my many questions. This year things are more stable and I’ve not needed as much contact, but the support is still there when required.

Similarly, my hospital visits are relatively straightforward. They don’t require a great deal of travel planning. Obviously, you can’t replicate the scale of the QEUH services all over the country. Somehow, it must be as easy as possible for people to have access to this critical MS support. Easy to ask, more difficult to answer.

What are my Options?

A good point was raised about how we find out what services are available. There are a lot of support and treatment options, but everyone’s needs are different. When I was discharged from hospital, , I felt I was walking into the unknown. It was suggested that MSers should be given some form of list of services and contacts. A lot of this falls on our MS nurses, they are a gateway to the services available but anything that makes it easier for new patients to understand the support available would be immensely helpful.

Supporting Wellbeing

The next area of personal interest was about wellbeing. I suggested that we talk about both mental and physical wellbeing. MSers may help to cope with diagnosis but also access to an appropriate level of exercise to maintain fitness. I recognise that, so far, I have been fortunate in that after two years I can still run and do martial arts. Not everybody is that lucky, but everyone should be able to access suitable physical activity. It’s good for both fitness and mental wellbeing.

Counselling and Emotional Support

There was discussion around access to counselling whenever required. Does the word counselling conjure up a particular image to you? For better or worse there might be a negative connotation to it but there shouldn’t be. Discussion of mental health issues have become more open, more common as greater understanding of its importance develops.

The conversation was very interesting. What is our ask here? As mentioned before, I sought counselling to help me deal with diagnosis and prevent a potential slide into depression. It did help but obviously wasn’t MS specific, instead being based on cognitive behaviour therapy. The typical CBT line of questions “So what would you do differently?” doesn’t really work in this situation. Well, I wouldn’t get MS for a start…

The Challenge

Could there be more MS specific counselling? Could counsellors have an understanding of MS, or at least chronic medical conditions? I also like a suggestion to think of it as emotional support rather than counselling. Another good point was that everyone may will have a different timeframe for needing such support.

For me, it was about six months after diagnosis. Another person shared that she wasn’t ready until two years later to talk about it. It took about three months from me raising counselling with my GP to getting an appointment. During that time, my emotional state was so up and down. How do we streamline that? What sort of counselling, or emotional support, would help?

In the early days thoughts in my head were colliding like a demolition derby. I needed someone to put a metaphorical arm around me and say things would be ok. Everybody deals with things in their own way, so the challenge is to create a suitable range of counselling options.

Final Thoughts

At this point, we were out of time and the meeting ended. We had almost two hours of good conversation, ideas and people’s experiences. What impressed me is that the meeting was largely positive. A part of me dreaded it being a group moaning session, but it was nothing of the sort. Instead it was people at varying stages of their MS journey wanting things to be better. Not just for themselves but for all MSers in Scotland. I found it very uplifting.

Two-and-a-bit years after diagnosis, I’m getting more comfortable engaging with the wider MS community in settings such as this. Given my own experiences, I’m keen to help and to learn from others. How can people with MS can receive the most appropriate care and deal with the condition.

I look forward to reading the finalised manifesto. I sincerely hope that the candidates in the upcoming elections will support it. Together we can get louder for MS.

Carlton encourages everyone to get louder!

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