About a year ago Barts-MS was criticised for pandering to the informed rich. More than half the patients we treat are out-of-area and when it comes to our alemtuzumab-treated patients more than two-thirds are out-of-area; i.e. in an ideal world they should be treated and managed by their local team. The problem we have is that informed patients seek out and find centres who offer them highly-effective treatments.
The implications of this stinging criticism are that we are neglecting the patients on our own patch to look after these other patients. In response to this, we did an audit and showed that our patients (Tower Hamlets, Hackney and Newham) are as likely to be on high-efficacy second-line therapies as patients from other boroughs. Our patients are not being disadvantaged. At about the same time as this criticism, I became aware of the massive variance in the NHS when it comes to DMT prescribing and access to MS services, which prompted us to hold our Variance meeting last month.
In addition to this Barts-MS has been very proactive in promoting their off-label essential DMT list to address under treated MS in resource-poor environments. This has subsequently led to the MS International Federation (MSIF) taking up the challenge and leading on an application to the WHO to get a few highly selected DMTs on the Essential Medicines List (EML).
Independent of this I noticed that patients engaging with our PPI (patient-public involvement) programme seemed to do better than patients who didn’t engage. I suspect this is because PPI increases social capital, i.e. support networks, that helps people with MS. Social capital is well studied in other disease areas, but not MS. As a result of this, we have started to explore social capital as a treatment for MS and are actively studying it. The concept of social prescribing to address the social determinants of health is not new. However, it seems to be gaining traction as a mainstream topic.
On my flight back from MENACTRIMS in Dubai, I was catching up on some of my reading and read the following two articles that are of the moment. You know that when both the NEJM and the BMJ simultaneously review and discuss social medicine something is afoot.
Scott D. Stonington et al. Case Studies in Social Medicine — Attending to Structural Forces in Clinical Practice. N Engl J Med 2018; 379:1958-1961.
Excerpt: …. In this issue, the Journal launches Case Studies in Social Medicine, a series of Perspective articles, to highlight the importance of social concepts and social context in clinical medicine. The series will use discussions of real clinical cases to translate these tools into terms that can readily be used in medical education, clinical practice, and health system planning….
Ann Robison. Social prescribing: coffee mornings, singing groups, and dance lessons on the NHS. BMJ 2018;363:k4857
Excerpt: ….. “Dance lessons for the lonely on NHS,” led the Daily Mail in October. “GPs should prescribe hobbies like ballroom dancing, gardening and art classes to millions of people because it is often better than drugs,” said the Telegraph. This “social prescribing” is being touted widely as a panacea, including for loneliness, obesity, depression, and osteoarthritis. The health and social care secretary, Matt Hancock, is a fan: he wants social prescribing to relieve pressure on the NHS and improve patients’ outcomes…..
I have little doubt that social prescribing will make a massive difference to the way we manage MS. MS not only shreds the brain it shreds social networks. PwMS are frequently depressed, combine this with unemployment, divorce, poverty and reduced benefits and social isolation is not far away for a lot of pwMS. This is why we need to think differently about the holistic management of MS. The difficulty we have as healthcare professionals is to tackle this problem sensitively and with compassion. It is vital that we are not patronising when taking a social history and addressing social problems. A lot of pwMS think this not part of the neurology teams remit.
If you have any ideas on how about social prescribing in the MS space we would be interested to hear about them. Maybe you have examples of things that are working already.
Some of you may recall our readers’ response to the post on the BBC Radio 4 dramatisation of ‘An Instinct for Kindness’. Allyson the main character of the play is an example of someone who may have benefited from social prescribing. Do you agree?
Many GP practices in the UK are linking up with their local parkrun:http://www.rcgp.org.uk/clinical-and-research/our-programmes/clinical-priorities/parkrun-practice.aspxAnd before you all complain that not everyone can run or walk 5k, anyone can volunteer and be part of it 🙂
Hi Annonie MouseYou beat me to it! The Royal College of GPs and parkrun launched a joint unitive over this year with nearly 500 GP practices (and many other HCPs) having signed up to “prescribe” parkrun. For those who can run/walk/jog 5km parkrun is a great, free, weekly timed way of doing so. As you say, for those who can’t the social aspects of parkrun from joining the local community teams of volunteers can still provide the benefits of outdoors exercise and help beat issues such as loneliness and depression. Through its department of health sponsored “Prove” project parkrun is running an outreach programme to help raise awareness of the benefits of parkrun for people with longer term health conditions such as MS and disabilities. There is a Facebook group for parkrunners affected by MS (there are nearly 900 registered parkrunners in the U.K. with MS) if anyone is interested in more information. For those local to the Letchworth area, this Saturday the MS Trust is “taking over” Letchworth parkrun as part of the drive to raise awareness of parkrun in our MS community. If anyone is interested please do pop along! #Run4MS #ThinkSocial #Loveparkrun
What's happened to your MS Research day? Surely that is a form of social prescribing ?
We went extra social in 2018 travelling all the way to Stornoway, where no neurologist has been spotted for years. Videos are here: https://www.youtube.com/channel/UCyTAs55E__NlUmDeWs66Jeg/videos
Outer hebribes an island group off the west coast of scotland.We were joined from the neuro team from Glasgow.
Our local council runs several free Healthwalks and many of the paths are buggy and wheelchair friendly, run mainly by volunteers aimed at anyone. 1,2,3,4 or 5 miles long.Some walks are for women and finish with a cuppa at the community centre and some are for those living with illness such as cancer. There seems to be free activities out there already that HCP's and doctors could signpost people to.
The council also run free wellbeing sketch walks with a local artist, aimed at anyone, bring your own paper/pencil, all abilities. This is a great idea.
Social prescribing is just the latest buzz phrase for "we can't really do anything, but we'll dress this up as a treatment". Because I think if you were interested in art classes (or whatever), it wouldn't be the lack of a GP prescription that stopped you going. As for social capital – I find it more than a bit patronising that you think you can and should tell me how I spend my time. We don't all rate our quality of life based on how many times we go for a walk, you know.I am just as capable of going to an art class (or whatever) as the next person if I decide I want to – but I don't want to, and I really don't want my next GP/MS nurse/neuro appointment to be focussed on social capital!
Have you ever asked why people with MS have between 2x and 7x greater risk of suicide than the general population? Have you ever asked why people with MS get divorced, become unemployed, get depressed or socially isolated? Can social prescribing help with any of these problems?
I think it would really depend on your expectations. Strikes me the expectations being placed on social prescriptions cannot possibly be met.Perhaps rather than prescribing a social activity, the questions that really should be asked are – what would you like to be doing and what are the barriers that prevent you doing that?And the answer will not be lack of a prescription.
JoH, I agree with your final question: what would you like to be doing and what are the barriers?I've worked this out myself but it seems other people might need prompting and guidance. I don't need social prescribing as I am aware of the free and low cost local activities near me and am already motivated for exercising.Volunteering is a good way of socialising I've found and also giving something back too.
Yes it would need to be discussed sensitively, don't make assumptions if someone is single and living alone, don't assume they are lonely. I have noticed since my ms diagnosis many people make the wrong assumptions about me.