The MS Academy held our first #MSVariance meeting on 1st and 2nd of November in Birmingham. We were oversubscribed, which would indicate that there is an appetite for change in the way we practice MSology in the UK. I learnt a lot from the meeting and had several of my assumptions challenged.
Lesson 1: Be more proactive about including women and other under-represented groups in the meeting from the beginning. Our apologies for not including women on the steering committee; it was my mistake. The steering committee self-selected each other based on a discussion we had about #MSVariance following a debate on this topic at the ABN earlier this year in Birmingham. We have already made amends and have approached some women to help taking things forward so that this initiative gains momentum.
Lesson 2: Variance does not imply inequality. I thought variance, in the context of MS services, as being a euphemism for inequality. It is not. The variance in MS services and their provision may arise at the top due to improvements in access and the rapid adoption of innovations. This then could act as a stimulus or other centres and individuals to up their game and to improve things. In other words, variance acts like an evolutionary selection pressure; i.e as a driver for improvement. The question is that we need to make this variation transparent so all can see it and respond to it. For this to happen we are going to need to set-up a rolling national audit.
Lesson 3: Don’t be too hard on ourselves and celebrate the successes. We were very fortunate to have Stephen Bleach a Times Editor and Journalist who has MS attend and speak at the meeting. He had written a personal account of having MS in the preceding week’s Sunday Times. He compared his journey with the disease to that of his late father’s. His father developed MS in the pre-DMT era when MS services were poorly developed and he tragically had a very poor outcome. At the end of the meeting he got up and reminded us to celebrate his success; his MS was diagnosed and treated rapidly and he is now doing very well and working full time. His future with MS may still be uncertain, but it promises to be a much better future than what his father had at the same stage. Stephen’s perspective is important, but his experience is what we need to replicate across the country. Time is brain and there are simply too many people with MS outside the system, with unacceptable delays getting into the system to be assessed for treatment. In addition, access to MS services is highly variable with some people having to travel long distances to be assessed.
Lesson 4: Don’t reinvent the wheel. There are a lot of initiatives that are currently running to address some of the issues that underpin #MSVariance. NHSE are reviewing the configuration and implementation of neuroscience services, which includes MS. GIRFT (get it right the first time) is also looking into what it can do to raise neurological standards across the country. What we clearly need are well-defined channels to disseminate information accurately and timely. It is clear that there are pockets of excellence across the country and that we need to celebrate these and get them to share best practice. The MS Trust has a mechanism to do this, with several cases studies that have been published on the MS Trust’s website. There is clearly an appetite for centres to be able to access each other’s protocols and this is something we can do relatively easily and effectively using the MS Academy.
Lesson 5: This initiative goes beyond DMTs. At the start of the meeting, there was some discussion about the focus of the initiative. Many attendees felt strongly that it should not only be about reducing variation in the prescribing of DMTs, but it should include the needs of all MSers, in particular, those with more advanced or progressive MS. I couldn’t agree more.
Lesson 6: Expanding the brief to look at the social determinants of health. These are clearly important for health in general and almost certainly play a role in MS outcomes. However, data presented on this specific topic show that more research is needed. On a similar note, there was some discussion about social capital and lifestyle and wellness. Therefore, we will need to think carefully about how we incorporate these components into any metrics we develop and specific programmes to improve social capital and wellness.
Lesson 7: Chief Energy Officer. As I left for the meeting on the first morning of the meeting my wife mentioned to me that the main role of a CEO is being changed to that Chief Energy Officer. She said that my role at the meeting was to create the necessary energy and to inspire people to make change happen and to take control. In fact, Ben Bridgewater, one of the external speakers, implored us to #TakeControl and #ToMakeItHappen. If we didn’t make it happen then no one else would. I must admit my energy levels have been rather low; too MSed out, which is why I have taken so long to pen this post. However, I am just back from a very special holiday and feel rested and energised.
Lesson 8: Patient Activation. There is a difference between ‘patient engagement’ and ‘patient activation’. George Pepper, from shift.ms, gave a brilliant talk on what true patient activation should look like. It was clear that we need to define it and to make it happen. Patients who are actively engaged in their care are the true change agents. What we need now need to do it create the environment both inside and outside the NHS. In fact, we are planning to do this for our #BrainHealth #TimeMatters initiative and the following is a draft programme to train MSers to become #MSActivists. Please note this initiative is global, but will also include MSers from the UK. If you have any ideas to add to the programme below please do not hesitate to contact me.
Draft BrainHealth Training Course for People with MS
(2-day course)
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Pre-reading and online content review, a needs analysis (online survey) and to prepare a short 2 min presentation on who you are and what delegates want to achieve as a Brain Health Champion / Ambassador
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Introduction – Gavin Giovannoni
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What is the MS Brain Health initiative and why is it important for people with MS?
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Introductions – each person does a 2-minute presentation
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Objectives of the BrainHealth Champions Programme – Gavin Giovannoni
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Why do we need Brain Health champions?
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How can you help?
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What is your role locally, nationally and internationally?
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Patient activation and empowerment – TBA
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This component will define what we mean about patient activation and how to empower yourself with knowledge. This will cover the essential components of what should be in a patient bill of rights and/or patient charter. It will also cover shared decision-making and what constitutes best practice in terms of shared-decision making.
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Health Policy and how it applies to the treatment of MS – External Speaker who is an expert on policy
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In this section, you will learn about health policy and how to use it to promote better MS services and ultimately better outcomes for people with MS.
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Personal branding, how to create an online profile and to use social media effectively – External Speaker who is an expert on branding and social media
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This will component of the training programme will cover (1) personal branding, (2) your online presence, (3) how to use social media and (4) how to use tools to automate your online activity.
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Brain Health Tools – OHPF
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This component will review the available Brain Health tools, patient check-list and future plans
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Breakout sessions to come up with new ideas for tools and initiatives to drive innovation and its adoption.
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Social Capital – TBA
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How important are the social determinants on MS outcomes?
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How to measure social capital?
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How to create or expand social capital?
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Review of the competitive space
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Lessons from other disease areas, e.g. dementia, type 1 diabetes
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Partnerships: setting-up partnerships with other groups
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How to share best practice
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Projects and mentoring scheme
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A session on potential projects to kick-start Brain Health initiatives locally
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How to get funding for projects
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Buddy up with a national mentor to help participants implement their Brain Health projects
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Follow-up webinars to review projects
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This will include online presentations of the specific Brain Health projects
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Conclusion
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Certificate of attendance and confirmation of being a Brain Health Champion
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Award for the best project
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Potential publications of best projects
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The inclusion of projects on Brain Health website
CoI: multiple
Important lessons, thanks for sharing.
"His father developed MS in the pre-DMT era when MS services were poorly developed and he tragically had a very poor outcome. At the end of the meeting he got up and reminded us to celebrate his success; his MS was diagnosed and treated rapidly and he is now doing very well and working full time. His future with MS may still be uncertain, but it promises to be a much better future than what his father had at the same stage."Wonder if he realizes how lucky he is to not suffer progressive diseaseright at the start. For those has anything changed..?And those are never mentioned in feel good speeches like this…why spoilthe MS illusion and the mood with uncomfortable realities.
This is a very inspiring post. How can I as a person with MS enrol on your Brain Health training course? I would like to help.
We plan to train several cohorts of expert patients and send them back to their countries and regions to set-up their own courses. Patient activation is about giving them the skills, confidence and tools. This needs to be a grass roots initiative.
So many excellent ideas in the Brain Health training course. It has a real relevance to people with advanced MS so probably medically retired but want to make make a contribution. These people may well already have implemented some of your ideas but would be delighted to share their knowledge and expertise.Possibly this is a good way to heighten the profile of MS to the public, make the public aware of MS and people with MS.I hope this idea does not die in the long grass
Welcome back to the Blog ProfG. Glad you're feeling reenergised.Also wish to thank others, especially MD for 'holding the fort' in your absence, and keeping the valuable information coming.It's very encouraging to read about the two day MS Academy event and what is being looked at to take forward from it.Thank you for acknowledging the need to address the lack of women on the steering group. As a woman with MS I want to emphasis the need to be proactive about the inclusion of women with the disease in pursuing the agenda items and developing the MSActivists programme. In no way denigrating the validity and value of the contributions made by Stephen and George, the fact that women don't appear to have had a presence I find offensive, when, as we know, there are 2-3x as many women with MS.Patient activation and empowerment. Confirming what you'll likely already know, there are those who can offer valuable input. Only this month I replied to emailed questions from one of Dawn Langdon's trainee psychologists who's doing research into what affects the decisions PwMS make about drug treatment.I agree with Patrick that there will be those of us who can perhaps usefully share aspects of our own experience, even if unwilling or unable to commit to training as an MSActivist. Really hope it all moves forward swimmingly!
Interestingly, George recorded and presented a video of Shift MSers and there was a good balance of males and females from Shift.ms. It was not only George. But we are living and learning all the time, which is why I have launched a personal campaign called #FatherOfDaughters