We were rightly criticised last year for holding a meeting that highlighted the problem of variance in the provision of MS services, in the NHS. without a plan and vision about how to change things. I hope we have listened to you. The follow on meeting that we are hosting next month (8th-9th July) has a more ambitious agenda; it will even come with a 3-year action plan.
I have always made the argument that variance, when it comes to the provision of healthcare services, is a euphemism for inequality and that simply represents the haves and have-nots in society and the world. Why should someone with MS who lives in place B, or country Y, get a different service to someone with lives in place A or country X? On the other side of the coin, variability creates the engine for change; it is the catalyst for people to do something about the poor services they are providing or receiving; that is assuming they know about the quality of their service and are willing to do something about it.
My colleagues have told me that I shouldn’t beat myself up too much over the problems and criticisms of our first meeting; after all, it was very instructive in that it:
- Brought us together as a wider MS community and allowed us to recognise and reflect on the challenges we face in addressing the variance in the NHS.
- The meeting was inclusive in that there was no hierarchy in terms of the importance of the people who deliver MS services. We identified ourselves as equals, or partners, and included people with MS.
- The meeting made us realise that we have cognitive biases that need to be addressed to make the community inclusive and more diverse. Diversity of ideas is going to be the catalyst for the next phase of our project.
- We also realised that variance is not necessarily bad. We need some variance and ways to measure it so that the outliers at the upper end stimulate change. The next meeting is called ‘Raising the Bar’ and refers to improving services across the board.
- The meeting also allowed us to get away from the NHS rat race and provided quality thinking time, i.e. time to reflect on the task at hand. This has allowed us to set priorities or specific work streams that will allow us to set key objectives for the programmes of work going forward.
As the chair of the committee, I have been asked to set out my vision for the initiative and define what success will look like for this initiative. To make it tangible I have defined targets at year 1, 2 and 3 and beyond.
At the end of next year, I would expect all participating centres to actively engage in a national quality audit. This will include providing metrics on the NICE quality standards and several other new metrics that will allow us to assess how good or bad we are at achieving what we have set out to achieve.
My vision is 4×4, i.e. for 75% of patients with uncomplicated MS to be diagnosed within 4 weeks of the specialist MS team receiving a referral letter with a diagnosis of suggestive of MS and for 75% of pwMS, eligible for DMTs under the NHSE guidelines, to be have been offered, counselled and given a date for starting a DMT. Is this too much to expect? These time frames are compatible with our International Brain Health standards so why wouldn’t we aspire to meet them?
At the end of year 2, all participating centres will have a patient partner programme in place to upskill pwMS on how to navigate their local MS services and how to self-monitor and self-manage their MS. This programme will be developed in partnership with patient organisations and will depend on local champions to make it happen. We are in an era in which knowledge has been democratised. Why shouldn’t people with MS participate in providing their own healthcare and contributing to their own healthcare?
Participating centres will be working differently and managing MS holistically. This will include programmes to screen and manage comorbidities and to promote lifestyle interventions. Participating centres will collect data on these new activities as part of the annual national audit. As part of this holistic management of MS, there will be a ‘no patient left behind’ philosophy embedded in all MS services. This will require systems to make sure that all people with MS, who are covered by a particular service, will have access to that service. We don’t want vulnerable, less educated or less well off patients to be disadvantaged by the service.
It was clear to us at last year’s meeting that for our vision to be realised we need a new generation of leaders to make things happen. We are therefore proposing putting in place a leadership training programme to equip people with the skills to make things happen. The leadership programme will be small and selective and will focus on doing, i.e. as part of the programme delegates will be expected to participate in and complete a national project. This will be run by Gabriele De Luca who is a shining example of what good leaders can do. Gabriele has experience from the AAN young leadership programme and is passionate about the field himself. It may be worthwhile coming to, and participating in, our meeting just to access the leadership training programme.
SHARING BEST PRACTICE
As always the wheel has usually been invented. Most ideas are not new, but how they have been tested and implemented may be new. We are proposing to use the Variance platform to share best practice. Why reinvent something if it already exists? We expect all centres to share their successes and failures so that others can learn from them. This will hopefully allow MS centres to share their materials and experiences with other centres so as to raise the bar for everyone and to create a collegiate atmosphere. The advantage the MS Academy has is that we already have the infrastructure to make sharing relatively easy.
So if you are reading this post and are attending this year’s meeting don’t be shy; please submit a poster to the meeting on something in your service that you are proud of, or even something you are not so proud of. We will select 3 or 4 posters for a platform presentation to allow wider discussion.
If you have not registered already please do so now there are a few remaining places.
13 thoughts on “Reinventing the wheel or the 4×4”
Is NHS Wales onboard?
One of the most uplifting and inspiring reads. This is a brilliant way to progress provision for PwMS. I’d hope as a bonus it’ll make working within the field more rewarding for all the providers.
My only caveat to such a positive initiative is that I wish every centre was on board and not only a number of them.
Please can we book as interested patients?
There will be pwMS attending the meeting, but as representatives of shift.ms and their centres. There are limited places and hence you would need to register with your MS Centre.
Not sure what you mean by MS centre?
Whilst I volunteer for Shift.ms and have undertaken some totally independent campaigning – on the apparent discrepancies in legislation regarding the use of the word Disabled and how that impacts pwMS, especially around access to transport concessions – I am treated at the JR and one of your fellow panellists is my neurologist.
Should I ask the JR team if I can attach myself to their coat tails?
Dominic, how about starting up your own CIC – Community Interest Company about MS? Or something along those lines.
With your independent campaigning. Then you could attend these MS conferences on those grounds (possibly).
It shouldn’t need to cost much… if anything to set up a CIC.
Thanks Prof G. I appreciate your post and believe it’s the right approach to ensuring equality of treatment. However the cynic in me would say if the same effort is spent on curing ms would all this be relevant? I fundamentally believe ms is one disease that should of been cured at least 10 years ago!
I agree with you. But trying to convince the world that we have found the cause of MS is difficult.
It is simple, prove it.
Ah. If only it was simple. Causation theory is anything but simple, which is why we have so many falsehoods around. CCSVI etc.
More importantly to accept anything as medical fact requires 10 years and 3 clinical trials at cost of 100 million. Pharma have all the cards.
and what will be the cure? we dont know the pathology
Consider this post liked. Excited to hear about outcome of next meeting. Also kudos to the team for working “no hierarchy” but also recognising the importance of leadership