Raising the bar – 3yr vision

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Chair of the ‘MS Service Provision in the UK: Raising the Bar’ steering group, Professor Gavin Giovannoni, sets out a succinct vision for the national initiative over the coming three years. 

Background 

Why should someone with MS who lives in place B get a different service to someone who lives in place A?

I have argued that variance, when it comes to the provision of healthcare services is a euphemism for inequality, representing the ‘haves’ and ‘have-nots’ in society. 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 – assuming they know about the quality of their service and are willing to do something about it.

The first MS variance meeting was very instructive in that it:

  1. 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.
  2. was inclusive: 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.
  3. 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 essential for the next phase of our project.
  4. helped us see 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.
  5. 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 enabled us to set priorities, or specific ‘workstreams’, that will allow us to set key objectives for the programmes of work going forward.

Our vision for the initiative is:

To improve MS services for all people with MS and their families, and to make delivering these services for all involved a rich and rewarding experience. 

This initiative will be successful if we can achieve the following tangible targets set over a three year period: 

Year 1 aim: Quality audit rollout

By the 31st July 2020, we would expect all participating centres to:

  • actively engage in a national quality audit 
    • to include providing metrics on the NICE quality standards 
    • and several other new metrics, which will be decided on at the meeting 
    • to allow us to assess how good or bad we are at achieving our aims
  • adopt the vision of 4+4 and aspire to meet the associated timeframes, for example
    • 75% of patients with uncomplicated MS to be diagnosed within 4 weeks of the specialist MS team receiving a referral letter with a query of suspected MS 
    • 75% of pwMS, eligible for DMTs under the NHSE algorithm, to have been offered, counselled and given a definite date for starting a DMT. 
    • these timeframes are compatible with the International Brain Health standards and are an optimal target to aim for.

Key outputs year 1

  1. Set the 4+4 ambition, test it and get adopted as a target across the community (at least 20 centres)
  2. Socialise with key policymakers, support/interest groups, industry and healthcare leaders
  3. Create a business case with the costs and benefits of achieving the 4+4 vision and how it will reduce variation.

Year 2: Patient partner programme rollout

At the end of year 2 (31st July 2021), we would expect pilot centres to:

  • have tested a nationally-developed patient partner programme 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. 
    • in an era in which knowledge has been democratised, people with MS should be able to participate in providing, and contributing to their own healthcare.
    • timings will be dependent on the scope of the programme and the funding. We envisage phase 1 being the development of the programme at pilot centres. Phase 2 delivering the programme at pilot centres and phase 3 the rollout of the programme nationally based on learnings and impact from phase 2. 
  • Alternatively, the patient partner programme will offer opportunities for pwMS to make connections with others in their area. This programme will be developed in partnership with patient organisations and will depend on:
    • HCPs to engage disempowered patients soon after diagnosis to recognise the importance of taking an active role in their healthcare
    • pwMS in leading the delivery of the programme

Key outputs year 2

  1. Determine how to collect data to meet the ambition
  2. Articulate the KPIs and reporting methodology
  3. Get policy makers to adopt the KPIs within a national framework (NHSE)
  4. Seek funding support and NHSE backing
  5. Centres to produce plans to remodel services to achieve the vision

Year 3: holistic management of MS and ‘no patient left behind’ 

At the end of year 3 (31st July 2022), we would expect all participating centres to:

  • be working differently and managing MS holistically, including programmes to:
    • screen and manage comorbidities  
    • promote lifestyle interventions
  • collect data on these new activities as part of the annual national audit. 
  • Adopt a ‘no patient left behind’ philosophy as part of this holistic management, and embed it 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, ethnic minorities or less well off patients to be disadvantaged by the service.

Key outputs year 3

  1. Rollout the use of the KPI to all centres with national reporting
  2. Centres change services with a determined ambition to achieve standards across the UK by the end of year 3

Overarching enablers

Leadership

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 and we propose to start a leadership training programme to equip people with the skills they need to do this

The leadership programme will be:

  • small and selective
  • focus on ‘doing’, i.e. part of the programme will involve participation and completion of a national project,
  • be run by Professor Gabriele De Luca, a shining example of what good leaders can do. Gabriele has experience from the AAN emerging leaders 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 propose to use the Variance platform to share best practice. Why reinvent something if it already exists? We expect all participating centres to:

  • share their successes and failures so that others can learn from them. 
  • share their materials and experiences with other centres so as to raise the bar for everyone and to create a collegiate atmosphere. 

The MS Academy, as an enabler of education, who already have the infrastructure to make sharing relatively easy, will support this. The MS Academy is educating the MSology community to create a workforce to deliver a world-class MS service for all patients whilst also creating succession planning and future proofing the work being undertaken. The MS Academy already delivers masterclasses for practitioners of differing skill sets, will be able to continue to support this work.

About the author

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5 comments

  • Hi Pro G,

    If appropriate or possible, is there any way you can make some of the resources available for any one interested in learning more about MS patho and management themselves? Knowledgeable patients make empowered consumers.

    Best wishes,

    Fulcrum

  • I’m very glad you’re doing this. It looks like it’s entirely aimed at professionals, not people with MS? Which is fine, but less us know any involvement people with MS can have.

    The #1 thing you could do to help equalise the experience of people with MS in this country, is make referrals to a neurologist available to everyone. It doesn’t matter for me now, but I spent many years being refused a referral to a neurologist by lots of different professionals in the NHS.

    There was nothing I could do, especially given how ill I was. NHS England told me GP’s could do whatever they liked, whatever their ‘clinical judgement’ was, which was totally arbitrary and they were all wrong.

    Either when someone asks for a referral, it needs to be mandatory, or there at least needs to be an objective appeals procedure where one can put one’s case.

    When I went to an event with other people with MS, they clearly perceived getting a referral to a neurologist as an easy, run-of-the-mill thing to do. I was very Northern, working class, and autistic among them, I would guess that’s why my experience was so different. And that my medical records told the medical professionals, basically, ‘This person is mentally ill and making up their symptoms, just ignore them.’ Except I’m not mentally ill and I did have undiagnosed and untreated MS. But once one’s records say the above, one is screwed.

    Even going private doesn’t solve it, because one still needs a referral from the NHS. I asked if a private GP could do the referral, I was told no. I begged neurologists to see me with no referral, I couldn’t find one that would. They can. Specialists who see someone privately don’t have to have a referral. But most of them insist on it.

    I could write a much better referral than a GP who doesn’t know me, doesn’t have time to bother, and doesn’t know about MS (or my other conditions I couldn’t get referrals for). I know myself, my life, my symptoms, I’d diagnosed myself correctly, and I’m now a published author. But no one cares what I have to say.

    Some people I meet think that the NHS has to give one referrals that one asks for. Which is not the case, the NHS can do whatever it wants. But wow those people must have had an easy ride of it, to think that. And I’m glad they did. But the question remains, why I’ve been through what I have?

    And you may not realise this is a problem, which is because the people who cannot get as far as seeing you? You never know they exist. Correlation vrs causation.

    The other main problem is access to treatment, that problem I am still dealing with, and it’s not at all unrelated to the above problem. Because of the above, I don’t have a record of MRI scans until late 2017 when gave up on the NHS and managed to see a neurologist privately, and I don’t have a record of failed DMT’s because I wasn’t on any. So I’m the product of 30 years of untreated MS, paediatric MS originally, a lifetime of neglect and negligence, and Secondary Progressive MS is hurtling towards me like a train that will make it even harder to access treatment.

    After 30 years of having MS, I finally managed to get a diagnosis privately, then was moved back to the NHS. I so wish I’d been put on Lemtrada. That the pyramid had been flipped. But no. Beta Interferon. So I’m stuck on that, it makes me more ill, I’m covered in bruises, and my cerebral atrophy marches on 😱 I need Lemtrada or HSCT, and I’m sure those rich and successful enough could get one. But me? Not so far. I will quite possibly never manage to get better treatment. And the horror and bitterness of that is pretty unbearable.

    • “But once one’s records say the above, one is screwed”

      I know the feeling, but in a differnt way…I am guessing my biometric record says “drug dealer”

      For a guy called Antonio Hesslop this false “drug dealer” label meant an innocent man lost his job, house and spouse, as the Home Office tried to deport him.

      I am surprised there are so many Kingpins with my name…Hope I am not being haunted by a Lancastrian (Liverpool) drug dealer. Haunted because the person died in prison 2 years ago…(My problems started longer ago than that).

      Anyway hopefully not more cavity-searches to look forward to:-)

      • Least they think you’re interesting! And they’ll show you some respect if they think you’re a Godfather. Customs are scary though. Good luck always proving it wasn’t you what done it… 🍀

  • I’ve never seen such UN-JOINED-UP-THINKING when it comes to the “service” us people who have been diagnosed with an incurable, progressive illness get.
    There should be NO need for a THREE YEAR period to get some consistency into effect for PWMS.
    It should be STANDARD, and it should have ALREADY been in effect for years, if not decades already.

    It could also maybe pointed out to NICE that a year of first line treatments costs the NHS in the tens of thousands of pounds per patient over MANY YEARS…wouldn’t it be more cost effective to use more than a glass of water to put out the fire when all things are considered and START with the more effective ones that probably work out the same in cost?

    Would they offer paracetamol to cancer patients and wait for the cancer to take a real hold instead of offering chemo from the get go?

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