Tag: MS Academy

Time is Brain

So what has the UK’s poor performance in relation to cancer survival has to do with MS? A lot. These cancer statistics are collected as part of a national audit and are a bellwether for NHS services in general. If we had national MS statistics they would indicate similar problems, i.e. delays, delays, more delays and poorer outcomes. This is why we wrote a policy document ‘MS Brain Health: Time Matters’ to try and get the MS community to treat MS more urgently and effectively. This is also behind the motivation of our ‘MS Service Provision – Raising the Bar’ initiative to improve MS services and outcomes across the country. 

I would be interested to know if the same issues exist with MS as the do with cancer diagnosis and treatment? 

How long did it take to see your GP?

Did you feel you were wasting your GP’s time?

Did your GP interpret your initial symptoms correctly?

Were you promptly referred to see a neurologist?

How many GP visits did it take to get a neurology referral?

Were you forced to go via accident and emergency to see a neurologist?

How long did you wait to see a neurologist?

How long did it take to get a diagnosis of MS?

How long did it take to be started on treatment?

Are you being monitored for subclinical MRI activity with annual MRI scans?

Have you been offered escalation therapy or an immune reconstitution therapy?

Were you involved in the decision making around your treatment?

Etc. 

These are the kinds of data we need via a national MS audit to benchmark MS services. The idea is to use the data to get rid of unnecessary variation in the provision of MS services. 

Ruth  Thorlby. UK’s poor performance on cancer survival. BMJ 2019;367:l6122

Excerpts:

…. the UK had the lowest five-year survival rates for four out of seven cancers….

…. If international variations in cancer survival are real and represent important differences in healthcare systems, what have ICBP studies revealed about their causes? A 2015 survey of around 19 000 people aged ≥50 found that public knowledge of possible cancer symptoms was not substantially worse in the UK than in other countries, but people in the UK were more likely to worry about wasting their general practitioner’s time (34% agreed with this in the UK compared with 9% in Sweden)…..

….. A parallel study of GP referral practices across countries found an association between higher survival rates and GPs’ willingness to investigate or refer quickly, which led some to argue that health systems where GPs have a gatekeeping role were more likely to have poorer cancer outcomes….

…… Although differences between countries existed in the time it took for patients to see their GP for the first time and in time to onward referral, diagnostic tests, initial diagnosis, and start of treatment, these were not obviously associated with survival differences. Each country had a long “tail” of patients waiting many months to start treatment…..

….. Closing the gap between the UK and other countries will require further progress in all four devolved countries. In England, the NHS Long Term Plan, published in early 2019, contains a comprehensive plan for improving cancer services, including multiple strategies for earlier diagnosis with the aim that by 2028, 75% of cancers will be diagnosed at stage 1 or 2. This is ambitious in the current climate….. 

……  Interviewees for our 2018 report Unfinished Business were clear that the 2012 Health and Social Care Act brought unwanted organisational upheaval—for example, to cancer networks. A period of relative austerity in the English health service since 2012 has magnified other problems too. These include worsening workforce shortages in essential professions (such as general practice, diagnostics, and specialist nursing), the diversion of capital funding into everyday expenditure at the expense of maintenance and investment in new equipment, and, more broadly, a short term approach to planning services. Without tackling these fundamental problems, England will struggle to make its contribution to closing the survival gap between the UK and other countries…

CoI: multiple

Potential leader?

Earlier this year I asked the question “why should someone with MS who lives in place B get a different service to someone who lives in place A?” and 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. This was a prelude to our ‘Raising the Bar’ meeting in Birmingham. We have set an ambitious programme of work for the next three years and it is exciting to see the MS Academy who is organising the workstreams becoming de-facto the natural home in the UK for HCPs with a specialist interest in MS. 

The following are our Raising-the-Bar workstreams and the current leads:

  1. QUALITY AUDIT – Jeremy Hobart/Sue Thomas/MS Society/MS Trust ….
  2. BIG DATA – David Rog/Joela Mathews ….
  3. SOCIAL DETERMINANTS OF HEALTH – Helen Ford/Gavin Giovannoni …. 
  4. PATIENT PARTNER PROGRAMME – Shift.ms …. 
  5. HOLISTIC MANAGEMENT OF MS – Agne Straukien/TBC ….

To make these workstreams happen we are launching a leadership programme to train the next generation of collaborative leaders in the MS Space to make these workstreams happen and realise our dream of a better deal for people living with MS in the UK. 

To navigate the landscape of MS service provision in the UK, effective leadership is essential. However, the skills required to become a leader capable of impactful change are suboptimally developed at a time when they are most needed. The MS Academy has recognised this critical training gap and launched a 6-month multifaceted leadership programme tailored to MS experts.

The goals of the leadership programme are to (1) identify and develop future leaders from the MS field who have little leadership experience, (2) develop and implement a mentoring program between participants and established leaders and (3) enhance skills of those who have already assumed or are about to assume leadership roles within their Institutions, the MS field, and, more broadly, the field of neurology.

The programme will be run by Prof Gabriele De Luca (Consultant Neurologist, Oxford) and Barbara Hoese (Pentecore Coaching, Minnesota). Gabriele is an alumnus of the AAN emerging leaders leadership programme and is passionate about the field himself and Barbara set-up and runs the AAN emerging leaders programme. 

So if you have what it takes to be a next-generation leader and want to apply for the leadership course give it a go. We need young motivated people to realise our dreams. The skills you learn will allow you to do and accomplish extraordinary things.

Please see the MS Academy website for more details.

Help

I have been tasked with designing an International MS Masterclass to teach neurologists and other HCPS (healthcare professionals) about MS. The idea is to run four 2-day courses. I have put together the following draft programme and would appreciate your thoughts on it.

If you have MS is there anything that you want to be added, i.e. is there anything that you would want your HCPs to know about?

If you are an HCP are there any glaring omissions that should be added? Is this the kind, of course, you would interested in attending? Thanks.

It is important to realise that there is a large unmet educational need to help general neurologists skill-up for managing MS.

Reinventing the wheel or the 4×4

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:

  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. 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.
  3. 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.
  4. 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.
  5. 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.

YEAR 1

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?

YEAR 2

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?

YEAR 3

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.

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. 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.