Saving the NHS for people with MS

In parallel, people with MS would need to engage with a national Brain Health programme to manage their MS holistically.

I had dinner with medical colleagues over the weekend. We discussed what we would do if we were in charge of health policy to ‘Save the NHS’. My response could be summarised in two ways: what needs to be done at a systems level to make the NHS more responsive to the population's health needs and at a disease-specific level; in my case, the focus is on multiple sclerosis (MS). 

I would advise adopting a funding model that works in other high-income countries, such as Australia, where the population has universal health coverage but has a choice in how they want to access healthcare. Interestingly, Australia spends less on healthcare as a proportion of GDP than the UK and has better health outcomes across the board, and its average life expectancy continues to rise. In comparison, the UK is close to the bottom of the league table of high-income countries regarding healthcare outcomes for most diseases and increases in life expectancy in the UK have stalled. I find this very disturbing and ruminate about it a lot. 

At a disease-specific level, some straightforward wins can be had in the MS space. 

HAMSUs (hyperacute MS units)

Firstly, creating rapid diagnostic and treatment pathways to get people diagnosed and onto treatment will have the most significant long-term impact. Time is brain, and the earlier you diagnose and treat MS effectively, the more you can prevent the downstream end-organ damage and disability. A simple analogy that could be adopted is the hyperacute stroke units or HASUs. Can we create enough space in our current service to run rapid diagnostic pathways? I suspect the answer is yes, with minimal new resources required to make this happen. Preventing MS disability by effective early management of MS will have a significant socioeconomic impact. HAMSUs sound simple, but political will is needed to make them a reality. 

Symptomatic therapies

For pwMS, symptomatic problems as a consequence of MS impact quality of life and result in excess healthcare utilisation. Simply focusing on the four big ones, which account for the majority of unscheduled hospital admissions, would transform MS outcomes from an NHS perspective. 

In terms of excess healthcare utilisation this includes (1) bladder and bowel dysfunction, (2) falls, fractures and bone health, (3) swallowing problems (dysphagia) with aspiration pneumonia and finally (4) pressure sores. 

If we can reduce the burden of these four problems, I estimate we could reduce the need for unscheduled or urgent hospital admissions by about 40%. This will save the NHS hundreds of millions of pounds per annum. 

Hidden symptoms

From the perspective of the pwMS, I would focus on helping them self-manage hidden symptoms. New innovative methods will be needed to aid pwMS in self-diagnosing and self-managing hidden symptoms. I would focus on (1) sleep hygiene, (2) MS-related fatigue, (3) depression and anxiety and (4) sexual dysfunction. 

Brain Health

In parallel, pwMS would need to engage with a national Brain Health programme to manage their MS holistically. This would require a focus on lifestyle, metabolic and social health. This component of MS management gets very little attention because most specialist MS units need more bandwidth to take this on. This is why brain health needs to be done at a national level and be community-based. I know community-based brain health clinics for healthy people are easier said than done, but unless we start setting up brain health hubs linked to an education programme across the life course, we will rue this missed opportunity in the future. 

Adopting a brain-healthy lifestyle is never too late from a personal perspective. However, it is clear that good brain health behaviours start in childhood and probably have their greatest impact in mid-life. 

MS prevention

Finally, given the emerging data that EBV is the likely cause of MS and that preventing EBV infection or at least infectious mononucleosis may reduce the incidence of MS, it is a no-brainer that the NHS needs to get on board with MS prevention studies and strategies. For example, suppose an EBV vaccine or effective treatment for IM gets licensed. In that case, the NHS needs a rapid approval and adoption process before the innovation is licensed. Sadly, the NHS is known as being a very slow adopter of innovations and this impacts population health.

Conclusions

So yes, we can transform MS outcomes, address the increasing burden of MS care and save MS services in the NHS. I don’t believe the investment required to transform MS care will cost much. It will be relatively modest and have a significant payback in cost savings. I suspect the cost savings will occur within 1-2 years of implementing some of this programme's activities. The problem is that MS care is embedded in the NHS, which has system problems that must be changed. For example, we can’t diagnose MS rapidly without adequate neuroradiology capacity. Fall preventions need more physiotherapists. Swallowing assessments and aspiration pneumonia prevention require speech therapists. Technology may address some staff and service shortages, but all the abovementioned programmes need staff and buy-in from the broader MS community.

As a person with MS or another MS stakeholder, I would appreciate your comments on my take on how to change MS care in the NHS. I have been here before. I was responsible for helping start the Raising-the-Bar initiative, which incorporated many of these ideas. Sadly, this initiative died a quiet death due to COVID-19. I also had to resign from it as a result of my accident. Several of my colleagues have started a new initiative called TMSFA (Transforming MS for All). I hope TMSFA will make things happen. 

Do you think I have missed anything obvious? Are there lessons to be learnt from other countries? What has been tried and failed? What can you do as an individual to help?

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Please note that the opinions expressed here are those of Professor Giovannoni and do not necessarily reflect the positions of Queen Mary University of London or Barts Health NHS Trust. The advice is intended as general and should not be interpreted as personal clinical advice. If you have problems, please tell your healthcare professional, who will be able to help you.