Today is the 75th anniversary of the founding of the NHS. At 75, you are meant to be wise and full of sage advice. Unfortunately, the NHS finds itself underfunded, understaffed and in crisis. Many staff spend their days fighting fires, moving from one crisis to the next and often get through the day with the feeling that they could have done better. The question many commentators are asking is whether the NHS will survive.
Very few people I know, except a handful of rampant neoliberals, disagree with the founding principles of the NHS that healthcare is a basic human right and it should be equitable, i.e. based on clinical need, and free at the point of delivery, i.e. not your ability to pay. Sadly healthcare in the UK is neither equitable nor free at the point of delivery. People with money and education know how to hack the NHS systems to get quicker access, and this access is often using the private sector to jump the queue. This is why health outcomes vary so greatly across the UK. Sadly the management of MS is no exception.
When you look at healthcare systems worldwide, you realise that the UK spends too little of its GDP on health, including preventive and curative healthcare. We don’t allow market or evolutionary forces to allocate resources and drive up quality. In countries like Australia and many European countries, universal access to healthcare is possible with systems that allow them to respond to the country's needs using free market principles. However, unlike the USA, these countries tightly regulate their healthcare systems, preventing the kind of runaway healthcare inflation seen in the USA. Maybe the answer to population health lies between the extremes of the NHS in the UK and the assortment of healthcare systems in the USA. Or maybe I am wrong?
UK politicians, or at least conservative politicians, feel healthcare expenditure is a bottomless pit and that demand will always outstrip supply. I'm afraid I have to disagree with this premise. Spending more resources on preventive healthcare and wellness will make the population healthier, reducing the demand for healthcare. Politicians are too focused on the supply side of healthcare and how to ration it. Almost all the institutions the UK government has created to support the NHS are about rationing healthcare. I recently read that the NHS should be rebranded as the NHRS or the National Health Rationing Service. This is sad but true and explains why UK healthcare outcomes lag behind other high-income countries. I have little doubt that if we compared outcomes for MS in the UK with our close neighbours, pwMS in the UK wouldn’t do as well. If I had MS, I would want to live in Sweden or Australia.
Is there anything we can do about this state of affairs? Yes, we need to rethink healthcare and develop radically new delivery models. Firstly, more resources and energy should be spent on preventive healthcare. If preventive healthcare went into overdrive, starting at a very young age, we could reduce curative healthcare expenditure by a third within one generation. However, this would require fixing our broken society, starting with our education system and tackling inequality. Secondly, when it comes to chronic diseases, such as MS, we need to empower people to self-manage their disease as much as possible.
Self-management of chronic diseases should not be some glib statement but a full-throttle programme to upskill, activate and empower people to take control of their disease. Using MS as an example, this must include education programmes to teach people with MS about their disease and how to manage it. We would then need to remove all bottlenecks in the system and create self-referral pathways so pwMS can access what they need without going via their GP, MS clinical nurse specialist or neurologist. We need one electronic healthcare record controlled and managed by the pwMS.
My vision of self-management is very radical. I would expect pwMS to book their own MRI scans and blood tests, and the results would be fed back to them automatically. They will undergo regular automated monitoring, and any changes will be documented. This information will be feedback to the MS service via a patient dashboard and acted upon accordingly. AI will help patients interpret their results and triage them for a specific action, e.g. to have their DMT changed. Feedback loops will allow the system to learn and adapt. More time and resources will be spent on the holistic management of MS and prehabilitation rather than rehabilitation. For example, patients will be screened for sleep disorders or poor sleep hygiene using off-the-shelf consumer technologies. They will be contacted for a more detailed sleep health assessment if necessary. Your metabolic health will be checked and managed at home, not by the GP. The government will create incentives (carrots) and disincentives (sticks) to nudge pwMS towards healthier lifestyles. Social isolation and loneliness will be detected using smartphones and other applications, and these pwMS will be put on a high-risk register and offered additional resources. I envision you also using technology to assess and look after your mental, bone, bladder, bowel, skin and foot health. And why shouldn’t you?
We need new IT platforms and a safety net to look after pwMS who don’t engage with the self-management paradigm to achieve this vision. No pwMS should be left behind. High-risk and vulnerable patients will get more direct face-to-face attention because time will be freed up by other pwMS self-managing their disease. I have written about my vision for the future of MS care, and hence I don’t want to repeat myself here (please see ‘The future of MS care’, 15-Feb-2022).
I don’t think the NHS should be broken up and disbanded. We will always need a responsive healthcare system for emergencies. I should know. I have had two life-threatening health-related events in the last two-and-a-half-years, and the NHS was there to look after me. Both times my care was equitable and free at the point of access. Sadly when it came to my rehabilitation, I opted for a private service because the waiting time was ridiculously long, 13 weeks for my initial assessment. Therein lies the problem. The NHS is brilliant at acute emergency care but is letting the population down regarding chronic conditions and preventive medicine. I think we are letting pwMS down because we lack the capacity to do better.
I started MS-Selfie during the first COVID-19 lockdown in response to the need to help pwMS who couldn’t access MS services. MS-Selfie is simply an information resource. Many of you find it helpful, but could you imagine what would happen if this was linked to self-referral and management pathways for all your problems? I am sure your quality of life will be improved, and standard NHS healthcare utilisation will plummet.
I would be interested to hear your opinions about the NHS and your experiences with your healthcare system, and whether or not you are ready to take responsibility for managing your own MS. Should we challenge the status quo?
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Paid subscriptions to MS-Selfie are being used to administer the Newsletter and associated MS-Selfie microsite, which is now open to all readers. At the request of several readers, I have now added the option of making a one-off donation. To keep this initiative open to all readers, I would appreciate it if those who can afford a subscription to subscribe. For active paying subscribers, thank you; your contribution is much appreciated. Because of the falloff in paying subscribers, I am considering returning to a paywall that will give paying subscribers six months of unlimited access to all newsletters. At the same time, free subscribers will have a wait to access the newsletters later, not as an email, but on the substack site.
General Disclaimer: Please note that the opinions expressed here are those of Professor Giovannoni and do not necessarily reflect the positions of Barts and The London School of Medicine and Dentistry nor 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 own healthcare professional, who will be able to help you.
Happy 75th Birthday NHS