NHS in crisis: waiting lists, post-code prescribing and more ...

I suspect a few of these patients on the waiting will turn out to have MS, and waiting 9, 12 or 18 months for a diagnosis will come at a cost. MS waits for nobody.

You can’t be a good doctor without being a politician. So, I need to inform you about several elephants in the room. Although this newsletter is for pwMS living in the UK, it is also relevant to other healthcare systems. 

In this morning's Guardian (3-Oct-2024), there is a piece covering the latest Health Foundation report on Britain’s health. The headline states that the number of people in the UK who are out of work due to ill health is growing by 300,000 a year. It goes on to state that ‘people of working age who quit their job due to ill health were also three times less likely to return to employment than those in good health, adding to the number of people claiming disability benefits’. As someone who specialises in MS, this statement is spot on, which is why one of our therapeutic targets from a socioeconomic perspective is to keep people with MS well enough to have the option to continue working. Please note I say option as some pwMS may not necessarily want to continue working after being diagnosed with MS for personal and other reasons. 

However, in general, loss of employment due to ill health is often a slippery slope that results in the worsening of other MS-related symptoms, particularly mental health problems, and it reduces social capital. Our new labour government has started to chastise us in the NHS for taking the money (increased salaries and new posts) without delivering efficiency gains. This leads to a negative spiral of increased waiting times, worsening medical problems, and, hence, growing unemployment. 

At the same time, NHS Trusts (hospitals) are disincentivised from taking on more work. Management has told us to reject out-of-area referrals and repatriate patients from out-of-area back to their local service. The reason is that out-of-area patients are costing us money, time and resources, and they are clogging up the system and preventing us from seeing local patients promptly. The problem with this policy is that some local services can’t provide a full suite of MS services. For example, many smaller MS units can’t prescribe and administer highly effective DMTs because they don’t have access to these therapies on blueteq NHS England’s database for prescribing high-cost DMTs. Therefore, patients with MS at these centres are being prescribed modest efficacy DMTs and are not able to access more effective DMTs. For these patients to be adequately treated, the clinical commissioning boards must provide funding to establish a service level agreement (SLA) between NHS Trusts and us to see out-of-area patients. The SLA is essentially a contract between NHS Trusts to cover the cost of our services. 

I know a colleague and a person with MS are about to publish a paper highlighting regional and national variations in prescribing DMTs. They need to understand that a lot of the variation is not due to HCPs deliberately not offering pwMS high-efficacy DMTs but the fact that, at many centres, these therapies cannot be prescribed. Some of these centres can’t refer patients to major centres because of a lack of a contract to cover the cost of referral and treatment. The only option for them is to prescribe moderate efficacy platform therapies, i.e. they don’t have the option of flipping the pyramid.  

In short, postcode prescribing is back with a vengeance. 

This explains why many pwMS who want to be seen and managed at Barts Health NHS Trust are having their referrals rejected and/or being referred back to their local NHS hospital. Patients don’t really have a choice in the modern NHS. 

Another issue worth highlighting is that the NHS management has squandered the goodwill they had from the NHS staff. Staff working in the NHS are aggressively job-planned and must now account for every 15 minutes of their working week. The idea behind this is to stop shirking.  The truth is very few NHS staff are shirkers. However, the environment has made NHS staff ‘jobs worth’, and they are not prepared to take on any extra work outside their job description and/or job plan. This is very sad. The NHS was not like this when I started working there in 1993. In 1993, most NHS staff walked the extra mile to make things happen. This does not happen anymore. 

Recently, our managers asked us to do a waiting list initiative to reduce the number of patients waiting to see a neurologist, i.e. new appointments. I put my hand up and suggested we get 5 or 6 consultants to do a few whole-day Saturday clinics to clear the backlog. The consensus, however, was that this would signal to managers that our Department had enough neurologists and would jeopardise our business case for new staff. Another argument was that seeing extra patients over and above what we see now would put pressure on other resources, for example, neuroradiology, and it would make the waiting list even longer next time around. We seem to forget that real people, i.e. someone’s mother, father, son, daughter or grandparents, are on that waiting list and may suffer as a result of delayed diagnosis and treatment. I suspect a few of the patients on the waiting will turn out to have MS; waiting 9, 12 or 18 months for a diagnosis and treatment will come at a cost. MS waits for nobody. 

We have just published and released the second edition of our ‘Brain Health: Time Matters’ policy document on how we want pwMS to be diagnosed and managed. In the current NHS, it is tough to practice what you preach. All I can say is I am sorry, and the fact that I am opting out of direct day-to-day MS practice makes me feel like I am being a coward. I am still working in the NHS. I hope I get some traction on my MS prevention projects now that the NHS is prioritising preventive healthcare. 

Despite the doom and gloom, the NHS is still standing, and with inspired leadership, new systems and the will to make a difference, a lot can be done to turn it around. We don’t have an option other than to get behind the current Government if we want to maximise brain health for everyone living with MS. 

If any of the issues discussed here impact you, I would like to hear from you. 

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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.