Neurological Conditions

Lord Dubs Excerpts

Thursday 9th June 2022 Grand Committee

Asked by

[Lord Dubs]

To ask Her Majesty’s Government what steps they are taking (1) to ensure that people with neurological conditions receive timely access to health and care services, and (2) to ensure that the sector’s workforce is properly staffed to deal with demand.

[Lord Dubs (Lab)]

My Lords, I welcome the opportunity to debate this matter in order to hear the Government’s plans to improve health and care services for people with neurological conditions and to ensure that the sector’s workforce is properly staffed and adequate to meet demand.

It is estimated that one in six people have a neurological condition. Living with such a condition can be a daily battle—a battle made harder by a system that turns away people who are in need of mental health support, where people experience waits of more than year for a few minutes with a specialist and where people do not get the information they need when diagnosed. Of course, in one sense, this is an invisible condition for many people. Some people have obvious neurological conditions but some do not and, because it is invisible, they do not get the care and support they would otherwise attract.

I thank some of the people with neurological conditions who have been helpful and the organisations that represent them, including the MS Society, the Neurological Alliance, the MS Trust, Overcoming MS, MS National Therapy Centres and the Migraine Trust, which provided briefings to inform my remarks today. Of course, I also thank the client engagement team from Parliament, which carried out a survey.

I should mention in passing that, yesterday, I went to a Carers Week event in the Attlee Room in Portcullis House. A lot of caring organisations—not necessarily those connected with neurology—were there to explain what they are about. It was a very impressive occasion, particularly in terms of the voluntary carers and the work they do. It left me quite emotionally drained when I heard how they cope and how people have spent years caring without any time off.

I should declare an interest. My son has MS, a condition that affects 130,000 people in the UK. It can be painful and exhausting, and can cause problems with how people walk, move, see, think and feel. It can gets worse over time. However, it can be managed—at least partly—through timely treatment, access to rehabilitation services, lifestyle changes and specialist support.

Yesterday, the Neurological Alliance published its report, Together for the 1 in 6. Unfortunately, I was unable to be there because I was in a Select Committee but I have managed to read the report quickly. It is based on a survey of some 8,500 people affected by neurological conditions across the UK. The data found that one in five adults waited

“more than 12 months between first seeing a GP and seeing a neurologist.”

More than half of people with MS had experienced long delays; I will not go through all the statistics.

In the year to March 2022, the number of people waiting for a neurology appointment on the NHS rose from 120,000 to 180,000, according to the latest NHS waiting times data. Some 37% of people are waiting more than 18 weeks for a neurology appointment. The Migraine Trust is calling for simple pathways for those who need to be referred to a neurology or specialist migraine clinic with reduced waiting times. We are talking about a situation where there are long waiting times and difficulties in getting access to mental health support. Most of the surveys support the finding that there is a lack of support; people therefore feel that the system has failed them.

Let me turn to treatments. The Neurological Alliance survey showed that 35% of adults with MS who require drug treatments in hospital experienced delays in accessing these essential treatments in the past year, including disease-modifying therapies. DMTs are a vital form of MS care as they can slow the progression of MS for some patients. DMTs need to be started as early as possible after diagnosis, which of course means that early diagnosis is needed, and prolonged delays between doses can be harmful. Of course, there is a difference between those people who have progressive MS and those who have relapsing-remitting MS. There are more therapies available for relapsing-remitting MS than there are for progressive MS. This is also made more acute because relapsing-remitting MS sometimes converts into progressive MS.

There are very few treatment options for people with progressive MS. There is a new one called siponimod. Although this should be good news, NHS data shows that, nearly a year after its approval by NICE, just 1.5% of those eligible have been able to try it. The problem is that there are long waiting times for some new therapies. It is vital that people with neurological conditions have access to symptom management treatments and evidence-based lifestyle changes. The MS Society found that only 10% of people with MS were able to access any form of symptom management treatments.

Some people living with MS use cannabis to alleviate their symptoms. Although there is a product called Sativex, very few—I think only 17.5%—of those for whom it would be helpful have access to it. Some people say that cannabis does not help, but my view is that where a patient feels that cannabis is helpful it is by definition helpful. It is no good a doctor saying there is no evidence it is helpful; if the patient feels it is helpful then it clearly helps.

I also thank the noble Lord, Lord Blencathra, who regrets that he is not able to be here this afternoon, for sharing his experience accessing fampridine, which has been helpful for mobility. However, again, NICE has decided to no longer prescribe this drug to selected new patients.

Let me talk briefly about the workforce in neuroscience. This is what I find quite shocking. According to the Association of British Neurologists, the UK ranks 44 out of 45 European nations for the number of neurologists for each person with a neurological condition. Adjusted for the population, France and Germany have over seven neurologists for every two that the UK has. These are absolutely unacceptable figures, which mean that the caseload for neurologists in this country is much too high and they cannot give each patient the treatment they need.

Let me turn very briefly to MS specialist nurses. Neurological nurses in the more general sense, but specifically specialist MS nurses, can provide excellent help. They provide a holistic approach. I believe that if the Minister was to do an assessment he would find that having MS nurses reduces the pressure on GPs and might even reduce hospital admissions. It could be financially helpful as well as beneficial to the patients. Some studies should be carried out to see whether this hypothesis can be borne out in fact. Many people with MS do not have access to MS nurses. The MS Society’s survey found that 63% of professionals were finding it extremely, or very, challenging to provide a good service to their patients.

Most of the problems I have discussed will not be overcome without addressing the chronic workforce shortages in neuroscience, whether neurologists, MS nurses or other specialists who can provide support. I would welcome the Minister’s remarks on what the Government are doing to attract, recruit and retain the neuroscience and other allied health professionals needed to deliver holistic care on a sustainable basis. The key is holistic care; there are piecemeal approaches, but holistic care is the most efficient and effective way of providing support. I believe that specialist MS nurses are a profession who can possibly co-ordinate support in a way that can lessen the burden on others. The NHS must take forward recommendations from NHS England’s Getting It Right First Time adult neurology report and must urgently explore opportunities to free up clinicians’ time by ensuring all MS teams have a sufficient number of admin staff to carry out non-clinical duties. Again, that would reduce the burden on doctors and specialist nurses.

Regarding the way forward and positive action, I would be extremely grateful if the Minister would meet MS and neurological charities, including the MS Society and the Neurological Alliance, to discuss establishing what I would call a “neuro-taskforce” to bring together relevant departments, health and social care bodies, professional bodies, people affected by neurological conditions and the voluntary sector from all four nations of the UK. That should cover all areas of health and care, including rehabilitation, mental health, and access to treatments. I would like the Minister to see this as a challenge. It would be a good way forward. It is a way to improve the conditions of people with neurological conditions. It is long overdue, and I hope the Minister will accept this proposal.

--- Later in debate ---

[Lord Dubs (Lab)]

The task force.

[Lord Kamall (Con)]

The task force, yes—I thank the noble Lord for the prompt.

That is all I will say for now. I apologise if I have not covered all the questions; I will endeavour to write. I will diligently read Hansard and offer to write to noble Lords on those questions I have not answered. I thank the noble Lord, Lord Dubs, for raising this issue and all noble Lords for taking part in the debate and for their questions. It means I have to go back to the department and not only learn more myself but make sure we have some meaningful answers to the questions that noble Lords asked.