Neurological Conditions
(2 years, 6 months ago)
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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.
Baroness Fraser of Craigmaddie (Con)
I thank the noble Lord, Lord Dubs, for securing this important debate. It is, unfortunately, late on a Thursday afternoon, but as he said, it coincides with the publication of the joint patient experience survey, undertaken for the first time by all four Neurological Alliances from across the UK. I declare lots of interests: I am a trustee of the Neurological Alliance of Scotland, I am chief executive of Cerebral Palsy Scotland and I chair the Scottish Government’s National Advisory Committee for Neurological Conditions.
As part of that, this debate and survey took me back to work undertaken in 2018 with the Scottish burden of disease study, which highlighted not only the invisibility of neurological conditions but, to use the not very good language of the study, the “burden” of living with a long-term, complex condition, and the burden that already places on health and care services. This population live for a long time and are already using health and care services, but are invisible. Improvements are therefore difficult to make because of that invisibility. The conclusions and recommendations of the Neurological Alliance survey illustrate how services are patchy and fragmented, but they give us a barometer for where to concentrate action. I have three areas for action that I would like to highlight.
First, we have to better understand prevalence. Data on numbers of all neurological conditions remains woeful. The data we do have is mostly estimates. We seriously underestimate prevalence due to the inaccurate and inconsistent way that neurological conditions are recorded across all healthcare settings. We have to look at the system of coding: how do we make it simpler?
At Cerebral Palsy Scotland, we have campaigned for the development of a national cerebral palsy register, building on existing work from Queen’s University Belfast, supported by the Northern Ireland Government, and work undertaken by the Welsh Government. Working on the principle that if you are not counted you do not count, part of ensuring better services is to prioritise reliable data in order to plan not only for future services but for future workforce needs.
Secondly, we have to deliver seamless care between the different parts of the system and to take a more holistic view of the workforce. It is important to look beyond neurologists. People with neurological conditions come into the NHS through numerous routes. That is part of the problem. The role of the consultant neurologist is to exclude conditions and to provide a diagnosis. It is important that this should be achieved as quickly and as efficiently as possible. However, since people with neurological conditions can live for many years post a diagnosis, the important question is: who will deliver their care? It will not be the neurologist.
As the noble Lord, Lord Dubs, outlined, clinical nurse specialists are key to managing care for some conditions, MS being one of them, but sadly too many other conditions do not have clinical nurse specialists and are therefore left out. We need to be more imaginative about roles and responsibilities in multidisciplinary teams and in planning for future workforce needs, and perhaps to work more collaboratively with other areas, such as MSK and stroke services.
The majority of health and care services required by this population are provided by primary and community care services and by AHPs. People with cerebral palsy, for example, rely on regular access to physiotherapy to prevent further deterioration and to stay well, but access to neuro physios and other rehabilitation services is completely inadequate and comes nowhere near the standards and guidelines set by NICE for adults with CP. It is the same for many other neurological conditions.
The Question refers to services covering the whole of health and care. As the noble Lord, Lord Dubs, also mentioned, this is Carers Week. Carers are an integral part of this workforce too. But I believe that anybody—health, care or social workers—who has any input into delivering care for someone with a varied and complex condition must have access to information and training about that condition. Far too often, it is left to the third sector to pick it up in a piecemeal and underfunded way that cannot hope to reach all those in need.
Thirdly, support for mental health needs to be provided at diagnosis. It has to be an integral part of condition management for children and adults. Too many people, children in particular, report that their mental health needs are not being met at all. If raised with professionals, their concerns are dismissed as being just a part of their condition that they have to live with. There are, in theory, a range of mental health services that can be accessed by people with neurological conditions but, again, there are huge variations in equity of access, both geographically but also for the different conditions.
To address the issues highlighted in the Neurological Alliance’s survey, we require leadership and vision. Will the Minister therefore commit not only to taking up the challenge of the noble Lord, Lord Dubs, but to developing an overall strategy to support people with neurological conditions? In Scotland, we already have the framework for action for neurological care and support, which I was involved in creating. The ambition must be that health and care services support people with neurological conditions to live well on their own terms, with access to the right person at the right time and in the right place. This is essential. I look forward to supporting the Government in achieving this ambition.
Lord Monks (Lab)
My Lords, I thank the noble Lord, Lord Dubs, not just for initiating this debate but for his work over many years in championing the fight that needs to go on all the time against MS and related neurological problems. I also thank the MS Society, which produced some very useful briefing material for this debate.
There is no need today to labour the destructive nature of these diseases, MS in particular. Like others in this debate, I come from the front line in the battle against MS. My son, for whom my wife and I care, is in the National Hospital for Neurology and Neurosurgery today, with complications to his advanced secondary progressive MS. He and we have had 20 years of it—20 years of overworked consultants and stressed MS nurses, and 20 years of feeling like poor relations to more fashionable illnesses.
The basic problem, in our view, is the shortage of skilled staff. I must say that, despite the shortages that exist, we have had excellent treatment at King’s College Hospital under the care of Dr Silber. But the pressures are obvious. As soon as you enter the clinic’s waiting room, large numbers of patients are milling around awaiting a consultation. Sometimes it resembles a railway station in the rush hour; the atmosphere is like that, rather than the calm and friendly system that you like to see when you go into a hospital.
How come, as the noble Lord, Lord Dubs, said, the UK ranks as 44th out of 45—I did not even know there were 45 European nations but apparently there are—in the number of neurologists if it is adjusted on a per capita basis? Do the Minister and the Government recognise these figures, which are so bad in comparison with France and Germany, which were mentioned earlier?
The Government often boast that the UK is a world leader in this and that. Occasionally, they might even be right. On MS, however, we are shameful laggards and I wonder whether the Minister would accept what I am saying with that particular charge? Is MS treatment not a prime candidate for the levelling-up agenda? I mean levelling up internationally, of course, against the best in class in Europe, rather than being right at the bottom of the league, but also levelling up nationally among the four nations. We have sharp regional imbalances; some parts of the country are better off than others at tackling MS by providing access to disease-modifying drugs and treatments.
Thankfully, there are exciting new drugs emerging to combat secondary progressive MS but, as has been said, their rollout is slow and they are subject to a postcode lottery. The MS Society’s survey found Northern Ireland to have the best access, while Wales and some of the English regions have the worst. The society is also worried about the establishment of integrated care systems and that these might widen the differences in MS treatment in particular, as different priorities are chosen within different systems. I wonder whether the Government share these worries. If so, how can we guard against even more inequality developing as far as the treatment of MS is concerned?
I ask the Minister: is it not time to launch a major levelling-up exercise for the neurological illnesses, with our place in that European league table firmly in our minds? Next, what can be done to address the urgent shortages in the workforce of people with neurological skills who can work together and provide the kind of holistic treatment that others have referred to? Finally, I agree very much with my noble friend Lord Dubs, and with what has just been said, about the need for a neuro task force that brings together all the relevant bodies in all four nations of the UK to address the challenges that we face on the MS front. What is the Government’s view on this proposal?
Baroness Thomas of Winchester (LD) [V]
My Lords, I too thank the noble Lord, Lord Dubs, for securing this debate, and the Neurological Alliance for undertaking such a large patient survey of people living with a neurological condition in the UK. Its findings include the views of people like me who are living with a muscle-wasting or neuromuscular condition, in my case Pompe Disease.
Muscular Dystrophy UK recently published Shining a Light, a report which demonstrated that people living with muscle-wasting conditions have struggled to access critical services such as specialist muscle clinical appointments, specialist respiratory care and specialist neuromuscular physiotherapy, especially because of the pandemic and shielding. This lack of provision has had a negative impact on their overall physical and mental well-being.
As a result, an ever-increasing backlog of patients is waiting for appointments and, in many cases, the delay in access to specialist services has resulted in a more acute progression of a person’s condition. This has, in turn, led to the need for additional treatments and longer stays in hospital, thus putting even more pressure on an already strained service. This is evident as Muscular Dystrophy UK’s findings indicated that delayed access to muscle clinics, physiotherapy and hydrotherapy would result in irreversible muscle weakness and muscle loss.
All people living with muscle-wasting conditions should be able to access fully equipped multidisciplinary teams, diagnostics and clinical services when they need them, no matter where they live in the UK. Staffing is a crucial aspect of improving neuromuscular care, and I support the need for the Government to develop a strategy to attract, recruit and retain the neuroscience workforce, specifically the front-line specialist nurses and other clinicians needed to deliver holistic care on a sustainable basis. I believe, as others have said, that establishing a neuro task force will go some way to solving this increasingly complex problem affecting this patient community.
Baroness Murphy (CB)
My Lords, I am so pleased that the noble Lord, Lord Dubs, raised this issue. One is always humbled in speaking in a debate where so many participants either can bear witness to the personal impact of a life-changing disorder or have been close enough to have supported people throughout.
I share with the noble Baroness, Lady Fraser, the notion that we want not only neurologists. She referred to what I call the “hit-and-run brigade”: you go, you see them, you are diagnosed and you are off. That is it; you might get a follow-up appointment if you are lucky. I know because I have been there: I have been one of those people. I know how difficult and frustrating it is to provide a service. I trained for two years at what was then called the National Hospital for Nervous Diseases in Queen Square and its outpost, a delightful hospital at Maida Vale. It was one of the most fulfilling expenses of my life. It was very lovely. They used to bring us junior doctors a little silver teapot every afternoon for afternoon tea. Those were the days, when the NHS was a little different if you were at a posh hospital, which that was. In the end, I retreated to my first love, psychiatry, but I have obviously seen a lot of neurological conditions since then.
The problem is that we are down to one neurologist per 170,000. France has one per 50,000. Italy has one per 5,000 head of population. They are very well-trained neurologists, who are almost all dually trained in psychiatry. That makes a phenomenal difference to access and to the importance of the specialty in the general bargaining power.
Some very welcome changes have happened. National clinical directors are to be appointed in neurology, neurosurgery and spinal surgery. They will be crucial, because the commissioning of these neuroscience services will be devolved rather than done centrally. Those appointments will be utterly crucial for making an impact. Noble Lords might ask what difference they will make, but I remind them about getting the right person in the right place. When I was at Queen Square, stroke disease was not a neurological condition, even though it is the commonest neurological condition there is. It took a neurologist, Charles Warlow, in Edinburgh and his colleagues saying, “No, important physicians and neurologists should be interested in this as a core business.” In part, we need that focus again around these very disabling, chronic disorders.
I have a special interest in one range of disorders: that spectrum that goes from Parkinson’s disease through Lewy body dementia through Alzheimer’s disease. They are similar, but if you treat one with the wrong medication you get adverse reactions. They are highly disturbing and very disabling conditions. It is a very sad way to end your life with any of these conditions when they become very serious. Because we do not have access to neurology or specialist neuropsychiatrists, we have a situation where access to diagnosis and to the right kind of support and care just does not happen. People fight for months to try to get a diagnosis; it goes on for years. People get one diagnosis after another, and shoved from pillar to post. Sometimes it is only five to 10 years later that people actually get the right diagnosis.
It is crucial that we get some kind of agreement about who should care for these people and how we should get them channelled. The number is increasing as the population ages; naturally, the prevalence is rising in the older population. I give major support to the notion that we should have a neurological task force to look at the increasing demands of these serious and disabling disorders.
Baroness Brinton (LD) [V]
My Lords, I, too, thank the noble Lord, Lord Dubs, for securing this important debate. I also thank the Neurological Alliance, the Chartered Society of Physiotherapy, the Royal College of Occupational Therapists, Parkinson’s UK, the MS Society and Merck for their helpful briefings. I declare my interest as a vice-president of the Local Government Association.
The noble Lord, Lord Monks, spoke movingly of his son’s personal experience: that, despite the excellent treatment, the service feels in constant crisis, not least because of staff shortages—not just clinicians. As the noble Baroness, Lady Fraser, outlined, the Neurological Alliance surveyed more than 8,500 people with neurological conditions, including Parkinson’s, about their experiences. It found a shortage of neurology specialists, as outlined by other noble Lords. It is shocking that the UK was ranked 44 out of 45 European countries for the number of neurologists. The Royal College of Physicians found that 48% of consultant geriatricians in England are set to retire within the next 10 years.
Mental health services, which we have debated quite a lot in your Lordships’ House recently, are an absolutely integral aspect of care for people with neurological conditions, but a Written Answer to a Parliamentary Question two years ago revealed that the Government were on course to miss the recruitment target for expanding the mental health workforce by 50%. I do not think the last two years have helped that.
Delays to treatment and care can change your life for ever. More than half of adults, children and young people living with a neurological condition experienced delays to routine appointments with specialists last year. The Neurological Alliance is calling on the UK Governments to establish a neurology task force to get to the bottom of these problems and create real change.
Along with the noble Baroness, Lady Murphy, I am particularly interested in wider healthcare support, including rehabilitation, and was delighted to receive the briefings from physiotherapists and occupational therapists because, with my own long-term condition, I am very reliant on their expertise. The Royal College of Occupational Therapists surveyed staff working in rehab multidisciplinary teams, including physios, speech and language therapists, nurse specialists, dieticians and many more. Its survey found that 82% had seen an increase in demand for rehab support in the past six months. It is vital to those with chronic and deteriorating long-term conditions to have access to rehabilitation, so the ability for patients to access rehab is a lifeline, frankly. If it is not there, deterioration can speed up.
This is an area that cannot continue to work in constant crisis. One of the main problems in the short staffing in the MDTs is the load on clinicians. This is not just the allied healthcare professionals but those invisible administrators, who have a key role in smoothing access to the full range of services for patients. That is why the alliance is seeking a fully funded national two-year rehab strategy to ensure that people who have seen significant deterioration in their condition have the therapeutic support they need.
Too often, one key part of public services is involved too late. It is one that society—particularly the health sector, I am afraid—just does not plan for. I am referring to housing. Research over many years by Habinteg, a housing association that campaigns for the raising of accessibility standards in new homes, shows that for a small amount extra to pay at the time of a new build or major renovation, adaptations for patients with mobility problems can be overcome cheaply and easily. One thing that many patients with neurological conditions say is that the adaptions to their home are difficult and expensive.
Finally, one expert is too often overlooked. The expert patient programme is for people with long-term conditions, where patients take a six-week course and are trained and supported, often by tutors who have a long-term condition themselves. The course aims to give patients the confidence to self-manage their health and be active participants in the care of their condition. The course looks at general topics, including healthy eating, dealing with pain, relaxation techniques and coping with negative feelings, along with very specific advice on their condition. I know of it from the rheumatology sector, but I know friends who are expert patients in the MS community. Multidisciplinary teams welcome their expert patients. A patient’s understanding of when to seek help means more timely interventions and, often, improved outcomes. It is not just beneficial for the patients, it is cost-effective.
Is there specific support to spread the expert patient programmes to more neurological conditions? Will the Minister respond to the Neurological Alliance’s recommendation of a neurology task force? When do the Government plan to publish a workforce strategy for the neurology workforce? As we discussed a lot in debate on the then Health and Care Bill, this is one element of wider workforce planning that really needs to happen now and be visible. Therefore, how will the Government ensure that any such strategy delivers a sufficient number of health professionals to fill the gaps in staffing for neurological conditions?
Baroness Wheeler (Lab)
I am very pleased that my noble friend Lord Dubs secured this important debate and grateful for his excellent speech. We know that he values every opportunity to underline the urgent need to improve services in social care for all people with neurological conditions. We have often spoken about MS, the impact the disease is having on his son and the experience of his whole family in caring for and supporting him. We also heard from my noble friend Lord Monks of his experience of the care of his son. He also spoke very movingly today.
One in three people with MS does not get the social care or rehabilitation they need to cope with the disease and be able to lead as independent a life as possible. The experience of both my noble friends over many years, sadly, reflects that. The noble Baroness, Lady Thomas, also made a compelling plea for muscle-wasting and other neurological conditions to be better and more effectively managed through timely treatment and access to rehabilitation services and specialist support, with regular access to specialist teams.
I also pay tribute to the work of the 80 charities within the Neurological Alliance. I hope yesterday’s Westminster Hall launch of its excellent survey—which I was, sadly, unable to attend—went well and received the attention and support it deserves. Noble Lords’ contributions have drawn heavily on the survey results in respect of a range of neurological conditions, including MS, dementia, migraine and Parkinson’s. My noble friend Lady Gale is always a great advocate of the work of Parkinson’s UK, but was, sadly, unable to be here today.
My special focus is on stroke, as a carer for a disabled adult stroke recoverer. Stroke strikes every five minutes in the UK and 100,000 people have strokes each year. It is a leading cause of death and adult disability in the UK, with more than two-thirds of people who have had a stroke leaving hospital with a disability. To underline the neuro survey key data highlighted by noble Lords, the one in six people in the UK who have a neurological condition have the lowest health-related quality of life of any long-term condition. One in five adults waited more than 12 months between seeing a GP and then a neurologist, and 55% experienced referral delays in routine neurologist appointments—all of which needs to change, as we have heard. The Chartered Society of Physiotherapy estimates that only 40% of people receive essential neurorehabilitation.
Workforce shortages are the biggest reason behind delays, and I look forward to the Minister explaining the Government’s specific plans to address the chronic neurological staff shortages across all key conditions. How do they account for the UK having only two neurologists for each seven that France and Germany have, and how is this situation being addressed? Does this not reinforce the urgent need for the long-term workforce plan to tackle these and other acute staff shortages, as we have been calling for? In Parliament yesterday, almost as an aside, the Secretary of State referred to work being undertaken “on a 15-year strategy”. That is the first time we have heard mention of any timeframe, so perhaps the Minister could tell us more about who is leading the strategy’s development and when it is expected to be published.
Specifically on MS, last year, NHS England’s Getting it Right First Time adult neurology report recommended that all MS teams have enough administrative staff to carry out non-clinical duties and free up clinicians’ time to treat patients. Can the Minister update the Committee on what progress has been made?
The Government’s acceptance of the alliance’s call for a UK-wide neurological task force of key stakeholders from Governments, departments, professional bodies and the voluntary sector must be a key factor in identifying how treatment, rehabilitation and social care support can be provided and improved, running alongside the strategy, resources, front-line specialist workforce and other clinicians that are vitally needed where shortages are most acute. I hope that the Minister will recognise this as a key way forward.
I have a few further points. The My Neuro Survey rightly makes much of the impact on unpaid carers and families of the lack of support available for the people they care for; a number of speakers mentioned this. In this national Carers Week, it is important that carers feature strongly in today’s debate. According to the Alzheimer’s Society, unpaid carers supporting someone with dementia save the economy £11 billion every year. On Tuesday, the Minister promised that the Government want to help carers to make sure that they are looked after while they provide a service for their loved ones. Can he say what specific immediate steps are being taken to do this?
Specifically on social care, NHS data shows that only 14% of the total social care budget is spent on people living with neurological conditions. Living well with neurological disease means getting the right home support and equipment, regular occupational and physio therapy, and eating, washing, dressing and other essential social care help. But as the latest social care directors’ ADASS survey showed, more than 500,000 people in England are waiting for a social care assessment, for care to begin or for a review of their care. Can the Minister explain how this immediate situation is to be addressed, given that the existing resources pledged for social care at best just shore up existing wholly inadequate services?
Finally, what research is being undertaken by the Government into the impact of long Covid on neurological conditions, following the two studies by Mater Hospital in Dublin that found “significant evidence” of it leading to new neurological conditions? Have the Government any further information on or assessment of this? How is this troubling link being monitored? I look forward to the Minister’s response on all these issues.
The Parliamentary Under-Secretary of State, Department of Health and Social Care (Lord Kamall) (Con)
My Lords, I thank all noble Lords who took part in this debate, especially the noble Lord, Lord Dubs, for raising this issue. I also thank him and the noble Lord, Lord Monks, for sharing their personal experiences. As the noble Baroness, Lady Wheeler, rightly said, hearing people’s personal experiences, rather than simply reading words on a page, really does bring it home. I also thank the noble Baroness, Lady Murphy, for sharing her experience from the other side, as it were; that was a very valuable contribution for us all.
I should start by talking about the overall plan. I will then focus on some of the conditions discussed today. We have to acknowledge that the pandemic affected health and care services, which is why we must have a recovery service. The priority of that recovery is to address the pressures caused by the pandemic. Noble Lords will be aware of the Delivery Plan for Tackling the COVID-19 Backlog of Elective Care, published in February 2022, which sets out a long-term plan to look at bringing that down. It also looks at creating extra capacity, including through partnerships with the independent sector and in the NHS, to undertake more complex work, such as neurosurgery, with improvements for the most clinically urgent patients.
To support the ambitions in the delivery plan, the department has committed more than £8 billion over the next three years, from 2022 to 2025. This investment is in addition to the £2 billion elective recovery fund and the £700 million targeted investment fund already made available to the health and care system to push the recovery forward.
We know that there can be significant variation in the services provided for people with neurological conditions. I can confirm that NHS England is currently recruiting for a national clinical director for neurology to tackle this variation and provide national leadership and specialist clinical advice. This will complement existing work to improve neurology services—particularly the work of the neuroscience transformation programme, which will support services to deliver the right service at the right time for neurology patients closer to home. The noble Baroness, Lady Brinton, and others made this point.
NHS England also continues to work closely with the National Neurosciences Advisory Group to ensure continued service improvement and support neurosurgery networks with transformation and implementing changes that could have the highest impact. The National Neurosciences Advisory Group has developed a series of best practice optimal pathways for neurosurgery and neurology. They are being used to inform the proposed changes to the neurology service model, which will in turn be used to revise the service specification for neurology. This work is anticipated to be completed during this financial year.
We also know we cannot increase health service capacity and access to treatment without expanding our workforce capacity. As was made clear in many debates during the passage of the Health and Care Act, the Government commissioned Health Education England to come up with a strategy. The Act mandates the Government to publish a workforce strategy and plan every five years, on not only a national level but a bottom-up local level. We want to avoid Soviet Union-style planning which does not understand local communities, local trusts and areas. Bottom-up planning will happen at primary and secondary care level, trust level and ICS level. I will make some more comments about that.
We have made some progress so far with nearly 29,000 more hospital and community health service staff in March 2022 compared to the previous year, which includes nearly 11,000 more nurses and 4,300 more doctors. Working with the NHS, we will continue to identify and address these gaps across key types of staff. To support long-term planning, as I said, we have commissioned Health Education England.
On the social care workforce specifically, we know that many people living with neurological conditions rely on support from care workers. We recognise the challenges the sector faces in recruiting and retaining staff. Noble Lords will be aware that we launched the national register. It was voluntary at first, as some concerns were raised in the initial consultation about people not wanting to register. We want to build that confidence so we can understand the existing landscape and the myriad qualifications. How can we ensure we rationalise it so that it is a more professional service which people will feel attracted to, and what issues will we have to address so that we recruit more? To support local authorities and providers to address workforce pressures, there is the health and care visa and shortage occupation list, alongside work with DWP. We hope to boost recruitment in these areas.
Let me go into some more specific issues. It might be handy for me to discuss how the NHS generally, and the department, look at neurological conditions. When I was being briefed on this, I asked if I could be sent a list of all the neurological conditions. I now realise that was a naive question; apparently there are over 600 types. That shows that awareness is one of the big issues and barriers. If you want change, you have to realise what the issue is. If you think of how we as a society have developed, things that we now consider neurological conditions are things where, in the old days, people were told to pull themselves together. There were quite offensive names for some conditions that people had. We are now far more aware of them, which is really important. They can be broadly categorised into sudden onset conditions, intermittent and unpredictable conditions, progressive conditions and stable neurological conditions.
The noble Lord, Lord Dubs, and the noble Baroness, Lady Wheeler, rightly raised the issue of unpaid carers. During the debate there was consensus on the work that unpaid carers do, often with little reward, and what support should be available. As a result of the pressure rightfully put by noble Lords on the Government, the department and NHS have been interacting with Carers UK. I also put on record our thanks to the noble Baroness, Lady Pitkeathley, for all her work in this area and for pushing the Government to make sure that we first understand what support is needed. Sometimes it can be as simple as respite; at other times, far more support is needed. It is also about awareness and training, and we have the reform funding programme. We want to make sure that we not only recruit more motivated carers, giving them a proper career path, but do not forget the unpaid carers—recognising who is an unpaid carer and what support can be available, working from national government level and at local level.
The noble Lord, Lord Dubs, and my noble friend Lady Fraser also raised the issue of mental health. In addition to managing neurological conditions, we recognise that patients quite often do not get enough mental health support. We are committed to expanding mental health services. We also have the long-term physical health pathway. We are integrating improving access to psychological therapies—IAPT services—and have launched a public call for evidence in developing a new cross-government 10-year plan for mental health. I hope I can encourage all noble Lords to highlight that.
The noble Lords, Lord Dubs and Lord Monks, rightly raised the issue of multiple sclerosis and spoke about their own experiences of it. NICE has updated its guidance on management, diagnosis, treatment, care and support of people with MS. Following diagnosis, and with a management strategy in place, we aim for most people with MS to be cared for through routine access to primary and secondary care. NHS England has commissioned the specialised elements of MS care through the 25 specialised neurological treatment centres across England. The various parts of the NHS systems have also started to implement the guidance set out in the progressive neurological conditions RightCare toolkit, which includes a specific section on MS and was developed in collaboration with key stakeholders, such as the MS Trust and the MS Society. The RightCare toolkit provides the opportunity to assess and benchmark current systems to find out how we can improve. But it also has to be a continuous learning system, not just one set of guidelines that are followed for ages until someone tells you they are out of date.
Another important aspect of this is the research, as my noble friend Lady Fraser rightly raised. The Department of Health and Social Care funds research into neurological conditions through the National Institute for Health and Care Research. In 2019-20 the NIHR spent about £54 million on research through the Medical Research Council and is open to more bids, but it does not assign for particular conditions. Quite often, why NIHR does not assign a pot for certain conditions comes up in debates. It is open to research bids in all areas, including neurological conditions and so far it has given £54 million, but it welcomes more applications. Other areas are really important as well, such as motor neurone disease and others. That is why we urge the research community to come forward.
We also want to make sure that there is more awareness throughout the workforce, as noble Lords rightly said. As a speciality, neurology is popular and generally sees a 100% fill rate for training places. There has been an expansion in neurology posts across England and postgraduate trainees will start in August 2022. The National School of Healthcare Science is recruiting more trainee scientists to its three-year, work-based training programme, which leads to a master’s degree in neurosensory sciences. But the point is taken that it is not only these specialists we need; we also need to make sure that staff across the system are aware of these conditions and how we deal with them.
The noble Lord, Lord Dubs, raised the issue of cannabis. In November 2018 the UK Government legalised cannabis for medical use but imposed strict criteria. Specialist doctors are allowed to prescribe medicinal cannabis but there are still concerns about this not being enough people. I take the point that the noble Lord, Lord Dubs, made: if the patients feel that it benefits them, then it benefits them. That is important. I can offer to write to the noble Lord, Lord Dubs, or to have a further discussion.
We have seen increases in the number of full-time doctors working in this specialty, in neurology, including consultants, but as I have said, it is important that they are not just specialists.
Turning to strategies, there are two at the moment, one for dementia and the other for acquired brain injury. Once again, I am open to suggestions and happy to listen if people want to raise issues about this.
I should just touch on the neurosciences transformation programme. The NSTP itself came up with a new definition for specialised neurology and a model for new neurology services. The clinical pathways and the optimal pathways have been developed and indicators are being designed in partnership with stakeholders to support services delivering the right service at the right time for all neurology patients and, critically, closer to home or in the home. What we hope to see is that this approach will be built in as part of the integrated pathways, through the ICSs being set up.
On some questions that I am unable to give specific answers to—for example, on housing and a number of other issues—I offer to write to noble Lords. I think the noble Lord, Lord Dubs, asked whether I am prepared to have a meeting. Usually I say yes—I am sure noble Lords recognise that I met frequently during the passage of the Health and Care Act—but I just want to make sure I am the relevant Minister. If the relevant Minister is not available, I am very happy to meet, or to meet with the relevant Minister. I would really like to learn more and, either on my own or in partnership with the relevant Minister, to meet with the noble Lord, Lord Dubs—
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.