Baroness Gale
To ask Her Majesty’s Government what assessment they have made of the effects of the COVID-19 pandemic on people with neurological conditions and their access to health and care services; and what steps they will take to restart specialist neurology services.
Baroness Gale (Lab) [V]
My Lords, I am pleased to have the opportunity to debate this matter today in order to hear the Government’s plans to restart specialist neurology services after the devastating pandemic. I thank all Members who are taking part and I look forward to their contributions.
I declare an interest as co-chair of the All-Party Parliamentary Group on Parkinson’s, which is the fastest growing neurological condition in the world. It is a complex and debilitating condition with no cure, so quality health and care services are vital to help people with Parkinson’s manage their condition. By quality neurological services, I mean that people should be able to access consultants, specialist nurses, physiotherapists, speech and language therapists, occupational therapists and mental health professionals. These services are also vital to people with multiple sclerosis, epilepsy, motor neurone disease, migraine and other disorders of the brain, spinal cord and nervous system that affect at least one in six people in England.
The 2019 Neurological Alliance report, Neuro Patience, described the variability of health and care services for people with neurological conditions in England. It also highlighted how overstretched the neurology workforce is and indicated that people with neurological conditions have a poorer overall experience of care than those living with other long-term conditions.
We know the pandemic has affected everyone. However, those living with neurological conditions have seen their symptoms worsen. Since March 2020, people with neurological conditions have been locked in their homes; in many cases, their physical state has deteriorated and they have been without access to the vital therapy services that help them maintain their well-being. Emerging research suggests that some people with, or recovering from, Covid-19 can experience neurological symptoms, which will add extra pressure to the already overstretched services.
Like many health charities, Parkinson’s UK conducted a survey of how the pandemic affected their supporters in 2020. One in four said that the Covid restrictions negatively affected their mental health and a third said that it impacted their physical health. Over a third of people with the condition experienced increased symptoms including slowness of movement, stiffness and fatigue, and over a quarter experienced increased tremor and sleep problems. One in 10 people with Parkinson’s also reported having distressing hallucinations. Family members, friends and carers, particularly spouses or partners of people with Parkinson’s, were also affected by the pandemic. Nearly seven in 10 took on more caring responsibilities, and almost half of the people with Parkinson’s receiving social care support at home received less care during the pandemic.
In fact, recent NHS data shows an increase in waiting times for access to specialist services for people with neurological conditions. The data shows that more people are being referred for specialist care by their GP. However, it also shows there has been a significant increase in the number of people waiting more than a year for treatment.
Neurological services are struggling to cope with the number of patients. Can the Minister say what progress is being made by the NHS England/NHS Improvement neuroscience transformation programme, provide details about how it will improve care for the one in six people living with a neurological condition and tell us when it might conclude? What proportion of the extra funding awarded to the NHS has been allocated for neurological services to restart? How will the Government address the workforce issues?
Will the Minister also commit to introducing a national strategy for neurorehabilitation, with strong leadership in the NHS to drive forward this vital work? We know from NHS data that access to neurosurgery —and, in the case of Parkinson’s, deep brain stimulation, or DBS—was impacted by the pandemic last year. On average, 20 new DBS procedures were completed per month in England in 2019. However, that fell to around 135 new procedures in total for the whole of 2020. DBS can be a life-changing treatment for some people with Parkinson’s. It is not a cure, but it can drastically improve the physical symptoms of the condition and reduce the amount of medication a person takes each day.
Further delays to the restart of DBS and other neurosurgery could be disastrous for people with Parkinson’s and those with other neurological conditions. Even a few months delay can mean that some people are no longer suitable for DBS or other neurosurgical procedures. I understand that the NHS March guidance said that elective procedures should be restarted, and payments were introduced to incentivise integrated care systems to schedule them. Can the Minister explain what this will mean for the restart of neurosurgical procedures, in particular DBS for people with Parkinson’s?
Although I am sure that many will welcome the move to virtual healthcare appointments to maintain the well-being of patients, NHS data shows that there are significant variations in access to these appointments based on where one lives. While many people with neurological conditions welcome these virtual appointments as they reduce travel time to hospital, not everyone benefits from them. Some may be unfamiliar with the technology or find that it does not work. Charities have heard reports of connectivity issues, and people may not have the necessary equipment to take part in these virtual appointments. Others with neurological conditions have also shared their concerns about the security and privacy of virtual appointments.
People with neurological conditions and professionals have said that a phone appointment, for instance, cannot accurately assess people with movement-related symptoms. Many professionals have said that it is harder for them to assess how the individual’s carer is managing, and I know from Carers UK’s insight and research that carers have faced increasing pressure during the pandemic. For treatments such as speech and language, physiotherapy or where a professional manipulates muscles or joints, face-to-face appointments are the most effective. It is therefore crucial that patients have the right to choose how they interact with their health professionals. Can the Minister give a commitment to ensuring that patients are given that right?
I have posed several questions to the Minister, the answers to which people living with neurological conditions are desperate to hear as they look to the future. I hope that the Minister can respond to them today. However, to explore them further, would she be prepared to meet with me and others with an interest in this subject? I look forward to the Minister’s response.
Baroness Greengross (CB) [V]
My Lords, I declare my interests as co-chair of the All-Party Parliamentary Group on Dementia. Dementia is an umbrella term used to describe a range of progressive neurological disorders, of which there are more than 200 known types. Some 25% of those who have died of Covid-19 in the UK also had some form of dementia, and more generally there is increasing awareness that Covid-19 affected people with dementia quite differently from non-dementia patients. There is still much we do not know about how Covid-19 and dementia interact, and much more research is needed in this area.
Sadly, research funding for dementia has reduced by 75% since the start of the pandemic, as charities and other private organisations which fund this research have lost money over the past year and cannot fund efforts to continue this work, so it is really serious. And it is not just dementia research funding that has suffered during this pandemic. According to the MS Society, 70% of research into other neurological conditions has stopped, as the noble Baroness, Lady Gale, so ably described. The Government have pledged to double dementia research funding as part of the dementia moonshot. Will they also commit to similar funding increases for other neurological conditions? I hope the Minister can tell us that they will.
The number of people dying of neurological conditions generally has increased significantly in recent years. Dementia is now the single highest cause of death in the UK, according to ONS figures. Thousands more are now living with neurological conditions. In some cases, if diagnosed or treated early, they can continue to live a productive and independent life. We know, however, that during this pandemic access to specialists and other medical help has not been easy due to the pressure on the NHS. The problems predate the pandemic, though, as for many years this country has had a shortage of neuroscience specialists. According to Alzheimer’s Research UK, it takes two years, on average, to diagnose someone after they have developed dementia. This diagnosis time will have become much longer during the pandemic, meaning that chances of early prevention that may improve quality of life are sadly lost.
The human mind is something of which we still have only limited knowledge. Much more research is needed to help us really understand the human mind and how to treat neurological conditions. Our health systems also need to prioritise brain and neurological health, as increasingly these areas are becoming our greatest health challenge as a society.
Lord Shinkwin (Con)
My Lords, it is a pleasure to follow the noble Baroness, Lady Greengross. I refer to my entry in the register as a vice-president of the Royal College of Speech and Language Therapists.
I also have a personal interest. It is not an exaggeration to say that I owe my life to my then GP, Dr Christopher Baillie, who referred me for an emergency MRI 25 years ago. I saw him in the morning; I had the MRI at the local NHS trust that evening. Within days I had an appointment with a neurologist, who diagnosed life-threatening compression of the brain stem. Another couple of months, and the damage would have been irreversible; another six, and it would have been lights out. In my case, major neurosurgery meant that I am still here, but I am acutely aware that, had I been one of the more than 150,000 people who were waiting for a neurology appointment in March 2021, 10,000 of whom have been waiting for more than a year, it would have been too late.
It is imperative that, as we address the severe backlog in appointments and treatment caused by the immense Covid-19-induced pressures on our NHS, we also optimise people’s prospects for recovery post-treatment through access to rehabilitation services. According to a report on people’s experiences of accessing speech and language therapy, for example, during the first UK-wide lockdown, published by the Royal College of Speech and Language Therapists in March this year, 80% of people living with neurological conditions had had no face-to-face speech and language therapy since June 2020. No wonder 40% of people living with neurological conditions said their needs had got worse.
Will the Minister commit to reappointing a national clinical director for neurology? I echo the call by the noble Baroness, Lady Gale, for a national strategy and a national leadership position to be put in place to drive improvements in neuro-rehabilitation.
Lord MacKenzie of Culkein (Lab) [V]
My Lords, I shall concentrate briefly on the effects of Covid-19 on people living with motor neurone disease and where we go from here. Covid-19 has seriously reduced face-to-face GP appointments, which may well explain why, just as an example, at King’s College Hospital there has been a drop of some 35% in referrals to the motor neurone disease centre. That was compounded by the fact that there was a four-month period without any therapy clinics, leading to 200 fewer therapy contacts. No doubt that pattern is reflected throughout the country.
Motor neurone disease, as we know, is a rapidly progressive disease, with diagnosis difficult at the very best of times. Covid-related delays in referrals and delays in access to medication, to therapies such as physio and speech therapy, for example, and to other treatments and support mechanisms make it really difficult for people with MND to maintain function and maximise their quality of life. That is the backdrop—perhaps inevitable, given the need to deploy staff during the crisis—but what to do now? That is what I know noble Lords will want to hear from the Minister. What is the plan to restore neurology services as soon as possible? I understand that a recovery plan is in place for cancer services. Will the Government commit to a similar plan for neurology services? Will they commit to working with NHS England, with NHS Improvement and with appropriate patient groups, healthcare professionals and commissioners to get us back as quickly as possible to pre-pandemic levels?
We hear a lot of the mantra “build back better” these days. Well, there is much to build back better in the health service and, within that, a clear need for a firm commitment, as has already been said, to build a national strategy for neuro-rehabilitation in the National Health Service. Much as I am an admirer of Professor Sir Bruce Keogh and his many good works, I think he was wrong in recommending the abolition of the post of national clinical director for neurology, and the Government were wrong in adopting that recommendation. It is imperative, in my view, that we have an end to the long government neglect of neuro-rehabilitation. We must have a national clinical lead to drive real improvement, and I hope the Minister will have something positive to say in that respect when she comes to her winding-up speech.
Lord Vaizey of Didcot (Con)
My Lords, this debate is a salutary reminder of the range of neurological conditions that have been affected by the pandemic. I speak in my capacity as the president of SUDEP Action, a local charity in my former constituency of Wantage. SUDEP stands for “sudden death in epilepsy”; it is perhaps astonishing to learn that 21 people a week die suddenly of epilepsy, often in the prime of their life, and that 50% of those deaths could be avoided with proper treatment. In fact, epilepsy is the second most frequently reported potentially treatable cause of death. The number of women who are pregnant and dying of epilepsy has also doubled in the last few years.
SUDEP Action has led international research on the pandemic’s impact on epilepsy and bereaved communities throughout 2021, along with the University of Oxford and Newcastle University. These statistics will echo some that have already been cited for other conditions: 40% of people with epilepsy had worsening health during the first wave of the pandemic; almost all epilepsy sufferers have reported increasing mental strain; a third have experienced issues with accessing care; a quarter have trouble getting their medication; and one in five have not seen a health professional in a year.
Two decades ago, the Government had a national audit of epilepsy death, which brought these deaths out of the shadows, but only recently have steps been taken to implement some of its recommendations. Of course, as has been echoed in other speeches, the opportunity to implement those changes has been severely put back by the impact of the pandemic. SUDEP Action has put in place a number of protocols to help people suffering with epilepsy. It works with 1,200 health professionals to ensure that those suffering from epilepsy can use a checklist to check their health, and works with an app that allows it to monitor the condition of 4,000 patients. This wonderful charity that I work with would clearly like to see—like many other charities, I suspect—that, when the eventual inquiry into the Covid-19 pandemic takes place, we look not just at Covid deaths but at the deaths of people who suffered from other conditions and whose healthcare has been impacted.
More long term, we need to level up epilepsy services and care provision, providing access in the community to a named co-ordinator of care for each individual with epilepsy. A vital levelling up of tailored communications of the risk of epilepsy is also needed nationally, just as we broadcast the risks of asthma or diabetes. These resources already exist but they require national rollout and implementation, and support from government.
Baroness Eaton (Con) [V]
My Lords, 22q11 syndrome is a common neurodevelopmental disability hiding in plain sight because it is massively undiagnosed, yet 128,000 people in the UK are estimated to be affected. A prevalence of one in 500 of the population is reported—twice that of Down’s syndrome and almost six times that of cystic fibrosis. Its effects, unique to each individual, range from fatal heart defects, catastrophic immune deficiency and severe learning difficulties through to mild behavioural problems, speech and language issues and facial characteristics. Neurodevelopmentally, these children have challenges in learning, with developmental delays in speech, cognition and motor development. Many are affected by behavioural and psychiatric issues. It is a multisystem disorder and the greatest genetic risk factor for schizophrenia.
The lack of awareness of 22q11 syndrome means that there is an extreme lack of specialist services and, often, a lack of understanding of children’s learning challenges. Many were asked to shield during the pandemic and the services they need were greatly affected. Appointments were either lost completely, with hospital clinics shut down and therapy services unable to proceed, or substituted with telephone conversations. Many missed months of school due to their medical issues. Home-schooling packs were often inadequate for meeting their needs and did not cover the requirements under their educational healthcare plan or individual education plans. Their mental health often suffered and parents reported more behavioural issues. Progress was already slow, compared with their peers, and many have fallen back even further educationally.
The long-term outcomes will likely prove more severe than previously expected, meaning a greater difficulty in attaining the baseline levels required to enable them to progress into post-16 education. Given the difficulties for children and young people affected by neurodisabilities such 22q11 to catch up and recover lost education, how will the Government support them to ensure that they achieve their best possible educational outcomes? What reassurances can my noble friend the Minister provide to those families that support will be forthcoming?
Baroness Blackwood of North Oxford (Con) [V]
My Lords, I would like to raise an especially neglected area of neurology: autonomic dysfunction. This neglect has been exacerbated, but not created, by the pressures of the pandemic. I declare my interest as chair of Genomics England and an autonomic patient myself. I thank Professor Chris Mathias in particular for his help in preparing this contribution.
Autonomic dysfunction describes several conditions that cause malfunction of the autonomic nervous system, which controls the automatic survival functions of the body that we do not consciously think about, such as heart rate, blood pressure or kidney function—processes that we all take for granted until they go wrong. Autonomic dysfunction can be intermittent; it ranges from mild inconvenience to severe disability. For example, those with mild autonomic mediated syncope can faint once or twice in their lives, but others can faint several times a day, risking falls, broken bones and, sometimes, traumatic brain injury. Postural tachycardia syndrome, which I have, causes a wide range of autonomic symptoms. It is a deceptive, invisible illness that disproportionately affects young women; they can look very healthy when not symptomatic so are often diagnosed with anxiety or eating disorders and disbelieved. However, researchers compare the disability of PoTS to that of COPD or congestive cardiac failure.
Autonomic dysfunction can also occur as secondary to neurological conditions such as Parkinson’s, spinal injuries and MS, as well as common conditions such as diabetes and rheumatoid arthritis. It is not rare: it affects 70 million people worldwide, but it is accepted that the true prevalence is higher due to underdiagnosis. In most cases there is no cure, but it is possible to improve symptoms with medication and lifestyle adaptations. However, despite the high prevalence and significant disability, most patients take years to be diagnosed due to poor clinical and public awareness.
Even when diagnosed, getting treatment is extremely challenging. The few clinics that do exist are simply overwhelmed. Patients from Derriford Hospital autonomic clinic have contacted me in desperation because their clinic is being closed without a further plan for autonomic patients in that region. It is the only service in the area; other autonomic clinics are not taking referrals due to demand. It is a picture of a few specialists offering pockets of excellence and responding to aspects of autonomic dysfunction, rather than integrated services that can fully respond to the multisystem challenges that the condition presents. I believe that UCL now has the only integrated autonomic unit in the country.
Low awareness among non-specialists, especially in primary care, means that patients often have inconsistent management and difficulty in accessing special care. Together, this means unnecessary deterioration for patients. This is widely reported by patients and clinical experts but noble Lords do not have to take their word for it. The DWP’s own guide to medical conditions states:
“Although 25% of people with PoTS are unable to work or attend education, 80% to 90% will improve with treatment and 60% will return to previous levels of functioning.”
The opposite is of course true. It could not be clearer: autonomic dysfunction is a common condition that causes significant disability but, with diagnosis and treatment, symptoms can be mitigated and managed. Despite this, our clinical services, training and awareness are woefully inadequate, and autonomic patients are suffering serious inequalities as a result. I ask the Minister in her response to acknowledge the inadequacy of autonomic services and set out her plan to rectify this, including the publication of a national neurology strategy and clear national leadership.
Baroness Finlay of Llandaff (CB) [V]
My Lords, I declare that I am a patron of the Motor Neurone Disease Association and a vice-president of both Hospice UK and Marie Curie. We are all most grateful to the noble Baroness, Lady Gale, for securing this important debate because the pandemic has had a catastrophic effect on services.
Most hospice services are largely funded through charitable donations—that is, hands in pockets from the thousands of families around the country who are eternally grateful for the excellent services that they received and continue to receive. However, in the pandemic, the money dried up. The Government were extremely supportive and provided funding but there is a real worry that, over time, the overall level of donation will not return to previous levels.
We have seen delays in support procedures for patients with motor neurone disease, such as gastrostomy, which can be essential for nutrition and hydration. Two-thirds of MND specialist centres reported that end-of-life care has been compromised during the pandemic. Some hospices did not have the required level of specialist trained staff to admit patients using non-invasive ventilation or even suctioning or were confused about the specific PEE they needed, and beds closed, highlighted in Marie Curie’s recent report, Better End of Life.
Added to this, the messages from campaigners for assisted dying have been particularly frightening, controversial for some people and at times misleading, especially for those newly diagnosed and coming to terms with their illness. Specialist services do a remarkable job of empowering people to live well, with technology assistance allowing people to continue to work, write books, run businesses and remain active participants in their families’ lives. The Motor Neurone Disease Association signposts people to empower them, as well as driving research forward.
I hope that the Government will confirm that, as the Covid-19 threat is lowered, they will work with NHS England and NHS Improvement, commissioners, healthcare professionals, professional bodies and patient groups to ensure that services are restored to their pre-pandemic levels as soon as possible. Where possible, these services should be improved to plug gaps. This means that NHS England and NHS Improvement must develop a recovery strategy for neurology services, matching—as the noble Lord, Lord MacKenzie, has said—the recovery plan developed for cancer services.
Finally, can the Government confirm that they now recognise that hospices and other palliative care providers are providing a core clinical service that needs secure NHS funding to provide high-quality palliative and end-of-life care for everyone who needs it? That care is needed early in a disease, so that people are adequately supported. This is not just about the last phase of their illness.
Baroness Browning (Con) [V]
My Lords, I too congratulate the noble Baroness, Lady Gale, on securing this very important debate. When Covid-19 first struck in 2020 and we began the first lockdown, I do not think that enough was known—for very obvious reasons—about the impact that Covid-19 has on the brain and, necessarily, on neurological conditions that already exist. We have seen how it can affect people who have neurological conditions after they recover, but the impact on those already diagnosed did not appear to be that well recognised. I hope that, now we are this much further on, the Government will ensure that we capture data more effectively to make sure that those who are doubly at risk because of a neurological condition are safeguarded.
During that first lockdown in 2020, I was a carer for family members with Alzheimer’s and with epilepsy. I can testify to what is, 15 months on, a very clear diminution in their mental health state and, particularly regarding Alzheimer’s, the ability to be aware enough to enjoy life as we would hope. I therefore ask my noble friend to ensure that the Government listen to what is said in this debate, because we need to capture that data and make sure that, in future, the warning goes out to all those who are severely at risk.
In particular, I think it is worth mentioning that, when somebody with dementia needs intensive care in hospital, there is a very big question mark on the part of doctors as to whether that is advisable, because of the impact of the treatment itself in intensive care on somebody with dementia—certainly somebody with advanced dementia. I hope that we will, in future, widen that list of people who are vulnerable and who need to be doubly careful.
May I also add my support for the reappointment of a national clinical director for neurology? There are so many diverse conditions that come under the heading of neurology and it is absolutely essential that there is some control at the centre with somebody who can take a wider view across the country.
Baroness Gardner of Parkes (Con) [V]
My Lords, 40 years ago this year, my eldest daughter was diagnosed with multiple sclerosis. She is the vice-chairman of the Multiple Sclerosis Trust and has been active in its work.
I know that this past year has been a massive challenge for everyone; nowhere has this been more acutely felt than in the NHS, especially by neurological patients and those awaiting medical treatment. The House of Lords briefing, which was contributed to by the Neurological Alliance, states:
“In February 2020 … just 38 people had been waiting more than a year for a neurology appointment, 169 for a neurosurgery appointment. However, by March 2021, according to recent NHS England and NHS Improvement data, more than 150,000 people were waiting for a neurology appointment and more than 60,000 for a neurosurgery appointment. More than 10,000 have been waiting for more than a year … This has profound implications, and could mean delays to diagnosis and treatment … Without access to specialist expertise patients cannot receive a confirmed diagnosis and begin accessing treatment and support for this complex and often rapidly progressive condition. In multiple sclerosis (MS), delayed diagnosis could mean a delay to access treatments which could slow or even stop the progression of the condition.”
We have seen how NHS staff have been so resilient in this pandemic. We are for ever grateful for their individual and team efforts. For some patients, online consultations have been beneficial as the patient has not needed to travel and is seen on time. However, medical appointments cannot replace a physical exam and the nuances of a face-to-face appointment, which are so important in helping with diagnosis or treatment in neurological cases. It is important that patients are allowed face-to-face appointments once more to enable health professionals to do their job as effectively as possible.
I urge the Government to restore care and access to physical consultations for those with neurological conditions to pre-pandemic levels; to look at a co-ordinated approach across departments and care, from rehabilitation services to earlier access to social or mental health care; and even to consider a national clinical director for neurology to pull all these services together and work across organisations, as neurological conditions come in so many different guises.
Baroness Brinton (LD) [V]
My Lords, I, too, thank the noble Baroness, Lady Gale, for securing this important debate.
We have heard reports from noble Lords of the impact of Covid on neurological services, as well as of the shocking numbers of people who have not had the appointments, diagnoses or treatments they needed to manage their disease during the disruption to the NHS during the pandemic. It is important to recognise that, over the past 14 months, doctors, special nurse practitioners, speech and language therapists and other allied healthcare professionals working with those with neurological conditions have often been moved into different roles during the pandemic—and for many months. We owe them a particular debt of gratitude. Not only have they been working very long hours; they have also had to learn new skills rapidly and work in often distressing circumstances. We salute them.
In my brief contribution, I will focus on services for babies and children with neurological conditions; this includes children with epilepsy and stroke. It is understandable that many services have had to move to online consultations. One young mother, whose baby had had a stroke in utero, told me that online physiotherapy last autumn with her three month-old baby was virtually impossible, because she did not know the micromovements that the physio was looking for and the quality of the screen meant that the physio could not detect them either. Speech and language therapy online is also very difficult with small children, but critical so that they do not slip behind, as there may be a knock-on effect on their days at nursery and early years at school.
Many primary care services have also gone online and, in some areas, the health visitor one-year baby-check assessments are now a paper checklist for the parents to download and complete themselves. Again, for babies with known neuro conditions, parents are not trained to spot problems. Worse, where there has been no diagnosis at all, it is possible that parents and health professionals inevitably miss the warning signs, so it is vital that there are immediate returns to in-person appointments and the funding to go with them.
It is essential that the Chancellor of the Exchequer guarantees extra catch-up resources for all long-term conditions, not just cancer, important though that is. Many neurological conditions are life-limiting and their impact mitigated by treatment and medication, but substantial catching-up needs to happen to prevent much more serious deterioration that will, in the end, cost the NHS much more money. I ask the Minister whether the Department of Health and Social Care is pressing the Treasury for these extra catch-up resources. If not granted, the health costs for society will be substantially more.
Baroness Thornton (Lab)
I first congratulate my noble friend Lady Gale on this debate and pay tribute to the work that she had done on Parkinson’s disease, over many years, including championing it in your Lordships’ House. It is lovely to see the noble Baroness, Lady Blackwood, speaking with her usual eloquence and knowledge. I always felt that she knew much more about anything than I ever did, when I faced her across the Chamber.
Covid-19 has undoubtedly had a profound effect on people with neurological conditions and the services they need. There are three issues that we need to consider: first, catching up on missed appointments, therapies and treatment; secondly, ensuring that the rapid referral to which my noble friend Lord MacKenzie referred is restored; and thirdly, working out how much the neurological and neuropsychiatric manifestations of Covid-19, which are still emerging, are likely to further increase demand on services, both in hospitals and in the community. We also need to recognise that neurological research has been significantly disrupted, which is compounded by the financial pressures on charities.
The report from the National Neurosciences Advisory Group published last month found that, since the onset of England’s first lockdown in March 2020, people with neurological conditions have been directly impacted across all areas of their lives—their access to food, ability to work, social interactions and support, and access to essential health and social care services. Many have been shielding or self-isolating because of the virus, increasing anxieties, loneliness and isolation, which is sometimes exacerbated by unclear and inconsistent messaging and advice. This has also led to increased pressure on family members, carers and the charities and patient organisations providing support services.
However, while we recognise that support from the NHS and social care has been restricted, we have also heard many stories about health and social care professionals across the country finding new ways to maintain contact with people with neurological conditions remotely, and patient groups have found new ways to facilitate peer-to-peer support. It is vital not to lose those as we move out of the pandemic.
There is an estimated backlog of more than 225,000 neurology appointments and 58,000 neurosurgery appointments at the end of 2020. The motor neurone disease figures are particularly concerning. Referrals have dramatically fallen, which means that diagnosis, support and help for this dreadful condition are being delayed, which is exactly what we want to avoid. The pandemic has exposed and exacerbated longstanding barriers to social care that people with neurological conditions and their families face. There are some serious challenges here. I look forward to the Minister’s response to the many questions that she has been asked.
Baroness Penn (Con)
My Lords, I join other noble Lords in congratulating the noble Baroness, Lady Gale, for securing this important debate, recognising her tireless commitment to championing neurological conditions, including through her many years of service as co-chair of the All-Party Parliamentary Group on Parkinson’s.
As this debate has illustrated, the pandemic has resulted in unprecedented pressure across the health and social care system. All noble Lords recognise the outstanding work done by staff and volunteers across the NHS, social care and the voluntary sector at this difficult time. Early in the pandemic, NHS England and NHS Improvement advised that in-person consultations
“should only take place when absolutely necessary”.
This decision ensured that care was provided to those in greatest need during extremely challenging times. Neurology services saw new models of care emerge, with triage processes to ensure that patients receive appropriate care and are seen in outpatient settings closer to home. Providers rolled out remote consultations, using video, telephone, email and text message services, including for patients with neurological conditions. To support these new models of service provision during the pandemic, from March 2020, the Association of British Neurologists, the Royal College of Physicians and the Chief Medical Officer’s team produced guidance for clinicians, including recommendations on where services could be temporarily paused or moved from face-to-face, and where normal practice should continue. This was updated to ensure that it continued to meet the scale of the challenge and maximise the quality of care offered.
However, we all recognise that these were necessary but undesirable decisions that were taken to deal with the pandemic, and the Government completely recognise that this has resulted in delays to elective care, including non-urgent surgery, which has been impacted throughout the pandemic. Neurosurgery activity levels fell by 29.8% between 2019-20 and 2020-21, representing a reduction of about 30,500 completed patient pathways, and as noble Lords have noted, the waiting list has grown from 34,600 to 43,200 in the same period. However, it should be noted that urgent care was maintained throughout the pandemic to ensure that those requiring emergency care still received it. I will come on to our plans to address the backlog shortly, but a small sign of improvement is that median neurosurgery waiting times have dropped from a peak of 19.5 weeks in July 2020 to 14.3 weeks in March 2021.
Moving into the recovery phase of the pandemic, the Association of British Neurologists has published specific guidance on recommencing neurology services, including assessments on which services and patients require urgent prioritisation, considering the severity and onset of symptoms. As the NHS transitions from pandemic incident management to recovery of services, our priority is addressing the pressures caused by the pandemic. On 18 March, we announced an additional £7 billion to support pandemic recovery and £1 billion for elective recovery in 2021-22. While this funding is not allocated towards specific specialities, it will go towards services that benefit people with neurological conditions. NHS England and NHS Improvement are currently developing recovery plans across all services, including for patients with neurological conditions. Specialised services are setting a clear approach for recovery of services which ensures that patients are treated at the correct time in the appropriate setting, while balancing the ongoing Covid-19 pressures and front-line staff well-being.
I cannot say what the plan is for specific treatments, such as DBS for Parkinson’s, but I would be happy to follow up to the noble Baroness, Lady Gale, on that point in writing. I can say that, based on current information, neurology inpatient services should be fully restored to pre-pandemic appointment levels by the end of September this year, if there are no further significant Covid-19 outbreaks.
A number of noble Lords have expressed how challenging the past year has been in its impact on individuals’ mental health and well-being, including those with neurological conditions. The Government will continue to do our utmost to ensure that our mental health services are there for those who need them. Although talking therapies are available remotely, the NHS is working to ensure that the option of face-to-face support is provided to people with serious mental health illnesses where it is clinically safe to do so. For those with severe needs or in crisis, all NHS mental health providers have established a 24/7 urgent mental health helpline.
In March 2021, we launched our mental health recovery action plan, backed by an additional £500 million for this financial year, to ensure that we have the right support in place. We are committed to our ambition in the long-term plan to expand and transform mental health services, including by investing an additional £2.3 billion a year in mental health by 2023-24.
As the noble Baroness, Lady Gale, rightly highlighted, it is also imperative that we have a skilled and resilient neurology workforce. In August 2022, improvements to the neurology curriculum will be implemented. During their five-year training programme, trainees will accredit dually in neurology and internal medicine and obtain sub-specialty training in stroke medicine. Based on current numbers undergoing neurology training, this will mean that each year from 2028 onwards at least 40 neurology trainees each year will complete their training in neurology and stroke and be eligible to lead stroke services—a major boost to the workforce.
Furthermore, over recent years we have increased the number of funded medical school places in England by 1,500, a 25% increase. In the process, we have delivered five brand-new medical schools across the country. This expansion completed in September 2020 and will significantly increase the pipeline for doctors, including neurologists and other doctors treating neurological conditions, in future years.
As noted by a number of noble Lords, including the noble Baroness, Lady Thornton, we are also keen to understand any neurological impacts of Covid-19 and are aware of studies that suggest the potential for longer-term neurological symptoms developing in people who have had Covid-19. It is for this reason that we are providing more than £50 million of research funding and are working with world-leading scientists better to understand the virus and its long-term effects and how to treat them effectively. One such study is the Covid-19 clinical neuroscience study, which was awarded £2.3 million by UK Research and Innovation and the Department of Health and Social Care. It will look at 800 patients in the UK who were admitted to hospital with Covid-19 and had neurological or neuropsychiatric complications to understand how these problems occur and to develop strategies to prevent and treat them.
The noble Baronesses, Lady Greengross and Lady Thornton, also raised broader research funding, and I reassure them that the Government are committed to providing funding towards innovative research in neurological conditions. DHSC funds research into these conditions through the National Institute for Health Research, and funding was at £56 million in 2018-19. However, this is not the only route of research funding that we provide. We also provide funding through the Medical Research Council and UKRI, through the Biotechnology and Biological Sciences Research Council, which supports a diverse portfolio of neuroscience research and innovation totalling around £30 million per annum.
Longer term, a variety of improvements are under way for neurological conditions. The noble Baroness, Lady Gale, raised the important neuroscience transformation programme, which was intended to be a five-year programme and launched in 2018. At present, the programme is working with key stakeholders and patient groups to develop a collaborative model of care to improve local neurology services, improve care closer to home and reduce variations in access and treatment within and across systems. In light of the pandemic, the programme is currently reviewing its approach and priorities to align with the overall service restoration and recovery work.
The NHSE/I specialised neurology service review is looking at the optimal model for neurology services with the aim of ensuring patients are seen quickly in the most appropriate setting and carrying forward lessons learned during the pandemic. This review is now complete and NHSE/I is considering its recommendations. NHSE/I also supports the National Neurosciences Advisory Group, which is a collaborative leadership group for neurosciences in England. The overall purpose of the group is to improve outcomes for patients living with neurological conditions.
In April this year, NNAG published a report into the effects of the pandemic on neurological services and care pathways. The report highlighted the benefits of remote care methods but also recommended a fuller evaluation of remote care which, as a number of noble Lords have highlighted, is not appropriate for all people with neurological conditions. The report’s long-term recommendations are for NHSE/I to lead a national neurology plan in collaboration with NNAG and its members to develop and invest in a national rehabilitation plan, which the noble Baroness, Lady Gale, also raised, and to develop a clinically-led, pragmatic system of clinical classification of outpatient episodes. NHSE/I will be considering these recommendations as part of its ongoing recovery and restoration work and the future transformation of neurological services.
To respond to the point raised by several noble Lords about patients having the right to choose how they interact with health professionals in the right setting, the Government are committed to ensuring that patients have personalised care that considers their needs and preferences. That is why it is embedded in the NHS constitution and set out in the long-term plan.
I fear that I am running out of time. A number of noble Lords raised specific conditions. My noble friend Lord Vaizey mentioned epilepsy and my noble friend Lady Blackwood mentioned autonomic dysfunction. Many other conditions were also raised. I say to noble Lords that we are committed to improving services for people with these conditions. We acknowledge that, particularly where people have specialised conditions, further work is needed to acknowledge those conditions, raise awareness of them and improve their treatment. On specific points on any of those conditions, I will write to noble Lords.
I close by thanking the noble Baroness, Lady Gale, once again for securing this debate and thank all noble Lords who have taken part in it.