Covid-19: People with Neurological Conditions

Question for Short Debate

Asked by

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.

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.

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.

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.

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.

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.

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?

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.

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.