On 27 May 2021, the House of Lords is due to consider the following question for short debate:

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.

What are neurological conditions?

Neurological conditions are disorders of the brain, spinal cord or nerves. They can have a range of causes including genetic factors, traumatic injury, and infection. The causes of some of these conditions are still not well understood.

There are a large number of neurological conditions, some very common and some comparatively rare. The Neurological Alliance suggests such conditions can be grouped into four main types:

  • Sudden onset—includes stroke, traumatic brain or spinal injury, meningitis, Guillain-Barre Syndrome.
  • Intermittent—includes epilepsy, migraine, cavernoma.
  • Progressive—includes Parkinson’s disease, dementia, motor neurone disease, ataxia.
  • Stable with changing needs—includes Tourette syndrome, narcolepsy, fibromyalgia, transverse myelitis.

Treatment for neurological conditions on the NHS

Even before the additional challenges caused by the coronavirus pandemic, neurological conditions accounted for a significant proportion of NHS treatment hours and funding. The Neurological Alliance publication ‘Neuro Numbers 2019’ provides the following key indicators:

  • There were 1,654,577 hospital admissions with a mention of neurology, stroke, or dementia in 2016/17. This was a 24% increase over the five years to 2016/17.
  • There were 1,009,021 emergency admissions with a mention of neurology, stroke, or dementia in 2016/17. This was a 21% increase over the five years to 2016/17.
  • Neurological conditions (including stroke and dementia) accounted for 12,736,365 bed days in 2016/17.
  • NHS expenditure on neurological conditions alone amounted to £4.4 billion in 2012/13. (This excludes any social care or voluntary sector spend.)
  • Social care expenditure on care services for people with a neurological condition amounted to approximately £2.4 billion in 2013—nearly 14% of adult social care spend.

The report highlights that a number of these statistics are reliant on historical data due to the difficulty in obtaining more recent information.

Key facts’, published by NHS England, also reveals:

  • There is an average of 12.5 million episodes of neurological care per year.
  • An average clinical commissioning group (CCG) has 59,000 patients with a neurological condition.
  • There is an increasing trend in neurological deaths: 39% increase in annual deaths compared to 6% decrease in all-cause deaths since 2001. Deaths associated with a neurological condition are 35% more likely to be premature.
  • People with neurological conditions have the lowest health-related quality of life of any long-term condition.
  • £750 million is spent on urgent and emergency care including admission to hospital with 3.6% growth in emergency admissions year on year.

Increased risk from Covid-19

Neurological conditions and their treatment may affect susceptibility to Covid-19 in a number of different ways. Most of the conditions or treatments that increase susceptibility to Covid-19 are those that suppress the immune system, yet studies have suggested that people with conditions such as dementia may also be at an increased risk of serious illness as a result of the virus. The Association of British Neurologists (ABN) has produced a range of guidance material for health professionals and those affected by different neurological conditions seeking information on their risk from Covid-19.

Impact on neurological services of Covid-19

As highlighted by the Association of British Neurologists, neurology services are complex and have evolved around local and regional requirements. Neurologists may be based at neuroscience centres servicing a number of trusts. Other neurologists are based at district general hospitals with links to a neuroscience centre. Some areas have a network of neurology centres with inpatient neurology beds linked to a neuroscience centre.

Early in the Covid-19 pandemic, the ABN and other health organisations supported a reduction in face-to-face neurology services for non-emergency and essential care to protect patients and healthcare staff. Reporting in July 2020, the Neurological Alliance reported that, at that early stage of the pandemic, these moves had already had a significant impact on some patients:

Starting, altering and/or continuing courses of treatment can delay the progression of neurological diseases and/or reduce relapses, but this has been extremely challenging during the pandemic. In many cases such treatments have simply been cancelled with no indication as to when they will resume, causing great concern to the people affected. In the Alliance’s Covid-19 survey, 72% of respondents reported having had their NHS appointments delayed; 47% of these appointments were with a neurologist and in 39% of cases, no replacement date was provided. This has left many people with suspected and confirmed neurological conditions in limbo when it comes to their health care.

A follow-up report from the Neurological Alliance in January 2021 also revealed:

  • More than 16,000 people with pre-existing neurological conditions were hospitalised with Covid-19 during March–June 2020.
  • Rehabilitation services were impacted in particular, with more than 20,000 fewer appointments taking place in March–June 2020 compared to the same period in the previous year.

These challenges have only increased as the pandemic has continued. A report in April 2021 from the National Neurosciences Advisory Group (NNAG) found that there was:

  • An estimated backlog of more than 225,000 neurology appointments and 58,000 neurosurgery appointments at the end of 2020—the winter surge of Covid cases is likely to have increased these figures further.
  • A growing number of long-Covid patients who now require neurological, neurorehabilitation and neuro-psychiatric and/or neuro-psychological care to manage their symptoms and functioning—this will too increase demand for neuroscience services.
  • A slowdown in referrals more generally. For example, specialist centres for MND have experienced an estimated 30–50% drop in referrals, leading to delays in diagnosis and support.
  • Already a significant shortage of specialist neuroscience professionals across the country prior to the pandemic. Redeployment to Covid-19 wards and increased pressure to reduce waiting lists are having a significant impact on the mental health of health and care professionals, and without the right support and planning, we risk losing much needed specialist expertise after Covid-19.

Resumption of neurology services

The ABN has now produced guidance on the resumption of neurology services. The guidance was cited by health minister Edward Argar in his response to the following written parliamentary question on the impact of the pandemic on neurology patients:

Question:
Simon Hoare (Conservative, North Dorset)

To ask the Secretary of State for Health and Social Care, what plans his Department has to (a) increase provision of rehabilitation services for people with (i) neurological conditions and (ii) multiple sclerosis who have become deconditioned as a result of Covid-19 lockdown restrictions and disruption of healthcare services and (b) provide additional provision of those services to meet the needs of people recovering from Covid-19.

Answer:
Edward Argar (Conservative, Charnwood)

18 November 2020

At the beginning of the Covid-19 pandemic, NHS England and NHS Improvement advised in-person consultations should only take place when absolutely necessary. Providers have been rolling out remote consultations using video, telephone, email and text message services as a priority, including for those with neurological conditions such as multiple sclerosis.

In-person rehabilitation services should now be resumed. The Association of British Neurologists published guidance on recommencing neurology services in the recovery phase of the pandemic, assessing which services and patients require urgent prioritisation. NHS England and NHS Improvement have also provided prioritisation advice for restarting community services, which aims to meet the needs of people with neurological conditions safely and effectively.

This guidance can be found at the following links:

Organisations such as the National Neuroscience Advisory Group continue to call for the Government to “urgently provide the necessary support to restore services for people with neurological conditions to at least pre-pandemic levels”. The co-chair of NNAG, Professor Adrian Williams, said:

[W]e face a perfect storm with regards to services for people with neurological conditions. Waiting lists in many areas have soared, meaning long waits to access the right specialist and, possibly, the right treatment to help slow progression, manage painful symptoms, and live as independently as possible.

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