New Report from National Neuroscience Advisory Group (NNAG)

Posted on 14 April 2021 by Pippa McClounan

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National neurology and neuroscience leaders warn of a perfect storm for services for people with neurological conditions resulting from the COVID-19 pandemic.

The National Neuroscience Advisory Group (NNAG), a group of healthcare professionals, and national and local policy and commissioning leads patient groups working together to improve the quality of care for people living with neurological conditions, has today launched a report which shows the far-reaching impacts of the COVID-19 pandemic on people with neurological conditions and key services on which they rely.

The report urges NHS England and NHS Improvement to urgently provide the necessary support to restore services for people with neurological conditions to at least pre-pandemic levels.

At least 1 in 6 people live with a neurological condition in England. A neurological condition can be defined as any condition that affects the brain, spine and/or central nervous system. Neurological conditions include epilepsy, multiple sclerosis (MS) and motor neurone disease (MND). The report, which was developed using evidence collected from patient groups, NHS England and NHS Improvement key datasets, professional bodies and services, highlights:

• 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 slow down 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
• there was 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
• the COVID-19 pandemic has magnified the challenges facing rehabilitation services in particular. NHS Data shows there were 20,000 fewer outpatient appointments with a rehab consultant across all neurological conditions between March and June 2020 compared with the same period last year
• new models of care, particularly remote consultations, must be rolled out carefully – evidence received from across the neurological sector suggests mixed patient experience with remote consultations, and clear concerns about the possible exacerbation of health inequalities should they become common place.

Commenting on the report, Co-Chair of NNAG, Professor Adrian Williams, said:

“With demand for services set to increase, and health and care professionals likely to leave the profession, we 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.

As the only national multidisciplinary group for neuroscience in England, the NNAG has a unique and important role to play in articulating the impact of this crisis and recommendations for change. In this context, it is absolutely critical that we work together, through and with the NNAG, to support services to learn from key innovations during the pandemic, and ensure commissioning is geared towards to meeting the best outcomes for people with neurological conditions as possible.”

Georgina Carr, Chief Executive of the Neurological Alliance and Co-Chair of NNAG, said: 

“With life-changing treatment and therapies delayed or cancelled across the country, long periods of isolation due to the need to shield and wider support restricted, people with neurological conditions have undoubtedly been hit hard during the pandemic.

Care for people with neurological conditions has, for too long, been in the shadow of other medical speciality areas. People living with long COVID will also require support from neuroscience services, and so it is absolutely critical neurological services get the support and investment they need to meet present and the future demands.

In particular, we urge NHS England and NHS Improvement to work with people with neurological conditions, healthcare professionals, professional bodies and patient groups to ensure that services are restored to their pre-pandemic levels as soon as possible after the COVID-19 threat level is lowered”

• 1 in 6 people live with one or more neurological conditions in England. https://www.neural.org.uk/wp-content/uploads/2019/07/neuro-numbers-2019.pdf
• The National Neuroscience Advisory Group is the only national, multidisciplinary group for neuroscience in England. Further information about the group is available here: www.nnag.org.uk
• The Neurological Alliance is a not-for-profit coalition of more than 80 organisations working together to transform outcomes for the millions of people in England with a neurological condition. We campaign for high quality care and support to meet the individual needs of every person with a neurological condition, at every stage of their life. Our work is shaped by the experiences of people with neurological conditions and aims to address the causes of poor care. Find out more at www.neural.org.uk.
• The report was developed following evidence submitted from across the neurological community in August and September 2020.

Please contact Georgina Carr, CEO of the Neurological Alliance, for further information:

Georgina.carr@neural.org.uk, 07507 938559

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