Last updated 27/03/20
Neurological conditions and COVID-19
The Neurological Alliance is working to support our members to share information and respond effectively to the coronavirus outbreak. We know that this is a hugely worrying time for people with neurological conditions, many of whom are defined as ‘at risk’ according to official guidance. We also know that our member organisations are doing their utmost to make sure people have the advice they need related to their condition or medication. To help our members in this work, we’ve collated sources of information and advice below. We have also detailed the channels we’re setting up to facilitate peer support between our members, and included information on the policy and campaigning work we’re undertaking in relation to COVID-19.
We will update this page regularly as new information becomes available.
Sources of information and guidance for those supporting people with neurological conditions
The Association for British Neurologists’ guidelines on COVID-19 for people with neurological conditions, their doctors and carers have been published and are regularly being updated. The guidance covers assessment of risk, which conditions leave people more at risk, information relating to immunosurpression, and advice relating to specific neurological disease groups. The ABN has also provided links to patient groups’ websites.
The UK Government Guidance on social distancing for everyone in the UK defines who is deemed most at risk from COVID-19 infection. This includes people aged under 70 with chronic neurological conditions such as Parkinson’s disease, motor neurone disease, multiple sclerosis (MS), a learning disability or cerebral palsy.
The Government has also published guidance on shielding and protecting extremely vulnerable people from COVID-19. Shielding is a measure to protect people who are clinically extremely vulnerable by minimising all interaction. Those defined as extremely vulnerable may include some people with neurological conditons/symptoms:
- People with specific cancers/undergoing specific cancer treatments
- People with severe respiratory conditions
- People with rare diseases and inborn errors of metabolism that significantly increase the risk of infections (such as SCID, homozygous sickle cell).
- People on immunosuppression therapies sufficient to significantly increase risk of infection.
The NHS is writing to those deemed extremely vulnerable to provide them with information and advice.
We are aware of concerns amongst some of our members that there are some conditions which are not included in the list above, but ought to be. We are currently working out our response on this. Please note, however, that it is possible for people to register as extremely vulnerable, so that they’re able to able to ask for help e.g. getting deliveries of essential supplies like food. The registration page says that if unsure whether your medical condition makes you extremely vulnerable, to register anyway.
More generic (non-neuro related) sources of information and support are detailed in the NCVO’s your organisation and coronavirus information.
Our member support initiatives
Together with the Brain and Spine Foundation, we have established a ‘Neuro COVID-19 response forum’. The purpose of the forum is to provide peer support to one another, share the latest information and advice for people with neurological conditions as this comes through, and ideally to provide a space to align messaging/activity where possible.
Neurological Alliance member organisations should have received a link to join the forum via our latest newsletter. If not, or if you are having difficulty accessing the forum, please get in touch: email@example.com.
We are also keen to help amplify the information you’re putting out on twitter, and are using a Twitter hashtag: #NeuroCOVID19 to facilitate this. Please use this on anything coronavirus related that you want to draw to our attention, so we can re-tweet.
Our COVID-19 related policy and campaigning work
The Neurological Alliance has written to NICE about our concerns relating to their new rapidly produced guideline on the management of patients in critical care. This guideline states that the Clinical Frailty Scale should be used to assess patients to determine whether to offer critical care, without regard to age. We share sector concerns expressed by others (including our friends over at The Embracing Complexity Coalition) about the use of this scale. As it is written, the guideline fails to acknowledge that people with complex needs (e.g. autism, acquired brain injury, learning disability) could get a high score on the CFS as a result of their need for support with daily living even if they are otherwise healthy. This risks them being denied life-saving treatment.
Update 27/03/20: NICE has now updated its guidance to say that the scale should not be used in certain groups including those with learning disability and cerebral palsy.
The Neurological Alliance is supporting an NCVO campaign for Government to a financial support package for the voluntary sector, to provide the support they need to continue their vital work, at a time of critical funding need. We have written to some friendly MPs asking them to lend their support, and we are also supporting the campaign via social media. Boris Johnston has confirmed that he is working with the Secretary of State on a package, though no details have been announced as of yet.