Petition plea to Government for UK taskforce to tackle neuro community’s ‘urgent’ needs.
Experts are willing and waiting to lead a UK task force to help people with neuro conditions in desperate need of support.
And now they have launched a petition to secure ‘real change’ after a survey of the nation’s neurological services showed some areas needing ‘urgent attention'.
The neuro experts are champing at the bit to provide solutions through a national plan that would equally support everyone with a neurological diagnosis.
But they need a UK Government green light to set a neuro task force in action. Here’s why they say it needs to happen now…
We have developed pathways for ‘What Good Looks Like’ that map what care should involve for an individual. 
Association of British Neurologists [1]
In his foreword to a recent poll of UK neuro patients, Dr Alasdair Parker issues a warning reminiscent of the TV caution to viewers that ‘some might find the following scenes disturbing’.
“This ground-breaking survey has gained exceptional insight into challenges faced by families affected by neurological disorders,” Dr Parker says of My Neuro Survey, which reached over 8,500 UK families affected by neuro conditions.
However, the President of the British Paediatric Neurology Association also cautions, “It is hard reading.”
One in six people in the UK has a neurological condition, including almost all the adults who responded to the nationwide My Neuro Survey.
The survey, which also involved parents replying on behalf of youngsters, is part of an ongoing #BackThe1in6 campaign being headed by the UK’s Neurological Alliance, a body made up of more than 80 neuro organisations.
The most reported conditions were multiple sclerosis, epilepsy, migraine, hydrocephalus, and Tourette syndrome.
And though care was considered excellent by some, the survey showed others were at the mercy of ‘patchy provision.
Overall, the findings revealed an ‘unfortunate reality of neuro healthcare provision in the UK during the winter of 2021/2022 when the survey was carried out.
The picture painted by those affected by neuro conditions revealed:
- Fragmented care and ‘hard to navigate care pathways
- Under-staffing leads to long waits
- Variations in practice
- Difficulties accessing best care.
- Failures in picking up and treating mental health problems in neuro patients
- A lack of explanation of diagnoses and supporting patient information
The results of My Neuro Survey provide further proof of the need for a multidisciplinary UK network of neuro experts who can offer effective care for neurological conditions, some of which are complex and long-term.
The Neurological Alliance, along with the Association of British Neurologists (ABN), believe an integrated care approach such as this will secure ‘radical neurological service improvement’.
Pilot models are currently being developed by NHS England’s Neurology Transformation team in collaboration with ABN and the Neurological Alliance.
But it’s envisaged that an effective neuro task force would need to include health and social care experts, people affected by neurological conditions and the voluntary sector.
The task force’s work would involve the following:
- Assessing the current neuro workforce
- Sharing approaches to problems, such as access to support
- Cutting waiting lists for elective care
- Setting out plans to level up investment in deprived areas
And there is already clarity around which steps need to be taken next, as ABN President, Professor Tom Warner and its Services Committee Chair, Dr Catherine Mummery, summarise in their My Neuro Survey foreword:
“We have developed pathways for ‘what good looks like’ that map what care should involve for an individual,” they reveal.
“In order to deliver the service we need, we must ensure our workforce is appropriately planned and funded across the different levels of care.
The goal is to develop a multidisciplinary network of those with the right competencies to deliver the right care at the right place and the right time for the patient.
They conclude, “To this end, we strongly support the proposal for a Neuro Taskforce to help plan, influence and deliver a step change in the level of care for people with neurological conditions.”
The #BackThe1in6 and Neuro Taskforce campaigns have won wide-scale support from charities, including The MS Society [2], Huntington’s Disease Association [3] Dystonia UK [4], and The Migraine Trust [5].
Find out more about the task force plans and how to support the petition to the Government here: Why a Neuro Taskforce? – The Neurological Alliance (neural.org.uk)
Further reading
What's the latest on the UK Government's national acquired brain injury plan? Find out from the people leading it at Time for Change 2022…
Time for Change 2022 - The national ABI strategy update (krysalisconsultancy.co.uk)
