Stronger together

A new neuro forum is aiming to address gaps in neurology treatment and care; bringing together clinical leaders, organisations, and people with lived experience of neurological conditions. NR Times spoke to Georgina Carr, chief executive of the Neurological Alliance, to find out more.

The launch of the forum follows the ‘Back the 1 in 6’ campaign which called on the government to establish a neuro taskforce to help address key challenges faced by those affected by neurological conditions.

The campaign was led by The Neurological Alliance, The Neurological Alliance of Scotland, Wales Neurological Alliance, and the Northern Ireland Neurological Charities Alliance.

The Neuro Forum will focus on treatment and care, a lack of mental health and wellbeing support, and insufficient information at the point of diagnosis, as well as addressing unwarranted variation in access to care across the country and working to drive person-centred care.

The forum will meet twice a year, with the first meeting planned for February, and will prioritise transparency and action-oriented outcomes.

NR Times speaks to Georgina Carr, chief executive of The Neurological Alliance, to find out more about how the new forum aims to help transform neuro care in the UK.

“We are really delighted that after years of campaigning, we have been able to secure what is a landmark national initiative for people affected by neurological conditions,” says Carr.

“It follows calls from more than 19,000 organisations that were essentially urging the government to set up a UK neuro task force in the UK. This is in a context where, in England, more than 230,000 people are currently waiting for an NHS appointment, and 55,000 of those are waiting for a neurological appointment.

“Many people are not necessarily getting the information that they need for a diagnosis, and they are not being signposted to the wider services that could help them to live independently, to prolong their life and to support their friends and family, as well as carers.”

Working at a UK-wide level

The Back the 1 in 6 campaign launched in 2022 off the back off My Neuro Survey that was completed by more than 8,500 people, revealing drastic variations in the care that neurological patients are receiving across the country.

“Too often, care is down to your postcode,” explains Carr. “It is down to the relationships that you hold and the assets available to you – it isn’t down to need. From that, we felt it was really important to highlight the problems that people were experiencing, and also reviewing the public policy landscape as there was no clear national initiative that was trying to pull together a strategy to improve treatment, care and support for people with neurological conditions.

“For those living with epilepsy, dystonia, MS and lots of different conditions, there’s nothing nationally that they could point to where it was really clear that the UK Government was listening to them.

“I think the campaign really resonated with people – the fact that one in six people do live with a neurological condition, they’re not rare, and many, many people know somebody or live with a condition themselves.”

Carr says the campaign leaders wanted to tackle challenges at a UK wide level, such as not having enough health and care professionals specialising in different areas of neurosciences to meet the needs of people affected by neurological conditions.

“That requires a cross-UK collaborative effort because some specialties really are stretched incredibly thinly across the UK, and also because there’s some innovative solutions that are being adopted in different parts of the country that we could learn from and we could share across the UK,” says Carr.

The Neuro Forum will include representatives from the different governments across the UK and will be steered by senior level staff within the Department of Health and Social Care as well as members from each of the neurological alliances.

Carr explains: “We really want to make sure that the experiences of people affected by neurological conditions are at the heart of what the forum is doing and its focus.

“So, we’re looking to adopt an innovative approach to how we involve people affected by neurological conditions, and thinking about how we prioritise the work of the forum, and crucially, that it’s transparent and that it leads to real change.

“Health and Care policy is ultimately dictated at a national level, as opposed to a UK level, and in England, it’s getting even more local than that, with lots of the decisions that matter to the treatment of care that people should receive being made at a regional or local level.

“Sometimes those systems look quite different – I think what unites us is that there are shared challenges that we need to be thinking about together, and we need to be learning from one another and innovating together and meeting some of those challenges.”

Improving neuro care

Along with new developments in research and technology, Carr emphasises the Neuro forum will be exploring the application of new treatments and therapies.

“We have got a number of different therapies and treatments coming online for different neurological conditions, including areas where we’ve had no treatment options previously, which is incredibly exciting,” says Carr.

“The pipeline around treatment, therapies and tech within neuroscience for neurological conditions, more broadly, is really exciting, but we don’t have systems ready and willing to take on and roll out some of those innovations.

“So we’re not currently building a system that’s ready for success in research. That is going to be a shared challenge across the UK, because it will require lots of services to do things very differently and to think about their specialism quite differently as well.”

Championing patients and workforces

Ensuring that patient voices are heard and represented will also be a priority of the forum, which will be supporting patients, carers and families to engage on the issues that affect them, enabling them to submit questions or focus suggestions for the group.

“We will largely facilitate that through the membership of the neurological alliances across the UK,” explains Carr.

“Thousands of people across the country are affected by neurological conditions, so patient, carer and family involvement might also include things like specific speaking slots at forum meetings or events.”

Further, the Neuro forum will be focussing on improving the neurology workforce and services available.

Carr says: “We will go further, faster, if we work together across the UK to tackle some of the challenges and so that means we need to think about how we attract people into neurosciences.

“How do we break down any barriers to understanding and education so people can train relevant specialisms and how can we support people to create and be part of workplace cultures that support people to integrate across the system. It’s not feasible for absolutely every single health and care professional across the country to specialise in 600 or so different neurological conditions.

“What is feasible is using the collective expertise that we do have and the talent that we’ve got in the UK to upskill staff and improve the treatment and support that they’re able to provide through increased education and training opportunities for them.

“In particular, there is a real need to improve support for mental health and wellbeing for people affected by neurological conditions.

“Far too many, are turned away for support, because sometimes services don’t have the confidence, or maybe don’t know how to support people effectively. The specialist expertise that might be required is really thin on the ground, and the referral pathways that need to exist don’t exist.

“The other area that needs further support is for children and young people living with a neurological condition. Our understanding of neurological conditions amongst children and young people is improving, and so we’re able to bring down the age of diagnosis.

“The linkage between paediatrics services and adult services isn’t there for lots of people. For example, NIC recommends that every child or young person with any condition should have a dedicated coordinator to support transition from paediatric to adult care.

“In our survey, when we asked children and young people whether or not they had that sort of person to turn to, 83 per cent said that they did not, and lots of people report to us that they feel abandoned when they do move from paediatrics to adult services.

“What’s been really fantastic through this campaign is the community. There are millions of people affected by neurological conditions across the country, who I think for too long, have been ignored by policy makers, and this is a sign of change.

“By working together on a UK-wide level, it’s undoubtedly made us stronger.”

Work is now underway to deliver the first forum meeting in early 2025 with a further meeting in the summer and ongoing bi-annual meetings in the years ahead.