NR Times speaks to Georgina Carr, chief executive of The Neurological Alliance (England), about their campaign for a Neuro Taskforce, why urgent action is needed to support people living with neurological conditions, and how the General Election may pose an opportunity for the cause to be championed
For the one in six people in the UK living with a neurological condition, their experience all too often is of being unable to access the resources and support they need, feeling unheard and unsure where to turn.
While pockets of good practice exist and positive experiences thankfully are not totally unheard of, there is massive variation in service and workforce provision across the country and an undoubted need to do more and to support the people who account for the 16.5million neurological cases across England.
Through the #BackThe1in6 campaign, The Neurological Alliance – a coalition of more than 90 organisations all committed to improving treatment, care and support for people affected by neurological conditions – is calling for urgent and meaningful change to give this support, and to ensure that the needs of millions of people across the country are not being overlooked.
And with the topic of a General Election – which must be held by January 2025 – now beginning to appear on the horizon, supporting the needs of the one in six people across the country is something that should be a prime consideration for all candidates, believes Georgina Carr, chief executive of The Neurological Alliance.
“We are talking about thousands of people per constituency. Based on the one in six figure, you’d work it out to be about 12,000 people in each constituency in England – and many more will be impacted as a carer, family, or friend or someone who delivers services the neurological community,” she says.
“This is a huge opportunity for election candidates to show they’re listening to a big proportion of the population and that they’re acting on their behalf. We don’t yet see that level of support for neurological conditions, but we need to, to show people that politicians are listening.
“The onus is on us as a community to really work together and make sure we’re being bold and speaking up consistently – and the General Election is a huge opportunity for us to be heard.”
Here, we look at some of the action that must be taken to support the one in six, and ensure the change made is sustainable and meets the needs of those living with neurological conditions.
Improving access to services
Provision and availability of resources is a longstanding problem across healthcare – but for the millions living across the country with a neurological condition, injury or illness, that is felt particularly keenly.
In being able to secure access to neuro-rehab in both acute and community settings, many areas are chronically underserved – and in terms of both recruitment of professionals, and the geographical spread of resources, change is urgently needed, says Georgina.
“Firstly, we need to set out a plan to address the shortages in our workforce for people affected by neurological conditions,” she says.
“There are huge challenges in terms of the number of, for example, neurologists, in posts across England – there are some areas that don’t have any neurologists at all.
“A third of our neurologists are based in the South East of England. Rehabilitation Medicine is ten times smaller in the UK compared to the European average. Clearly we need to do a lot in terms of both numbers, but also distribution of those specialists.
“It’s a very similar story across a range of neuro specialties. We absolutely need to improve our ability to recruit and support allied health professionals and medics in their expertise of neurological conditions, particularly those working in the community who do so much.
“They too need a fair deal, and we need more of them. So addressing those challenges in the workforce is absolutely key.”
In addition to greater access, the need for an integrated approach to resources and support for people with neurological conditions also needs to be tackled, says Georgina.
“In England, we’re seeing huge changes to how services for people affected by neurological conditions are going to be commissioned and provided in the future, within integrated care systems. But at the moment, what I’m hearing far too often is, ‘We don’t have a neuroscience centre on our patch, therefore it’s not our business’,” she says.
“We want to see integrated care boards take people living with neurological condition seriously by making provision for them in their respective strategies, and integrated care partnerships, ensuring that they’ve got links with the voluntary care sector and supporting people affected by neurological conditions in their work as well.
“We need to be doing all we can to understand the needs and experiences of people affected by neurological conditions, by making sure that there are plans to address barriers to providing care that is as integrated as possible.
“That is going to look really different from area to area, but the response is pretty variable at the moment. But it’s definitely within our gift, and I’m aware of a couple of Integrated Care Systems that are taking steps, and that has resulted in improved provision for people affected by neurological conditions. So we need more of that.”
And to help the longer-term delivery of support for people with neurological conditions, research should also be prioritised accordingly, says Georgina.
“There are huge advances being made across a number of different areas of neuroscience and our ability to understand and treat different neurological conditions needs to be supported – and it needs to be supported equitably,” she says.
“There are conditions such as dystonia and epilepsy, which collectively impact more than 700,000 people living with this condition in the UK, but the funding available for research doesn’t really equate to the size of the challenge.
“We absolutely need to be doing all we can to support our neuro research infrastructure and then off the back of that, build a system that’s able to translate successes in research into improving quality of life.”
Why a Neuro Taskforce is needed
To help deliver meaningful change, The Neurological Alliance is calling for the creation of a Neuro Taskforce, which would enable UK Governments to bring together multiple initiatives, increase collaboration and bring much-needed new levels of support.
“By setting a high-level commitment to improve services and research for people affected by neurological conditions, that would show that the Government is listening to the one in six living with a neurological condition,” says Georgina.
“It also would allow for Governments across the UK to collaborate on shared common challenges, like the workforce, for example – we know that there’s a desperate shortage of neuroscience specialists, in particular – and also build on some of the good work that is happening across the UK.
“The Getting it Right First Time (GIRFT) programme has done a piece of work in England, on both neurology and neurosurgery, identifying significant unwarranted variation in terms of activity and how neurology and neurosurgery surgery services are set up and provided. That’s the kind of approach that could actually be taken across the UK. In the case of GIRFT, it has now been picked up in Northern Ireland.
“By having more of a structured framework through what we’re calling a taskforce, would be a really good way of doing that.”
Recently, a delegation delivered a petition signed by 19,000 people and backed by over 100 organisations to the Department for Health and Social Care, calling for the creation of the Taskforce. A number of MPs also attended a Parliamentary event to learn more.
“The Department of Health did come out and meet us and collect the petition, although we haven’t yet received a formal response so we’re pushing for that,” says Georgina.
“But we were very pleased to have 22 MPs represented at our event, and crucially we spoke to people who haven’t typically engaged with the Alliance before. So we were reaching a new audience, which was really important.”
With growing support behind the campaign, Georgina is hopeful that change will come.
“I am really hopeful, because the momentum is certainly with us,” she says.
“Through the Parliamentary event, we’ve now reached a whole new group of Parliamentarians who are willing to speak up on behalf of people affected by neurological conditions.
“We will be working with them to submit Parliamentary questions, to write to the Minister for Health and Social Care, to try and get a backbench debate as well, which we haven’t had for some time. All of this will put additional pressure on the Government to act and to establish this Taskforce.
“I’m confident we are doing all we can to put pressure on the Government to act – although I’m not ignorant to the political and policy context that we’re in. I don’t underestimate the scale of the challenge but I am very encouraged by the momentum.”
‘The pace of change is not good enough’
While there is movement in terms of provision for people with neurological conditions – the impending creation of the ABI Strategy being one major step forward – the pace of change is undeniably extremely slow.
With statistics suggesting one in three people will sustain a brain injury at some point in their lives, and that someone is admitted to hospital with a brain injury every 90 seconds, the fact it has taken years to move on such a widespread issue highlights how very slow progress is.
So too with The Neurological Alliance’s #BackThe1in6 campaign. Since its launch, it has yet to be formally acknowledged by the Government.
“We launched this campaign a year ago, and it’s disappointing we haven’t yet had a formal response,” says Georgina.
“Since we launched, 70 babies will have been born with spinal muscular atrophy, about 30,000 people have been diagnosed with epilepsy, 2,000 people will have been diagnosed with MND and about 900,000 people have experienced a head injury, many of whom will be experiencing disability for the rest of their lives as a result.
“So to not have a formal response in that time, when people are experiencing life-changing diagnoses and not necessarily getting the care that they need, that isn’t good enough.”
Quicker action from Government in making provision would translate into faster response on the ground for patients who need support, says Georgina.
“What’s really stark is that we’ve got good evidence that when people get access to the right treatment, care and support at the right time, it makes a big difference both to their quality of life, and also the cost to individual and to society,” she says.
“That cost goes down because we’re able to prevent many impacts on quality of life, and we can also slow progression of lots of conditions. With some conditions, for example, we can delay the need for a wheelchair if we ensure that people access the right treatment at the right time.
“The case for action has never been stronger, but the pace of change is incredibly slow, which just isn’t good enough when you think about what people are dealing with day in and day out.”
‘Assign the funding to make change a reality’
With the Acquired Brain Injury (ABI) Strategy set to be unveiled in the near future, while there is undoubtedly huge potential, concerns have been raised about the impact it can actually make without the provision of funding to support its ambitions.
The Major Conditions Strategy, also has potential to make a huge difference to the lives of people living with a range of illnesses – but again, there is no funding provision behind that.
Georgina echoes calls around the need for financial backing to truly make a difference to people’s lives.
“I think this undoubtedly signals that they’re willing to listen to people with acquired brain injury and other neurological conditions, and having worked directly with the civil servants involved, I can say they really are committed to getting this, and indeed things like the strategy for people with chronic fatigue syndrome and ME, over the line,” she says.
“The ABI Strategy should absolutely represent a long-term vision for change that will outlast Governments, but I do think one of the big drawbacks of this, and indeed other strategies being developed at the moment, is that there’s no money attached to it.
“What I’d really like to see is investment on the back of the strategies. It should absolutely represent a long-term vision, but one that is backed by the right money.”
Georgina believes that continuing to keep pressure on the Government over these issues can help to make the necessary difference, particularly with the autumn Budget approaching.
“The Government can commit money, and we’ve seen some commitments, for example with motor neuron disease (MND) research, which was really significant. That is undoubtedly going to make a big difference to our ability to diagnose and potentially cure MND in the long-term,” she says.
“In this instance, a really compelling case was created and multiple organisations spoke up and out with urgency, and they got the funding. That is really important in getting the government to make such investments, if it wishes.
“I’m confident we have got the evidence we need to make the case for funding, and we’re not short of the energy or evidence or passion – but perhaps we need to speak louder. The Budget is going to be a crucial milestone with regards to funding.
“I absolutely think we have the right evidence, but we need to be targeting it not only to the Department of Health, but to the Treasury as well. I’m confident that if we speak with one voice, we should be able to do that.”
* To learn more about the Neurological Alliance visit neural.org.uk
