‘Fund the ABI Strategy so it isn’t another ineffectual National Service Framework’
Luke Griggs, chief executive of Headway, outlines his thoughts about the ABI Strategy and what it must address; the urgent need for provision for brain injury; and the importance of Headway groups across the country and why their life-changing work must be properly funded
“An effective ABI Strategy needs funding”
That is the message from Luke Griggs, chief executive of Headway, who admits to having “real fear” around the funding of proper provision through the Strategy, the kind which will truly make a positive impact on the lives of those who need it.
With the cost of living crisis squeezing already-stretched services even further, often to breaking point, the need to ensure the continuity of care for those living with brain injury in the community has never been more important.
One of the most in-demand sources of brain injury support for survivors and families is that of Headway, particularly through local Headways – but, like many community-based charities, they face an uncertain future unless they are assigned funding.
Luke believes that, given the impact they make on the lives of countless survivors nationally, provision should be made for Headway groups through the ABI Strategy, to ensure support can continue for families in communities across the UK.
Speaking about the Strategy at the Headway Darlington conference, he said: “This is a really, really great opportunity – but it needs to be funded. We need to talk now about the funding of this.
“I wrote to the minister (Helen Whately, Minister of State for Social Care) in January, and I appreciate that ministers are very busy – but I‘m still waiting for a reply to that letter. And I’ve been denied a meeting. I find that very frustrating.
“If we can’t meet, and we can’t get a response to these urgent calls for action, there is a real risk that survivors, carers, families and charities will feel disillusioned and lose confidence that this is being given the attention it deserves and the importance it deserves.
“But I am optimistic – there is still time and I have to remain hopeful. Headway have certainly made our case and we remain committed to continuing to support parliamentary and civil service colleagues in making this a success.”
ABI Strategy
While the creation of the ABI Strategy is undoubtedly a positive step in the recognition of brain injury as a condition needing unique support, and in paving the way for that to happen, quietly, many are raising concerns as to just how impactful it will be.
The cross-department project, designed to simplify and streamline the process for survivors to access the resources they need, is set to be unveiled in the coming months – but key to its ability to make any real impact is the funding behind it, says Luke.
Citing the National Service Framework – a five-year strategy unveiled by the Government in 2005 to “transform the way health and social care services support people with long-term neurological conditions to live as independently as possible” – its ability to make any change was hampered by the lack of financial support behind it, says Luke.
“This was lauded as the great hope for brain injury, this was going to change everything, this new Government strategy was going to revolutionise the way the brain injury is supported and cared for and treated,” he says.
“It was a five-year strategy, and for the first two years, absolutely nothing happened. There was a lot of talk of ‘We’re going to get together and do this’ but there was no money behind it and it quickly disappeared.
“The lesson that we could all learn from the NSF is that unless there is funding and clear deliverables and timescales for implementation, can we be assured that anything will change?
“There is real fear that the ABI Strategy may yet be the same. It needs to be a holistic Government-led UK-wide approach and strategy that is backed by Government funding, because otherwise nothing will change.”
Luke also highlights the fact that the true scale of brain injury in the UK is unknown, with a distinct lack of statistics in this area.
Research conducted and financed by Headway revealed that hospital admissions for brain injury take place every 90 seconds, affecting 350,000 people each year – but beyond that, the data set remains poor.
“We can ask, quite rightly, how can you set policy if you don’t know how many people are affected by any particular condition?,” says Luke.
“Back in 2001, the Health Select Committee, a cross party group of MPs, looked at head injury and made a number of recommendations – one of them was that a better data set was needed to see the prevalence and how many people are living with the long-term effects of head injury.
“That was in 2001. We’re now in 2023.
“Through our own research, we know about hospital admissions, but we’re not talking about prevalence – we don’t know how many people in this country are living with an acquired brain injury.
“This kind of information needs to come from the Office of National Statistics or similar, but it’s a very complex problem. How do we define brain injury? How many people are slipping through the net because they are not diagnosed or not directed to or given access to the help and support they need?
“For many people, it’s only later down the line that the subtle effects of brain injury start to emerge. At that stage, there’s no specific care pathway and finding support can be incredibly difficult.
“So to actually identify the number of people with ABI is going to be an incredibly complex task – but something has to be done.
“Without these kinds of numbers, we can’t show the Government the importance and urgency of investing in this kind of long-term rehabilitation support.”
While funding will undoubtedly need to be significant for the ABI Strategy, Luke highlights the need for provision around neuro-rehab and community support for the long-term.
“Neuro-rehabilitation remains one of the most cost-effective forms of treatment available for the NHS. It can increase brain injury survivors’ independence, reduce the cost of ongoing state support for both the survivor and their families, and can help survivors, their families or carers to return to employment,” he says.
“The Strategy has to focus on that access to rehab services delivered by specialists, in a wide-ranging and not time limited way. This must be community-based, not with three hours of travel time to get to an appointment, and we need to look at making a seamless transition from acute to post-acute services.
“There is some excellent work going on in our hospitals and Major Trauma Centres, and that is something we should be very proud of. But unless you’re following that through, with community-based support to help people learn how to live and rebuild their lives, how to have skills, how to regain a degree of independence, much of the potential of the survivor to rebuild their life is lost.
“We all know the financial pressures on local authorities right now and on the services they provide – so that’s why this needs to be a holistic, UK-wide approach. Local authorities can’t be the ones to blame on this.”
Vital role of brain injury support
With Headway’s recently ABI Week initiative helping to highlight the scale of hospital admissions for brain injury – with the number of people who live with brain injury but have not been admitted to hospital still unknown – the scale of brain injury in this country is clearly significant.
“The vast majority of these people will need some form of help and support,” says Luke.
“For some that may be temporary. It may be that they or a family member access the Headway helpline from their hospital bed to say ‘I don’t know what’s going on, I’m scared’. Or it may be to access the Headway emergency fund, which allows loved ones to be at the hospital bedside where otherwise they may not have been able to.
“But this need doesn’t stop when you leave hospital. Brain injury is a lifelong condition that people need help and support with.”
Family support is an area often identified as needing more attention, with brain injury to a loved one affecting the dynamics and circumstances of whole families.
“For every one admission to hospital, what about the ripple effect for every husband or wife, every child, friends, colleagues – the ripple effect is huge,” says Luke.
“We see that overnight, a partner can suddenly become a carer and have to give up their job. They are deeply impacted by this, and may have their own mental health issues as a result of this. They aren’t contributing to the economy anymore, they lose the life they once had – and this can have a huge effect.
“Support for families is crucial. We need to focus on these brave families as much as the survivors themselves, and the reality is that those families who get more support are more likely to stay together.
“Investing in that is hugely important because otherwise family breakdown can cost authorities a hell of a lot more than it does to support them to live with brain injury and to rebuild their lives through rehabilitation.”
Another area often identified as one not receiving due attention is within the criminal justice system, where the prevalence of brain injury is estimated to be about 60 per cent among prisoners.
“Too often, we see somebody who should be getting rehabilitation instead of getting incarceration,” says Luke.
“We need better understanding of this. We don’t know the background to what is happening to prisoners, whether their brain injury is post-crime or whether their actions are in some way, shape or form influenced by their brain injury.
“In either situation, the vulnerability of these people in prisons is huge. It’s not a case of saying wrongdoing is to be excused, it’s a case of making sure that anyone caught up in the criminal justice system with a brain injury is identified at the earliest stage and given appropriate support.”
Positive initiatives like the training of over 60,000 professionals within the criminal justice system nationwide, and the work of the Department for Work and Pensions with benefits reform and the recognition of the Headway ID Card, are positive steps forward, says Luke – but need to be part of a wider approach.
“It’s really, really good to see but more needs to be done,” he says.
“Projects like this are making a difference, but they need to have a holistic and strategic
approach to talking about improved access to rehabilitation to support whole families and better awareness.”
The importance of Headway groups
For countless brain injury survivors, once they are discharged from hospital to no structured support, their main source of salvation is from their local Headway group.
Delivering a forum for families impacted by brain injury to gather socially, the charity has groups – which operate as autonomous charities – and branches in communities across the country, which offer the practical and emotional support which changes lives every day.
But in the wake of the COVID-19 pandemic, and amidst the current cost of living crisis, local Headway charities face the same challenges as so many other charities – and despite their often fundamental role in the ability of survivors to rebuild their lives, genuine fears hang over the future of a number of groups.
“The situation is incredibly difficult. The reality is that charities are battling to survive, and quite frankly, through the lack of funding we are getting to a point now where I genuinely fear we could lose a number of these autonomous charities,” says Luke.
“They have to look at heating bills, paying for overheads, insurance costs, the cost of paying staff. These charities don’t have the income for anything to be guaranteed and are now getting to the point in many groups where there is a real concern about paying our bills.
“Back in 2014 with the impact of austerity and the huge amount of cuts we saw to services, we ran a campaign called Don’t Cut Me Out to protect the specialist community-based brain injury services provided by local Headways, in which we talked about the false economy of cutting funding. And we survived.
“We survived by working together, we are stronger that way, and we need to do that again.”
Headway groups undoubtedly play a key role in brain injury provision nationally, with their resources increasingly in demand and under pressure.
“Local Headway charities are bringing people together in a safe space where they can be themselves and be amongst other people who understand what they’re going through,” says Luke.
“They don’t have to apologise for maybe some of the speech or memory problems, for dealing with any of the issues that people with brain injury have to deal with on a day-to-day basis. That gives them the confidence to go out and play more of an active role in our local communities.
“That’s a really fundamental aspect what Headway groups are trying to do on a day-to-day basis, and it’s always a real pleasure for me to be part of that, it’s a really joyful part of my job to get out and meet people, to remind us of exactly why we’re doing what we’re doing.
“But increasingly, Headway groups are being asked to support people with far more complex needs than a local community-based charity would expect to, because it’s so difficult for local authorities to find appropriate places for them.”
Given the contribution they make, Luke would like to see Headway groups given some degree of public funding, to safeguard their future and continue to deliver the often life-changing support for which they have become known.
“We carried out some research among our groups and found that 54 per cent are receiving referrals for clients who have not yet been assessed for funding; 63 per cent have clients are referred clients with complex needs; and 50 per cent have seen referrals where ABI is not the primary need,” says Luke.
“People are working hard to provide specialist support, but then we are seeing people leaving for higher-paid jobs, which is understandable because they have got bills and a mortgage to pay.
“Without the Headway groups, who would provide this specialist rehab and support? And what will it cost? Who would support the individual brain injury survivor whose relationship has broken down, who’s isolated, scared, alone. And that can spiral. The costs to the state are far higher in supporting that individual than supporting a charity to continue to do wonderful work to keep families together.
“Funding needs to be made available across the board to train new neuropsychologists, more neuro OTs, to develop effective care and rehabilitation pathways that are consistent across the UK, and to support community-based charities.
“The ABI Strategy has got people – including the Government – around the table. That’s a significant and important first step. But the reality, sadly as with many things in life, is that the key to meaningful, sustained change is funding.”
