PARLIAMENTARY DEBATE
Acquired Brain Injury - 2 July 2019 (Commons/Westminster Hall)
Debate Detail
That this House has considered acquired brain injury.
You might have noticed, Mr Rosindell, that we have considered this matter once or twice already over the past year or two, but today we are looking at some specific elements of acquired brain injury. As all right hon. and hon. Members will know, brain injury can relate to so many parts of Government: the Ministry of Defence, the Department for Work and Pensions, the Department for Education, the Ministry of Justice, the Home Office and so on. Today we have the Health Minister before us, so I am keen to focus on health-related issues.
I know that many right hon. and hon. Members will have been approached by the Headway charity, clinicians who work in their area, patients or carers of people who have suffered a brain injury, and will want to make a contribution, so I do not intend to speak at great length. I am passionately conscious of the fact that, since I first became involved in this issue in Parliament three years ago, I have met so many amazing people—not only clinicians and people who work in the charity sector, but patients who have had brain injuries and spoken about what that experience is like. It is so important to hear that experience directly from individuals.
One particularly poignant aspect of brain injury is that in the vast majority of cases it is completely invisible. Yesterday, I met Tom Hutton, who is here—I know we are not meant to refer to the Public Gallery, Mr Rosindell, but I have already and have got away with it. He was training on his bike for an Ironman a few years ago and had a collision with a small lorry. He was in an induced coma for a week. There is not a mark on his head. No one who saw him at work or in the street, including a Department for Work and Pensions assessor, would have the faintest idea that he had had a brain injury, or an injury of any kind.
The fascinating thing he spoke to me about is that he has to talk to himself all the time. One symptom of brain injury is phenomenal fatigue, and if the sufferer does not see the fatigue coming, they can experience phenomenal depression, or dysphoria, as it is called.
One element of the personality change that may come about is that somebody with a brain injury might be desperate to please the person in front of them, so they might want to give what they think is the “correct answer” to the question being asked by the official. That can give a misleading idea of what that individual’s abilities are.
I have not asked Tom whether it is all right to say all this today—I see that he is nodding, so it is fine. When the Duracell battery inside someone’s head is running low, they talk to themselves to try to re-energise it, but that uses even more energy. That can lead to a vicious cycle: further depression and anxiety makes it more difficult to recharge the battery, in turn making it more difficult to get better.
There are others who have had much more dramatic and traumatic injuries, perhaps where something has penetrated the skull. However, in the vast majority of cases, the injury will be inside the brain. A fundamental part of what we have to address is how the mind and the personality sit inside the brain. Right hon. and hon. Members might have seen the television series “MotherFatherSon”, which deals with someone who has had a massive aneurysm and then a stroke. Lots of things in the programme are not entirely accurate, but many families and individuals have to cope with the very real element of personality change. I met a wonderful woman three months ago told me that she wished that her old self would come back. She could remember what her old self was like, but it is not the person she now is. She just does not know how to recreate that personality inside herself. Again, it is this thing of talking to yourself all the time.
If there has been impairment of the executive functions due to a brain injury to the frontal lobes, particularly in teenagers or as the young brain is still developing, it can lead to all sorts of other problems in terms of employability, and being able to engage with the wider world and their family. Sometimes people share far too much information; sometimes they are far too timid about being able to share information.
The most difficult element for a lot of people is the significant impairment in their ability to speak and communicate. Speech therapists are an essential part of the mix in bringing people back to a degree of independent living after a significant event. One worry across the whole of the UK is the shortage of people working in this field, who sometimes do not feel as valued in the team as they might. We need to ensure that speech and language therapy is still available for some time after someone has had their immediate intervention.
One of the most common things that people tell me is that they are accused of being drunk, when in fact they have difficulty speaking properly because they have had a brain injury, not because they are a bad person. They feel the sense of stigma that attaches to not being able to speak as clearly as they might have been able to before their brain injury.
The experience of having had a brain injury often includes the sense of being pushed from pillar to post in the health system and in the organisations that the state provides. An element of that is inevitable, because something fundamentally chaotic is being brought into an ordered system. That is how it feels to the individual, too: they knew what their life was, and then suddenly—nearly always completely out of the blue—something has happened to radically change their life and their family’s lives, perhaps permanently. All too often, however, families have to fight for every single bit of support from the national health service, the local authority, the education system or wherever.
If there is one thing that I hope will come out of all the work that we have done in the all-party group, it is that we can change that feeling of having to fight for every single element. So many patients have told me, “If I could devote all my energy to getting my brain better, rather than fighting for support, I would be a useful and fully functioning member of society. I would dearly love to be that person again.” If there were any way in which all the arms of the state could fully recognise that factor, that would be something that we should dearly hope for.
The charity Sue Ryder does an awful lot of work with people who have had brain injuries and other neurological conditions. It reckons that 15,000 people who have had acquired brain injuries are now in generalist older people’s care homes, which are probably not the places to get the right support, but are the only places available. Sue Ryder is aware of at least 515 people who are placed out of area, a long way from home, which means that all the support systems that they might have through family, friends and so on are simply not available or are extremely expensive because of the travel.
We really have to do far better. The Minister is very good on the subject—I have talked to her several times—but the tendency in the NHS and in Government circles is to put a positive gloss on everything and stress all the good things that have happened. I understand that, but we are still a long way from achieving what we all want, and what the people we are talking about deserve.
The national clinical audit of specialist rehabilitation produced a report earlier this year—it has not yet been discussed in Parliament—on all the specialist rehabilitation around the country. Somebody who has had a major traumatic brain injury, or a brain injury caused by factors such as carbon monoxide poisoning, may at first need four or five people to feed them, clothe them, wash them and provide all the basics of their daily life. However, effective neuro-rehabilitation over a sustained period can and often does mean that they need just one person—or, in an ideal world, it gives them back the independent life that they had before, in as large a measure as possible.
The good news from the report is that the rehabilitation prescription that the all-party group has discussed is being steadily rolled out across the whole country. That means that patients and their families can say, “This is what we know we should be getting—we want to make sure that we are getting it.”
One of the great successes that the Government have introduced in the past few years is the major trauma centres, which are now saving many more lives—at least 800 more a year. People who would have died of brain injuries are now alive. However, the national clinical audit has found that only 40% of those who were assessed at the major trauma centres as needing in-patient rehabilitation actually got it. That means that across England and Wales we are probably about 330 beds short. We have to strive to get those beds and make sure that nobody fails to get the in-patient rehabilitation that they need, not least because rehabilitation works. According to the audit, 94% of those who got the rehabilitation that they needed ended up able to live far more independent lives.
The net saving to the public purse from rehabilitation is significant. Extrapolated over a patient’s lifetime—in many cases it is quite young people who have had brain injuries—the average net lifetime saving from rehabilitation amounted to just over £500,000 per patient. That means that the total savings that would be generated from just this one-year cohort of patients alone was £582 million.
Investing in the 330 beds that are needed, which might cost somewhere in the region of £50 million, would generate an enormous return for the public purse. Leaving aside the finances, there is also a moral imperative. If we can not only save people’s lives but give them back as much quality of life as is humanly possible—if we can do that medically—we should do that as a society.
The other thing that I want to say about finances concerns the injury cost recovery scheme, which is a little-known aspect of the national health service. We always say that the NHS is free, and that is true. However, under the injury cost recovery scheme, local hospitals and ambulance services can reclaim an element of the cost when an individual has had an insurance claim met. The scheme was last reviewed in 2003, but in 2018-19 the sum total brought in by all the hospitals and ambulance trusts in England, Wales and Northern Ireland was £200 million, which is not an insignificant amount of money. In April, the amount that hospitals and ambulance services can charge was increased by the annual health and community services inflation measure, which meant that for in-patient care they can now claim £891 a day and for out-patients £725 a day. However, these amounts are capped at £5,381 a week and £53,278 in total.
These amounts need to be reviewed. There is no reason why hospitals in the NHS should not be able to claim a significantly higher amount when there are significant insurance claims. The extra money would not come out of the money won by the individual; it would come out of the money paid in legal and other costs. The average cost for in-patient care for somebody who has had a brain injury runs to something like £16,000 a week, yet the maximum that the NHS can claim from insurance companies is just £5,381 a week.
A regulatory impact assessment in 2006—the last one conducted by the Government—said that the cost to the NHS then was £170 million to £190 million. I reckon that in this financial year the figure would be more like £440 million, so yet again we have another means to find additional resources to put into these services.
I want to end with the experience in south Wales. I recognise that the Minister is not responsible for that, but a large number of people in south Wales, including constituents of mine and of other south Wales MPs, end up using English health services because we do not yet have a major trauma centre in Wales; there will be one and I hope that it will be very successful. I hope that the Minister will accept that one thing that was slightly left out of the equation when the major trauma centres network was set up was how to integrate fully neuro-rehabilitation—good, strong rehabilitation—and the whole pathway from ultra-acute or hyper-acute services all the way through to care in the community and patients returning to their home. Such integration was slightly forgotten and left to one side, which is why a quarter of major trauma centres in England still do not have a neuro-rehabilitation consultant.
I say to my colleagues in Wales: let us not make the same mistake in Wales. When the major trauma centre opens in Wales, I want to make sure that we have a fully functioning neuro-rehabilitation centre alongside it, so that every single patient who is assessed as being in need of in-patient neuro-rehabilitation will receive it and will continue to receive it for as long as they need it, so that they can return to full health. That should also apply to children and teenagers.
I say that because in the end, although I am not as religious as I used to be, I always have this little thing running through my mind, and I apologise if it sounds too religious or pious for some. Jesus said something about his having come to give people “life in all its fullness”. The sadness for me is that we are managing to save people’s lives but are then unable to give them life back in all its fullness. That is what the NHS should be about in this regard, because otherwise there is a cruelty, if all we do is save somebody’s life but do not give them life in all its fullness.
I therefore thank the hon. Gentleman for the work he has done; he deserves an immense amount of credit. I myself deserve a bit of credit, but much more is owed to those who helped us produce the report, by adding to our investigations, informing our findings and supporting us throughout. Across the scale, the brain injury community, if I may so describe it, deserves great credit for the work we have done so far. As he said, the Minister and the Government, who have given the matter a fair wind and a good hearing, have shown a willingness to listen and a preparedness to change, both of which are absolutely essential.
The last time we spoke about acquired brain injury, I recounted the pattern that most people follow when they have a traumatic event that leads to a brain injury. Of course, not all head injuries lead to brain injuries—it is important to draw that distinction at the outset. Nevertheless, the pattern is straightforward: shock, disbelief, fear and then, with the right support, care and encouragement, realisation and recovery. It might be argued that that is a familiar pattern for most kinds of traumatic injuries that have profound consequences, but there is a difference with acquired brain injury: namely, the effects are immensely variable and sometimes, as the hon. Gentleman said, hard to recognise or discern. Actually, they can be quite hard to discern medically, as well as socially and culturally, as recovery from a brain injury can go on for a very long time indeed, even for many years.
The hon. Gentleman spoke of changed personalities. When I had my own brain injury in my early 20s, the medical experts who were treating to me said that my personality might change. My parents said, “Oh, you don’t know him,” but the doctors said, “No, clinically we have to tell you that his personality might change.” I do not know if it has changed; I might have been less talented, less charming, less accomplished and less clever. [Laughter.] I do not know, do I? How could I know that? For the hon. Gentleman is absolutely right; one does not know what one might have been.
The reason I have taken a great interest in this subject since being elected to this place 22 years ago is that I am very conscious that my recovery was sufficient to allow me to fulfil my ambitions, and to allow me to do much of what I would have done anyway. That would not have been easy had I wanted to be a great musician, for example, as I am now extremely deaf and have suffered from tinnitus since my accident. But I did not want to be a musician. It would not have been easy had I wanted to pursue a number of other careers, but the one I wanted to pursue was that of a Conservative Member of Parliament—there is nothing more noble.
My injury did not prevent me from achieving that aim, but I am profoundly and constantly aware that others cannot say the same. As I was in hospital being treated for the immediate effects of my injury and then recovering over a considerable time, I was conscious that others were not as fortunate, that I could have been in a very different place and that, if my life had changed beyond measure, I would have been unable to do what I have done. That subtlety in the changes that take place following an acquired brain injury is the second thing, along with the variability, that I wanted to highlight.
But there is also unpredictability. One cannot be clear at what pace and to what degree recovery will take place. The combination of variability, subtlety and unpredictability makes the aftercare—the neuro-rehabilitation that the hon. Member for Rhondda rightly highlighted—a complex and challenging matter for all concerned; clearly for families and friends and those close to those affected, but also for the medical professionals and all the services that people in these circumstances engage and interact with. The Government must therefore employ the same subtlety and flexibility in dealing with the effects of brain injury.
I know that other Members wish to speak, so I will not go on forever—there will be a sigh of relief in some parts of the Chamber, and probably some disappointment in others. None the less, I want to highlight some things that the Government will need to do. As I said, last time I spoke on the matter it was about the pattern that follows an injury, but I now want to talk, from my experience in government, about what the Government need to do. First, they need to be highly responsive to the changes in the condition of sufferers, and I do not think that Governments are all that good at that; they do many things well, but I am not sure that responsiveness is one of them.
Secondly, the Government need to marry, in their work, the changing diagnostic environment and neuro-rehabilitation. I was recently at my old university, Nottingham, looking at the latest technological changes that will enable people to diagnose the effects of injury through improved scanning, and that is the sort of advance that needs to be married with neuro-rehabilitation. The University of Nottingham is also studying how different modes of rehabilitation can have different effects—which strategies work best for different kinds of individuals in recovery.
Thirdly, the Government need to adopt a cross-departmental approach—that is heavily emphasised in the APPG report. We highlight that although some Departments take the matter extremely seriously and are doing an excellent job, others need to raise their game. That is no surprise, I suppose, but none the less it needs to be emphasised. Various people here will know that we recently had a meeting with a Cabinet Office Minister to discuss how that Department can play a part in co-ordinating that cross-departmental approach. A glance at the report illustrates just how wide that approach needs to be; everything from the Department for Digital, Culture, Media and Sport, through to the Ministry of Justice, the Department for Work and Pensions, obviously the Department of Health and Social Care, and so on. Almost no Department is unaffected. The Home Office is clearly affected and, with housing, we have responsibilities for ensuring that people are properly accommodated. As almost no aspect of Government is untouched, the cross-departmental approach needs to be re-evaluated, with new thinking about how we can ensure consistency and collaboration in dealing with brain injury.
I was about to move on to the specific measures that the Government can take, which are all drawn from the APPG report but also—I say this less critically than I might—from the Health Committee’s 2001 report on these matters. For example, that report suggests:
“We recommend that the Government requires the statutory services to improve their supply of information on head injury to head-injured people and their families; such information should be given to these people in written and verbal form during their stay in hospital, should be available to GPs and should include the literature produced by Headway—the Brain Injury Association.”
It goes on to say:
“We recommend that those assessing brain-injured people for disability living allowance have specialist skills which enable them to understand the complex combination of physical, cognitive and behavioural impairments characteristic of this type of neurological disability; and that the assessment process is adjusted to allow the input of a patient’s advocate”.
It continues:
“We recommend that the Government makes explicit the level at which responsibility for planning different levels of rehabilitation for head injury should be located”.
Almost every recommendation made in 2001 is pertinent to the circumstances today. That is not to say that Governments since then have done nothing; I emphasise again that the new Minister and her predecessor have given us a very positive response since the publication of our APPG report. We have high hopes of the Minister, who I know wants to end her time in the job by saying just how much she did. [Interruption.] Well, that may be in a number of years, but whenever her time in the job does end, she needs to say, “I did so much for those with acquired brain injury.” That needs to be on her record, and we want to ensure that it is—thus our continued advocacy.
I have just a few points from our report for the Minister to consider. I will rattle through them—there are only six. First, there should be a national review of neuro-rehabilitation, to ensure that service provision is adequate and consistent. Secondly, acquired brain injury should be included in the special educational needs and disability code of practice. Thirdly, all education professionals should be trained, or at least have a minimum level of awareness. Fourthly, all agencies working with young people in the criminal justice system, including schools, psychologists, psychiatrists, general practitioners and youth offending teams, should work together to ensure that the needs of individuals are assessed. Fifthly, in the welfare system, all benefits assessors should be trained to understand the problems that affect individuals with acquired brain injury. Sixthly, a brain injury expert should be on the consultation panel when changes in the welfare system are proposed. I do not say that those are the only important things; we could talk about sports injuries and all kinds of other things that are in our report and have been debated before. But doing those six things alone, or six others taken from the report, would make an immense difference to so many people.
Finally, I want to quote C. S. Lewis—not Jesus but certainly a man who knew Jesus. C. S. Lewis said that
“courage is not simply one of the virtues, but the form of every virtue at the testing point”.
Courage is required by those who suffer from acquired brain injury, but it is also required by Ministers to make a difference, and I know that this Minister, inspired I hope by the efforts of Members across the House and also by the needs, plight and interests of all those affected by acquired brain injury, will employ the necessary courage to make a difference.
There have been many debates about what the definition of acquired brain injury is. I do not think it helps to focus on little details; it is important to be inclusive and generic, and make sure those people who need services, help and support get them. That is why I believe the definition of acquired brain injury should be wide and far-reaching. It is important that we remember that when we look at the various options.
Our national health service is a fantastic service. My constituency of Newport West is very close to Aneurin Bevan’s, so obviously I am going to say the NHS is brilliant—of course it is. It is great at the life-saving stuff, but it is not so great at the long-term rehabilitation needed by people with long-term conditions. With cardiac arrests, lives are saved, but the aftermath and the quality of life afterwards are so important.
Acquired brain injury may be the result of one incident or acquired over a period of time, but its effects are always lifelong and often permanent. As a physiotherapist, I have worked with patients with acquired brain injury at various stages of their journey, from intensive care—when it is very much life or death what is going to happen next—to the sub-acute, high-dependency and in-patient settings. At those stages, there is thankfulness that the person is going to survive, but the reality is beginning to set in that this will not change back any time soon; this is a permanent change, and the family has to deal with it. That is a very hard time for people.
There is then the long-term effect, when people might be back in their homes but are struggling to deal with their adjusted circumstances. That is often a time when people feel neglected, left and lost, and it is important that we focus on that area as well. Acquired brain injury does not just affect one person, but their families, friends and work colleagues; as my hon. Friend the Member for Rhondda has said, this predominantly affects younger people, so work colleagues are also involved. People always express their wish to provide help and support, but they need advice and guidance on how best to do so, and it is important that we recognise that.
The effects of acquired brain injury are also far-reaching, and might be physical, mental, or even spiritual. Others speak far more eloquently about that, and how it impacts on people’s working and daily lives, but I would like to emphasise the long-term needs of people with acquired brain injury. Research in the field of neuro-plasticity clearly indicates that recovery can go on for weeks, months and even years after an insult or trauma. It is therefore vital that our rehabilitation services can match that, so they must be available for weeks, months and years after the incident. In the later stages, somebody may not require treatment, advice and support every day, but it should be available for them to access when they need it.
I am delighted that the Health Minister is here today, and I would like to make a plea to her for additional resources for the vital services that people with acquired brain injury require in the long term. Obviously as a physiotherapist I am biased, so I am going to say we need more physios, but we also need occupational therapists, speech and language therapists, and providers of other therapies. Psychological input and support is also vital, and people often overlook that important aspect of rehab. The right hon. Member for South Holland and The Deepings (Sir John Hayes) has also mentioned diagnostics, because if we do not know what we are dealing with, we cannot treat it effectively.
It is really important that we have those additional resources when we need them; they should be accessible through time, over months and years. It is important to remember that this is not an event, but a process.
The fact is that without any of those elements of support, Keith would almost certainly be in a care home somewhere, watching TV or just looking out of a window. We are blessed to be in a community that takes care of its own, but there are so many people without that care and support who have no alternative to being in a residential facility, with no independence or semblance of who they once were. That is incredibly sad, but it does not have to be that way. I put on record my thanks to all those involved in Keith’s care from the time he had the accident, from the surgeons to the nurses and all those who helped, and for all the prayers that were made for him.
Some 350,000 people are admitted to hospital in the UK every year with ABI-related diagnoses as a result of trauma, stroke, tumour, infection, illness, carbon monoxide exposure, or hypoxia. That means that every 90 seconds, somebody with an acquired brain injury is admitted to hospital. In Northern Ireland, some of the stats are quite worrying as well: in 2014-15, there were 11,287 ABI-related hospital admissions, including 5,304 from a head injury and 4,109 from a stroke. In 2015-16, there were 11,121 admissions, 4,916 from a head injury and 4,256 from a stroke. In 2016-17, there were 10,762 admissions, 4,742 from a head injury and 4,269 from a stroke. The figures have fallen slightly, but the numbers are consistent.
We also have carbon monoxide poisonings across the UK. In England and Wales, there are about 30 deaths and 200 hospital admissions each year, as well as 4,000 visits to A&E, costing the taxpayer some £178 million per year—I know that the cost of lives to families is greater, and we should be aware of that. I support the aims of the all-party parliamentary carbon monoxide group, which has recommended that
“the Government introduce preventative measures including mandating CO alarms in all tenures, providing CO monitors in first-time pregnancies, and tackling sub-standard housing that increases the risk of CO exposure.”
Although I know that area is not directly the Minister’s responsibility, I ask her what has been done in relation to it. The APPCOG also recommends that
“Public Health England and the Foreign and Commonwealth Office do more to raise public awareness of CO in order to encourage risk-lowering behaviours at home and abroad.”
It is my belief that we could do more to prevent carbon monoxide poisonings, and those recommendations could positively affect the figures in future.
It is daunting to see someone who one minute is in their prime, and the next is completely changed. I know, because I have seen that; I have lived through it and felt it in a big way. Many people do not see a light at the end of the tunnel, so there is a need for support and respite. Many more loved ones might be able to stay with their family, rather than having to go into full-time care. There must be access to timely, specialist rehabilitation and support services, and an end to the lengthy waiting list for social service assessments for public support.
Finally, I will make a request about the benefits system. We have had to fight for everything for Keith from the very beginning. We were his court appointees; we looked after his financial affairs and everything for him, yet the benefit system does not seem to understand that. We could have had a wee bit more help with that as well, so I put that down not just for us, but for other family members.
I finish with this: as with all things, funding is key. We must rethink this strategy, and realise that it is more cost-effective in the long term to allow people to remain at home with support. More importantly, that means a better quality of life for those people, which has to be a material consideration in any Government decision.
Nicola says that the hardest part of the whole journey for her and her family was when her husband came home. Their isolation, and the lack of support that was there for her, for him and for their daughter is something that we cannot allow to continue; it must be addressed urgently. Initially she was expecting him to get better and was waiting for recovery. I know that happens for some people, and it is a wonderful thing and should be happening more, but for some people, that is not the likely outcome. She has had to learn to love and be with a new person, effectively. It is a journey that I do not think any of us can appreciate unless we have found ourselves in that situation.
In Parliament, we talk a lot about inspiring people, and Nicola is incredibly inspiring. She has written children’s books to explain to her daughter what is the matter with her daddy, to normalise the situation and to get her used to what is happening. One of the things Nicola has told me about that concerns me a lot is the lack of consistency in support for families when people leave hospital. She said there is a clear discharge programme in Oxford, where all staff are briefed and letters go to the family’s GP so that the carer’s GP knows that their patient has now acquired this new caring responsibility and may need additional intervention and support. She said that the support is virtually non-existent in some other areas, and I fear that my area of Durham Tees Valley is not up there with the best in that regard.
I have been to Headway and taken the time to understand the pathway on which many of my constituents find themselves. I do not think we have it right. Luckily, thanks to Nicola and her leadership, we have a wonderful Headway branch in Darlington, but if that was not there, there would be virtually nothing for people in such circumstances. Services should be provided according to the need of the person affected and their family, not according to where they live. I know we say that about lots of conditions, but I have never seen it as stark as I have seen it with brain injury. I would be grateful if the Minister could take it upon herself to look at the services available in Durham Tees Valley in particular and to get back to me with her assessment of how far we are from meeting what should be national standards—a minimum expectation for patients and their families.
I want to talk briefly about children with brain injuries. The invisibility we have talked about is a real problem for them, and the question of whether a brain injury has been recognised or diagnosed is a key factor. It is important that we correct that to improve things for children. A Health Minister is responding to the debate, but the issue is not only about health; it is also about education. Schools have a great impact on the future development of the child. It is not just about what happens on their immediate return to school; it is also about how they continue to be supported and developed at school. Neuro-rehabilitation and adjustments at school are great. Some adjustments are minor, but there are other issues such as noise, light and the shade of paper that is used. All those things can be difficult and need continuous attention. We need to do more to ensure that children get appropriate support.
Charities working in this area are doing a huge amount of work to improve things. I mention in particular the Child Brain Injury Trust, which does great work and has developed some proposals. Sadly there is not enough time today to tell you what they all are, but I refer to my previous speech in Hansard, where people can find all those recommendations listed.
I was disappointed by the Department for Education’s response to our recommendations in the “Time for Change” report. That response sounded like, “Everything is okay here. We have education, health and care plans and governors and schools know their responsibilities.” Things are not okay, however. There needs to be real understanding of the specific needs of children. After all, what happens in childhood seriously affects the life outcomes of young people. As we have heard, that can bring into play things around justice, employment, health and many other areas of life. As we are speaking, the APPG for the prevention of adverse childhood experiences is meeting, and brain injury is one of the key things that can affect the development of a child.
I am glad to hear from colleagues at the UK Acquired Brain Injury Forum that a group called the National ABI Education and Learning Syndicate, or N-ABLES, has been put together to look at practical steps to raise awareness and to take work forward. I would tell Members so much more if I had the time, but I do not, so I will just say that those people are doing some good work. I encourage the Minister to speak to her colleagues in the Department for Education to ensure that that link is made and that practical steps are taken.
Finally, I want to mention one of our local organisations, a great north-east charity called One Punch North East. It is working hard to say that something as simple as a minute or one incident can cause life-changing damage. I commend it on the work it does.
As many Members have said, acquired brain injury is an under-recognised, hidden condition, yet it can impact on every aspect of a person’s life. As has been mentioned, 40,000 children and young people report to hospital with an ABI every year, but it is very likely that many thousands more have a mild brain injury that goes completely undetected. That can be associated with a range of cognitive, behavioural and emotional symptoms that can impact on education, health and relationships. It is important that we do more work on that.
We need to address neuro-rehabilitation specifically for young people. An ABI affects their brain when it is still developing and can have a temporary or permanent effect on their functioning. Sometimes it can be forgotten during a young person’s development and their time in school that they have a brain injury. It is important that specialist services follow up with children, particularly at key transitions. Children have a long life ahead of them, so work done in the early years to improve their outcomes can have a long impact through their childhood and adulthood.
An acquired brain injury in childhood can impact on school engagement, attendance and achievement. It can result in young people being more vulnerable to exclusions from school and being involved in the youth justice system. Obviously it can affect their job prospects and further education. It can impact on their mental health and self-esteem, lead to isolation and poor participation, and increase care demands for families.
I have already highlighted the patchy nature of neuro-rehabilitation services. I am pleased that in Nottingham Children’s Hospital, which is a regional centre for neuro-sciences and a major trauma centre for the east midlands, we are fortunate to have a multidisciplinary paediatric neuro-rehabilitation team known as the BRILL team—Brain Injury Living Life. However, that does not mean that everything is perfect, even in our region. There is a desperate need for dedicated rehab beds, follow-up clinics and more neuro-psychological support.
Before closing, I want to ask the Minister a couple of questions. What is being done to ensure that children’s services are better developed and that families are not faced with a postcode lottery as to whether their child receives neuro-rehabilitation? Will the Minister commit to a national review of those services, including those for children and young people? Is there an assurance that the number of rehabilitation beds for children and young people will be reviewed? Will the Government commit to ensuring that children as well as adults leave hospital with a rehabilitation prescription? Will the Minister agree to organise meetings between Departments? As my hon. Friend the Member for Blaydon (Liz Twist) said, the links between health and education are really important in making sure that children are well supported. Will the Government invest in and support research so that we better understand the long-term impact of a childhood acquired brain injury? Such questions will help us to move forward.
We have heard in this debate that the symptoms of ABI are often completely invisible, which echoes a point made to me by one of my constituents since the previous debate. He discussed his own ABI and said that he felt there was often more public and employer sympathy and support for an obvious injury such as a broken leg than there was for a broken brain, which is something we undoubtedly need to address. The importance of speech therapy to avoid people being assumed to be drunk and to get their self-confidence back are highly important points. Since it affects every aspect of our country across all our nations, the financial savings of getting it right give us a financial incentive as well as a moral responsibility to tackle the issue. Fundamentally, for me, the issue is about ensuring that people with disabilities such as ABI can live as independently as possible. Disabled people should have the freedom, dignity and choice to control their own lives. We need to help remove the barriers that stop them from enjoying full and equal access to full citizenship.
It is estimated that ABI is the most significant cause of disablement for people of working age in Scotland. We know that only around 40% of working-age disabled adults are in employment, compared with more than 80% of those without a disability, so we really have to address the employability gap. Many of those with ABI have complex rehabilitation and support needs. The Scottish Government have recently run a consultation on their first draft national action plan on improving the care, treatment and support available to the neurological community. The consultation closed on 8 February this year. They aim to publish their report this summer, and the final national action plan on neurological conditions later this year. I look forward to seeing what comes out of that.
The Scottish Government initiated the National Prisoner Healthcare Network’s report on brain injury and offending, which was published in 2016. The subject of offenders came up in the previous debate, and I admit that I was not fully aware of it at the time. The programme in Scotland was led by Professor Tom McMillan of the University of Glasgow, and it is now in implementation and has developed an empirical basis for the development of a service in all Scottish prisons. The benefits will be to improve the management of people with brain injury throughout the criminal justice system and to reduce the risk of further brain injury in prisoners.
Around 75% of male prisoners and 66% of female prisoners have multiple head injuries. Benefits will also see reduced reoffending—around 70% of those with head injuries reoffend—and improved community reintegration. Those stark figures are striking. It is also worth noting that prisoners with a history of multiple head injuries are more likely to be convicted of violent offences, so there is a lot of work to do. I am grateful that I have learnt that information since the previous debate, so the hon. Member for Rhondda gets full marks for increasing my education.
In May I spoke about the Scottish Acquired Brain Injury Network and I want to discuss more of its work today. SABIN is a managed clinical network based within the NHS in Scotland, comprising clinicians, third sector organisations, patient representatives and non-clinical staff all working to improve the access to and quality of care for patients with an ABI across Scotland. Scotland remains the only country internationally with a single set of concussion guidelines across all sports at grassroots and amateur level. The Scottish sports concussion guidance has been in place since 2016, with the most recent update in 2018 contributed to by SABIN. In addition, research into the consequences of sports brain injury, in particular the study “Football’s InfluencE on Lifelong health and Dementia risk (FIELD)”, is set to provide the first understanding globally of the late consequences of contact sports participation through a series of publications in the next few months.
SABIN was delighted to take part in the Scottish Trauma Network’s second annual conference last week, which took place on 26 and 27 June. Over those two days it was able to highlight to clinical colleagues and Government stakeholders the importance of ABI care within a trauma setting and beyond. Patients with an acquired brain injury are some of the most seriously ill trauma cases; patients are often young, with many years of rehabilitation ahead of them. The need for early access to intensive rehabilitation is a message that needs to be relayed to one and all to support investment in rehabilitation. We cannot emphasise that point enough.
SABIN is currently involved in a geographical mapping of NHS services for acquired brain injury patients across Scotland. It previously did that in 2009, and it will be interesting to see how services have changed over time. Preliminary results from the service mapping highlight key challenges across Scotland: the same key challenges that we heard about from colleagues south of the border. They include a lack of access to rehabilitation; workforce shortages, particularly in relation to staff trained in managing patients with an ABI; the difficulties of managing patients with challenging behaviour; and the need for dedicated ABI units. A full report will be circulated to NHS boards in Scotland and will be available on the SABIN website. It is due for completion at the end of August, and SABIN is keen to work with NHS boards to assist them in planning rehabilitation services. It is worth pointing out that the first of four major trauma centres opened in Aberdeen in October, and those services have not been included in the mapping exercise. Things are improving, but the report will still be of significant interest.
Alcohol Health Alliance, in advance of today’s debate, has highlighted the link between alcohol and injuries and accidents that can cause an ABI, and also the link between ABI and problem alcohol consumption. Actions taken in Scotland to reduce alcohol abuse have seen the number of alcohol-related emergency hospital admissions fall by more than 17% since 2007, so there is good practice out there. One of our more recent innovations has been minimum unit pricing. It is probably too early to say how it has affected ABI or other health issues, but sales have dropped by 3% since it was introduced last year. Alcohol sales per adult in Scotland are now at the lowest level for 25 years, so the Minister might wish to consider something similar for England, as I am sure it will have many benefits for health and not just for ABI.
It has been a pleasure to take part in the debate, and I am grateful to the hon. Member for Rhondda for securing it.
We are here again today debating the subject because of the scale of the problem: currently, 1.3 million people in the UK live with an acquired brain injury. Every 90 seconds someone is admitted to hospital with such a brain injury. We have considered the human cost of acquired brain injury in this debate and we have also heard of the financial cost. In the previous debate the Minister said that it cost the UK economy £1 billion, but the APPG reports that the truer figure is £15 billion, alongside the human cost.
Consideration of this subject is not new. The Health Committee has been reporting on the issue since the turn of the century, furnishing Parliament with a raft of recommendations, many of which have never been implemented, so it really is time for change. Last year the APPG set out a range of recommendations for the kind of support and rehabilitation that must be made available. As the term suggests, acquired brain injury applies to injury caused to the brain after birth, and it can happen to anyone at any time. It is usually caused by a trauma to the head but can be the result of substance abuse, and the Alcohol Health Alliance has reported on the growing incidence of alcohol-related brain injury. My hon. Friend the Member for Sefton Central (Bill Esterson) talked about the effect on unborn infants of foetal alcohol syndrome.
All Members have constituents who have lived with the consequences of ABI. A brain injury can happen in an instant, but its effects can be devastating and lead to lifelong challenges. My hon. Friend the Member for Rhondda mentioned that the condition is often not visible, and that sufferers can appear to be drunk. There is a tremendous lack of understanding in the community. The right hon. Member for South Holland and The Deepings (Sir John Hayes) talked about the fact that it is difficult to detect, medically, socially and culturally. There is a total lack of understanding.
Owing to improvements in medical procedures and acute care, more people than ever before survive following an injury to the brain. That is of course really welcome, but it brings with it a responsibility for Government Departments to support those affected, which is crucially all about quality of life. It is cruel to save lives without following up with support and rehabilitation. As my hon. Friend the Member for Newport West (Ruth Jones) said, sharing her expertise, not providing vital support services is where the NHS is at its weakest. My hon. Friend the Member for Darlington (Jenny Chapman) talked movingly about the experience of Nicola and her family, and the failure to get the support and help that they clearly needed to get them through.
Early and continued access to specialist rehabilitation has been shown to optimise the chances of recovery and to be extremely cost-effective. As is the case for many health conditions, however, the number of available beds across the UK is inadequate, and service provision is variable. Consequently, long-term outcomes for brain injury survivors are compromised, with many describing being passed from pillar to post. It is particularly distressing to hear the experiences of children, as my hon. Friends the Members for Blaydon (Liz Twist) and for Nottingham South (Lilian Greenwood) mentioned.
It is clear that a national review of neuro-rehabilitation is required, with particular reference to the service provision for children, to ensure that provision is adequate and consistent throughout the UK. Members have described current provision as a lottery. All affected individuals should be given a rehabilitation prescription and a well-defined pathway to recovery. I ask the Minister again to focus on that, because NR can help to avoid or minimise disability and optimise recovery. Early access is critical, and substantial evidence demonstrates that NR is both clinically effective and cost-effective.
Will the Minister ensure that every individual with an acquired brain injury gets an NR prescription and has their individual needs specified in a care pathway? Will she ensure that all health professionals in the community in primary and secondary care are trained to recognise the symptoms of acquired brain injury? I asked for those commitments from her the last time we debated the subject. She has demonstrated that she is listening, which we all appreciate, but can she ensure that the Government up their game and act on those precise commitments?
This is not just a matter for the Department of Health and Social Care, of course. In September 2018, the APPG’s report called for reform in all areas and Departments. It should be an issue for the Department for Education, because 24% of children have some sort of brain injury, compared with 1% who have autism. That has clear implications for teacher training, and it is essential that special educational needs and disability specialists are appropriately trained to recognise the signs. It is also a matter for the Ministry of Justice, as ABI can often lead to criminal behaviour. My hon. Friend the Member for Rhondda has regularly raised the issue of female prisoners who have been found to have brain injuries caused by exposure to domestic violence. All benefits assessors in the Department for Work and Pensions should be trained to understand the problems that affect individuals with ABI. Excessive bureaucracy and form-filling can be a nightmare for many vulnerable claimants, but for someone with an acquired brain injury it can present an insurmountable barrier, leading to sanctions and additional hardship.
As was mentioned in the previous debate, there is a lack of awareness among those involved in contact sports such as football and rugby. Government and professional clinical bodies must work collaboratively to improve health professionals’ knowledge of concussion management. In defence, we must work to ensure that acquired brain injury among veterans is fully recognised and that the appropriate support is made available. The Minister committed to pass on concerns to colleagues in other Departments, and I hope that she will be able to report back on their responses.
We have heard over and over again about the human cost of acquired brain injury. Frankly, it also makes no financial sense not to put the right care plans in place and deliver the support that individuals and their families need. I urge the Government to implement the recommendations of the APPG in full, and to raise their game across Departments to ensure that the people we have heard about today truly get the support they need.
I also thank all right hon. and hon. Members who have spoken, and those who have been present but have not spoken. People have shared personal experiences—things that are painful to them, and that they have lived with for a long time. I particularly welcome the hon. Member for Newport West (Ruth Jones) to her place. I think that this is the first time that I have responded to a debate in which she has spoken.
As with many long-term conditions, ABI affects not only a person’s health but aspects of their family life, work and relationships. I responded to the debate on 9 May. I am still chasing ministerial colleagues in other Departments for their comments, but because time is quite short I will focus today on the many points that have been raised about the health aspects. However, I will go back to ministerial colleagues, chase them and impress on them that this important issue affects many Government Departments.
I met representatives of Headway after the debate on 9 May, and I thank those who work with Headway and organisations such as the UK Brain Injury Forum. Such organisations are really valuable to people living with ABI. They raise awareness and provide help to support those with the condition, as well as families and carers. The hon. Member for Darlington (Jenny Chapman) mentioned how important that is. I take on board the report of the all-party group, to which the Government responded, and I pay tribute to the hon. Member for Rhondda and my right hon. Friend the Member for South Holland and The Deepings (Sir John Hayes).
In 2014, two years after the introduction of major trauma centres, there was an independent audit of the regional trauma networks, commissioned by NHS England. That audit showed that patients had a 30% improved chance of surviving severe injuries, and that the networks had saved 600 lives. That does not mean that they are perfect, but some progress has been made since their inception. Although the majority of rehabilitation care is locally provided, NHS England commissions specialised services for those patients with the most complex levels of need. For people who have ABI, timely and appropriate neuro-rehabilitation is an important part of their care.
I thank the APPG for all the work it has done on rehabilitation prescriptions, which reflect the assessment of the physical, functional, vocational, educational, cognitive, psychological and social rehabilitation needs of a patient, and are an important element of rehab care. Of course, the APPG report stated that all patients with ABI should benefit from an RP.
I will touch on lots of the points that Members have mentioned. In particular, I thank the hon. Member for Rhondda for drawing the House’s attention to the third and final report of the audit, which was published in April 2019, only a few days before we last discussed this matter. It is encouraging that 94% of patients accessing specialist rehab have evidence of functional improvement, but the report suggests that there is more work to be done to ensure that all patients who could benefit from specialist rehabilitation can access it.
To return to the audit, its authors estimate that current provision caters for 40% of those who need the services, so there is a lot more to do. On capacity, the audit made some recommendations, including that trauma centres should review their processes and ensure that standards for rehabilitation provision and availability are met, and that commissioners should consider opportunities for development of specialist rehab capacity, both for in-patient and community-based services—a point that hon. Members have raised. These are important points. Although we only had this debate two months ago, I am glad that the hon. Member for Rhondda has raised the subject again. I will discuss with NHS England what it is thinking, what it is doing on the audit and what the next steps are. We need to impress on it the importance of bed provision.
The majority of rehab care is commissioned and managed locally and there are guidelines produced by NHS England, such as the principles and expectations for good adult rehabilitation, which describe what good rehabilitation care looks like. There is additional guidance that covers both adults and children.
Many hon. Members mentioned neuro-rehabilitation for children, and I know that NHS England is aware that there is variability in the provision for children. Best practice guidance was published in 2016, but there is always more to be done. I will take the points away and speak to NHS England. We are looking at how we can educate people on foetal alcohol syndrome, and I am happy to report back to the House on that.
The hon. Member for Newport West raised a specific issue about speech and language therapists and physiotherapists. I very much agree that we need a joined-up approach to care and I am concerned to hear that there is a gap. Members can make representations to NHS England on that. I know the situation is different in Wales, but I would be very happy if the hon. Lady would keep me informed.
The hon. Member for Rhondda raised the injury cost recovery scheme. Again, that is a matter for the DWP and I will be pressing ministerial colleagues to respond on that point. That scheme allows for the recovery of costs for providing treatment to an injured person where that person has made a successful personal injury claim against a third party. It recovers funds from insurance companies and pays into the NHS or hospital ambulance services. The current cap is around £53,000, renewed annually in line with inflation. I will follow up with more detail—the hon. Gentleman looks slightly sceptical.
The NHS long-term plan was announced in January this year. There are some key actions designed to improve the care, treatment and support of people with long-term conditions, such as ABI. Community services, which play a crucial role in helping people with long-term conditions such as brain injury, remain as independent and well supported as possible and are to receive significant investment. The long-term plan set out £4.5 billion of new investment in primary and community care, including for expanded community multidisciplinary teams, providing rapid targeted support to those identified as having the greatest risks, including those with long-term health conditions.
There is also the comprehensive model of personalised care, which includes self-care, care planning, personal health budgets and social prescribing, and which we hope will reach 2.5 million people by 2023-24.
The hon. Member for Rhondda and my right hon. Friend the Member for South Holland and The Deepings used some great quotations in their speeches, so I will conclude my remarks with a quotation attributed to Sir Francis Drake, who said:
“There must be a beginning of any great matter, but the continuing until the end until it be thoroughly finished yields the true glory.”
Ministerial office is not something that I take for granted, but I hope that today’s debate has demonstrated how seriously this Government and this Minister take ABI and the devastating effects it can have on our constituents.
To correct one element, perhaps we have given the impression that all is gloom. I have met so many people who have had brain injuries and whose personality change has been marked, but sometimes they have developed a phenomenally savage wit that they did not have before. There are people who have said, “Yes, it has changed me, but I have become a new person and that person can play a full part in society and has discovered other ways of appreciating life.” So let us not turn all of this into gloom. I just want us to be able to do better—to make sure that there are enough rehabilitation beds for every single person to get the improved care from which they could benefit.
I have met the deputy Prime Minister several times and I think it is really important that the Government now decide, as a matter of priority, to set up some taskforce—probably of junior Ministers, probably with this Minister at the helm—to drive forward this issue in all the different Departments that it affects. We could get the health bit right and lose out on so many other bits and, in the end, we would have failed the people we are talking about.
Who knows what will happen to the Government? Anybody who says they know what is going to happen to the Government later on this year is lying, but I wonder whether there might not be a moment now to say, “We are going to make this a priority. It is going to be a three-year taskforce and we are going to make sure that every single Department pulls its weight to make sure that we truly deliver.” As I said earlier, it is almost cruel to save lives and not give people the quality of life that they deserve.
Question put and agreed to.
Resolved,
That this House has considered acquired brain injury.
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