Acquired Brain Injury

Lilian Greenwood Excerpts

Tuesday 2nd July 2019 Westminster Hall

[Chris Bryant]

There are specific issues that affect children. It is a profound source of depression to me as a Labour Member and a socialist that a child from a poorer background is four times more likely to suffer a brain injury before the age of five than a child from a wealthy background. We need to look at all the elements that lead to that, because prevention is far better than cure. I have spoken in other debates about issues that relate particularly to education, including the importance of schools having as full an understanding as possible of how brain injury can affect a child. All the statistics now indicate that every primary school class in this country has at least one child who has had a significant brain injury, although many of them may be undiagnosed. That is an issue for every single school in the country, and I do not think that we have fully taken it on board yet.

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.”

[Lilian Greenwood (Nottingham South) (Lab)]

I congratulate my hon. Friend on securing the debate and on his speech. Does he share my concern that neuro-rehabilitation in the UK is particularly limited for children? There is just one option for in-patient neuro-rehabilitation and post-hospital discharge, which is run by the Children’s Trust in Surrey. Should not every region have a paediatric neuro-rehabilitation pathway, rather than the patchy and underfunded set of services that we have at the moment?

[Chris Bryant]

My hon. Friend is absolutely right. Indeed, I know of a case that makes that point extremely keenly, where a young lad ended up having to go from south Wales to Surrey. Obviously in south Wales we love visits to Surrey, but it is a phenomenal cost for the family to have to visit their child there every week because it is the only facility in England and Wales. There is also an emotional cost in being a long way away and not being able to see their child every day. We really need a string of these paediatric services across the whole country.

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.

--- Later in debate ---

[Lilian Greenwood (Nottingham South) (Lab)]

It is a pleasure to serve under your chairmanship, Mr Rosindell, and to follow so many fine speeches. Like my hon. Friend the Member for Darlington (Jenny Chapman), I am not an expert on acquired brain injury, but I recently met Dr Emily Bennett, who is a consultant clinical psychologist in paediatric neuro-psychology at Nottingham Children’s Hospital. She has provided me with some briefing on the subject, which I would like to share.

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.