Acquired Brain Injury

Liz Twist Excerpts

Thursday 9th May 2019 Commons Chamber

[Liz Twist (Blaydon) (Lab)]

I thank my hon. Friend the Member for Rhondda (Chris Bryant) for opening the debate in such an excellent manner and the right hon. Member for South Holland and The Deepings (Sir John Hayes) for helping to secure it.

Acquired brain injury is often a hidden disability. It is so hidden that, before this all-party parliamentary group inquiry, I had failed to recognise that people I know—family members, friends and colleagues—have an acquired brain injury. Some people may have outward, visible signs of the trauma that they have been through, but for many there are no outward clues. That can mean that, instead of people recognising the disability and responding in a helpful or understanding way, they may be impatient or downright rude, or try to rush those with acquired brain injury. This may not just be the case for people we bump into; it could be the officials of one Department or another who really do not get it. For example, assessors for personal independence payment or employment and support allowance may not have sufficient understanding of the effects of acquired brain injury and fail to recognise that what may appear as a reasonable response can actually hide the reality of the disability.

It has been a real privilege to be involved in the inquiry and the report, “Time for Change”, to reach so many people affected by acquired brain injury, to hear their personal stories, to hear about the positive impact of effective neuro-rehabilitation and, sadly, sometimes to learn where such rehabilitation has not gone so well and people are struggling to cope. At the presentation of our report last year, we watched a very moving film showing people suffering from acquired brain injury describing their experiences. I found it a very moving experience that really brought home the difficulties that people can face.

The practical effects of acquired brain injury affect many areas of life, and our evidence sessions covered neuro-rehabilitation, education, criminal justice and sport-related concussion and touched on the welfare benefits system. The launch of “Time for Change” was well received, and was attended by Ministers, the shadow Secretary of State for Health and many other Members of Parliament. Most importantly, some of those who have acquired brain injury told us their personal stories. Our report made a number of recommendations in each area that we studied and, most importantly, called for Departments to work together to improve services and join things up. It was clear to us, as I am sure it will be to the House, that this is not just a health issue to be left to the Department of Health—although neuro-rehabilitation and physiotherapy, along with many other health services, are of huge importance in recovery and development—but one that needs to be joined up across other Departments.

If we are to make the real change that we have called for, we have to link up what happens in health with what happens at school, in the Department for Work and Pensions and in so many more Departments. Since the report was launched, there have been meetings with a number of Ministers, including the Chancellor of the Duchy of Lancaster and Minister for the Cabinet Office and the Economic Secretary to the Treasury, to name but two. The Government have now responded to our report, with the Department of Health pulling together responses to our recommendations from other Departments. I will refer to one of those Departments in particular—the Department for Education—and introduce a new area that was not covered in our report but that has been mentioned today.

It becomes clearer and clearer the more we look at it that acquired brain injury and its impact spread into so many different areas of everyday life, but I will focus on education and children. “Time for Change” called for some very specific measures. As we have heard from my hon. Friend the Member for Rhondda, this condition affects many more people in disadvantaged areas than elsewhere, so it is really important that we get to grips with it. Our recommendations were fairly straightforward. Acquired brain injury should be included in the special educational needs and disability code of practice. All education professionals should have a minimum level of awareness and understanding about acquired brain injury and about the educational requirements of children and young people with this condition—for example, with the completion of a short online course for all school-based staff.

Additional training should be provided for the named lead professional who supports the individual with acquired brain injury and for special educational needs co-ordinators. We recommended that the acquired brain injury card for under-18s produced by the Child Brain Injury Trust should be promoted in all schools, hospitals and local education authorities. Many children and young people with acquired brain injury require individually tailored, collaborative and integrated support for their return to school and throughout their education. As agreed return-to-school pathway is required—led and monitored by a named lead professional—to provide a consistent approach and support for the individual, their family and their teachers. An enhanced education campaign should be implemented in schools to improve awareness and understanding of sport-related concussion, with the support of Departments.

During filming for the launch of the report, I had the chance to talk to a young man from Scotland who had returned to school following an acquired brain injury and who told me about his experience of doing so. Simple things were not happening, like making sure that he had off-white paper because the white paper was far too bright for him to be able to take in. There was also the impact of noise affecting his concentration. They were all quite small things, in themselves, that were supposed to be planned for but actually did not happen. That brings it home to us that it is those small things that can make a big difference to children.

[Chris Bryant]

My hon. Friend is making a really important point. There are two other areas where we could do more in exactly the same way. One of those is in prisons, where toning down some of the sounds and noises makes it much easier for those with brain injury, and the other is in our supermarkets. It is great that Morrisons, certainly in my patch, has an hour at the beginning of the day when the lights are a bit dimmer. It would good if all supermarkets had a similar sort of event.

[Liz Twist]

I thank my hon. Friend for those remarks; I most certainly agree. As I say, we just do not think about these things sometimes, and they can have such a huge impact in improving things for people with acquired brain injury.

I am afraid that the Government’s response in this area was rather disappointing. As in earlier answers to parliamentary questions, the Department for Education seemed just to restate the current responsibilities of schools and governors for SEND—special educational needs and disability. Our inquiry showed that there needs to be a greater understanding, very specifically, of both the presence of an acquired brain injury in young children and the practical steps needed to help staff to support these children with what is often a hidden disability. We also need greater co-ordination between health and education professionals to support children returning to school after a brain injury.

We have recently had much discussion in this Chamber and in Westminster Hall about the funding pressures on schools and the impact that that is having, particularly on special educational needs. We really have to bear that in mind. It is not enough to restate the law and the theory—the thinking—behind special educational needs and education, health and care plans, and then leave it to staff and governors who are increasingly under pressure just to hold things together at school. I would have hoped for a more positive response in this area. I hope that Education Ministers will look at it again and address the need for more practical steps to ensure that pupils have what they need to develop and be supported at school.

[Sir John Hayes]

The hon. Lady is making powerful points. The key is that these plans have greater specificity and quantification so that the development of the response to someone’s needs could be as particular as it needs to be. That means quantifying exactly what happens once the needs and the response to them are drawn up.

[Liz Twist]

I thank the right hon. Gentleman for those comments. I most certainly agree that we need to have very specific proposals on how we can support people and to make sure that the support is actually put into place as well. As we know, there can sometimes be delays in achieving the ECHP, so I hope that more work can be put into that as well.

The Child Brain Injury Trust, which does excellent work in this area, has issued a call for action that includes some quite practical steps. It tells me that professionals across the field of acquired brain injury educational psychology are working hard to achieve the changes needed to support children in education following an acquired brain injury, but this requires all parties to listen and to implement the recommendations of the “Time for Change” report.

An acknowledgement of the support and interventions needed for paediatric acquired brain injury is required to limit the long-term societal costs and impact that this disability can have. Of course, it affects society as a whole, not just the individual. We want to give people the best chance in life, and that is why it is particularly appropriate to look at how we can support children who have an acquired brain injury. There needs to be improved training for newly qualified teachers—currently, acquired brain injury is not covered in that training—and a national campaign of recognition that acquired brain injury affects an additional 40,000 children and young people every year and has a significant impact on society.

The Child Brain Injury Trust says that acquired brain injury continues to be misdiagnosed and misunderstood, and our current system, and lack of knowledge and support, is letting down thousands of families. Funding is required for whole-family support. We need improved training for educators and youth justice teams, because over 60% of young people in custody report prior head injury. As other Members have mentioned, many young people affected by acquired brain injury are excluded from school due to their “inappropriate behaviour” and then go on to commit crime. Therefore, better knowledge of the condition and improved support has the potential to save society huge sums of money otherwise needed for youth justice.

The Child Brain Injury Trust calls for involvement and commitment from the Department for Education to support and fund some of these recommended initiatives. As I said, I hope that the Department for Education will take a more active part in looking after these young people and look again at its response to see how it can be improved.

The other area I want to touch on, which has already been mentioned by a number of Members, is acquired brain injury and carbon monoxide poisoning. This is not something that I had thought of myself. It shows, again, how many areas of our lives and our environment affect people and can cause acquired brain injury. I am a member not only of the APPG on acquired brain injury but the APPG on carbon monoxide, and earlier this year we had a special roundtable meeting chaired by my hon. Friend the Member for Rhondda. One of the difficulties is recognising when people are suffering from carbon monoxide poisoning, especially the impact that that can have on the brain. The shortage of support is particularly difficult for people with an acquired brain injury caused by carbon monoxide poisoning, as they are less likely to receive specialist treatment if they experience low-level carbon monoxide exposure that results in more subtle neurological effects. To address this, the APPG on carbon monoxide recommends that NHS England develop a specialist clinic for people with long-term neurological effects caused by carbon monoxide exposure. This will help to plug the gap in care provision and enable future studies that will innovate treatment methods.

We must also remember that, as the Government said in their November 2018 health and social care policy paper, prevention is better than cure, and preventing carbon monoxide poisoning will also prevent some of these acquired brain injuries. The APPG recommends that the Government introduce preventive measures, including mandating carbon monoxide alarms in all tenures. I know that the Government are already looking at this in certain tenures, but it should be across all tenures. Carbon monoxide monitors should be provided for those in first-time pregnancy. We must tackle substandard housing that increases the risk of carbon monoxide exposure. We also recommend that Public Health England and the Foreign and Commonwealth Office do more to raise public awareness of carbon monoxide, to encourage risk-lowering behaviours at home and abroad. The special roundtable meeting that we had was very productive. We had a high number of medical people there who were recognising this problem that perhaps the rest of us had not recognised until now. We need some practical steps to improve that.

I have mentioned the Child Brain Injury Trust’s recommended actions, particularly on education. There is so much more that I could say, but much of it has already been said, so I will only mention a few things. We are seeing more people survive severe trauma, and we must give more effective support after they recover from their immediate injury, to help them develop their life.

[Jim Shannon (Strangford) (DUP)]

I thank the hon. Lady for giving way. I have personal experience of this through my brother, who unfortunately had a very severe accident, which left him brain-damaged. Owing to the determination of my parents and family, who took the time to care for and look after him, we were able to give him some sort of an independent life, which is very important. He is happy and safe with his carers, friends and family. Does the hon. Lady agree that more needs to be done to support the families of those with ABI, to give them hope that there can be more than Sunday visits to a designated place—there can be a home life as well—and there is a chance of a semblance of normal life for people with ABI? Intensive care packages are essential to rehabilitation, and funding must be available for them. It is so important to give people who have acquired brain injury a normal life, if at all possible.

[Liz Twist]

I thank the hon. Gentleman for his comments. I certainly agree that we must give more support to the carers and families of young people or adults with acquired brain injury, while allowing the person who is directly affected to have as full and good a life as they can.

I want to mention the “One Punch” campaign. We are becoming increasingly aware of the impact that one punch on a night out, perhaps after a lively evening, can have. It can be devastating, and I am glad to see campaigns around the country aiming to ensure people are aware of that. We have talked about how sports must keep up the level of support and awareness and, if in doubt, sit people out. That is really important. We have also heard about the huge impact on our prison community. We must develop a response to that, so that we can take account of acquired brain injury and how it affects people’s behaviour and development.

Headway has made some recommendations. It says:

“Brain injury can happen to anyone, at any time. Living with the effects of a brain injury creates challenges in almost every area of life.”

That is so true. Headway is calling on Members of Parliament to recognise and support the needs of service users, families and carers, including greater understanding of the complexity and hidden effects of brain injury; wider recognition of the symptoms of brain injury, to ensure rapid and accurate diagnosis; access to timely, specialist rehabilitation and support services; an end to lengthy waits for social service assessments for support funding; changes to disability benefit assessments, which currently fail a large number of brain injury survivors and their families—Headway has a campaign called “Right First Time”—and more effective data gathering across the NHS, to provide clearer evidence of the needs of survivors, around diagnosis, acute care, longer-term rehabilitation and support to regain independence. Acquired brain injury is life changing, and we must do everything we can to support people across all spheres of life.