Acquired Brain Injury

Debate between Jamie Stone and Chris Bryant

Tuesday 2nd July 2019 Westminster Hall

[Chris Bryant]

Yes. The all-party parliamentary group on acquired brain injury—I see that two of the vice-chairs are in the Chamber—has been campaigning to ensure that everyone who does any kind of assessment for the Department for Work and Pensions, whether for personal independence payments, the employment and support allowance, or any other benefit, has a full training in acquired brain injury, so that they understand the variable nature of the condition.

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.

[Jamie Stone (Caithness, Sutherland and Easter Ross) (LD)]

On that point about sharing, as I told the Chamber in the debate on 9 May, my wife suffered from a meningioma. As I think the hon. Gentleman mentioned, a certain fretfulness can come into the character. On sharing, perhaps it is because I live in such a remote area, but I am surprised those who have come through the treatment are not encouraged more to share their pre-operative and post-operative experience with people who are suffering or are about to have a medical intervention, because it would give them great courage and help.

[Chris Bryant]

Yes, that is true. Because of the pattern of brain injuries across the country, it may be difficult for people to gather with people of a similar age and background. Lots of people with brain injuries arising from road traffic accidents are quite young—in their teens or early 20s. Sometimes they get put into support groups with people in their 60s or 70s. That is not an impossible combination, but sometimes it is not the most natural grouping for those with a much longer life expectancy.

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.

Acquired Brain Injury

Debate between Jamie Stone and Chris Bryant

Thursday 9th May 2019 Commons Chamber

[Chris Bryant]

That is one of the key points that everyone on the all-party group wanted to make. It is all very well saving someone’s life but, because we have seen so many miracles done by good neuro-rehabilitation in the community, we need to make sure it is available where people live. Otherwise we are condemning people to a half-life existence when we could restore real quality of life—they might go back to work and be fully independent.

The hon. Gentleman is absolutely right to say it is a matter of getting social care to work with NHS and getting all the different organisations to work as a whole. That is why we hope that the Government—there are signs of this, but we would like to see more signs—will not work in silos of departmental and organisational thinking. We have to think across the whole, because this affects nearly every Government Department.

Many patients lose their executive functions, so they find it next to impossible to plan, make decisions, monitor what they are doing or control their emotions—that can make it difficult even to cook for themselves. In particular, a brain injury to the frontal lobes during the teenage years, when that part of the brain is still developing, can turn a charming, ambitious and able young person into an out-of-control youngster. All too often, if the brain injury is missed or misunderstood, they get into trouble, they are excluded from school and they fall into the criminal justice system. I read Edward Timpson’s report this week. It is an important piece of work, but it is a shame that it does not mention brain injury at any point. I will be writing to him about that to see whether it is another element that we need to address if we are to stop exclusions, which are currently so prevalent.

Even a minor brain injury can lead to headaches, dizziness, fatigue, depression, irritability and memory problems. Sometimes the effects last long after the injury, and sometimes they do not even appear until some time after the injury, which makes them particularly difficult to spot.

Partners and family members have a tough time, too. The hon. Member for Ochil and South Perthshire (Luke Graham) will know from his own family how complicated it is to make sure that people get the support they need. Loved ones have the terrible fear of the unknown. What is going on inside their loved one’s head? Will the anger and frustration they seem to be suffering get stronger, or will it ease off? How much will they be able to recover their former abilities and personality? And how hard will they have to struggle to get the support they need?

In too many instances, families and patients are being pushed from pillar to post when it comes to benefits. Listen to what happened to Jordan Bell, who had a motorcycle accident some six years ago, when he was 17. The accident left him in a coma for six weeks and in rehabilitation for six months before he went home. He had to learn to walk, talk, eat and socialise all over again. I am glad to say that he has made a remarkable recovery and is now a father, but he lives with significant, serious and completely unseeable impairments.

Jordan’s father describes dealing with the welfare system as

“the most demoralising and depressing experience for us all.”

This is a professional family. The initial application for personal independence payment took six months, with interventions from the family’s MP. David Bell writes:

“A year or so after our son’s condition had improved we contacted the relevant department to advise them that he was in our judgement no longer entitled to some elements of the PIP. We were ‘quietly’ advised not to inform them of the changes at all, but as we are honest people we felt duty bound to inform them of our son’s improvement. The advice given to us was correct; instead of adjusting the PIP in what would have been a sensible way the PIP was cut entirely. This then set in motion another six months of huge effort and stress and again the involvement of our MP to get the PIP reinstated. We eventually succeeded. But two years later it was reduced again to nothing.”

I cannot emphasise enough the stress this process puts on people with ABI.

One woman told me:

“I know I should use all my energy to try and get my brain back together. But I end up spending all my energy on forms”—

filling in forms and fighting bureaucracy. An unresponsive, intransigent welfare system is effectively preventing people from healing. I beg Ministers to take this issue seriously and to make sure that all PIP advisers are trained in the fluctuating and unseeable nature of brain injury. After all, one common feature is that patients become over-keen to please people. Often, they will tell the assessor everything they think the assessor wants to hear, because that is part of the condition.

[Jamie Stone (Caithness, Sutherland and Easter Ross) (LD)]

Notwithstanding what I will say later, in casework I find that a surprisingly high number of disability living allowance claimants are having the mobility element carved away as they move to PIP, perhaps because, as the hon. Gentleman says, they have exaggerated their ability to get from A to B or to move into work.

[Chris Bryant]

That specific point has not been raised with me in relation to brain injury because it is one of the seeable bits. It is the unseeable bits that are particularly difficult for PIP assessors and other assessors to get right, which is why it is important that they all have proper experience and training in assessing brain injury.

I do not want to take too much time because I know that many others want to speak, but I will refer to a few more elements, the first of which is the prisons system. All the latest research shows that a very high percentage of inmates, both male and female, have had a brain injury. One survey shows that 47% of inmates at Leeds Prison have had an ABI, and Huw Williams’s work shows that more than 60% of prisoners at Exeter Prison have had a traumatic brain injury. In both surveys, the majority of injuries occurred before the prisoner’s first offence, suggesting that the brain injury may be a key factor in why they offended in the first place. If we really want to tackle their reoffending, we will have to deal with their brain injury, too.

Research at HMP Send and HMP Drake Hall also finds that the most common way for women inmates to acquire brain injuries is through domestic violence— 45% of injuries. Again, we may be criminalising people who are actually victims. We need to get this right. If we really want to tackle reoffending, we must do a better job of recognising and treating brain injury. That means screening all new prisoners, training prison staff, providing proper neuro-rehabilitation for all prisoners with a brain injury and making special provision for women that recognises the likely different causes of their injury—particularly domestic violence.

I will not say much about education, because I know other hon. Members will. The Government have been good in responding to our report in detail, but the section of their response with which I am most dissatisfied is on education. There is a hidden problem across our schools estate, and we will store up problems for the future if we do not take this issue seriously. In particular, I urge the Government to reconsider our recommendation that acquired brain injury should be included in the special educational needs and disability code of practice.

The final area is sport. I make it clear that sport is good for people’s health, and I do not want to prevent anyone from taking part in sport. I do not want all our sportspeople and youngsters to be mollycoddled and wrapped in cotton wool, but the record on sports concussion is shockingly bad, particularly in football. I am no football expert.