Acquired Brain Injury

Jamie Stone Excerpts

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.

--- Later in debate ---

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

I thank the hon. Member for Rhondda (Chris Bryant) for bringing forward this debate and I compliment all the speakers on their contributions. It would be churlish of me not to say a word of congratulation to the Minister on her appointment. It is a delight to see her in her place. I am going to give the House something of a personal account, which I will try to keep fairly brief. I hope that I can draw from that personal account a number of conclusions and suggestions.

Yesterday and today, several Members have remarked on the fact that this is the 20th anniversary of the foundation of the Scottish Parliament. In early 1999, I was canvassing in north-west Sutherland. I always start canvassing early, but don’t tell the SNP. I pulled up at a phone box at Inchnadamph—this was back in the days when we had phone boxes even in remote parts of the highlands—I tried to ring home and there was no reply. So I carried on. When I got home at 5 or 6 o’clock that night, I discovered that my wife was in hospital—at Raigmore Hospital in Inverness.

My wife had been due to drive to Inverness to get the messages, as we say in the highlands, but found—as it turned out, very luckily—that the car had a flat tyre, so she caught the bus to Inverness. Having got her shopping, she was at the bus stop waiting to come home again when she took a massive epileptic fit. She woke up in Raigmore Hospital. Very shortly afterwards, when the staff took an X-ray of her head, they discovered that she had an extremely large meningioma, which is a form of tumour. Luckily, it is a benign tumour, but they reach some size. Within weeks, she had an operation to remove the meningioma. Unfortunately, in the recovery ward shortly after her operation, she took a further brain haemorrhage and had to go straight back into surgery. She was then in intensive care, but she did survive. I want to say that, for my family, for me and for my dear wife, it was an incredibly difficult time. How my eldest daughter, who was then aged 17, got through her studying for her highers, I will never know. I always think that my three children were in fact braver than I was; I put that on the record.

I want to say something else for the sake of the record. Reference has been made to the NHS and just how good it is. The then consultant neurosurgeon at Aberdeen Royal Infirmary, where my wife was operated on, was Mr David Currie. He and his team, as well as the nursing staff, were absolutely astonishing. I owe them and my wife owes them absolutely everything. They may think it was churlish for me to carry on canvassing to be an MSP but, when my wife could speak, which was not for a few weeks, I said, “Look, it’s only March and the election isn’t until May, I think I’ll pull out”, and she said, “Don’t.” She said it very quietly—she could only speak very softly. She said, “You must carry on. I think you might win.” And so I did. So there is a happy end to the story.

My wife is left somewhat disabled—she has a weak left leg and she has lost the use of her left arm—but, as we always say in my family, she is alive. She remains better than I am at the crossword. I cannot tell hon. Members how annoying that is, but that is just the way it is. She suffers from mild anxiety about things; much comment has been made about the side effects of this sort of surgery. However, I am intensely grateful to the NHS.

There are one or two conclusions that I would draw in this short contribution. The first is that we could see that Mr David Currie, the consultant neurosurgeon, and his staff—I admit this was 20 years ago—were stretched. Mr Currie always said to my wife for some years afterwards, “You see these white hairs. I got these operating on you for the second time.” But they were pushed. They were working extremely hard, but we could see they were pushed.

Secondly, as I have said already, we could see the sheer importance of the NHS and what a great British institution that is. I think, rightly, all parties in this place cherish and nurture it. I have to say, as an aside, that when I hear some of the comments coming across the Atlantic from the United States about how they do not want anything like the NHS, I think that they are just plain dotty. It is something of which we are very proud.

A third point arises from this experience, which was difficult. I admit that it was 20 years ago but, when my wife came out of hospital and came home, there was the business about what occupational therapy and physio help she could get, what was the social work package and how that was going to be handled. I think things have improved since then—I give credit to the Scottish Government for that—but how this is put together is very traumatic for the patient and for the patient’s loved ones. I was 44 and my wife was 42, and we had a family in their teens. An event such as this is a crisis and a change that you can hardly understand at the time. But, as I say, life goes on and we are where we are.

I have a habit of talking about disability issues because of my wife. One of the reasons why I volunteered—I was probably completely insane—to go on the small Committee charged with building the Scottish Parliament was that I could see that the old temporary Parliament at the top of the Mound in Edinburgh was utterly unsuitable for disabled people. Because of my wife’s experience, I got involved in what was known as the Holyrood project. It damn nearly lost me my seat at my second Scottish election because it was a very controversial issue, as I am sure the hon. Member for Ayr, Carrick and Cumnock (Bill Grant) will recall.

I have mentioned several times in this place the issue of getting disabled people back into work. At a time, whatever happens with Brexit, when we must play to all our strengths—we must play every card we hold—we have a lot of people who have been ill or are partially disabled who have great abilities that they could contribute to the functioning of the United Kingdom and to forging a new and better future for the United Kingdom. It remains a challenge for Governments of all colours to harness those people. If nothing else, it makes them feel that they are contributing to the country and it makes them feel useful and that they are important. Self-esteem and the esteem of your peers is incredibly important to happiness and to quality of life.

I want to take up the point, which I think was made by the hon. Member for Rhondda, that notwithstanding the desirability of local delivery of services, there is something to be said for amalgamation when it comes to something as crucial as neurosurgery. At the time of my wife’s treatment, there were four neurosurgical units in Scotland and Mr David Currie was the sole consultant neurosurgeon at Aberdeen Royal Infirmary. Had the four units been put together as one, there would have been better peer working and peer support. I think the hon. Gentleman made the point that, when it is something as traumatic as neurosurgery, people do not mind travelling. From the northern highlands, it did not really matter to me whether it was Aberdeen, Edinburgh or Glasgow—I just wanted my loved one to get the best possible treatment. I know it is always the case that we will get a local campaign saying, “No, no, no—not this”, but I think we can draw a line on some services, where centralisation for the maximisation of making people better is important. We should not lose sight of that.

A meningioma is a tumour that can kill you. It is a meningioma whether people live in Scotland, England or Wales—anywhere at all. I therefore appeal both to the Scottish Government and the UK Government for maximum co-ordination across borders on health delivery, the health service and making people better. I would hate to think that a line drawn by people on a map would in any way get in the way of that because this is about saving lives and making people better, which is surely one of the most important things.

I am going to end, as is my wont in this place, with a very short anecdote. I was lucky in May 1999. I would not say if they are sad enough, but if Members have a dull moment they can look at this week’s edition of Holyrood magazine and remark how young I looked then; I have aged terribly badly since then. I did win my seat. The Times decided to do a vox pop of my new constituents only a few days after I was elected. It asked one lady from the village of Kildary in Easter Ross, “How do you feel about Jamie Stone being elected to be an MSP for this constituency?” She replied, famously, “Well, at least it keeps him off the street.” When I read that to my wife in her hospital bed, she roared with laughter and I knew then that she was better.