Acquired Brain Injury

Julian Lewis Excerpts

Thursday 9th May 2019 Commons Chamber

[Sir John Hayes]

I will—very much so. I have been terribly unlucky, by the way, having suffered a severe head injury as a result of a road traffic accident and, like the hon. Member for Rhondda, contracted bacterial meningitis. We both speak with some authority on this subject.

The patterns that those families endure are similar, one to another. Initially, of course, there is shock—a sense of disbelief—and the question that most people pose in these circumstances: “Why me?” Then there is a gradual realisation of the depth and scale of the effects of acquired brain injury, and an unhappy initial concentration on what the person can no longer do, followed eventually by a reconcentration on what they can do. Most families follow that pattern when they suffer this kind of event, and that is why all that is done beyond the treatment of the initial trauma is so critically important.

Neuro-rehabilitation is vital because of the dynamic character of these conditions. Most people who acquire a brain injury will change. Many will recover fully and some will recover partly, but all that takes place over a long period and is particular to each case. There is an unpredictability about the effects of acquired brain injury; it can affect physical capacity of course, psychology and cerebral function, as well as personality. Families dealing with that must cope with those kinds of changes, which can be terribly frightening for the individuals concerned and those who love them. The point is that a difference can be made by the quality of care that they receive during that rather difficult journey.

[Dr Julian Lewis (New Forest East) (Con)]

May I add one more category to those listed by my right hon. Friend and the hon. Member for Rhondda (Chris Bryant)? I am talking about service personnel who were blown up in Iraq and Afghanistan, some of whom, although apparently uninjured as a result of the great advances in vehicle technology that enabled them to survive improvised explosive devices, are believed to have been misdiagnosed with post-traumatic stress injury, when in reality they are suffering from mild traumatic brain injury. I believe that only two scanners in the whole country are capable of identifying mild TBI. There is not yet an adequate programme to make sure that the condition is discovered before irreparable damage is done.

[Sir John Hayes]

I am grateful to my right hon. Friend for making that point. The hon. Member for Rhondda talked about the understanding that we need in the welfare system and the expertise that we need to acquire in dealing with the repercussions of a traumatic event. Often, misdiagnosis is part of that problem. Because of the characteristics of acquired brain injury that I described earlier—the changes in personality and the effect on cerebral function—misdiagnosis is all too easy. Part of our mission in bringing the all-party group’s report to the House’s attention, and doing so again in today’s debate, is to get all of Government, including the Ministry of Defence, working together to understand the breadth and scale of the problem. That kind of intergovernmental approach is essential to the recommendations of our report, and I shall say more about it in my concluding remarks.

Before I do that, I wish to say a little about the difference between the initial responses to acquired brain injury, whether acquired through a traumatic event such as a road traffic accident—indeed, many are acquired that way, which is why so many young men are affected—or through the kind of illness that the hon. Member for Rhondda spoke about, such as a brain tumour, meningitis or some other disease. By and large, the initial response is, as is so often the case in the NHS, routinely excellent. People are treated quickly and highly effectively. It is what happens afterwards that is more variable in its effectiveness.

When people leave hospital, invariably having been treated extremely well by our superb NHS, whether their subsequent treatment is effective is a matter of some uncertainty. It can be, and often is; indeed I pay tribute to the good work of Headway—I am a patron of Headway Cambridgeshire and have been for many years—and the other organisations that play a part in supporting families, spreading understanding and sharing good practice, but it is to some degree a lottery. It is partly about where someone lives and how effective the local agencies are; it is partly about how well Government Departments and local government work together and how meaningfully they address some of the challenges that are the inevitable consequences of these kinds of injuries. The all-party group’s report deals with them and the hon. Member for Rhondda highlighted some of them. There are educational effects and effects in the workplace and in socialisation; perhaps there is even the risk of criminality as a result of the consequences of a brain injury. It is the business of neuro-rehabilitation, which we emphasise so strongly in the report, that lies at the heart of what we believe the Government need to do to improve the outcomes for the people and families concerned.

When I was a Minister, which I was for a long time but not for long enough, many people in the House tell me—it is not for me to say, of course—I found that perhaps the greatest challenge Ministers face is in dealing with matters that cut across Departments. It has become almost routine to talk about Departments working in silos, but it is certainly true that the character of the vertical structure of the way we run Government and organise ministerial responsibilities makes it quite difficult for Departments to interact, or sometimes even to interface. On this subject, perhaps as much as on any subject that I know of, it is critical that Departments do just that. We speak in our report of the Departments concerned, and my right hon. Friend the Member for New Forest East (Dr Lewis) mentioned another, the Ministry of Defence. I urge the Government to continue to explore how we can take a cross-departmental approach. We have had strong support from the Cabinet Office, but I hope that the Minister will take that further forward.

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[Siobhain McDonagh (Mitcham and Morden) (Lab)]

I praise the remarkable work of the APPG on acquired brain injury for its dedication to this issue and for securing this particularly important debate. Research from Headway, the brain injury association, shows that every 90 seconds someone in the UK is admitted to hospital with an acquired brain injury-related diagnosis. That is approximately 350,000 people a year. If this debate lasts for an hour and a half, another 60 people will have been struck by brain injury while we are in the Chamber. The majority of those people will need at least some form of short-term support or long-term rehabilitation to help them rebuild their lives, re-learn lost skills and regain a degree of independence.

Excellent work is done in the charity sector to support people with acquired brain injury. I am sure that many colleagues across the House will want to join me in congratulating Headway on reaching its 40th anniversary this year. I am proud to say that the charity is based in my constituency and led by my friend and colleague, Peter McCabe, as chief executive. For four decades, it has been supporting brain injury survivors and their families and carers, to ensure that lives saved by significant advances in neurosurgery are lives worth living.

When a brain injury strikes, it is usually without warning. Put simply, it can happen to anyone, at any time. The support provided by Headway starts from the moment brain injury strikes and continues for as long as it is needed. With the introduction of major trauma centres, the chances are that a patient with a significant brain injury will be quickly transferred to a unit that is better equipped to provide specialist emergency care. That can be many miles from the family home. I am sure we can all agree that, if a loved one were involved in an accident or suddenly became seriously ill, we would want to be at their bedside, but for some people—particularly in low-income families—that can be a challenge if the patient is transferred to a unit many miles away.

That is why I would like to raise the importance of the Headway emergency fund, which provides grants to families to ensure that they can be by the bedside of a loved one in a coma. To date, the charity has distributed more than £369,294 to 1,783 families across the UK. In addition, families can receive emotional and practical support to help them to cope with the overwhelming situation and to make sense of what is happening. They can also rely on the charity’s nurse-led helpline, which has seen an increase in demand of 131% over the last 10 years.

Given that there will be many people watching the debate who are working on this issue, I would like to raise the Headway brain injury identity card, which is endorsed by numerous agencies in the criminal justice system, including the Police Federation and the National Police Chiefs’ Council. The House has previously discussed the high prevalence of brain injury among the offender population. This new initiative from Headway is helping the police to identify brain injury survivors at the earliest opportunity, to ensure that they receive appropriate support.

We should all be proud of our national health service, particularly when it comes to emergency and acute care, but a life worth saving has to be a life worth living. Many of my hon. Friends here today will be aware of the excellent work being done by Headway groups and branches in their constituencies. Whether through rehabilitative therapies to improve speech and language skills or facilitate a return to work or education, or social interaction to prevent isolation, the work being done in our local communities by these groups and branches can be a lifeline to families affected by brain injury, helping people to rebuild their lives and become less dependent on costly state support.

[Dr Julian Lewis (New Forest East) (Con)]

May I add briefly to that catalogue of virtues the fact that Headway has been reaching out to parliamentarians like ourselves? The reason I am here for this debate is that Jo Hillier of Southampton Headway got in touch with me and asked me to be here. That is why I am learning so much more about this condition than I would otherwise have had the possibility of knowing.

[Siobhain McDonagh]

That is my experience as well. Had Peter McCabe not called me, I might not be here, and I would know so much less about the volume of people who experience brain injury and the sort of problems they and their families and carers have.

We are very grateful for Headway’s intervention. However, Headway cannot do this alone. Local charities are under incredible pressure. Funding cuts are causing harm to the lives of some of society’s most vulnerable people, who are being cut out of society due to a lack of access to vital support services. For many people, Headway provides a route back to independent living, further education or employment. The reality is that, aside from Headway, most people—particularly those who cannot afford private healthcare—will receive insufficient support or rehabilitation after leaving hospital. Unless action is taken to enable people to access the vital support needed to ensure that these services survive, more and more people will be cut out of society and taxpayers will be left footing the bill for the longer-term care of those without the means to care for themselves. Considering that another four people will have been struck by brain injury during my speech, there simply is no time to delay.

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[Seema Kennedy]

My right hon. Friend makes an extremely important point, showing that this is an issue not only for the health system and my Department but for others across Government.

While the majority of rehabilitation care is locally provided, NHS England commissions specialised services for patients with the most complex levels of need. For people who have ABI, neuro-rehabilitation that is timely and appropriate is an important part of their care. Access to high-quality rehabilitation improves outcomes for patients and can save money. The shadow Minister mentioned rehabilitation prescriptions. RPs reflect the assessment of the physical, functional, vocational, educational, cognitive, psychological and social rehabilitation needs of a patient and are an important element of rehabilitation care. The APPG report was clear that all patients with ABI should benefit from an RP.

NHS England’s major trauma service, where acute phase rehabilitation begins, sets out that patients should be reviewed by a rehabilitation consultant. The shadow Minister asked about this. The development of major trauma centres, which the hon. Member for Rhondda supported, has improved recruitment to this specialty, while the national clinical audit of specialist rehabilitation recommended that all trauma networks review access to rehabilitation consultants and make improvements. Patients should have either a rehabilitation consultant or an alternative clinician with skills and competencies in rehabilitation to provide an initial formulation and plan to complete and perform the initial RP. At discharge, all patients should have a patient-held record of their clinical information and treatment plan from admission as they move to specialised or local rehab.

The “National Clinical Audit of Specialist Rehabilitation for Adults Patients with Complex Needs Following Major Injury”, published in 2016, found that on average 81% of patients had a record of a rehabilitation prescription. The audit recommended that MTCs take action to improve compliance. The audit report appears to have had a significant impact. The latest data, from the last quarter of 2018, from the trauma and audit research network shows that the national average rose to a 95% completion rate for RPs. This is good news. NHS England has worked with patients, clinicians and charities to improve the RP design and set new standards for communication and involvement of patients, families and carers. It is hoped that the new RP will support the development of a rehabilitation dashboard to monitor the performance of the system. Audits play an important role in helping services to improve. The report also recommended that all organisations within a trauma network work together to review capacity.

The majority of rehabilitation care is commissioned and managed locally. To support commissioners to plan services for local populations, NHS England has produced a document, “Principles and Expectations for Good Adult Rehabilitation”, that describes what good rehabilitation looks like. Additional guidance covering adults and children sets out a commissioning model and the evidence base for delivering high-quality rehabilitation services.

The hon. Member for Rhondda mentioned that ABI spans many Departments, and I shall take away all the comments that concern my ministerial colleagues and will ask them to respond. On support for children with ABI in school, the special educational needs and disabilities system is designed to support all children and young people with additional needs. The arrangements for SEND are intended to support joint working between health, social care and education; multi-professional assessment of a child or young person’s needs involving relevant experts; and the development of an individual education, health and care plan to meet those needs. This should provide a basis for the sharing of information and expertise to ensure the needs of children and young people with ABI are supported in school.

The hon. Member for Blaydon mentioned the ABI card. The Department for Education has said that promotion of the card is a matter for individual schools, but as far as my Department is concerned, Professor Chris Moran, a national trauma director, said that he would be happy to promote the card in trauma networks, working with the Brain Injury Trust. The statutory guidance on supporting children with medical conditions at school covers a range of areas, including the preparation and implementation of school policies for supporting pupils, the use of individual healthcare plans, consulting with parents, collaborative working with healthcare professionals and staff training. The Department for Education continues to work with organisations such as the Health Conditions in Schools Alliance to help to raise further awareness of the duty on schools.

On prisons, there is an increasing body of evidence linking ABI to offending behaviour. NHS England’s liaison and diversion service has collaborated with Headway to develop workshops to improve awareness and identification of ABI in vulnerable offenders and the support available. The “train the trainer” workshops were designed so that attendees could return to their services and cascade workshop learning to their colleagues. Representatives of all NHS England-commissioned liaison and diversion services attended. Over the past two years, the Ministry of Justice has also piloted approaches to improve screening and support for prisoners through new link worker roles at six sites on the male secure estate. I take the point about female offenders and will speak to the relevant Minister. There was a pilot at a female prison between 2016 and 2018, but I will take away the point about the female estate.

I want briefly to touch on the point raised by my right hon. Friend the Member for New Forest East (Dr Lewis), the Chair of the Defence Select Committee. The veterans trauma network delivers comprehensive medical care to veterans, including those suffering from brain tumours, and, as he knows, the Prime Minister opened the successor Defence centre to Headley Court last year. We do not recognise his statistic that there are only two machines, but I will take that away and report back to him.

[Dr Julian Lewis]

I was not talking about tumours; I was talking about traumatic injury caused in explosions. My understanding is that only Nottingham and Aston Universities have the special types of scanners that can detect that particular injury. Will the Minister check that point and consider a screening programme for such people?

[Seema Kennedy]

I will happily take away that challenge from my right hon. Friend and will write to him.

The hon. Member for Rhondda spoke passionately about sport, although he claims not to be a sportsman. It is important that we do more to reduce the risk of ABI in sport. The Department for Digital, Culture, Media and Sport asked Baroness Grey-Thompson to carry out an independent review of the duty of care that sport owes to its participants; her report dedicated a chapter to safety, injury and medical issues. National governing bodies are responsible for the regulation of their sport and for ensuring that appropriate measures are in place to protect participants from harm. The DDCMS expects everyone in the sports sector to think carefully about the recommendations in Baroness Grey-Thompson’s report and in the all-party group’s report. Progress has been made over the years, for example through the Rugby Football Union’s Headcase campaign and action by other groups.

It is important that the welfare system appropriately supports people with ABI. Work capability assessments for the employment and support allowance are conducted by healthcare professionals for the Centre for Health and Disability Assessments. Case discussions about claimants with ABI form part of new entrant training for all healthcare professionals who undertake such assessments. They should all have access to a self-directed learning module on ABI, which was updated in 2018 and quality-assured by Headway.

Since September 2017, those who are placed in the ESA support group and the universal credit equivalent, who have the most severe and lifelong health conditions or disabilities and are unlikely ever to be able to move into work, will no longer be reassessed. Changes have been introduced so that existing claimants with the most severe lifetime disabilities whose functional ability has remained the same are more likely to have their evidence reviewed by a Department for Work and Pensions decision maker, and not need a face-to-face assessment with a healthcare professional.

I hope that this debate demonstrates how seriously the Government take the issue and the devastating impact that it can have on people’s lives. We are committed to ensuring that people are better protected. I look forward to responding to further debates.