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The Big Debate: acquired brain injury

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Debate chair Steve Brine, parliamentary under-secretary of state for health and social care, began the debate by putting ABI into context.

“While prevalence estimates for ABI are quite hard to make, the number living with it is thought
 to be over 500,000 and could be
as high as one million people. The total cost of brain injury in the UK has been estimated by our officials to be at least £1bn per year.

“ABI can have a devastating impact on our constituents’ lives; even minor head injuries can cause short-term impairment. Those surviving more severe injuries are likely to have complex long-term problems affecting their cognitive and functional ability, personality, close relationships and ability to return to any form of independent life.”               

Caroline Lucas (Brighton, Pavilion, Green) underlined the lack of funding for support for relatives and carers.
“It can be incredibly stressful for the person themselves and for family members if people do not know how best to provide care. Funding can make a huge difference.”

Alex Chalk (Cheltenham, Con) introduced the issue of brain injury and the increased propensity to commit criminal offences.

“We are starting to wake up to the fact that a number of people in custody have sustained precisely that injury. That should be a focus for preventive work in future.”

Jim Shannon (Strangford, DUP) provided a case study example of brain injury – his brother who suffered a motorbike accident.

“It took him from being a person with his own business and social connections to being someone who could not co-ordinate more than one thing at a time… We need not only help for the person in an institution;
 they need to be taken home and given a semblance of order in their lives and what quality of life is possible. Does the minister [debate chair Steve Brine], accept that families need help to take on that job for someone whom they love and want to help?”

Steve Brine said the all-party parliamentary group (APPG) on ABI would consider the wider family in its current review of brain injury issues. He also highlighted other areas where ABI’s impact is felt and action is under way.

“On education, many children and young people with ABI are rightly in education and have special educational needs as a result
 of their injuries. The government recently provided £29m to support local authorities with ongoing implementation of individual education, health and care plans to meet those needs. It is vital to us that health, social care and education services work jointly in developing these care plans.

“On offending behaviour there is an increasing body of evidence suggesting that children and young people who survive traumatic brain injury are more likely to develop behavioural problems that can be linked to an increased vulnerability to offend… The Ministry of Justice is piloting approaches to improve screening and support for prisoners with ABI to prevent a cycle of re-offending once they enter the secure estate.
”

On head injuries in sport, he said:
 “The government commissioned an independent review of the duty of care that sport has to its participants, which published its findings in April 2017, and we are now working to implement its recommendations, including around awareness and prevention of head injury while playing sport.

“On trauma centres, it is vital that those
 with the most serious brain injuries receive the best care that our NHS can offer. In
 2012, 22 regional trauma networks were developed across England. Within those networks, major trauma centres provide specialised care for patients with multiple, complex and serious major trauma injuries, including brain injury. Two years after their introduction, an independent audit of the network, commissioned by NHS England, showed patients had a 30 per cent improved chance of surviving severe injuries and that the networks had saved 600 lives.

“A vital part of the treatment pathway for people who have suffered ABI is neurorehabilitation that is timely and appropriate to their needs. There is good evidence that access to high quality rehabilitation both improves outcomes for patients and can save money.”

Nic Dakin (Scunthorpe, Lab): “The neurorehabilitation centre in Goole is an excellent example of such practice. It serves north Lincolnshire and the wider area. I commend that service, and others like it.”

Steve Brine explained how the NHS is stepping up its approach to rehab: “The World Health Organisation states that rehabilitation intervention should be aimed at achieving the following five broad objectives: preventing the loss of function; slowing the rate of
loss of function; improving or restoring function; compensating for lost function; and maintaining current function.

“NHS England’s Improving Rehabilitation programme applies these principles, rightly, in a holistic way
 to encompass both mental and physical health. In 2015, the programme published the principles and expectations for good adult rehabilitation to support commissioners in delivering rehabilitation care locally in our constituencies.

“This document describes what good rehabilitation looks like and offers a national consensus on the services that we think people should expect.”

Eddie Hughes (Walsall North, Con): “It
is important that we consider that it is not just trauma with regard to ABI. One of the other causes might be excessive exposure to carbon monoxide, so I was grateful for the support [brain injury charity] Headway gave to my private Member’s Bill, which seeks to introduce mandatory carbon monoxide detectors in new-build and social
 rented houses.”

Steve Brine: “Obviously, there are non-traumatic injuries, those through conditions such as meningitis and stroke, for example, but he is absolutely right to point out that issue.”

Brine then set out the current picture of how brain injury care is delivered.

“The rehabilitation programme includes
10 principles and expectations that were designed by people who use rehabilitation services — the carers, healthcare professionals, commissioners, strategic clinical networks and national clinical directors.

“Building on this, in 2016, NHS England published further rehabilitation guidance covering both adults and children. This provides local service planners with 
a commissioning model, a range of case studies and crucially, an evidence base for the economic benefits of delivering high-quality rehabilitation services.

“While the vast majority of rehabilitation care is locally provided, NHS England commissions specialised rehab services for those patients with the most complex levels of need.

“Teams within trauma units assess and develop a rehabilitation prescription for patients with ABI. Through this, patients can access specialists in rehabilitation medicine, whose expert assessment helps to inform the prescription. The teams manage ongoing patient care, including a key worker to support patients through the pathway and into rehabilitation at a level appropriate to their clinical need, in accordance with their clinician’s advice — be that highly specialised rehabilitation or through a local provider in the local network.”

Brine also explained various brain injury-relevant investments being made by government, including the £1bn a year going into health research through the National Institute for Health Research (NIHR).

The NIHR is funding ABI research from basic science to translational research in civilians, military and sport. For example, it is investing over £100m, over five years up to 2022, in a biomedical research centre in Cambridge that is developing new approaches to reduce the impact on patients’ health and wellbeing of neurological disorders, stroke and 
brain injury.

Other investments highlighted include
 the £5m which is co-funding a surgical reconstruction and microbiology centre in partnership with the Ministry of Defence, that has been ongoing since 2011.

Also, the £16m that has been spent on brain injury research since 2014 through the NIHR’s health technology assessment programme.
 A further £2m over three years is being spent through NIHR’s global health research group on neurotrauma.

Brine continued: “The evidence shows that neglecting rehabilitation is a false economy. Rehabilitation equips people to live their lives, fulfil their potential and optimise their contribution to their family, their community and society as a whole.”

Sharon Hodgson (Washington and Sunderland West, Lab): “Despite the fact that so many people are living with ABI, it is little understood… A brain injury can happen in an instant, but its effects can be devastating and last a lifetime.

“Thankfully, due to excellent advances in emergency and acute medicine, more and more children, young people and adults now survive and live with an ABI, but this brings its own challenges. As evermore people survive an ABI, further pressure is put on the vital services that people require.

“Many individuals with an ABI require early and continued access to neuro-rehabilitation to optimise their recovery. The United Kingdom ABI Forum [UKABIF] says that the average cost of initial rehabilitation programmes is offset by savings in the cost
of ongoing care within just 16 months and that this leads to an average saving over a lifetime in care costs of £1,475,760. That is a huge amount of money.

“Neuro-rehabilitation is therefore one of the most cost-effective services the NHS provides and one of the few services in medicine that results in long-term decreased costs to the economy.

“However, as is the case for many health conditions, the number of available beds across the UK is inadequate, service provision is variable and consequently long-term outcomes for brain injury survivors are compromised… UKABIF recommends a review of neuro-rehabilitation to ensure that service provision is adequate and consistent throughout the UK.”

Hodgson also questioned what measures were being taken to ensure children with an ABI receive the support needed throughout their education journey. She also called 
for more ABI awareness-building beyond education professionals, in wider society.

She pointed to the case of Grace Currie, the brain injured adult who was escorted out of a pub because she was believed to have
been “too drunk”, despite having only had one drink.

“Sadly, such encounters are not rare, and the level of misunderstanding of brain injuries
is high among the general public, including assessors for employment and support allowance and personal independence payments. Living with a brain injury is difficult enough for people without their having to struggle to explain and prove their disability to anyone who lacks understanding of the condition.”

She also praised the local community work of Headway, and specifically its Wearside branch, which works with around 4,000 patients.

Jamie Stone (Caithness, Sutherland and Easter Ross, LD) questioned how support for families caught up in the storm of brain injury could be increased. Drawing on his own family’s experience of ABI, he said: “My children got through it, but it was touch and go, and I remember these events without much happiness.”

Sharon Hodgson: “Unfortunately, not every patient with an ABI will have access to a service like Headway Wearside. If the minister is to take away one thing from this debate, I urge him to recognise the need for services [like this].”

John Hayes (South Holland and
 The Deepings, Con): “The immediate, traumatic effect [is] invariably dealt with efficiently and effectively by the NHS… But the ongoing issues associated with ABI 
are met with various kinds of responses. Sometimes the follow-up care is good, strong and effective, but that is not always the case because of the need to continue to respond to what are o en rapidly changing circumstances. People’s speed of recovery can vary, as can the effect of their injury
on their life, their competence and 
their skills.”

Hayes set out his key priorities:
• Co-ordination; ensuring all agencies, including charitable, government and local government, work together
• Perpetuation; understanding that the condition might require long-lasting care and treatment
• Accentuation; driving the issue up the agenda of public policymakers
• Concentration; pooling resources and targeting them for the greatest effect
•Accumulation; building on the experience of charities and groups.
He said: “We need to work on educators and employers to enable them to understand that the pathways that people follow need to be attuned to their complex and changing needs.”

Lisa Cameron (East Kilbride, Strathaven and Lesmahagow, SNP) whose husband had a brain injury several years ago
in the army, and who formally worked with brain injured patients as an NHS psychologist, said:
 “This is often a hidden disability. I would describe it as invisible much of the time and that contributes to much of the discrimination. It can have a major impact on people’s cognition, their personality, particularly if it is a frontal lobe injury, and their planning ability. It can have an impact on an individual’s speech.

“Some have to relearn vocabulary and the names of people they once knew. In severe cases, it can have a significant impact on someone’s memory. Consequent to all that is the impact on people’s mental health and their confidence.”

She highlighted difficulties in relation to welfare bene t assessments, particularly for employment and support allowance and personal independence payments (PIPs).

“Those with an ABI often feel that their difficulties are not understood and not well assessed under the current procedures, so we need not only further training for assessors, but possibly to review the assessment process itself.

“Assessment sometimes does not pick up the fine changes that can have such a crucial impact on the daily living skills of people with an ABI.
 Support will be necessary because it can 
be difficult for those with such injuries to complete forms, gather adequate evidence and so on.”

Jamie Stone: “Do [you] agree that there is some evidence that the mobility aspect of PIPs is not being recognised in this regard?”

Lisa Cameron: “Yes, that is a fair point. Mobility is about not just how far someone can walk, but being able to plan a journey and many other aspects of day-to-day living skills that people can find so difficult.

“People may require support for such things. But that may not currently be picked up properly by an assessment.
“Access to neuropsychology means that individuals can have memory and cognitive assessments at the time of injury and six and 12 months later to examine which functions have been recovered.

“That is important because different parts
 of the brain can take on functions that have been lost and because the individual’s pattern of recovery can be mapped, meaning that a rehabilitation plan can be specifically adapted to their needs.
 Access to neuropsychology is a key part of rehabilitation.”

On brain injuries in prisons, she suggested that offender treatments like cognitive behavioural therapy should be adapted to allow prisoners with head injuries to benefit.

“I am unsure whether that is occurring in our prison system, but it should happen right across the UK if cognisance is taken of such difficulties,” she said.

John Hayes: “The change in a person’s cognitive function, which is often perceived as a change in their ability to do things, is often also about them knowing how to do things, what to do, when to do it and why. That is different from losing a skill. It is about losing the ability to order things and to prioritise them, and that has a dramatic effect both on education and on their subsequent ability to work.”

Lisa Cameron: “Individuals with a frontal
 lobe injury find planning
 extremely difficult and, in
 fact, may never again be able
 to plan in the way they once could. These are some of the issues that treatment would have to take on board, and perhaps further support will be required.

“The types of cognitive behavioural treatment that rely on people thinking things through in a sequence, which is particularly di cult for those with a brain injury, will not always be appropriate and may need to be adapted.”

Bill Grant (Ayr, Carrick and Cumnock, Con) then called on the government to ensure that those assessing claimants on behalf
of the Department of Work and Pension (DWP) understand that, given the nature of their injury, the sufferer may lack personal awareness and may be under misconceptions as to their own capabilities.

He added: “The sufferer may believe they will return to normality, for when they look in the mirror they still see their former self.

“To the onlooker, the sufferer may not present with overt symptoms, and often their life challenges are covert in nature… Appropriate questioning on forms and at assessments and hearings is crucial.

“For cases where the maximum recovery point has been reached, according to medical opinion, will the government consider making long-term awards?
 Completing application forms is challenging for persons who lack concentration skills and who fatigue easily.

“Secondly, I call on the government to ensure that the NHS is able to offer the crucial multi-disciplinary support from an NHS team that is required in many of these cases, to provide ongoing rehabilitation and to recognise that
a person’s treatment plan may need to be bespoke as, with ABIs, it is not a case of one size fits all.

“The symptoms and challenges faced by a sufferer have changing dynamics throughout their life. Professor Diane Playford, president of the British Society
 of Rehabilitation Medicine, has stated that there are not enough specialist rehabilitation facilities for those with brain injuries.

“Thirdly, we should recognise the dedication of family members who do not necessarily see themselves as carers but who undoubtedly, through their own personal efforts, lighten the burden on our social care services and
 the NHS.

“This dedication on their part can lead to their own social isolation because brain injuries tend to have cognitive, physical, behavioural and emotional consequences that have
an impact not just directly on the sufferer, but indirectly on the carer or the family members.”

He also suggested reaching out
 to employers to encourage them to engage with the government’s Disability Confident Scheme, retaining and retraining brain injured employees where appropriate.

Chris Bryant (Rhondda, Lab) who chairs the brain injury APPG, said: “All too often 
ABI feels like an invisible epidemic to the individual concerned, because they might not ever have known they had a brain injury in the first place.

“Some of the most distressing work that I have seen has been done by people working in prisons. I was in Cardiff prison a couple of weeks ago to see the work being done there with prisoners… The work Huw Williams [a neuropsychology expert and professor] has done at HMP Leeds showed that when we screened every prisoner arriving through the door we found that 47 per cent of prisoners had an ABI, that 76 per cent of those had several and that 30 per cent of those had more than five brain injuries.

“This is often invisible in the case of children, too. The latest figures I have seen show that five children in every primary school class in this country will have an ABI… The figure for poorer constituencies, and for poorer families and areas, will be considerably higher.

“The research is a bit difficult to be precise about, but a study in Exeter showed that it was 4.3 times higher in poorer areas, and another survey elsewhere found it was three times higher in poorer families. So, for me, as a socialist, this is still a matter of social justice as much as anything else.”

John Hayes: “As a non-socialist and member of the party of Wilberforce, Shaftesbury and Disraeli, I believe in social justice, too. The key thing that [has been] said is that we have to get teachers to be more aware of this. If one thing comes out of this debate, it should be exactly that. We need to co-ordinate across departments to get teachers to recognise and know this.”

Chris Bryant: “I completely agree, not least because of one thing that sometimes happens to teenagers. Part of their brains will be quite well developed – the reward bit, the one that knows how to seek out pleasure – but the area of the brain most likely to be hit if they have a brain injury is the bit that is not yet well developed, which is the executive function.

“It is this bit that gives that youngster the ability to say ‘no’ to things or to control their emotions and their functions. All too often, if that bit goes wrong, they can start 
to present in school as somebody who is a problem. They may then get excluded from the school, because it is not understood that this is actually about a brain injury.
”Perhaps the student themselves does not understand that.

“They may then start offending and we may find several years later that they have
 a whole career of offending and that if we
had managed to do the rehab properly right at the beginning, when the first brain injury happened, we might have been able to save that individual their self-respect and self-esteem, and we might have been able to save society the costs of all the criminality.”

Moving onto head injuries in sport, Bryant continued: “Rugby has tried to clean up its act in recent years, but in so many sports, even all these years after footballer Jeff Astle’s brain injury, which was determined to have been an industrial injury brought on by heading the ball, we still see in matches people being sent back on by the club medic.

“Only an independent medic should make the decision about whether somebody should go back on. If there is any doubt, sit them out.
It should be simple and that should apply across all sports.

“The government has had a great success thanks to the major trauma centres [which] manage to save an extra 600 lives every
 year.

“That is brilliant, but let us save the quality of their life as well. The miracles
 that can be achieved in saving lives can be matched by the miracles that can be achieved through really good, long-term, sustained rehabilitation.

“If we can take an 18-year-old who has had a big brain injury from needing six carers to wash, dress and feed them, to a place where they no longer depend on those people, are mostly independent and need only one carer, think how many millions of pounds we can save the taxpayer across their lifetime. That must, of course, be the most effective way to change things.”

Bryant reiterated previous points about flaws in the personal independence payment and employment support allowance systems: “One woman said to me, ‘the doctors say

to me that I should spend all my emotional energy on getting my brain to work again, but I am spending all my emotional energy on trying to understand the forms and going through the process so that I can put food on the table for the rest of my family’.”

Michelle Donelan (Chippenham, Con) said: “It is so important not only that A&E training in the detection of brain injuries is up to date, but that there is strong public awareness of the symptoms, to ensure that help is sought immediately.

“Equally, that is why we must continue to invest in research so that we can detect earlier and treat more effectively… Brain injuries affect all aspects of a person’s life.

“They are not only an issue for the NHS, because they also have massive implications for a person’s social care, eligibility for employment and disability benefits, ability to navigate the judicial system and education, to name but a few.

“That is why cross-departmental working is so vital and why the support available and knowledge of it is so crucial, as is increasing general awareness, especially given the fact that every ABI is so different.

“For example, I have a constituent who 
has been able to work a number of hours with a severe ABI and is on universal credit. However, when an error was made, a request for back-payment was issued.

“A factual letter was sent, but it was an inappropriate letter to send to someone with a severe brain injury. It caused great distress, and it would have been better had a personal approach been taken… That could and should have been done.

“We also need to get individuals and families to volunteer the information to work coaches and those sectors that need it, which is why I welcome the roll-out of community partners. That will help to facilitate that work up and down the country.”

John Woodcock (Barrow and Furness, Ind) recounted his own head injury experience: “I was incredibly lucky because, when I fell off a ladder onto a wooden block in my attic in a classic case of what not to do around the home, I was eight feet off the ground and my head 14 feet off the ground.

“I did not suffer a brain bleed. I was profoundly lucky to be in a job with a support system around me and with wonderful staff who were able to take the load from me for a full two years.

“At first, I was not able to work pretty much at all except for very small bursts. I slowly built that up, but I had to resign from the front bench.

“My personality changed… I became much less risk averse in a way that was not
healthy. I suffered from depression. As I was recovering, I was not able to spend time
with my small children.

“My marriage broke down, and I could work only for very small amounts of time. I feel so lucky because there are so many people whose employment circumstances would not allow that at all and who would not have the system around them.

“I was lucky because I was able to understand the system and to ask for the best care. I eventually was referred to the best care in the NHS and I got it and I have pretty much been able to make a full recovery.

“My family will tell me what a nightmare I am whenever I try to find something because my short-term recall, which was never good in the first place, will never come back to even the mediocre place that it was in before.

“Yes, we should be so proud of the positive role that the NHS can play, but it is not the case that everyone receives good care when they acquire a brain injury… I was given
great care by paramedics who thought that my back could be broken when I fell off the ladder. All the tests were done. I was very, very sore. When I was released the next day, I was not even given an [information] leaflet.”

“I thought that concussion was something that lasted for 24 to 48 hours. After a couple of weeks, I found that I still could not really work, except for very short 30 to 90 second bursts, I went back to my GP who said, ‘you have a stressful job and a young child. I think you are suffering from stress.’ I said, ‘no, I’ve worked for Gordon Brown; I know what stress is.

“This is not stress.’ It was only because I was able to push and because he had a personal relationship with the lead neurologist for the area that he picked up the phone and I was seen. So many people do not have that.”

Liz Twist’s (Blaydon, Lab) contribution 
to the debate included focus on child brain injury issues. “Department of Health data shows that in a four-year period, 39,000 under-fives were admitted to hospital because of falls.

“Many of these children
 will be discharged as fully recovered, although the outcome of traumatic brain injuries in children may not become clear until their brain is fully matured. In fact, despite the early years being a key point in brain development, it is also the time when children are most vulnerable to injury. Sadly, it is also the least supported age group.

“The [brain injury] APPG heard from the Child Brain Injury Trust that children are very different from adults after ABI, because their brains are still developing and will continue to do so until they are in their mid-20s.

“The full extent of their injuries and subsequent difficulties may not be realised until their brains have fully matured. Up to 70 per cent of young people return to mainstream education following their injury.

“In common with many other groups, there is a lack of interim access to rehabilitation, whether residential or in the community – community being the main issue for children and young people – so schools and teachers are the main source of rehab for these young folks.

“Unfortunately, those teachers, including special educational needs co-ordinators and educational psychologists, do not
 have access to training in how to deal with children returning to school with ABI.

“Of course, we know about the pressure that teachers already face in their work. Many young people do not have a formal diagnosis of ABI, so they can be misdiagnosed as being on the autistic spectrum or as having attention deficit hyperactivity disorder. This can be a real detriment to their outcomes and future development. In the family, the emotional and psychological impact of an ABI can completely change their world.

“They often face a lack of services in the community, isolation and a lack of access to funding support and information. They may also be unable to access counselling. They are balanced between child and adolescent mental health services and other non-neurological services, as specialist neurological services for children are scarce.

“Where people live matters; there are few areas of excellence, with the excellent services mostly based around major trauma units. Our children deserve better than they have at present.”

Carolyn Harris (Swansea East, Lab), vice-chair of the brain injury APPG, said: “Julian John, a dear friend and constituent of mine, is living with an ABI – an injury that led him to change his entire life path several years ago.

“He could have allowed his injury to dictate his life but he did not, and instead used his experience to help others to live fulfilling lives and gain meaningful employment.

“Every day Julian must overcome obstacles due to his ABI, such as being easily disorientated 
by doors or stairs. Simply entering a building or climbing stairs can be a massive task for him. But Julian advocates for the inclusion of people living with such disabilities and is an excellent example of how disability – whether visible or hidden – should not hold people back from reaching their full potential.

“He has used his experience to start a
human resources company which specialises in inclusion.
“Many [brain injured] individuals
 require early and continued access to neuro-rehabilitation to optimise their recovery, but the number of available beds across the UK is inadequate. Service provision is variable, and this means
 that long-term outcomes for brain injury survivors are compromised.

“There is a large variation in the provision of and access to neuro-rehabilitation services across the country, and a lack of neuro-rehabilitation personnel.” Harris urged a full review of neuro-rehabilitation services to ensure more people can build a productive and meaningful life after ABI.

Paula Sherriff (Dewsbury, Lab) called for more support for long-term rehab.
“Although we have first-class acute care in this country, and advances in medicine in recent years that have resulted in many more lives being saved following a brain injury, it is undoubtedly in long-term rehabilitation where much more support is required in order to save and preserve the quality of lives for those suffering from acquired brain injuries – and, of course, their loved ones.

“Somebody who has suffered a traumatic brain injury could have had three months 
in intensive care, six months in therapy, and maybe a year in residential care, and then they are o en sent home and the help stops. Quite often personalities will have been affected, and the person who comes home could barely resemble the one before the accident or incident that led to the ABI.”

She stated that the estimated £15bn-per-year national cost of brain 
injury – based on premature death, care requirements, lost work contributions and continuing disability – represents around 10 per cent of the annual NHS budget.

Chris Bryant: “Two suggestions have
 been made about rehabilitation that might change things: first, that we should have a rehabilitation prescription just like a medical prescription so that the person knows, and the family know, what support there is on
an ongoing basis; and secondly, that every single major trauma centre should have a rehabilitation consultant, because one in four do not. Is that not essential to be able to make sure that we change this world?”

Paula Sherriff: “Neuro-rehabilitation
is one of the most cost-effective services
 that the NHS provides, and one of the few services in medicine that results in long-term decreased costs to the economy. However, the number of available beds across the UK is inadequate, service provision is variable and consequently long-term outcomes for brain injury survivors are compromised.”

Among several other points, she called for a “more co-ordinated and systematic approach to ensure that everyone with an ABI has
 the same quality of care and the same
life chances”.

“This service should not be reliant on the charity sector, especially in these times of austerity in which charities are struggling to access vital funds.”
She also echoed Chris Bryant’s request for 
a government taskforce across all relevant departments, including Health, Education, Justice, Work and Pensions and Defence and for adequate funding for services.

Steve Brine, summarising, said it was clear that continued focus is needed on providing rapid and appropriate triage and treatment of head injury, to ensure that patients can access the most appropriate service and level of expertise from the start, especially in schools.

“We should be seeing joint working between health, social care and education, with multi-professional assessments of a child or young person’s needs, including all the relevant experts, to get this right earlier and to prevent the cycle of problems that often leads to exclusion, brushes with the criminal justice system and a life scarred more than
it already is.

“Dare I say it, as someone once said, we need to understand a little more and condemn a little less. I still believe in that.”

Other points highlighted included maintaining a commitment to research.
 He also responded to calls for a review of neuro-rehabilitation.

“The audit that we published at the end of 2016 recommends that all providers reflect on the capacity that they have. The national clinical audit of specialist rehabilitation will address that in the next stages of the audit, which are due to complete later this year.

“Through the personal support package
 for people on employment and support allowance, the DWP is working to improve the support that it offers to those with long- term conditions such as brain injury, including peer support and training for disability employment advisers. However, it sounds like there is a lot of work to be done.”

Some quotes from this debate were omitted while others were shortened.

The Commons debate highlights Britain’s many brain injury-related challenges. In solving them, specialist therapies may have an increasing role to play in future, says Daniel Thomas, managing director of Chroma, a leading provider of neurologic music therapy (NMT). He also backs the ABI Alliance, UKABIF and INPA in urging that every person who needs brain injury rehabilitation is “provided with a detailed and time-sensitive rehabilitation prescription”.

He says: “Chris Bryant MP rightly links this to the value of a medical prescription within patient care. Chroma supports Paula Sherriff MP in her assertion of the economic cost-effectiveness of timely rehabilitation, as well as its clinical efficacy. One of the most effective ways to activate and use healthy, injury-
free parts of the brain within someone’s rehabilitation is done using NMT.

“Putting NMT and the rehabilitation prescription at the heart of UK brain injury strategy will ensure a clinically effective and cost-efficient approach to long-term rehabilitation for every person with a brain injury.”

Gavin Farrell, consultant clinical neuropsychologist at the Central England Rehabilitation Unit (CERU), agrees that NMT could play a bigger part in tackling brain injuries going forward.

He says: “Music neuroscience clearly demonstrates how music activates and stimulates a diffuse and wide range of brain regions linked to sensorimotor, cognitive, communication and emotional functions.

“By using NMT, the clinical application of music neuroscience, healthy and un-injured parts of our patients’ brains get activated. NMT recruits active neural plasticity networks, which can lead to significant and effective rehabilitation outcomes within the time-limited framework rehabilitation must take place in. We look forward to using NMT at CERU.”

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Insight

‘Don’t be alone, don’t be too proud to reach out for help’

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After Vasili Kalisperas was born a healthy baby, his jaundice was left undetected by midwives and led to him being left with cerebral palsy and needing round-the-clock care. Here, his mum Elena discusses the huge mental health challenges of being a parent in such a position and how she learned to admit it’s OK not to be OK 

 

I’ve always been a very optimistic and positive person, which I do think helps during such traumatic times, but that’s definitely not to say it hasn’t been a struggle. As equipped as you might be in terms of your outlook on life to deal with challenges, when something so traumatic happens to you, it is of course going to be a struggle to come to terms with that. 

No-one tells you how to cope, you can never prepare yourself for something like this. There is no right or wrong way to do things and you can only get through it as best you can. 

My husband and I dealt with things so differently in the early days. He found comfort in talking about what had happened to Vasili, by sharing a lot of information on social media, whereas for me I was more introvert, I didn’t want to do that.

I was diagnosed with PTSD, which stemmed from the fact our situation was so completely preventable. I became fixated with Vasili still being in the womb, when things were still fine, and I so desperately wanted to find a way to turn back time. I had a water birth with Vasili, and every time I had a bath I’d be in there for hours crying, reliving the whole experience of giving birth to him, feeling the exact pains I felt. 

My husband made sure I was cared for and was OK, but finding help was hard. I did try and get medical help but the waiting list was huge. I waited for over a year to see a therapist but I didn’t find it helpful – she wasn’t trained in my needs and was a general counsellor, so I didn’t get anywhere. I was then referred somewhere else, but that was in the same place I had my check ups when I was expecting Vasili, and that in itself was too traumatic. 

After being bounced around for a couple of years, eventually, I went privately and found an amazing therapist. It does take a huge amount of time and energy to relive the experience, but I found that opening up and talking about how I felt was so important. I also discovered EMDR therapy through these sessions, which was fantastic and really helped me so much. I realised how far I had come through taking that decision to open up and look for support. 

If you have a support network around you, then that can be vital in times of trauma. Even if friends don’t know quite what to say, the fact that they’ll listen can be so valuable. My mum and sister were always there, anytime I needed anything. There were times when no-one could say the right thing, no-one could fix what had happened, but just being able to talk and cry and share what I was going through helped me so much. You need to allow yourself time to grieve, as it really is a grieving process. 

In society, while things have thankfully changed massively in recent years, there is still a feeling for many people that showing emotions is a sign of weakness. There is still a stigma in admitting you’re struggling with your mental health, but I see that it’s like your physical health – you’re never going to breeze through life without any problems at all, it’s going to happen to us all at some point. No-one should ever be afraid to admit they’re struggling and they need support. 

Lockdown has been difficult for us all, and seeing the impact on the children and my oldest daughter in particular, has been awful. She is in high school and not being able to leave the house has had a big impact on her mental health. But as a family, we share our feelings and talk about it, and I teach my children the importance of positivity and an optimistic outlook to help them cope with challenges.  

In learning to deal with what you face and move on with your life, you need to accept it and forgive yourself by recognising it isn’t your fault. It has been a long journey for me – Vasili will be nine in May – but we’ve made so much progress. 

While Vasili and our other children are of course our priority, I’ve learnt the importance of making time for self love and care. Without making time for that, you’ll run yourself into the ground. For the last two-and-a-half years, the children have been at school every day, which has meant I’ve had time to take control of my mental and physical health. I started doing daily exercise, which began by making sure I got out to walk every day, and I now regularly go to the gym. It’s a big release for me. 

I’ve also reached a place where I’m able to look to the future and I’ve started my own business as a hairdresser, working from home in a salon we’ve created in an outbuilding. Being a hairdresser gives me a chance to help other people to open up and discuss anything that’s on their mind, which for many people may be the only chance they have to do that. And also, I’m training to be a personal trainer – I’m already a mental health first aider, and I’ve seen for myself the impact that exercise can have during the most trying times, so I think the combination of mental and physical wellbeing support is so important and I’d love to help people with those. 

For me, in being able to find acceptance of our situation, I’ve been able to move on and find time for myself and what I want to do with my life. I’ve definitely found my purpose, both as a mum and as a woman, and I’m in a much better place now. But without having the strength to open up, to reach out and admit I needed some help, I don’t think I’d have reached this point in my journey. 

The one thing I’d say to people who are struggling, whatever their situation or circumstances, is to talk. Don’t be alone, don’t be too proud, and reach out to someone. I’m so pleased I did. 

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‘I’m a rehab professional attempting to rehab myself’

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Having contracted COVID-19, which has now become Long COVID, assistant neuropsychologist Alarna continues to battle a number of effects, including fatigue. Here, she shares her reflections on her experience, which has enabled her to gain a greater understanding of her patients’ wish to return to their ‘normal selves’

 

My name is Alarna, and I am an assistant neuropsychologist at a specialist private neuro rehab hospital. I have worked in both supported living and rehabilitation settings for the past 14 years, with various mental health conditions, psychologically rooted illnesses, degenerative diseases, and rare neurological presentations.

Today in discussion with our company director responding to the question of “How are you?” I found that I had reached a new level of understanding for every patient that I had worked with. I found on some level I could identify with their journey as I am attempting to rehab myself. I answered, “I just want to get back to my normal self”.

In December 2020, I tested positive for the coronavirus and was severely unwell for a period of 2-3 weeks. I initially was unaware that what I was experiencing was anything other than being run down or having a common cold. It was not until day four when I woke up feeling as though someone was sitting on my chest, each time I moved I had to take shallow rapid breaths to remain upright and when I coughed it felt as though I was being punched with weighted gloves from all angles.

This was unlike anything I had experienced in my life. Being someone who would be over a cold within 3-4 days (and very ironically did not know how to properly rest) the situation was entirely foreign to me.

Having thankfully recovered some weeks later I began to find myself falling asleep involuntarily every 2-3 hours, I was still breathless on exertion (from walking up a flight of stairs to carrying a handbag) and generally feeling weak. After seeking advice from NHS 111 I was reassured that this was to be expected following a virus and should subside in a week or so.

Throughout this period, I had regular contact with my supervisors at work who were (and still are) extremely supportive, reassuring, and understanding. It was not until several weeks later that we discussed an action plan to help me ease my way back in to work.

This brings me back to today, four months after having COVID-19 and still suffering with chronic fatigue, occasional breathlessness, and migraines. I am unable to complete a full day at work and once I get home at approximately 3:30pm I have no choice but to stop everything and sleep.

Just a key point I would like to throw in here. Fatigue is not the same as being tired!!

I have been burnt out before, I have been exhausted, and I have been tired, but this unexplainable experience is not like any of the aforementioned. It is like an involuntary shut down. People who mean well advise me to just rest or sleep more not realising that I am sleeping up to 14 hours most days and still waking up feeling exhausted.

In my attempts to help the process along I have completely changed my diet, dropped 20lbs of excess fat, complied with resting when my body tells me to, and my energy levels remain poor. Some days it feels as though my speech is unnaturally slow and slurry, though when asking my colleagues, it is not so for the listener. In summary I cannot function without having a 2–3-hour nap in the early afternoon as well as a full night of sleep.

Though there are so many unknowns with this virus, from my experience I have learnt the following:

–       The importance of self-care and rest. Sometimes in the busyness of life what we think we are doing to take care of ourselves really is not self-care.

–       To appreciate the stillness and tranquillity of silence

–       Spending time alone and reflecting is so peaceful.

–       Your health is one of the most important things you have and needs to be a priority. Facts that I knew before but like so many, have taken for granted.

Personally, as a woman of faith I believe that this situation has and will work out for my good in the end, there is always a lesson or a positive to be taken from every experience. This has also fuelled my ever-burning desire to be instrumental in changing lives for the better, starting with my own.

This situation is only temporary but for many of my patients it is not and returning to their former self is a distant memory not to be realised.

I take this opportunity to thank my incredible supervisor/mentor at Renovo Care, Dr Anita Rose, and Margreet, as well as my amazing colleagues Ana, Chris, and Simone for being so caring and supportive during this difficult time.

Rest in peace to all of those who have lost their lives because of this horrible virus, including my dear Grandpa. May we find and be the solution! Stay safe.

Signed

A rehab professional attempting to rehab herself.

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‘This isn’t a threat – it’s an opportunity for revolutionary change’

Writing for HT World, Brian O’Shea, continuing healthcare advisor at the Spinal Injuries Association, urges commissioners to embrace change for the good of the patient.

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As a service user and patient advocate, I believe it’s important to always consider the patient perspective of going through the NHS Continuing Healthcare (CHC) process.

I think it’s important to recognise that when people encounter the CHC or local authority assessment process, it is more often than not the first time that they’ve engaged with the health and social care system.

This usually results in an overwhelming experience for patients, or their carers, as they have so many questions about the process.

It can therefore appear to CCG or CHC advisors that patient questions don’t really arise in a logical flow or sequence. They will often ask questions as they emerge in their minds, for example, “How does this thing work and how can I make sure my voice is heard?

What’s happened so far in the process? What happens next?” However, the most frequently asked question about the process is, “Who can I speak to?”

Brian O’Shea

It is really important to think of this experience not only from the individual patient’s perspective but also from anyone who is working with them to get through it, whether that is an advocacy organisation such as SIA or simply an interested relative.

Quite often when a patient or their relative contacts us, we start to ask them what we think are simple questions: Where are you? Have you had a check list done?

Have you had a referral made? However, as it is often their first experience dealing with the health and social care system, they just don’t know the answers.

Using a patient portal

Previous NHS CHC improvement initiatives have focused on answering this question by allocating a case worker to take individuals through the end-to-end NHS CHC process.

However, we know that this falls down because the individuals managing the process leave the NHS organisation handling the individual’s application, or there is a change in the contact details of the CCG etc.

And there are many more factors and variables that can disrupt the communications between the individual and the CCG, leaving the individual in the maze or even worse, just in the void.

And so, I think digitisation in this area of healthcare delivery is tremendously exciting.

I think that, through the trials of the last year, we have seen how empowering the move over to digitisation can be across the whole of the health and social care sector – when it is done properly.

In this spirit I see a patient portal as a potential solution to many of the questions the CHC process brings up for both patients and CCGs.

We once asked as an industry, “How do you address the issue of having a dedicated individual to take the patient through the assessment and care plan process from end-to-end?”

Well, the answer may just be that you don’t actually need an individual to take the patient through the process, maybe that can be achieved by a digital platform.

There is also a growing awareness amongst patients of the amount of personal information the NHS holds.

I think that one of the advantages of the patient portal on the digital platform, particularly demonstrated in the Digital CHC by IEG4, is that the CCG can make the data more transparent to patients and families.

Sharing the assessment information and the discussions from the MDT meeting builds trust in the process and ensures that patients and families are at the heart of the CHC decisions.

However, having a patient portal is not necessarily throwing open the doors and having absolutely no control of the information between the patient and the heart of the NHS. It is more about understanding the information that an individual needs to generate trust in the NHS CHC assessment process.

As advocates we recognise that, for some patients, if you gave them access to everything it could be just as overwhelming as not giving access to any information. So, it is important for the CCG to build flexibility into their digital platform and strike the appropriate balance for each individual patient.

An additional advantage with a digital platform, is that you don’t have to wait for 9-5 office hours to get an answer to your questions, you can access the information yourself at a time to suit you.

The platform can answer the questions of who has already been involved and who is going to be involved, what the next steps are, and it can also keep track of what’s already been done. No chasing telephone calls taking up time of health and care professionals and an ability for patients and family members to take control.

The Future’s bright, the future’s digital

The path to the digitisation of healthcare services has not been straight forward, and there is still some work to be done in ensuring that safety sits atop the agendas of CCGs when it comes to its adoption, however seeing how platforms like IEG4 take steps to improve this is encouraging.

Both as a patient and as a patient advocate, I cannot tell you how excited I am about the move to digitisation of Continuing Healthcare.

I honestly think it has the potential to be revolutionary.  I think that when used appropriately by CCGs it could be a revolutionary step forward in the quality of decisions made, in the amount of time that it takes to make decisions and it has the potential to be revolutionary for the individual patient experience of the NHS CHC assessment process.

I would really encourage CCGs and local authorities not to see it as a threat. To me it is just such a great opportunity and I think it is really pivotal in changing how we engage with Continuing Healthcare.

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