Inside: Accreditation: A good reputation makes all the difference 3 The sky’s the limit: High adrenalin activities 6

Beverley Turner: Life with my husband's brain injury 8Neuropsychology: Past, present & future 12Brain injury in the media: Fantasy vs reality 14

Issue No.1

Spring/Summer 2012produced by Enable Publishing

Essential reading for the Acquired Brain Injury arena

World of change 25 years of developing neuropsychology

INduStry ProfIlE: ProfESSor NIck AldErmAN

Editorial/CommentJane Heath2

When we first sat down to discuss the content of the new Cortext magazine, we decided that we wanted it to reflect what was happening in the

If you find Cortext an interesting and informative read, let us know by getting in touch at publishing@enablecare.co.uk

Please also send any suggestions on topical subjects you would like to see covered in future issues.

Acquired Brain Injury (ABI) world. We wanted to discuss issues that are currently affecting us and are perplexing the minds of people working within the field.

Why are people not getting access to the services they need and being sent to inappropriate placements? This is a key issue for the United Kingdom Acquired Brain Injury Forum and the case is eloquently put by Professor Mike Barnes, the current chair, on page 5.

How can you determine whether a placement is any good? Does an accreditation system work and what is it measuring? Pages 3–4 see great contributions from both Headway and Cathy Johnson, the experienced case manager from Rehab Without Walls.

Page 14 looks at the part the media plays in forming public perception of brain injury. A thought-provoking piece is included from Matthew

Editorial

Welcome to the first edition of cortext magazine – bringing you the latest news and views from the world of Acquired Brain Injury.

Jane Heath, Editor Head of Business Relations, Enable Care

The Acquired Brain Injury arena is constantly evolving and developing. Cortext actively encourages knowledge sharing and debate. Here experts in the ABI arena comment on their favourite articles in this edition of Cortext.

comment

Colbeck, a PhD student at Sheffield University, on the misrepresentation of ABI in film, television and the media.

A moving piece from Beverley Turner, on page 8, describes how an ABI affects a family and how she manages to hold everything together. Page 11 features a personal account from Sam Aird, currently at Enable Care’s 1 Sewardstone Close.

Professor Nick Alderman gives a 30-year retrospective on neuropsychology and looks at what lies ahead in this fascinating field (page 12). The therapeutic Right to Risk adventure programme in California, founded by Anne Johnson, proves that there is more to activities than bowling and bingo (page 6).

We hope our magazine gives you a flavour of what is happening right now and what could be happening in the future.

Simon Berrell mcSP, Clinical specialist physiotherapist, director of The Neuro Physio Service

dr Gavin tennent DM FRCPsych,neuro psychiatrist

Simon is enthusiastic about the Outdoor Adventures Programme feature on page 6.

“Anne Johnson and her team are highly respected for the inspirational work they do. There are organisations and Trusts in the UK that have aspired to reach the same heights. However, with the average age of individuals with neurological conditions falling, there is increasing need to offer life-enhancing activities.

These activities are beneficial as they enhance a person's sense of identity and self-worth. This ties in with Enable Care’s philosophy of rehabilitation.

We would welcome Anne to the UK and taking inspiration from her enthusiasm, Enable Care will continue to offer excellence and highly individual, tailored intervention as standard. The only thing missing is the California weather”

Simon Berrell provides assessment, treatment and training through a team of 100 neurological physiotherapists.

Gavin agrees with Matthew Colbeck (page 14) that brain injury is often misrepresented.

“Popular TV dramas often paint a very unrealistic portrayal of injury, often trivialising the symptoms, recovery and the rehabilitation that follows. This leads to the public having a very misconstrued view of such injuries. It can contribute to difficulties in understanding and accepting real-life situations should they sadly be affected.

The article throws light on many issues surrounded by misrepresentation. I believe this is certainly an issue that needs to be addressed on a wider scale.”

Gavin Tennent trained at Oxford, the Middlesex and the Maudsley. He took up directorship of the Special Hospitals Research Unit, assisted the reorganisation of mental health services in Bermuda and was medical director at St Andrews Hospital, Northampton.

after waiting for an hour, the manager of the unit arrived. When asked about her experience of working with people with brain injury, her answer was: ‘I’ve had one!’”

Sense of security Today there are between 1,400 and 2,000 beds in the UK – with more than 76 different providers – for patients with an ABI to go to after their time at NHS services. A number of these have looked at an accreditation to validate what they do. Most would say this is a good thing – an accreditation should give a sense of security that the company is fit for purpose and suitable for the patient’s needs. Of all the providers claiming to provide services for people with an ABI, only a small proportion actually has an accreditation.

Accreditation matters Rehab Without Walls was the first provider in the world to be awarded the Commission for Accreditation of Rehabilitation Facilities (CARF) for brain injury case management for adults and children.

Cathy has worked with CARF for many years. When she was at the Kemsley Unit at St Andrew’s Hospital in 1995, Cathy was involved in looking into brain injury accreditation. CARF is now involved in accrediting services in USA, Europe, Africa, Asia and the Middle East. Having CARF accreditation demonstrates that every aspect of a service has been reviewed and checked by industry peers, including the finances, the buildings, the service procedures, the staff and their qualifications, the rehabilitation programmes and the outcomes. CARF accreditation is well respected throughout the world. However, to this day, there is no system specific to the UK that reviews the process of rehabilitation from a clinical point of view. There is no system to check a facility meets the desired standards, thereby awarding a relevant accreditation.

3 Update/ Focus on accreditation

the power of accreditation

A fantastic reputation and extensive experience can be the deciding factor when it comes to finding the perfect placement for those suffering an Acquired Brain Injury (ABI). Founder of Rehab Without Walls cathy Johnson explains how the future will see accreditation separate the good providers from the bad.

Rehab Without Walls’ motto ‘whatever it takes’ is perfectly fitting when it comes to finding appropriate placements for individuals with an ABI.

This is part of the approach adopted by the case management company set up to arrange and manage rehabilitation and care for people who have had an ABI in the community. Cathy Johnson is the owner and a director of the 16-year-old company, which prides itself on doing whatever it takes to find the best possible placement.

Catering to the individual Cathy has been working in the brain injury field for 27 years and now employs 22 case managers at Rehab Without Walls. The company works hard to place patients in rehabilitation services, at home or in appropriate residential care, with a view to them living independently back in the community in the long term.

Cathy said: “Each case is individual, and although there is a moral and philosophical debate about what constitutes the best quality of life for the person concerned, we pride ourselves on trying to get the best possible outcome for our clients.”

What does Cathy look for in a placement?“Reputation is extremely important. It is imperative the case manager knows as much as they can about the placement home or unit before visiting,” said Cathy.

“It is always important to check feedback from reliable sources – brochures and websites don’t always reflect the truth! The visit should establish what sort of feel the home has – whether it smells, if the staff are friendly and professional, do the residents seem happy and occupied? Using your senses and clinical experience is one part of assessing appropriateness and quality.”

The placement for consideration should have staff with appropriate experience and qualifications in dealing with people with an ABI. Cathy said: “I can remember visiting a unit (no longer providing such services) where,

Cathy said: “As we find ourselves in a time when care homes are being asked to open their beds to ABI patients, I feel we should now have an appropriate and respected accreditation system implemented for all ABI units and homes.”

Political agenda On a positive note, accreditation is currently on the political agenda. The UK Rehabilitation Council (UKRC) received funding from the Department of Work and Pensions to look into accreditation several years ago. There is also a code of practice (PAS 150) for standards in rehabilitation developed by the UK Rehabilitation Council and BABICM (British Association of Brain Injury Case Managers) is developing standards for case management. Things are moving in the right direction.

Why don’t all providers have an accreditation? Cathy said: “Well, perhaps, soon they will be forced to. Case managers, solicitors and commissioners should look at accredited providers of rehabilitation services more favourably. Put them higher up the shortlist of appropriate placements, as they are obviously meeting certain standards.”

Headway has recently launched its own Headway Approved Provider accreditation. Cathy welcomes this as long as it improves practice. However, it is important for the organisation that provides accreditation to work with companies such as Rehab Without Walls to encourage reciprocal learning when setting the accreditation criteria.

Cathy added: “The challenge now is to get the message across to commissioners that accreditation is important and will become more so in the future. The way forward is through education on how accreditation can benefit everyone – the patient, solicitors, case managers, commissioners, placement providers and families.”

www.rehabwithoutwalls.co.uk

”the challenge now is to get the message across to commissioners that accreditation is important”

4 Editorial/ Accreditation

Headway started the programme following feedback from Headway groups and branches reporting variable quality of homes and units where people with an Acquired Brain Injury (ABI) had been placed. Some had even been placed in units that had no brain injury experience.

In light of this, Headway wanted to set standards to assess providers against, with a view to improving the quality of all homes and units.

The Headway standards were developed through a variety of sources, including experts in rehabilitation; people from the medical profession who had worked on and managed units; service users and service carers; as well as people who were experts on legislation. There was also reference made to the British Society of Rehabilitation Medicine and the Care Quality Commission (CQC), to ensure standards were adapted specifically around the issue of brain injury.

Headway feels it is necessary to have an accreditation programme as it has a specific

focus on the needs of people who have an ABI and ensures that this is reflected in service provision.

As third party accreditation is becoming increasingly important, the scheme supports the demonstration by units that they are actually doing what they are meant to be doing. It also gives providers extra evidence to prove they are keeping to desired standards, while giving the families, funders and referrers an extra level of assurance when considering placement.

We all look for this sort of evidence in every day life, so why not in the ABI homes or units where we are placing loved ones. Headway is a strong brand with a high level of credibility and an excellent understanding of ABI, which means it will make sure there is clear guidance for quality.This accreditation should give families an assurance the standards will meet expectation, although visiting a home or unit is still a must. Families are now asked to make decisions on care early on after the injury, which can be very daunting, but the Headway Approved Provider Accreditation should help them make the right one.

To date, 22 units have been assessed, with five referred, one status withdrawn and 16 approved. The accreditation is voluntary for the homes and units and those that get referred are given reasons why, and work with Headway thereafter to achieve accreditation. Headway will highlight where the unit is falling down and develop action plans to ensure implementation of improved measures are in place and that evidence is provided of meeting the standard.

Even with those approved, there is always an element of continuous improvement and further organisational development, in the form of recommendations. These are then assessed during a follow-up unannounced visit during the period of registration on the scheme.

In assessing for accreditation, the Headway Approved Provider project takes a view from a service carer and user aspect and ensures that at assessment a service carer or user is part of the assessment team.

Headway believes that all ABI services should have some form of accreditation.

Looking to the future, Headway would like to see more organisations registering for accreditation. It is also looking to get the Headway Approved Provider accredited by a British body that will recognise that it meets its own exacting standards.

Accreditation for brain injury unitsApproved provider Headway’s accreditation programme has been running for almost two years. We look at the journey so far.

5 Hot topic/ Inappropriate placements

Hot topic

This is the opinion of Professor mike Barnes, Chair of United Kingdom Acquired Brain Injury Forum (UKABIF). His other roles include the Chair

of Neurological Rehabilitation at Newcastle University and owner of Hunters Moor Neurorehabilitation Ltd.

Mike, like many others in the industry, is increasingly concerned that inappropriate placement of people with an ABI following acute rehabilitation takes place all too often all over the UK.

He said: “Although the exact number of inappropriately placed patients is not readily available, there is evidence that many patients are discharged from hospitals after acute medical care far too soon.

“Some are sent home when they shouldn’t be there and others are sent to care homes, following acute rehab, that are not suitable.”

driven by cost Many of the decisions around patient placement are driven by cost factors.

“Some nursing homes are unable to offer the quality or specialty services that people need when leaving rehab,” he said.

“The homes may meet the Care Quality Commission (CQC) Standards, but these standards do not look deeply enough into the specific requirements of people with an ABI.”

Mike believes that the immediate future is not looking rosy. The next Health & Social Care Act may help determine what is and what is not appropriate. However, the increase in commissioning groups – that are unlikely to understand this arena – will probably mean things get worse before they get better. However, there are some positive steps that are aiming to improve the situation.

lobbying for better standards UKABIF is lobbying government to help influence the Health and Social Care bill to take the special needs of people with an ABI into account. Mike said: “They are developing and implementing a series of standards and a register of suitable services. There is continuing emphasis on informing and educating that an extension of rehabilitation time in an appropriate place can, and does, bring benefit and subsequent cost savings in the longer term.”

UKABIF is trying to collate an indication of the ‘incidence of inappropriate placement’ and examples can be forwarded through the UKABIF website.

Another initiative is the formation of the Independent Neurorehabilitation Providers Alliance (INPA). This has brought together the key providers of neurorehabilitation in the UK in order to promote better quality services and improved standards. It was officially launched at the UKABIF conference at the end of last year.

To find out more, log on to www.ukabif.org.uk

Inappropriate placement of people with an Acquired Brain Injury (ABI) following acute rehabilitation happens all too often.

Welcome support for families

A local support drop-in group has opened its doors to provide much needed help and assurance to families of those with an Acquired Brain Injury (ABI). The Headway East London support group is housed at Enable Care’s flagship home in Sewardstone, North East London.

The support group runs a monthly drop-in session at the specialist ABI home for carers and families. It's held every third Tuesday of the month and is a place where people can seek advice, support and share information. Headway runs the support group, with its staff on hand to help with people’s queries, while Enable Care provides the base to run the group. Both hope in time, guest speakers and special guests will attend.

As this is the first support group of its kind in the area, it will be open to families of residents at Enable Care, as well as the catchment area of Southwest Essex, Southeast Hertfordshire, Northern Waltham Forest, Northern Redbridge, Enfield and bordering counties. Although there is no limit to these geographical locations.

Headway East London is at the forefront of support for brain injury survivors, their families and carers. Headway House is the only brain injury centre of its kind in inner London to offer specialist services and therapies.

For more information about the family support group or Headway East London please visit www.headwayeastlondon.org

6 Editorial/ Hot Topic

The sky’s the limit White water rafting, skydiving and dog sledging

are just some of the high-adrenalin activities enjoyed by children and adults with physical and cognitive disabilities. Founder Anne Johnson gives an insight into this Outdoor Adventures programme in the USA.

6 Profile/ Outdoor Adventure Programme

A focus on high adrenalin activities

At the helm: Anne Johnson steers the white water raft

7 Acquired Brain Injury Forum London

Just because individuals have suffered a brain injury doesn’t mean they have to stop the adrenalin rush they used to love. This is the vision behind the Outdoor Adventures programme.

Anne started Outdoor Adventures 26 years ago after noticing that many of the people who came to the Casa Colina Center with a brain injury were young men who had been involved in high adventure, high-risk activities prior to their injury.

She said: “It struck me that just because these people had a brain injury, shouldn’t mean they stopped the activities they loved. I realised that offering traditional passive recreation activities would not be as empowering as high adventure recreation.”

Boosting confidence The programme helps promote a feeling of self worth and enhances independence overall. Additionally, all the skills learnt throughout the rehabilitation process could be applied in practical and realistic settings. Anne’s first activity in 1986 was a camping trip to Big Bear Lake, including people with an ABI, their families, volunteers and Casa Colina staff.

She said: “The weekend was a huge success. The camping, trekking and other outdoor activities supported my theory in improving communication, boosting confidence and creating positive new relationships for those with an ABI.”

From this first trip grew a programme which now offers sailing, white water rafting, skydiving, whale watching, horse riding and dog sledging in Canada, to name but a few. The aim is to find an activity that provides a ‘way in’ for every individual.

The programme has two full-time and one part-time staff members, with 250 volunteers providing 9,000 hours of their time annually. These staffing ratios ensure the activity is facilitated in a safe and successful manner.

Safe and sound In an area where risk and litigation often go hand in hand, it’s testament to the fantastic organisational skills of Anne and her team that there have never been any major incidents.

Anne Johnson CTRS is founder and director of the Outdoor Adventures Programme at Casa Colina Centers for Rehabilitation in Pomona, California. Anne has been a Certified Therapeutic Recreation Specialist for more than 34 years and started Outdoor Adventures 26 years ago. This programme offers high adventure recreational activities for children and adults with physical and cognitive disabilities.

“I realised that offering traditional passive recreation activities would not be as empowering as high adventure recreation.”

In the uk Currently, the UK has no comparative programme either in breadth of activities or specialty for those with an ABI. But maybe seeing the inspirational way the Outdoor Adventures programme has grown and developed will demonstrate it is time to find a way of implementing it here. Anne is retiring from her position as Director of the Outdoor Adventures Programme at Casa Colina and will have some time on her hands. We are hoping to bring her to the UK to discuss how we may develop a similar service here.

She said: “The adventures are exceptionally well organised and every eventuality is thoroughly risk assessed to ensure an enjoyable and safe time. The staff are therapeutic recreation specialists with comprehensive training in wilderness medicine, scuba certification and outdoor education.”

All clients are involved in a pre-trip assessment to ensure appropriateness of participation and then attend a single day trip prior to longer duration outings. Additionally, the programme uses professional outfitters for many of their more complicated trips, such as white water rafting, dog sledging, sky diving, rock climbing, water skiing and snow skiing. By utilising these outfitters, an additional level of professionalism and skill is provided.

Reaping the rewards What’s Anne’s most memorable moment? “The sheer pleasure and delight of driving back from the activities and seeing the smiles, laughter and enjoyment of the shared experience,” said Anne. “Knowing that the people who have taken part are not judged on what they were before their injury, but who they are now.”

The improvements are plain to see – the increased confidence and improved communication skills, which translate into a more positive place to make further progress in rehabilitation. The weather in California is certainly a contributing factor to the success of the programme, which runs all year round. As is the unwavering help, enthusiasm, commitment and organisation of all those involved. The programme receives some state funding, contributions from Casa Colina, money raised from charities and donations from family and friends.

The incredible results and benefits of this programme are a true inspiration and the improved sociability, greater self esteem and feeling of being ‘back in the swing of things’ are the results that make it all worthwhile.

8 Editorial/ Real life

A balancing act TV and radio presenter Beverley turner was left to pick up the pieces after her husband, Olympic rowing champion and sports personality James Cracknell, suffered a horrific accident. She describes how her family is slowly getting back on track.

“my own daily struggles, although difficult and incredibly time-consuming, pale in comparison to those suffered by partners of the severely brain injured.”

Simpler times: Beverley turner, James cracknell and son croyde at the royal Parks foundation marathon

Beverley Turner

9

A balancing act

When a truck ploughed into my husband while cycling across America in an endurance challenge for the Discovery Channel, it left him with a fractured skull and damage to the brain.

In 2010, my husband James Cracknell (you know, that rower bloke – handsome, funny; known for crossing deserts and oceans, and arguably a little bit mad already) was mowed down by the wing mirror of a petrol tanker. At that time I knew nothing about head injury – now it feels like I have spent the last fourteen months cramming for an exam that I will never take.

James suffered a 'contrecoup' injury to his frontal lobe, with bleeding and swelling affecting the part that controls personality, decision-making and motivation.

There have been many arguments in our household over the last year. But on one memorable occasion while I was trying to get James to slow down, take a nap, listen to me, listen to his psychologist, he shouted: “You’re not a bloody expert.” “No,” I agreed (possibly throwing something across the kitchen), “but I am an expert on YOU”.

And this pretty much sums up the frustration for the partner of the brain-injured person. How do you get the real experts to listen to you and your requests for help? How do you describe your loved one’s pre-injury personality to those who will listen? How do you help the injured person to do what is right for them? How do you balance the innumerable hours dealing with the practical, financial and emotional fallout of a head injury? How do you explain a strange ‘intangible loss’ that hangs about the home? The list is endless.

Tireless support I never fail to be amazed by the stories of people who tirelessly support injured loved ones. My own daily struggles, although difficult and incredibly time-consuming, pale in comparison to those suffered by partners of the severely brain injured. I know that in many ways I am lucky. I recently came across a new support group (braininjurygroup.com) for families of people left permanently disabled, in a persistent vegetative state or with 'locked in'

syndrome. Their stories made me weep – and count my blessings. James was hit by the wing mirror of a 70mph petrol tanker. There is absolutely no reason (other than perhaps his good bike helmet) why he shouldn’t have become a member of that group.

Somehow, among the detritus of a brain injury, the ‘primary carer’ must retain some sense of self. My own ambitions for 2010-2011 pretty much disappeared. Submitting novels and attending meetings feels a bit selfish when you are ferrying food and clothes back and forth to hospitals for a man who may never be the same again.

It’s hard not to feel resentment at having ‘failed’ to fulfil my own aims. But I philosophise that this is what women have done for centuries. When fridges need filling, injured loved ones need supporting and babies need birthing (I actually found out I was pregnant ten days after James’ accident) women just ‘get on with it’.

But I have a sense of loss. Not only of time, but also of the future. It won’t be as I expected. James’ recovery has been remarkable – he has already embarked on a new series, now showing on the Discovery Channel, in which he retraces the steps of some of the world’s most famous explorers. For so many brain-injured people, a day’s goals are infinitesimally smaller.

I can only try to imagine how hard it must be for their partners. Nevertheless, getting James back to his current position became a full-time job. And although I am delighted that he is working again, it does occasionally leave me feeling a little... under-appreciated. I’m sure many other wives reading this will know what I mean.

Beating yourself up I recently emailed a woman who asked for some advice. Her husband had been in a serious car accident and sustained lots of injuries – including head injury. I urged her not to beat herself up about doing everything right, especially in those first few weeks. I recalled a day in America when I really needed a day off. We were in Phoenix. It was 115 degrees. Along with my mum and James’ mum I was entertaining our two kids (seven and one) and desperately needed a break from going to the hospital. But James stole a phone from a

physiotherapist and rang me (I now realise that initiative was a good sign!) He wanted to see the kids and me. I felt guilty. And as wonderful as my mum and mum-in-law are, on that day, they couldn’t see how badly I needed some space.

Sure enough, I didn’t have the energy to cope with James’ bizarre behaviour, and by the end of the day my mother-in-law and I had a massive row. It was hardly surprising given how high emotions were running. But the moral to the story is that if you – as the carer – are running on empty, you are no use to the patient or the rest of the family. “Take breaks,” I told the woman who had written to me, “Go for walks alone. Clear your head. See mates. Sleep as much as you can. Eat well. Accept any practical help that is offered: cooking, school-runs, babysitting...take it all!”

Shelving my ambitions There is an unedited novel sitting on my desk begging for attention. I was due to finish a two-year course in psychotherapy at the time that James had his accident (the irony of that has not gone unnoticed) and I similarly don’t know when I will find the time to return to it. I still write for The Daily Telegraph and have started to dip a toe back into the television presenting world. But I don’t yet feel I can severe ties with home-life and James-life in the way that I once could.

James’ biggest challenge now is to manage his fatigue (‘pacing’ in neuropsychology terms). This is not easy for a man who has built a career on being ‘less-tired-than-the-next-man’. It is the very essence of who he is. To encourage him to take regular breaks and factor in naps has been a constant battle.

Juggling different balls My day-to-day demands still involve a lot of James-related admin and it can be hard to envisage a time when that will stop. Being

“James’ biggest challenge is to manage his fatigue – ‘pacing’ in neuropsychology terms. this is not easy for a man who has built a career on being ‘less-tired-than-the-next-man’.”

10 Editorial/ Real life

Feature/ Family therapy

freelance and self-employed his diary is complex, unpredictable and spreads out in many uncontainable directions. Too often, I must to sit at the centre of it, ensuring that each department talks to one another. This will get easier in time as everybody around us adjusts to the new challenges. A helpful neuropsychologist recently begged me to sort out a good PA for James, “You have to pre-empt problems arising, rather than mopping up the mess afterwards.” It was great advice and should help ease the feeling that we sometimes lurch from week to week!

Letting off steam I am lucky to have a fantastic extended family. My mother is a selfless babysitter! My sister Cal and her husband Rick live close by and she has offered more support than I probably deserve and James’ sister is always there to talk to over a coffee. I have a great friend who drags me out to a singing group once a week and we spend 90 minutes laughing our heads off. It is the very best medicine. I have a weekend away booked with three girlfriends – my mum will look after the kids and I’ll probably sleep for most of the three days. It’s hard to over-estimate the value of these small treats. Therein lies my own personal sanity – and without that our kids really will suffer.

I have no idea what the future will hold. More improvement I hope. A better structure to manage all the practical implications and some way in which I can parent three children; help James and yet still find time for my own work and interests. Looking after someone with a brain injury is a bit like surviving years with small children – there will be desperate, exhausted lows but also momentarily hilarious, moving and touching highs. And like the ‘baby years’, you must somehow get through it all with a sense of humour and a little bit of yourself intact.

“looking after someone with a brain injury is a bit like surviving the small years with children – there will be desperate, exhausted lows but momentarily hilarious, moving and touching highs.”

Living with an Acquired Brain Injury (ABI) doesn't just impact on the survivor – it can also put a huge strain on their family. Through her involvement in family therapy, Mary Lees knows this only too well.

Every family is different and the same can apply to the way each member reacts to their loved one’s condition.

Much will depend on the individual circumstances and background – whether the brain injury survivor is a child, teenager, young adult, middle aged, senior or elderly. Whether the survivor has any form of family support and the strength (or not) of the relationship between them at the time of injury is also an important factor.

Mary said: “Their reaction will change over time, from the initial shock of the injury to the longer term. The response will differ as the family deals with various stages of recovery – from the intensive care unit, the hospital ward, the rehabilitation unit (if required), right through to discharge planning and home.

“Of course, the road to recovery is unique and not everyone reaches the last stage. Many may remain in some level of care, while the burden on the family takes different forms.”

The way a family responds to an unexpected brain injury to a loved one is poles apart to their response to them being admitted to hospital for a routine procedure. There may be considerable adjustment to recovery or if a disability is involved, but the person is likely to remain the same. They can still maintain their usual relationships with friends and family. Brain injury, however, creates greater upheaval.

Mary explained: “Brain injury can often create subtle changes in personality, relationships and awareness of the needs of their family. 'It’s like living with a stranger' is a phrase often stated by wives and children. The family’s ability to cope lessens over time.” In young marriages, the brain-injured person often becomes another child in the family. This can disrupt relationships and confuse children who have, in many cases, lost a parent, perhaps

the breadwinner. Older married couples or partners may adapt more readily to the role of a carer, but this is not necessarily predictable.

It is vital that rehab teams are aware of the myriad of possible responses by families when they are treating or caring for the person with a brain injury.

Mary said: “Small gains – which we see as real progress – will not necessarily impress the family. There can be tensions because our aim to rehabilitate is not the same as the family’s desire for their family member to recover completely and be the person they were.”

It’s important teams understand the family’s needs and are careful not to expect them to necessarily react as we think they should.

“We need to work together on this. Social workers usually support families and communicate with teams to accomplish a rehabilitation goal that is realistic,” said Mary. “This may be disappointing if the family cannot continue as an entity supporting home discharge (if applicable), but they must be helped to make realistic decisions.”

We must always consider the most appropriate care solution for the patient – even if this does not mean going home. This is the negative side of the equation. Many families can accept what has happened to a family member and understand the effect of neurological as well as physical disabilities. The relationships change within the family to accommodate and continue the relationship with all its changes, whether the injured person is in care or at home. This is a good outcome for the brain-injured person, provided the family still receives a good level of care and support.

Mary concluded: “Each family is totally unique and their own strengths play an equal part in how every member of that family copes with the changes in the brain-injured person.”

continued from P9 Mary Lees

Mary Lees sits on the executive board of the East and North Hants Headway committee. She has been involved in family therapy for those affected by head injury for more than 30 years.

Changing the family dynamics

11 Profile/Rehab

New Zealander Sam Aird’s sheer determination has led to great strides in her rehabilitation at Enable Care’s 1 Sewardstone Close over the last year.

Prior to her arrival, the 34-year-old from Hamilton was treated in hospital for tubercular meningitis, which then developed into encephalitis. She contracted the disease during a gap year in India.

She had spent a period of time at the rehabilitation service at the Royal Hospital for Neurodisability in Putney, but needed time to consolidate the gains she had made there and build on her skills. For a short while, it looked as if she was going to need long-term care and full support. Not a promising prospect for a young and very independent woman.

Fruits of labour Now Sam spends much of her time at the home building on her walking and communication skills to help her gain a greater degree of

independence. She uses a power chair to get out into the community and goes to the pool on a weekly basis.

Simon Berrell, her physiotherapist, said: “Sam is a very determined and motivated person who has lots of stamina. She has made incredible progress recently and is now walking 15 metres. This is thanks to the help of her key worker Leah Stroud (pictured above with Sam) and the rest of the team after months of hard work and practice." Indulging passions Often, the key to motivating people is to make sure the activities they are involved in seem relevant to their individual goals and this was no more evident than in Sam’s communication.

“often, the key to motivating people is to make sure the activities they are involved in seem relevant to their individual goals and this was no more evident than in Sam’s communication.”

The rewards of rehabilitationA gap year in India turned sour when Sam Aird contracted tubercular meningitis, which later developed into encephalitis. Her remarkable road to recovery includes learning to walk and talk again.

She would often shy away from speech and language therapy involvement as she felt it wasn’t something she was going to be able to achieve. However when it was offered in the context of what really interested her, like going out to eat or going to the pub she started to respond in a much more motivated manner. Leah tries to make sure all her therapy sessions have a relevance to the person that Sam is now, and who she wants to be in the future.

Sam is a happy and fun young woman who loves getting her hair done and nails painted. She enjoys trips to the pub, shopping, ice-skating and cinema, singing lessons and watching the X Factor. She is a great cook and has a secret recipe for apple sauce. She is also a keen baker and loves making cupcakes.

Encouraging independenceThere is a determined focus from Sam to be as independent as possible and return to her own home giving her greater freedom and autonomy.

Sam’s family lives overseas and she is in regular contact with those in New Zealand thanks to weekly Skype calls. She has not been back to New Zealand for four years, but has a three-week trip planned for this year.

Sam’s progress in such a short time is both impressive and inspirational. She is well on the road to becoming a more independent woman once again.

12 Industry Profile/ Neuropsychology12

Past, present and future of neuropsychology

Nick Alderman fell into neuropsychology despite aspirations for an army career. 25 years on, his passion for his chosen profession has intensified and he’s become a driving force behind the National Brain Injury Centre.

Nick studied psychology and was part of the first pilot course of eight people to study Social Psychology at degree level at the University of Kent.

It was then the army career was shelved. After successfully graduating with his first degree, Nick considered clinical psychology, starting as a nursing assistant with the NHS in Chichester. He later became therapy assistant at the Kemsley Unit at St Andrew’s Hospital, Northampton, where he has remained almost without break until now.

Nick said: “As a self-proclaimed geek, I loved the analysis of patients’ behaviour gained from plotting observations on to graphs. I spent my first year on the shop floor at the Kemsley Unit working in neurobehavioural rehabilitation.

“At the time this unit was unique, not only in the UK but in the world, in helping ABI patients with severe challenging behaviour. The close-knit team had a tangible pioneering spirit.”

Hitting the ground running At the beginning of Nick’s time at the Kemsley Unit in the early 1980s, the Psychology Department had only three members. All were engaged in pioneering work in the hospital –

developing services for very challenging patients with mental health problems, learning disability and ABI.

He said: “I felt privileged to be appointed the first ever assistant psychologist and be given the opportunity to learn from outstanding clinicians. This experience proved invaluable and helped me win a coveted and rare place to train as a clinical psychologist at the University of Glasgow, which enabled trainees to further develop skills in applied neuropsychology.”

Once qualified, Nick wanted to continue a career in neurobehavioural rehabilitation and subsequently returned to St Andrew’s where he remains.

National Brain Injury Unit takes shapeWhen Nick rejoined in 1986, the Kemsley Unit had just one ward of 16 patients, but demand and waiting lists were long. Over the years, the unit has expanded to several wards offering in excess of 100 beds and several separate care pathways, including those for adolescents, men and women, acute and slow stream rehabilitation. More recently, the service was rebranded the National Brain Injury Centre.

This huge expansion has been paralleled by an explosion in non-public sector services that also now offer neurobehavioural rehabilitation to people with an ABI and challenging behaviour that continues to prevent them from accessing main stream NHS services.

Nick and his colleagues have continued to build on the innovative programme first established at the Kemsley Unit and in developing this further so that greater numbers of patients can benefit from it.

The National Brain Injury Centre has been indirectly responsible for the growth of much needed specialist neurobehavioural services, many of which are based in the Northamptonshire area. Entrepreneurs behind these new services, and many of the key clinicians within them received excellent training working at Kemsley, before moving on to use these skills in establishing new units.

Reputation for excellence Recent analysis shows there are approximately 2,000 beds in the UK offering specialised neurorehabilitation. Just under 200 are for challenging behaviour and most of these are at the National Brain Injury Centre. Nick has helped maintain the reputation of this service as the leading provider of neurobehavioural rehabilitation in the UK, and the recent addition of a care pathway for adolescents means Kemsley is still leading the pack.

So, why has the unit remained the market leader? Nick attributes much of this to the consistent application of the neurobehavioural service model throughout its 33 year history.

He said: “The service still essentially works to the same ethos as it did when it opened in 1979, even if techniques have changed and the

Professor Nick Alderman, Clinical Head, Kemsley Unit

With invaluable experience as a neuropsychologist, this issue’s industry profile spotlights Professor Nick Alderman. He shares his passion on Acquired Brain Injury (ABI) in this field and a fascinating view of its past, present and future.

13

programme has become increasingly individualised. There are also more sophisticated interventions used and a greater number of trained neuro-psychologists who have influenced service development, implemented by clinical teams of the highest calibre.”

Driving force It is also now widely accepted that clinical neuropsychologists are an essential driving force within the rehab team. Once a patient is medically stable, they and their families will be faced by many other challenges attributed to how the brain has been rewired post trauma. These invariably include cognitive problems, mood disorders, reduced insight and awareness, and difficulties with inhibition and the regulation of behaviour – challenges that require specialist help from clinical neuropsychologists. Because of their highly specialised training, neuro-psychologists can carry out functional assessments and design treatment interventions that bring about change. Using conceptual frameworks, these are based on psychological models that attribute problems to brain injury as opposed to mental health. It was the application of these specialised skills that encouraged Nick to develop new methods

of applying neurobehavioural rehabilitation, which he has demonstrated bring about effective and meaningful change in people with ABI.

Exciting times ahead Looking to the future, Nick thinks it will be an exciting time for the development of neuro-rehabilitation services for younger people – something that is of desperate need. Many people who suffer a brain injury are very young but the number of units, offering specialist rehabilitation, remains too few. In the next 25 years, Nick expects more younger people to be treated sooner to give them a better chance of a more positive future.

He said: “A staggering number of offenders have sustained brain injuries. I’m hopeful that rehabilitation programmes, run within forensic services, will be evolved especially to meet the special needs of this population to help stop reoffending.

“The application of smart technology will also assist ABI patients to be less dependent on carers.”

Controversial approach He believes that further advances in pharmacological and medical treatment, in particular stem cell transplantation, will

lead to more positive outcomes for some patients. It is a highly controversial subject, but one that could lead to some incredible results as current advances look encouraging.

Future is bright Nick is excited about the future of neuro-psychology in regard to the treatment of patients with ABI and sees many young and up-and-coming people in his field who are really moving it on. One name he mentions is Dr Jenny Brooks, a clinician who Nick describes as intelligent, enthusiastic and full of great new ideas.

Nick said: “She is a good example of the new generation of clinical neuropsychologists who will lead the profession forward to the benefit of patient care."

“In the next 25 years, Nick expects more younger people to be treated sooner to give them a better chance of a more positive future.”

career highlightsNick was instrumental in the opening of the Elgar Unit, the new adolescent service at the National Brain Injury Unit. In 2002, he was awarded a Fellowship to the British Psychological Society. Nick also holds several academic appointments, including four at the level of Visiting Professor – a rare and distinguished honour.

“the application of smart technology will also assist ABI patients to be less dependent on carers.”

14 Feature/ ABI in the media14

ABI in the media: Real life vs fantasy

Movies like Kill Bill and Talk To Her paint an inaccurate picture of brain injury or being in a coma, according to matthew colbeck, PhD student at Sheffield University. He gives Cortext his view on the impact of misrepresentation in the media.

“many novels portray coma and brain injury as a fantastical state – something that is far from the reality of the situation.”

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How coma and brain injury is portrayed across the media and literature and the impact of any misrepresentations is the basis of Matthew’s thesis for his PhD in English Literature at Sheffield University. Matthew decided on this focus for a combination of factors. He had always noticed how many misrepresentations of coma there are in the media.

He said: “When I was asked to help a friend edit a novel based around a protagonist’s coma, I was interested to see the novelist had accurately researched the process of rehabilitation and coping with brain injury.

“This contrasted with several novels where coma and brain injury are often portrayed as a fantastical state – something that is far from the reality of the situation.”

Matthew did not know anyone with an ABI or who had suffered a coma when he started his research.

“However, I knew people with a neurological impairment and had observed the public’s reaction to them, often assuming they were drunk. This conclusion, I discovered, was also often levelled at those affected by brain injury.”

Work with Headway Matthew is also involved with Headway and sits on its board as a trustee member in Sheffield. He first made contact with Headway when he decided to set up a writing group to get members to write about their experiences of brain injury and coma, and approached Headway for help with participants.

By getting involved with Headway, Matthew understood how brain injury manifests itself and how the media represents this very differently.

He said: “It’s highly unusual that a person suffers a ‘bang on the head’, is struck by amnesia and then is suddenly cured after suffering a second blow to the head, as is often portrayed in TV programmes and films. I discovered the science of brain injury or coma was rarely confronted.”

Television and other media often show someone waking up from a coma, fully alert without going through the stages in between – like amnesia, confusion and rehabilitation such as speech therapy.

You will often see an ‘asleep-like-posture’ of those in a coma but in real life a patient is likely to have spasticity symptoms and contractures.

Matthew’s view of misrepresentation is also supported by a neurological study in the US, which looked at US and European films over the last 30 years, including Reversal of Fortune, Kill Bill and Talk to Her. Test audiences were used to evaluate the coma protagonist in the film, what percentage of them woke up, how patients appeared, etc. The subsequent report highlighted that misinformation did affect interpretation and a high percentage of the films were inaccurate. Only two out of the 50 films were deemed accurate – one of those being Reversal of Fortune.

Power of the written wordMatthew has studied many novels to assess misrepresentation, including The Coma by Alex Garland and Marabou Stork Nightmares by Irwin Welsh, which both represent coma as a fantastical dreamscape. Most analysing these books would agree that the audience perpetuates the inaccuracies because many of them are not affected by coma or brain injury.

Matthew added: “What’s more, it makes for good reading – novelists want to entertain. With coma, they see it as carte blanche to explore wider existential questions, through the creation of psychological dreamscapes, rather than through focusing on the scientific side of coma.”

However, Matthew has noted some literature does evidence a certain commitment to accurate research, which leads to positive representation, specifically Remainder by Tom McCarthy.

He said: “Clearly, the author took the time and effort to actually speak to coma and brain injury survivors, who are given credit in the ‘acknowledgements’ section of the novel.”

Sharing experiences As part of his PhD, Matthew started a writing group in Sheffield to encourage brain injury survivors to share their experiences. He worked with this group for six weeks, during which they expressed themselves in mostly autobiographical pieces that were then pulled together in a book entitled ‘Head-lines’.

All the writers were encouraged to find a place where they felt most comfortable to write. Some had support to facilitate this, especially those

with a frontal lobe injury, which can affect the creative part of the brain. The result is a chapbook, a short publication containing six different pieces of poetry and prose. All mostly autobiographical and are written not just about head injury, but about positive rehabilitation, the power of nature in rehabilitation, as well as other subjects.

The Write Way Head-lines was launched at Sheffield University to a very positive reception. A Facebook page called ‘The Write Way’ launched to coincide with the book launch, for people to show support of those affected by brain injury or coma.

Matthew said: “The contributors to the book found the writing difficult at times, but also very empowering. It granted them a conduit through which they could express themselves and expose their stories and also proved a cathartic process.

“There is always a danger these writers could become defined by their head injury, however most used the experience to write what they wanted, using it as a mouthpiece that they never previously had.”

Interestingly, it transpired that a head injury is not always a negative thing; it can open up a new world and bring about positive stories of disability, itself a rarity in the representation of disability as a whole.

Since starting the Sheffield writing group, helped in part by Sheffield University funding, regional Headway groups are keen to emulate the writing workshops. Ideally, Matthew would like to produce a national quarterly magazine with nationwide contribution, however, funding will be needed to ensure this runs effectively. It is possible that Matthew could help launch other groups that would mirror the success of the Sheffield writers' group.

Righting the wrongs Matthew’s long-term aim is to publish more books that are written by survivors, build a larger membership of the groups and work towards a national publication to get these voices heard.

He added: “Ideally, I would like to work with media companies to ensure correct representation occurs. This will also come about through monitoring, criticising and complaining about where they go wrong. It is true that people are drawn to tragedy on TV, in film or in literature, while never really wanting to know what that truly entails.”

As well as studying for his PhD, Matthew Colbeck is on the board of Headway. He started a writing group so survivors can share their experiences, which has resulted in a book. He launched the Facebook page The Write Way to coincide with the book launch, for people to show support of those affected by brain injury or coma.

“In a study evaluating coma protagonist, only two out of the 50 films were deemed accurate – one of those being reversal of fortune.”

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