Providing a traumatic
brain injury service
Louise Blackmore reflects on the past 15 years of dealing with a unique geographical challenge
I guess I should have always known that coming to the Highlands would be somewhat different. Seeing an ad in the property section of the local paper when I came for my interview made that abundantly clear: ‘Small cottage for sale, £6000, or would exchange for small fishing boat.’
Sounded great until I discovered it was 120 miles away from my base in Inverness. Just out of interest I had another wee look today.
‘Two cottages – buy one get one free - £99,000’
Bit more expensive but still not bad!
Some things do remain the same though. The Highlands is an area of outstanding natural beauty and it is huge. It presents a unique geographical challenge to providing services. So how exactly do you provide a service for patients with a traumatic brain injury in an area that is the size of Wales or Belgium? It is not uncommon for patients to travel roundtrips of over 240 miles to see me. They can travel by boat, plane, train, bus, car or on foot, and on occasions a combination of all of these. I have even had someone turn up on a tractor. It can be a complicated business just getting here, especially in the winter. And when they arrive they need to remember how to find my office. In recent months this has been more complicated too. Having spent many months, and in some cases years, helping my patients develop strategies for remembering to come to the green corridor, to my horror I discovered one day that the whole hospital had been painted magnolia. Remembering to come to the boundary between Zone 4 and 5 is not quite so easy when you have a brain injury! Needless to say I spend a lot of time wandering the corridors of Raigmore Hospital looking for patients who are lost.
Here in the Highlands we have around 700 patients a year discharged from Highland Hospitals following some form of head injury. In most of these cases, of course, patients will make good recoveries with minimal or no further input. Many, however, will be left with ongoing difficulties of mood, cognition and behaviour as well as physical changes. These in turn can have a major impact on their social, family and occupational functioning. They have difficulty making sense of how they and their lives have changed and for many rehabilitation in its widest sense is required. Patients who require neurosurgery usually go to Aberdeen Royal Infirmary before returning to our Rehabilitation Unit here in Raigmore. Others come to our Rehab Unit direct from other Raigmore wards once they are medically stable. Our Rehab Unit has eight beds and the most dedicated and friendly team of staff you could possibly work with. I started work in the Rehab Unit in January 1998. I quickly became aware of the fact that whilst the team in the unit were doing a great job, many of our patients were being discharged into their local communities with little or no ongoing support for them or for their families. It felt in a way that they were being beamed into big black hole of nothing. Many were becoming depressed and losing some of the skills they had developed in rehabilitation. I decided quickly that I would be in the big black hole too. I would focus on working with the patients once they had been discharged, and this is more or less where I am 15 years later. I work 0.5 wte attached to the Rehabilitation Unit. Whilst the majority of my patients have acquired brain injuries, I have other commitments too, seeing patients with a variety of conditions including multiple sclerosis, Huntington’s disease and an increasing number of patients with medically unexplained symptoms [see p.868 for more on this topic]. My case load is huge so I frequently have to review how to make the best use of my time.
Over the years I have worked I have of course seen many many patients. My aim has always been to assist them to find ways round their difficulties, adjust to how they have changed, get to know themselves as they are now, and if at all possible reach the ultimate goal of getting to like themselves as they are now too. For a long time many of my patients will say ‘I don’t want to be this person. I want to be the person I was before’. It is not always easy, but it is a privilege to work with them and to be part of their journey of recovery.
I have also felt over the years that I also have a role in helping others to understand about the nature of brain injury too. I have spent a lot of my time providing educational workshops for other staff, nursing homes, community support staff, voluntary organisations and others throughout the Highland region. I have also provided travelling brain injury awareness roadshows. One in particular was very successful. Held in one of our larger villages, the road show was well advertised with adverts in the local paper, announcements on the local radio station and posters. It was open to people with brain injury, their families, carers and also to anyone else with an interest in learning more about the difficulties that people with brain injury encounter. Around 40 people turned up. Many were completely unaware that others in their locality had experienced a brain injury, and several years later many of these people still meet and support each other.
The opportunity for people to meet others with brain injury is invaluable. I sometimes tell patients that although I try my best to imagine what having a traumatic brain injury is like it is only other people in the same position who truly understand. When I first started working here in the Highlands there was a small Headway group in Inverness run by a very dedicated team of people with brain injury and their family members. It seemed to me (and it still does) that people who went to Headway on balance felt better faster. I felt, therefore, that it was a good use of my time to provide support to Headway also. I encourage my patients to attend Headway, and over the years it has rapidly expanded. We now have satellite Headway groups in Fort William and Caithness, and we are hoping to there will be further groups in Ullapool, Skye, Golspie and Oban in the not too distant future. Last September we launched the Headway group in Caithness and had locally caught lobster with our lunch – another way in which the Highlands is slightly different – delicious it was too!
The other issue that has been crucially important and sometimes challenging over the years has been maintaining good communication. It is hard to believe that 15 years ago we only had one computer in the department and virtually no one had an e-mail address or mobile phone. Even with the advances in modern technology though communication can still be difficult. Getting hold of a case manager who is out and about in the northwest coast where mobile reception does not reach is not easy. It can also be isolating for staff working in remote areas. We now have a Neuro Email Forum for staff from any discipline who share an interest in working with patients who have neurological conditions. There are 160 members on this forum, so the interest is there. We need to continue to find ways of working better in a ‘virtual team’ sharing knowledge, goals and ideas. In the case of ABI this virtual team is just coming together now, but further discussions as to how it will work are still in the pipeline.
And will the next 15 years see much of the same? In some ways the answer to this I guess is Yes – more patients, more training and roadshows and more support to Headway. In other ways, though, I think it will change. With an ever increasing caseload I suspect more time will be spent in consultancy. I also suspect that over the next few years the NHS will make more and more use of tele-health. It makes sense for remote and rural areas like the Highlands to be at the forefront of this.
So back to my original question – how to provide a brain injury service for an area the size of Wales or Belgium. I guess over 15 years it has taught me that you need creativity, communication, fantastic colleagues and amazing organisations like Headway. And on the difficult days is it worth it? Would I do it all again? Of course I would! Every so often a patient will come in to office and say ‘I am happy with who I am now’. That makes everything worthwhile and for that moment in time at least it makes me the happiest psychologist in Scotland.
With grateful thanks to all my patients, their families, my colleagues and Headway and also to Professor Dave Peck, Dr Mike Dow and Dr Caroline Dobson who looked after and inspired me in the early days of my career.
Working with young people
Matthew Fish describes the psychological aspects of his various youth work roles
I am currently a youth worker within Plymouth City Council, and have been a youth worker for the last seven years. Since completing my psychology degree in 2005, and having worked in some diverse youth work environments, the impressions that mental health can leave in the various contexts of a young person’s life has always captured my attention.
I began my paid employment within Devon Youth Service, which involved staffing generic drop-in sessions for young people aged between 13 and 18 in Tavistock, and then went on to work in a similar generic youth drop-in setting for Plymouth City Council. Within the context of an open-access and generic session, young people just turned up, and would engage with youth workers in social settings, perhaps playing pool, cooking or fashioning art work, among other activities. My interactions with young people recurrently included discussions around their social, familial and educational relationships. I would also respond first-hand to conflicts and tensions arising from young people’s relationships or from their emotional and behaviour difficulties. It was within this generic youth work environment, underpinned by some of youth work’s core values (e.g. starting where young people are at; being young people led; voluntary and focusing on empowerment) that I realised the contribution that youth work can accomplish towards reinforcing social and emotional competencies in young people.
After completing an MA in youth and community work, I undertook some work for the Prevention Team within the Youth Offending Service in Plymouth, with my role being around preventing young people at risk of crime from becoming further entrenched in criminal behaviour. This role was much more targeted, and I worked with young people on a one-to-one basis, after creating intervention plans aimed at reducing specific offending behaviours. What I encountered was often an mixture of aggressive and violent behaviours within the multifarious contexts of their lives. Within this role I became sympathetic to psychodynamic concepts, particularly in working with suppressed and unconscious beliefs that were often fuelling aggressive behaviours. Espousing a youth work approach within this role saw me employing skills to foster positive relationships with young people, to create a climate where greater self-awareness can be cultivated, through a trusting fellowship. The value of this approach with adolescents is overlooked, as although adolescents’ identity is considered less established than the average adult, and their self-awareness less concrete, the approach can prevent cognitions becoming buried beneath an adult’s life experiences, thus preventing more serious psychological disturbances developing.
Soon after, I joined the Intensive Support Team, again within Plymouth City Council. The focus of this role was to prevent homelessness amongst young people aged 16–17 who were either homeless or at risk of homelessness. Referrals would range from being non-urgent, where the young person would still be at home, but were at risk of homelessness, to significantly more urgent where the young person may have already been kicked out of home. These referrals were often the most challenging, as we would have to respond immediately, and would meet a young person and their family right in the thick of significant emotional and familial turmoil.
There were a considerable variety of purported reasons for why a young person was being made homeless, with a breaking of rules and boundaries being common. However, investigation often revealed complex and multifarious contributors to homelessness, which often included considerable mental health problems within the family. Common diagnoses were of schizophrenia; personality disorders; anxiety and depressive disorders; stress; and other arguably undiagnosed ‘disorders’.
The way in which we responded and dealt with these situations were aligned to concepts from systemic theory, and the idea of a family’s homeostasis being threatened by adolescents changing identities seemed particularly pertinent in many situations. Responding to families from a neutral perspective and looking at the situation in terms of the wider family and social system certainly resulted in the most successful outcomes, and I learnt to adopt similar techniques used in systemic therapy, such as reframing, and using solution-focused approaches.
I am currently still working with adolescents within Plymouth City Council, but have recently embarked on work with young people who have been returned home by police after being reported missing. Our role is to follow this up, investigating the motivating factors for running, and preventing situations of significant risk. As I found in previous roles, there are a wide variety of reasons why young people go missing, which can include sexual exploitation, substance misuse, and abuse at home. However, again as in previous roles, the noticeability of mental health and psychological disturbances is consistent, with self-harm behaviours seeming to be particularly common. Concepts from attachment theory seem to be markedly conforming for this role, with many young people having poor or non existent relationships with their parents. A significant aspect of this role will be tackling some of the negative offshoots that arise from insecure attachments, such as negative self-concepts, as well as providing opportunities for young people to form new attachments.
What has become transparent and unquestionable in my experience is the significant contribution that youth workers make towards preventing and even treating psychological disturbances in young people, often without realising they are doing so. I find it frustrating that this contribution is not more recognised nationally. I would like to see greater collaboration between youth workers and the mental health profession, with increased opportunities for youth workers to receive clinical supervision and training. To its credit, Plymouth is forward thinking in its approach to this, with youth workers having had training in CBT and family therapy, and other general training run by CAMHS and Broadreach. Some youth workers, including myself, are even receiving clinical supervision. This approach needs to continue to be developed, and also be adopted by other authorities, as its effects will give youth workers greater therapeutic impact on young people’s lives, plus a greater voice in justifying the youth work profession.
In praise of placement
Isabelle Butcher is an undergraduate student who found one aspect of her degree course particularly useful in preparing for the future
Cardiff University gives the opportunity to complete a four-year undergraduate psychology degree with third-year placements that contribute to overall degree marks. I didn’t have a clear idea of my future job, but it looked a useful experience, so I applied to several placements. In September 2012 I found myself Manchester-bound.
My placement was as a research assistant based in the Division of Clinical Psychology, in the School of Psychological Sciences, University of Manchester, supervised by Dr Katherine Berry (Senior Lecturer and Clinical Research Fellow). It lasted from September 2012 until June 2013.
Placements can change your viewpoint, developing both personal skills and psychological knowledge. For instance, I had to arrange to meet participants for follow-up interviews as part of a project that Katherine was running. This requires flexibility, patience and the ability to create rapport with the participants. This was particularly important as they were being followed up over several time points and we needed to ensure they continued to participate in the project.
The whole experience has positively affected my perception of psychology in today’s world. In the first two years of my degree I simply didn’t understand how psychological research impacted on real people. You access a great deal of academic research through lectures, tutorials and reading; as a research assistant collecting data, I began to see the effects it might have.
These practical effects also became clearer when I was invited to attend and take notes for several parent and patient involvement (PPI) meetings, which researchers in the division were organising. PPI is becoming increasingly popular. They involve service users in research projects from before they have been funded throughout their course. The PPI meetings that I was involved in were for the full range of the division’s research projects including suicide, schizophrenia, parenting and self-harm.
The first part of my degree didn’t really prepare me for how to gather and analyse qualitative data. During my placement, a research fellow in the division and Katherine listened to interviews that I had conducted and gave feedback as well as tips on improvement. The skill will be useful in my final-year project if I choose to obtain qualitative data, as well as in any later research career or taking a postgraduate qualification.
It is likely to be especially important as qualitative data is becoming more and more popular with researchers, often to obtain feedback after projects have been completed. It was useful to get practice in analysing that sort of qualitative data using the Nvivo programme.
I organised two seminars as part of a seminar series, on ‘hearing voices’ that Katherine and another researcher at Sussex University were organising. Being able to organise events (of whatever kind) seems to be a critical component of anything I might undertake in the future, either in academic or commercial jobs, and it was something
a degree rarely covers. So I was lucky to get this opportunity.
As my placement drew to an end at Manchester, I applied to the BPS summer Undergraduate Research Assistantship Scheme with Katherine Berry as my supervisor and was awarded funding for this. I conducted a project titled ‘The impact of a ward-based intervention on violence and aggression in people with psychosis:
A case note review’ from July until August 2013. This will be on display at the BPS Conference in May 2014.
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