First Hand Experience: Good and bad responses to self-harm from health professionals

In this frank and open post, Dr Pooky Knightsmith talks about self-harm and shares her own experiences, both good and bad, of responses from health professionals.

This post was originally shared on Pooky’s blog, here

 

Whilst it’s beyond horrible going through what I’m going through at the moment, I am learning a huge amount that will inform and motivate my work when I am better. Today I have been learning, first hand, about the stigma that surrounds self-harm. I have one very negative and one very positive story to tell.

I had an appointment with my psychologist yesterday, and he was concerned about my self-harm. Things have spiraled this week and he was concerned by the extent of some of my injuries. He felt they needed suturing and asked that I seek medical advice. I was not keen, but agreed to go.

I attended a local walk-in clinic today.   The experience was not good. On arrival, I was asked, in front of a busy room full of people, my reason for attending. I spoke quietly and was made to speak up and repeat myself more than once. The receptionist was harsh and cold, compounding every fear I had had before turning up that I may be met with stigma by health professionals (I hear stories of such stigma often in my work with young people). I sat, on the verge of panic, for 45 minutes before it became too much and I decided to go elsewhere. The receptionist questioned me loudly again as I left about why I was there, and when I asked for advice about a better time to return she was unhelpful and cold.

Unsurprisingly, the whole situation left me very, very upset, angry and ashamed; the urge to self-harm was still incredibly strong.   Thankfully, my husband (Tom) supported me through it. He suggested we go elsewhere as he knew I wanted to keep my promise to my psychologist, so I went to the GP surgery and was able to book an emergency appointment.

This experience was 100% different. The receptionist was kind and understanding. She dealt with my request matter-of-factly but also swiftly, sympathetically and quietly. She remembered me when I returned an hour later for my appointment looking worried and shaky, and she checked me in and pointed me to the waiting area (you usually check yourself in).

Already things were better. The receptionist told me exactly how long I’d be waiting, which wasn’t long. The GP was hugely understanding; she remembered me from the week before and asked after my grandfather, whose appointment she’d remembered me from. She recalled that he had just moved in with me and I was leading on his care, and she suggested a need for me to care for myself first. She looked at my injuries and discussed them with me without judgement, only with care. She explained which ones should have had sutures, but also told me that it was too late. She told me what to do differently next time so as to access the care that my wounds needed, and reminded me (as my psychologist had) that, whilst I felt I deserved to scar and was not motivated to aid healing now,  I needed to accept that this might change and a little more care with any future wounds would leave me with more options.

She also noted that I was shaky, and that this was because she thought I was developing an infection in some of my wounds. She prescribed antibiotics which I must take four times a day with no food for 45 minutes before or after. She noted my anorexia and spoke with me matter-of-factly about whether the antibiotic regime was likely to be harmful to my meal planning. We discussed how it might work. At no point did I feel ashamed or embarrassed, or that I needed to hide anything.

The GP was kind, caring, reassuring and direct. I felt looked after. I was not made to feel ashamed and I understood for the first time the extent of my injuries, which was a bit of a wakeup call.

So, a good experience and a bad experience.

But imagine that I was not me. Imagine I had not been stubborn in seeking help because I had promised Tom and my psychologist. Imagine I had not had the relentless support of my caring husband and wider support network. Imagine I was a scared child. What are the chances I would have tried again when the help was not appropriate the first time? I think the chances are very slim. I think I would have walked away and never returned. I would have walked away with infections developing and no insight into how to better care for myself in future.

So, what next… I have given Tom my blades. He is keeping them, and if I need them he will give them to me if he is not able to help me work through the situation. I feel confident that he will always be able to help me – and could have helped me in the past, save that I did not have the wherewithal to ask in those very difficult moments. Now I will have a motivation to ask and to accept his amazing support. It is a lot to ask of a husband, but he does it willingly. I do not underestimate how lucky I am.

Today has taught me first-hand just how much difference our experiences with healthcare professionals can make to our willingness and ability to access care. This is not a job I am well enough to tackle right now, but you can bet your bottom dollar it is going on my to-do list for when I am feeling better. Improving awareness and understanding of self-harm is one of the jobs I have done most often and most successfully in the last 24 months, but I now need to think how best to reach as many health professionals as possible. All suggestions gladly accepted…

As you’ll have noted, I’m working hard to be open and honest about my current battles with my mental health. I hope that this will prove a helpful insight for my network and, whilst I am regretfully too unwell to fulfill many of the engagements in my diary, I hope that you will support me on my journey back to health and help me to learn lessons along the way which will inform my future mental health work.

 

Dr Pooky Knightsmith completed her PhD in child and adolescent mental health at the Institute of Psychiatry, London, where she specialised in developing practical strategies for supporting self-harm and eating disorders in schools and other non-clinical settings. The strategies that Pooky advocates through her freelance work are all developed as a result of direct consultation with school staff and students, and she also seeks inspiration from her clinical colleagues at the world famous Maudsley Hospital, adapting and simplifying evidence based approaches for use by non-specialists. In addition to freelance training, speaking and writing, Pooky is currently the mental health and emotional wellbeing advisor at the PSHE Association, an associate trainer for the Charlie Waller Memorial trust, a trustee of Beat, the eating disorders charity and a trustee of the Kidstime Foundation which supports children of parents with mental health issues.

You can find out about Pooky’s book Self-Harm and Eating Disorders in Schools here

Or to find out more about Pooky’s work, visit her blog here

FASD: A life-long neurodevelopmental disability that needs to be SEEN

Liam Curran is a PhD INDI Social Sciences student at Concordia University, Montreal, Canada. He has over 25 years’ experience working with young people in residential homes, child and family social work and children’s disability services social work, and is also a member of the McGill University Centre for Research on Child and Families (CRCF), Montreal, Canada. In this post, he explains the biggest obstacle for many children with FASDs and those supporting them – having their disability acknowledged so they can access much needed support, and suggests how we can improve diagnosis and support for people with FASD.
You can find out more about FASD, how it affects individuals, how it can be identified, and how best to support those with FASD in Liam’s co-authored book, 
Understanding Fetal Alcohol Spectrum Disorder: A Guide to FASD for Parents, Carers and Professionals.

A life-long neurodevelopmental disability that needs to be SEEN

It has long been established that Fetal Alcohol Spectrum Disorders (FASDs) have a significant impact on all aspects of child welfare provision. Perhaps one of the most recognised publications of the modern times was developed on the evidence of eight children suffering from ‘failure to thrive’ in the Washington Child Welfare system, who were taken by social workers to the clinic of paediatricians, Dr David Jones and Dr Ken Smith. The rest is well known thanks to the paper written by Smith & Jones which became a seminal moment in society’s understanding of fetal alcohol, launching a robust level of research and public interest around the world.

Understanding Fetal Alcohol Spectrum Disorder coverThere is still a compelling need for child protection and welfare services to recognise the burden and impact of FASD on the services they provide. Recognition can aide the prevention of this disability, when allied health personnel become champions of change by imparting the ‘no safe level of alcohol consumption in pregnancy’. When responding to this ‘compelling need’, it is imperative that we consider our current principles surrounding a child’s security and overall development. In intervening for cases of health-related or educational neglect, it is also important to consider the neurodevelopmental factors associated with FASD. As stated in the opening paragraph, the eight children taken to the Washington clinic in the early 70’s were initially labelled with a ‘failure to thrive’; neglect and FASD can be finely intertwined, and require astute skills for Social Work personnel to differentiate.

Perhaps intervention by social workers is required when the caregiver cannot control/manage the behaviour of the young person in their care. FASD has long been seen as a significant concern in the area of a child’s development; problems identified in these children include immaturity leading to behavioural, social and academic challenges when set against the normal developmental milestones of developmental expectations. Poor self-regulation and sensory integration is equally well acknowledged within this cohort of children and such developmental deviation and subtle abnormality can have a significant impact on how the child manages the day to day expectations within a regulated society. Sadly, these children commonly present in child welfare intake systems, but their neurodevelopmental/neurocognitive disability is rarely seen and acted upon. Both neglect and behavioural problems are usually among the two highest categories of concern referred to state systems of child welfare and protection, and it’s within these two categories that FASD is most common.

It is also important to acknowledge the cumulative effect of yearly estimates of FASD births and how this impacts on child welfare services. In the UK, the yearly estimates of FASD births is set at 7,000. As child welfare services are delivered for children age 0-18, the cumulative number of births would be 126,000 across this age span of childcare provision. With a large body of evidence pointing to 50-60% of children born with an FASD condition entering the child welfare services, there can be no argument that FASD is having a disastrous but largely unseen impact on the service. Equally, what research has repeatedly shown and demonstrated is that the prevalence rates of FASDs lands on both our fostering and adoption communities. This in turn will lead to a fiscal burden carried by the child care providers of such services, demonstrated again in a large body of research findings.

Professional acceptance of FASDs’ neurodevelopmental and neurobehavioral presentation is vital to providing the support needed to these children and caregivers. The range of psychosocial interventions that have a proven success rate with these children are required to be common place in social work education modules of child & family teachings. Equally, these skills need to be honed in competency based education provided by employer organisations as part of service development goals.

How can we improve the trajectory and prospects of children suffering prenatal alcohol exposure?

  • National policy advisors need to implement FASD as a recognised disability within disability legalization and policy developments.
  • Currently available early intervention specialist services need to have the skills and training to Identify, Screen & Refer children for clinical assessment
  • Improve the service accessibility of individuals and their caregivers in accessing state services of supports.
  • FASD competency education should become mandatory in state services of professional development protocols.
  • Link current state education strategies on alcohol harm should be altered to firmly include the prevention and understanding of FASD within society.
  • The Social Work profession needs to reclaim, and become a stronger advocate for, the psychosocial needs of both the individuals and caregivers of those living with this disability.

There is a pressing need for this unseen disability to be recognized and acted upon in all aspects of child welfare interventions. Failure to do so is casting these children into a range of secondary disabilities, where they struggle in life with homelessness, mental illness, addiction and clashes with the criminal justice systems.  How can this be achieved?

In order for social work professionals to become stronger advocates, they need to be supported in their skill development on a number of levels.

  • The disability of FASD needs to be fully taught within social work undergraduate education by the university bodies responsible for developing future social workers.
  • All child welfare and child protection service providers who are responsible for professional development of their workforces to commission professional FASD education modules from providers qualified to deliver such education
  • Equally for Social Work to function effectively in responding to FASD, they need FASD as a health disorder to be understood by allied health professionals, policy makers and the public in general.

You can find out more about Liam’s book Understanding Fetal Alcohol Spectrum Disorder: A Guide to FASD for Parents, Carers and Professionals, read reviews and order your copy here.

Six steps to finding balance in busy lives

It is important to know that life imbalance is one of the biggest causes of stress in the western world; consequently understanding why we experience imbalance in our modern lives, and finding strategies to help you overcome it, is very useful! Teena Clouston shares 6 steps to finding balance in busy lives from her new book Challenging Stress, Burnout and Rust-out.

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So what is burnout and rust-out?

Burnout and rust-out are caused by long-term stress; burnout is marked by exhaustion and rust-out by apathy and disengagement. Which of these we experience and when, is variable, dependent on the unique individual and his or her circumstances. Stress and imbalance can be linked to some specific personality traits and thinking patterns that we can unconsciously adopt to manage the daily grind but which, unwittingly, can maintain our state of imbalance and levels of stress.  For example, people who rush around like busy bees, or those that put up with or make excuses for their busyness and overwork are all using different strategies to deal with life conflicts, pressures and time scarcity, but sadly, are failing to diminish stress. Alternatively those that fight back and overcome these pressures seem to be able to live a far more balanced and healthy life because they dare to challenge the status quo and take time to do things they find meaningful or enjoy doing, irrespective of the pressures of work or general over-busyness.

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Resistance is not futile

 

6 steps to achieve a healthy work-life balance

There are several different ideas shared in the book but if I had to choose 6 they would be:

  • Gain some autonomy over your workload
  • Review and adapt your views and attitudes about work so they become congruent with what you really want in life
  • Share your daily responsibilities with others
  • Do something meaningful everyday
  • Live in the moment
  • Walk in nature

These techniques are not a cure-all in terms of work-life or indeed, more general life balance. That’s because, in reality, they all need you to put in a lot of effort in terms of making changes in how you live your life everyday, and that is not easy. For example, if you are going to use mindfulness techniques to try to focus on the moment or cognitive behavioural strategies to change your thinking or attitudes about life balance, then you have to practice that regularly and put some work in every day. That said, you do need to start somewhere and from small moves big things can grow and consequently, with practice, you can really change your sense of balance, your quality of life and ultimately, your well-being; thus practice may not make perfect, as the saying goes,  but it can make life just a little richer and more satisfying.

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Illustrations by Peter Cronin, ARSMA.

Teena J. Clouston is a Reader in Occupational Therapy and Life Balance at the School of Healthcare Sciences at Cardiff University, UK. Over the last ten years, her research interests have become focused on the meaning and experience of lifestyle balance, and her PhD specifically studied the influences of paid work on finding balance in everyday life. Learn more about Challenging Stress, Burnout and Rust-out here.

Mental health support made simple

Following the second edition release of Introducing Mental Health, authors Connor and Caroline Kinsella provide insight into taking a more global and simplified approach to mental health support in the fully revised and updated second edition.

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We wrote the original Introducing Mental Health: A Practical Guide to make the very complicated seem a little bit simpler and to help front-line workers do what often seems like the impossible. It’s not an easy role at the best of times, but much has happened in the nine years between editions to make the job of mental health care even more difficult than it was in 2006.

As thoroughly well behaved and professional writers (ahem) we chose not to fill the book with a long list of all that is wrong with UK mental health services. After all, most of our British readers need no reminders of the savage cuts, dwindling resources and disappearing in-patient beds that are now a feature of UK mental health.

But while it’s all very well to moan incessantly about our own back yard, we looked to the developing world for inspiration to update the simple, straightforward approach to mental health care embodied in the first edition. We’re lucky enough to have as a close friend one Vikram Patel, the Foreword writer of both editions, who is also the director of the Centre for Global Mental health, London. Vikram has spearheaded the global mental health movement which has helped make mental health a priority issue in those parts of the planet where malnutrition, malaria and HIV have traditionally demanded resources that truly put our own budget cuts and resource slashing into perspective. He is now on Time Magazine’s ‘World’s 100 Most Influential People’ list and we met up with him just as he had been interviewed for BBC Radio Four’s excellent The Life Scientific series.

It was a little strange sitting in a London pub with an old friend who is now the psychiatric equivalent of Kim Kardashian, albeit with a rather more worthwhile contribution to the world. While western psychiatry remains bound by an ever increasing list of obscure diagnoses, pharmacological treatments and reliance on highly trained professionals, the global mental health approach is a means of delivering care and support to communities without the need for complex resources, vast infrastructures or highly qualified personnel. Under this guise, mental health support is largely delivered by local people who, to put it quite simply, work with people not symptoms. In a word, it’s a very, very simple model of mental health care. And it works.

Psychiatry is, after all, a relatively straightforward science. It doesn’t take a master’s degree to recognise  when someone is severely depressed or saying bizarre things or taking an hour to leave their house because all the windows and doors need checking several dozen times. But supporting people through mental ill health can be anything but straightforward, and with qualified professionals and NHS facilities becoming ever more scarce, we now rely on police and prison officers, accident and emergency staff, housing support workers and (increasingly) friends and relatives to deal with our most needy and distressed people.

And while the poorest parts of the world begin to develop simple low-tech support systems that make optimal use of professional expertise combined with common-sense and the local knowledge of communities, the global mental health approach starts to look a lot like the sort of system that in many ways we in the UK are adopting by default.

We’ve written Introducing Mental Health twice, in both editions reflecting the many different scenarios and types of worker with whom we have worked in both clinical practice and training. We haven’t ignored the huge advances in the science of genetic and biological origins of mental illness, and have tried to make the science accessible to all. After all, there aren’t many people who would guess how much their Chinese takeaway has in common with the latest explanation of psychotic illness*. But above all we’ve strived to learn from Professor Patel and global mental health how this is above all a social issue, and how all of us have a part to play in helping our community’s most distressed and vulnerable people. It’s really surprisingly simple.

* Sorry. You’ll have to read the book to find the answer.

 

Caroline Kinsella has been a registered nurse since 1980 and has specialised in working with offenders and individuals with severe mental health problems. She has a Master’s degree in Forensic Mental Health from St Georges Hospital Medical School and is currently working with the Dorset Inreach Team as a mental health nurse assessing and care co-ordinating the needs of offenders in several Dorset prisons. Both Connor and Caroline live in Dorset, UK.
Connor Kinsella trained as a mental health nurse and has considerable experience of working with mentally ill people in both in-patient and community environments. Since 1998 he has designed and facilitated training for a wide range of services in health and social care. He writes a well-regarded blog called The Stuff of Social Care and has contributed to The Guardian’s Social Care Network.

To learn more about Introducing Mental Health click here.

 

Music therapy and dementia care – it’s now time to win friends and influence people

Shibley Rahman completed his PhD in frontotemporal dementia at Cambridge University, commencing a lifelong interest in the timely diagnosis of dementia. In this article he argues for more high quality research into the possible benefits of music therapy for people living with dementia; as well as making the case for the development of dementia care strategies which include the vital insight of people trying to live well with dementia today, so we can improve the experience of care for the many people in future who will receive a diagnosis of dementia.
You can learn about Shibley’s book,
Living Better with Dementia, here

It won’t have escaped you, hopefully, that the five-year English dementia strategy is up for renewal at any time now. The last one ran from 2009 to 2014.

Probably the usual suspects will get to command the composition of the new one. “Dementia Friends” has been a great initiative which has taught at least a million people so far about some of the ‘basics’ about dementia, but this ‘raising awareness’ is only part of a very big story.

In my book Living Better with Dementia: Good Practice and Innovation for the Future, about to be published by Jessica Kingsley Publishers, I argue that it is the people currently trying to live better with dementia who should be the ‘champions’ for the future. I believe strongly they should drive policy, not ‘leading Doctors’ or senior members of big charities.

My reasoning is as follows.

The population at large can be thought of as consisting of many people, represented below as dots. Networks

In a ‘cohesive’ (close) network such as A, members in the network are connected in close proximity. This builds trust and mutual support, discourages opportunistic flow of information, facilitating communication but minimising interpersonal conflicts. A cohesive network might be the hierarchical network of medical professionals.

A ‘sparse’ network (C) is effectively opposite to cohesive networks; but let’s say for the purposes of my example C consists of people with an interest in non-pharmacological interventions in dementia, including unpaid family carers.

In bridging networks, the ‘bridge’ (B) acts between disparate individuals and groups, giving control over the quality and volume of information exchange. I think of politicians such as Debbie Abrahams MP and Tracey Crouch MP, and the All Party Parliamentary Group on dementia at large, as people who can act as the bridges. These people are pivotal for policy formation.

I devoted a whole chapter of my new book to promoting leadership by people aspiring to live better with dementia.

Having all these people involved will improve the thought diversity and relevance of the new strategy for people actually living with dementia

We are currently in the middle Music Therapy Week 2015, dedicated to raising awareness about how music therapy can improve the lives of people with more progressed dementia. It’s no accident I’ve devoted the bulk of one chapter in my book to explain the brain mechanisms behind why music has such a profound effect on people living with dementia.

We, as human beings, all react uniquely to different music – there’s every reason to believe that certain people living with dementia, whether in the community, at home, in residential home, or a hospice, in other words wherever in the “dementia friendly community”, can hugely benefit from the power of music.

According to NHS England;

“Over the next five years and beyond the NHS will increasingly need to dissolve these traditional boundaries. Long term conditions are now a central task of the NHS; caring for these needs requires a partnership with patients over the long term rather than providing single, unconnected ‘episodes’ of care.”

In Rotherham, GPs and community matrons work with advisors who know what voluntary services are available for patients with long term conditions. Apparently, this “social prescribing service” has cut the need for visits to accident and emergency, out-patient appointments and hospital admissions.

Today sees a wide-ranging, open discussion of music therapy and dementia in Portcullis House, in Westminster. Prof Helen Odell-Miller, Professor of Music Therapy, Director of The Music Therapy Research Centre and Head of Therapies at Anglia Ruskin University, presented significant research findings at the meeting.

I feel music is not being given a fair ‘crack of the whip’ in the current policy. The first English strategy,  “Living well with dementia: a national dementia strategy” , was initially launched by the Department of Health, UK in order to improve ‘the quality of services provided to people with dementia . . . [and to] promote a greater understanding of the causes and consequences of dementia’ (Department of Health, 2009, p. 9).

We could have done, I feel, so much more on research into music by now. We could have done much more to increase the number of music therapists in England by now. Maybe some of this is due to ‘parity of esteem’, which has seen mental health play ‘second fiddle’ to physical health.

There are, however, glimmers of hope though, I feel. For example, it was last year reported in the Guardian:

“Overseen by Manchester University, it is part of a 10-week pilot project called Music in Mind, funded by Care UK, which runs 123 residential homes for elderly people. The aim is to find out if classical music can improve communication and interaction and reduce agitation for people in the UK living with dementia – estimated to number just over 800,000 and set to rise rapidly as the population ages.”

Accumulating evidence shows that persons with dementia enjoy music, and their ability to respond to music is potentially preserved even in the late or severe stages of dementia when verbal communication may have ceased.  Musical memory is considered to be partly independent from other memory systems. In Alzheimer’s disease and different types of dementia, musical memory is surprisingly robust, and likewise for brain lesions affecting other kinds of memory.

Given the observed overlap of musical memory regions with areas that are relatively spared in Alzheimer’s disease, recent findings may, actually, explain the surprising preservation of musical memory in this neurodegenerative disease. Jacobsen and colleagues (2015) found a crucial role for the caudal anterior cingulate and the ventral pre-supplementary motor area in the neural encoding of long-known as compared with recently known and unknown.

That’s why I believe we should support the British Association for Music Therapy (BAMT), the professional body for music therapists and a source of information, support and involvement for the general public.  The title music therapist can only be used by those registered with the Health and Care Professions Council. So there is regulatory capture, if not corporate capture.

This year’s campaign by the BAMT focuses on the instrumental role music therapy has to play in supporting people with dementia and those who care for them. Indeed, the current Dementia Strategy acknowledges that music therapy, as well as other arts therapies, ‘may have a useful role in enabling a good-quality social environment and the possibility for self- expression where the individuality of the residents is respected’ (Department of Health, 2009, p. 58).

Leading research has suggested that music therapy can significantly improve and support the mood, alertness and engagement of people with dementia, can reduce the use of medication, as well as helping to manage and reduce agitation, isolation, depression and anxiety, overall supporting a better quality of life. But very recently Petrovsky, Cacchione and George (2015) have found that there is “inconclusive evidence as to whether music interventions are effective in alleviating symptoms of anxiety and depression in older adults with mild dementia due to the poor methodological rigor”. This reinforces my view that service provision will only be markedly improved if we invest in high quality research, as well as the allied health professionals who can offer high quality (and regulated) music therapy as clinical service.

Living Better with DementiaAs I argue in my new book, “Dementia Friends” is great – but we’ve gone way beyond that now. The “Prime Minister Dementia Challenge“, I feel, showed great leadership in prioritising dementia as a social challenge, and the “Prime Minister Challenge on Dementia 2020” follows suit.

Being honest, we haven’t got a good description of what ‘post diagnostic support’ means, and therefore what it precisely looks like, for dementia. But one thing that is very clear to me that we need to invest in the infrastructure, including research and service provision, to implement living better with dementia as a reality in England. But I remain hopeful that my colleagues in the music therapy world will be able to win friends and influence the right people.

Find out more about Shibley’s book, Living Better with Dementia, read reviews or order your copy here.

There is an alternative if you want people to live better with dementia

Shibley Rahman completed his PhD in frontotemporal dementia at Cambridge University, commencing a lifelong interest in the timely diagnosis of dementia. In this article he explores some of the work being done to reduce reliance on medication and increase our understanding and use of non-pharmacological interventions; looking to the future of dementia care.
You can learn about Shibley’s book,
Living Better with Dementia, here

Currently, Alzheimer’s Disease International estimate that there are 47 million people around the world living with dementia. Whilst the policy planks of ‘prevention’ and ‘cure’ continue to attract attention, there is concern amongst many that the people trying to live better with dementia don’t get caught behind.

Gordon-Swaffer-_Living-Better-w_978-1-84905-600-7_colourjpg-printThere’s been a concerted effort to look at the cost of drugs in the NHS in recent times. ‘Innovative drugs’ have been a big deal in the service, and it is reported that new innovative drugs approved by NICE between 1999 and 2004 added £800m a year to the UK drugs bill.

Irrespective of the cost of the drugs budget in England, one is right to query whether patients are being given the appropriate treatment based on the current best practice. A temptation of a medical doctor to prescribe a ‘magic bullet’ can easily explain away the ‘over-medicalisation of illness’, leading the Academy of Royal Colleges justifiably to take action earlier this year.

There are probably over 400,000 older people living in care homes, and possibly dementia ‘affects 80% of care home residents‘. With the scale of statistics, one is bound to be concerned at the potential volume of inappropriate antipsychotics scripts for people living with dementia. Prof Sube Banerjee helpfully reported on this issue in 2009 for the Minister of Care Services at the time.

Every chemical medication has its side effects. I am always impressed with the ease at which the pharmaceutical industry is able to market their drugs, given that there are 1000 billion nerve cells in the human brain all connected with one another directly or indirectly in various ways.

With so many different functions of the human brain, such as memory, attention, perception, language or planning, to name but a few, it has been a difficult task to work out which particular ‘hubs’ involving parts of the brain are particularly involved in certain functions.

The exact characterisation of wellbeing in dementia remains an active area of discussion. For example, five psychological needs had been described by Tom Kitwood – comfort, attachment, inclusion, occupation and identity. Identity itself has been subject to volumes of work, some empirical, but apparently the need for identity ‘involves maintaining a sense of continuity with the past, and some kind of consistency in the present life’ (Kitwood, 1997, p. 20).

In my book Living Better with Dementia: Good Practice and Innovation for the Future, identity is a really big deal. I suggest a possible way in which the human brain might be able to reactivate “sporting memories” from his or her own past. I also describe the powerful effect that music can have on the wellbeing of a person living with dementia.

Also, pervasive to my entire argument is that dementia should be recognised as a disability under the Equality Act (2010) and the United Nations Convention on Rights of People with Disabilities. This takes the argument one towards ‘rights based approaches’, imbuing potentially a ‘rights consciousness’ of what all people are entitled to. When you consider that people receiving a diagnosis of dementia can find the whole experience totally disempowering, as described clearly by Kate Swaffer in her groundbreaking work, the idea that some form of reablement or rehabilitation is incredibly powerful.

The human brain is uniquely baffling. According to Professor Nancy C. Andreasan, “When the psychologist Kay Redfield Jamison looked at 47 famous writers and artists in Great Britain, she found that more than 38 percent had been treated for a mood disorder.”

Some people when they develop a dementia acquire novel artistic talents. How this happens is still a mystery, but it gives a whole new dimension to the term ‘living better with dementia’.

Also, a few months ago, I was asked to introduce by Lucy Frost, a specialist nurse in dementia, a film in a small church in Brighton, England. This film called Alive Inside was a brilliant demonstration of how people living in residential homes would get ‘switched on’ by listening to music from a portable mp3 player, enhancing individual and collective wellbeing. In contrast to medications, a portable mp3 player has remarkably very few side effects, and is relatively inexpensive.

It is claimed that, in Antiquity, Canus, a Rhodian fiddler, used music to “make a melancholy man merry, …a lover more enamoured, a religious man more devout.” One of Alan Partridge’s favourite quips was, “If music be the food of love, then play on.”

Music is a unique phenomenon in being at the interface between emotions, memory and perception in the brain. Cognitive neuroscientists have long recognised that music presents a special conundrum. Only last week, a paper in the prestigious journal Brain was published which sheds light on why music has this unique power even in advanced Alzheimer’s disease. The authors of that particular study hypothesised that parts of the brain, which were relatively unaffected in advanced Alzheimer’s disease, had a special rôle in the appreciation of music (parts of the brain including, perhaps, the anterior cingulate and pre-supplementary motor area).

The relevance of music to residents who live with dementia is all to see in the current series of #Dementiaville, now showing on Channel 4. But in this age of ‘doing things differently’, which is often sadly used as code for cutbacks, there has been a conspicuous reluctance to give non-pharmacological approaches for dementia serious consideration. As England, and other jurisdictions, teeter at glacier pace towards integrated care (and perhaps even whole person care), it is possible a volte face will some day come with the adoption of social prescribing and its offerings.

I feel the way for this alternative view of dementia policy to get momentum is not to have tokenistic involvement of people living better with dementia on a select few number of panels. They must be given prominence in leadership rôles so that they are listened to properly in service design, provision and research. The mantra of ‘there is no alternative’ has had its day.

Reference

Kitwood, T. (1997). The experience of dementia. Aging & Mental Health, 1, 13–22.

Find out more about Shibley’s book, Living Better with Dementia, read reviews or order your copy here.

Twenty years of living with brain injury

Over twenty years ago, Philip Fairclough fell fifteen feet from a ladder onto a concrete patio, causing massive trauma to his head and severe brain injury. Eight years later his book, Living with Brain Injury, was published by JKP. Today, in support of Action for Brain Injury Week, Philip shares with us the progress he has made since writing the book, as well as the lessons he’s learned along the way which are sure to help anyone who has suffered head injury or cares about someone with a head injury. 

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Cover image for ‘Living with Brain Injury’

People often say, ‘Such and such crosses the divide of culture, status, sex, nationality and even religion.’ It wasn’t ’til my book, Living With Brain Injury was published by Jessica Kingsley in 2002 that I realised how brain injury crosses these divides and more – and this was despite my having previously given presentations before groups of litigators dealing with compensation for head injuries, social workers, care givers and hospital staff. It was further brought home to me by the number and types of reviews I read in magazines published here and in the States as well as the letters I have received from carers and sufferers alike.

Things I have learned which have helped me cope in every day life
In the early days, when I saw how my condition was affecting my family, I honestly felt I’d have been better dying. However, since then I’ve come to realise there is always someone far worse off than me and I tell people, now, for me every day is a bonus. Something else I’ve learned, which came as quite a shock, but helped me to try and see beyond the obvious, was understanding why the wives of some of my fellow sufferers, at the rehab unit, left them after their head injury. I remember saying to Pauline, how terrible that they should be abandoned at a most critical time in their life. Her comments on that were quite sobering. She told me that if it wasn’t for the fact that she loved me and  took her vows and our faith seriously, she might have done the same! We’ve now been married for forty two years with still some to go!

One final note on the matter of what I have learned. The OT’s at the rehab unit, from day one, stressed the importance of setting realistic goals and, having achieved them, setting some more. Though this was a strategy I had been employing for years, both as one of Jehovah’s Witnesses and as a salesman, it was an invaluable tool in helping me keep focused on the positive aspects of life and putting the negatives on one side.

Things I wish I’d known before my accident
I wish I’d realised just how dangerous window cleaning was and had taken to heart the warning I was being given by the excessive costs of insurance! Yet for all that, whilst I wouldn’t want to relive the past twenty years nor for my family to go through it all again, I have learned so much that I wouldn’t have otherwise, contributing to ways in which I have changed since before the accident. For example; though it seems that my memories of what I was really like before the accident are flawed, one thing I do remember is that I had very little empathy for people with illnesses. Though my wife had suffered with health problems for many years and I was very understanding of her, since I’d had few serious health issues since childhood, I had no understanding of how sick people felt or were treated or what they needed from others. However, that changed fairly quickly when I realised how understanding and helpful people were to me. And not just friends, family, work mates and neighbors, but even total strangers. Since, I suppose, I expected them to understand me and make allowances for me, I was forced to change my attitude towards those with health issues, regardless of how serious or trivial they appeared to be.

Philip at home after the accident, before the move to Rosehill Rehabilitation Unit. The shape of the skull was caused by the removal of a part of the bone to relieve pressure on the brain.

Philip at home after the accident, before the move to Rosehill Rehabilitation Unit. The shape of the skull was caused by the removal of a part of the bone to relieve pressure on the brain.

Changes in my health
Whereas stamina was a real problem in the beginning, my fatigue requiring me to sleep most afternoons, for the past few years I have not needed to sleep. In fact, I am awake most mornings between five and six and I often work in the garden for two or three hours without ill effect.

Since I have had no seizures for the past fifteen years, meaning that under medical supervision I have been able to cease using anticonvulsants, apart from the freedom I have gained, many of the side effects common to such medication have also ceased or been minimised. This, I feel, has made me easier to live with. You’d have to check with my wife but I think she’d agree! This has also meant I have been driving again for several years and am just in the process of becoming the policy holder for the car insurance, something I’ve not done for over twenty years. I am also no longer classed as disabled which has helped me gain back much of my self worth. I have been working part time for the past fifteen years, back in my old job of selling which is another plus. The one other thing that has changed is that my enforced retirement has allowed me more time to write. Not only have I written my book, I have also written, and had published, sixteen newspaper and magazine articles in the UK and in Malta. I have written five novels, two of which are, at present, doing the rounds with agents, a full length children’s story and I’m currently writing two spin offs from one of my novels. I am determined to get something, in fiction, published! For two reasons: 1) I want to know if people find my fiction worth reading as my non fiction and 2) Despite only having eighteen months to go before officially retiring, I would like to regain self worth from being able to once again earn money to provide for my family. Watch this space!!

Things which haven’t changed!
I still have problems, at times, grasping things which Pauline or others tell me, requiring them to explain them again, sometimes more than once. I still have problems with time telling and numeracy and I also misread situations or misperceive what I think are people’s responses to me. All these things cause me irritation,  mostly at myself when I fail to understand things, which I have difficulty hiding.

Final thoughts
I wouldn’t want anyone to get the idea that things are a push over, that head injury is something and nothing or that I’m back to normal! I know I was very fortunate compared with many. I was very fortunate in the speed at which I was dealt with and the expertise available to me that day. I am fortunate in having a family like I do and the kind of friends which we have. Much of what I have is based on determination and a positive attitude and this stems from my unswerving faith in God whom I’m convinced had a hand in my life that day since there were too many coincidences for them to be coincidences! Something else which has contributed to my recovery is that, as one of Jehovah’s Witnesses, I am active in our door to door ministry and regular bible study, all of which has not only kept me physically strong but mentally too, making my neural pathways knit that much faster!
Whether to a sufferer or a carer, my final note on this matter is as follows and you’ll find it in the last sentence in my book:

Remember: Where there is life there is hope and there is DEFINITELY life after brain injury.

You can find out more about the book, read reviews or order your copy here

Self-Help for Adults on the Autism Spectrum

In another blog post for Mental Health Awareness Week award winning JKP author Dr. Lee A. Wilkinson discusses some of the challenges facing adults on the autism spectrum—

The dramatic increase in the prevalence of autism spectrum conditions among children and adolescents and the correspondingly large number of youth transitioning into adulthood has created an urgent need to address the problems faced by many adults on the autism spectrum. Nearly a half million youth with autism will enter adulthood over the next decade and most will continue to require some level of support. In addition, there is a large and diverse group of adults whose autistic traits were not identified in childhood and have not received the appropriate interventions and services. Although autism symptoms may improve with age, co-occurring mental health issues may worsen in adolescence or adulthood. As a result, there are a significant number of adults on the spectrum who are now seeking help to deal with feelings of social isolation, interpersonal difficulties, anxiety, depressed mood, and coping problems. Unfortunately, mental health problems such as anxiety and depression and even the diagnosis of an autism spectrum condition itself often go unrecognized. Although the rate of co-occurring mental health issues for adults on the spectrum is high, accessing services to address these symptoms is frequently difficult and the extent of the problem will only increase as more and more youth transition to adulthood.

Evidence is beginning to emerge for interventions addressing the mental health needs of this growing and underserved group of adults, including cognitive-behavioral therapy (CBT). CBT has direct applicability to adults on the autism spectrum who often have difficulty understanding, managing, and expressing emotions. It has been shown to be effective in changing the way a person thinks about and responds to feelings such as anxiety and depression. With CBT, the individual learns skills to modify thoughts and beliefs through a variety of strategies which improve interaction with others in helpful and appropriate ways, thereby promoting self-regulation and mental health. It is a goal oriented approach and primarily emphasizes here-and-now problems, regardless of one’s past history, traits, or diagnosis. CBT also provides a more structured approach than other types of psychotherapy, relies less on insight and judgment than other models, and focuses on practical problem-solving. Moreover, because individuals learn self-help in treatment they are often able to maintain their improvement after therapy has been completed. Evidence-based CBT holds considerable promise as an effective intervention for improving the quality of life and psychological well-being of adults on the autism spectrum.

Despite the availability of effective psychological treatments for anxiety and depression, a substantial number of adults on the autism spectrum do not seek professional help. Common obstacles to mental health care access include limited availability and affordability of services, confidentiality issues, lack of insurance coverage, frequent delays and long waiting periods, and social stigma. Likewise, many service providers do not have the experience or expertise to work with individuals on the autism spectrum, particularly those with co-occurring mental health issues. Self-help interventions represent an increasingly popular alternative to therapist-delivered psychological therapies, offering the potential of increased access to cost-effective treatment for a range of different mental health issues. They provide an opportunity for the individual to gain some useful insights and begin to work through their problems with limited guidance from a therapist or mental health professional. Research has clearly shown that self-help strategies are effective, practical, and acceptable for many individuals in reducing mental health problems such as mild to moderate anxiety and depression, often alone or with other forms of treatment. Self-help interventions have the potential to play an important role in providing effective treatment to the large proportion of adults on the spectrum who are experiencing mental health issues.

While there is no shortage of books describing the controversies and challenges related to the diagnosis and treatment of autism spectrum conditions, there is a need for a practical resource for adults on the spectrum that promotes self-understanding and directly teaches effective ways of coping with their emotional challenges. Overcoming Anxiety and Depression on the Autism Spectrum: A Self-Help Guide Using CBT presents strategies derived from cognitive-behavioral therapy (CBT), adapted specifically for adults with autism, to help them overcome anxiety and depression, and improve their psychological well-being. The author takes the best of CBT therapeutic techniques to facilitate greater self-understanding, self-advocacy, and better decision-making in life-span activities such as employment and interpersonal relationships. This self-help guide provides evidence-based tools that can be used to learn new ways of thinking, feeling, and doing. It includes questionnaires, forms/worksheets, and exercises to help the reader:

  • Evaluate his or her autistic traits and discover their cognitive style.
  • Identify and modify the thoughts and beliefs that underlie and maintain the cycles of anxiety, depression, and anger.
  • Apply therapeutic techniques such as mindfulness, positive self-talk, guided imagery, and problem solving.
  • Accept the past and achieve unconditional self-acceptance.
  • Deal effectively with perfectionism and low frustration tolerance.
  • Avoid procrastination and learn to maintain positive changes to their progress

Used alone or in combination with therapy, Overcoming Anxiety and Depression on the Autism Spectrum: A Self-Help Guide Using CBT is an essential self-help book for adults across the spectrum looking for ways to understand and cope with their emotional challenges and improve their psychological well-being.

 

About the Author

Lee A. Wilkinson, PhD, NCSP, CPsychol, AFBPsS is a licensed and nationally certified school psychologist, chartered psychologist, registered psychologist, and certified cognitive-behavioral therapist. He has published widely on the topic of autism spectrum disorders both in the US and internationally. Dr. Wilkinson is author of the award-winning book, A Best Practice Guide to Assessment and Intervention for Autism and Asperger Syndrome in Schools, also published by Jessica Kingsley Publishers and editor of a recent volume in the American Psychological Association (APA) School Psychology Book Series, Autism Spectrum Disorder in Children and Adolescents: Evidence-Based Assessment and Intervention in Schools.

No Shame for Extreme Night Owls

Author of An Occupational Therapist’s Guide to Sleep and Sleep Problems, Andrew Green is an occupational therapist specialising in sleep disorders. In a bid to clear the air about the myths that surround the early bird and nightowl stereotypes,  Andrew gently introduces the sleep disorders that are the root of the stereotypes that haunt those of us who just aren’t very good at sticking to ‘normal’ sleeping hours, if such a thing exists.

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In 1735, Benjamin Franklin made known the saying ‘Early to bed, early to rise makes man healthy, wealthy and wise’. Over two centuries later it turns out that the opposite may be nearer the truth. By comparing health and socioeconomic data relating to ‘owls’ and ‘larks’, Gale and Martyn (1998) found no evidence that early rising is actually more beneficial, and concluded that early bedtimes and rising times are not linked with ‘health, socioeconomic, or cognitive advantage [and] if anything, owls were wealthier than larks’ (p.1677). It is possible that Franklin learned in his long life that the earlier saying was inaccurate since the following is also attributed to him, presumably in his later years: ‘I wake up every morning at nine and grab for the morning paper. Then I look at the obituary page. If my name is not on it, I get up’.

In any case, the reality is that people are different and the tendency towards being an owl or a lark is inherited. For most people it is just a tendency – part of natural variation that can be accommodated in normal lifestyles, but at the extremes are circadian rhythm disorders. Circadian rhythms are the natural cycles that determine the timing of numerous body functions, including the sleep-wake cycle. When someone’s rhythm is advanced – when they are an ‘extreme lark’ – they tend to wake earlier and go to bed earlier than the norm; it is a very rare condition and Schrader et al. (1993) found no cases of advanced sleep phase disorder in a sample of 10,000 Norwegian adults. However, the same study found 17 individuals who met diagnostic criteria for delayed sleep phase syndrome (DSPS) – or who were ‘extreme owls’: it is therefore still an uncommon condition although the prevalence in adolescents and young adults may be as high as 10% (Wilson and Nutt 2013).

To have DSPS means that a person is unable to sleep until two hours, or longer, after a more conventional bedtime and naturally tends to wake correspondingly later. It might not seem much but is extremely disruptive to life. Someone with DSPS may not know they have it and think they have insomnia, perhaps going to bed at 11 p.m. in the hope of having eight hours of sleep and not sleeping until 2 or 3 a.m. However, they will still need to get up at 7 a.m. for work or school and have to get through the day. Whereas most people can manage after one short night, perhaps because of an early start for a journey, having DSPS is like having to get up at 4 a.m. every day, having gone to bed at 10 or 11 p.m., and then feeling sleepy every afternoon.

Individuals with DSPS complain that it is difficult to get to work reliably in the morning and that employers, and others, do not understand that they are not just being lazy. Some people are very embarrassed by staying in bed for half the morning. Others are able to adapt to some extent; for example, a research student might be able to work in the library during the night, arrange meetings in the afternoon and still have time to meet friends in the evening. The experience of DSPS has been investigated by Wilhelmsen-Langeland et al. (2012) in a qualitative study involving nine young people (age 16–23) in Norway. Participants talked about the difficulty of staying awake at school, and conflicts with others through being late when meeting, or unavailable to help with chores, for example, during the day, but the failure of others to understand was a key observation. Other people might suggest that they could just go to bed earlier – as if they could just try harder to sleep ahead of their biological preference.

Delayed sleep phase syndrome is a disruption of activity cycles and could be considered a disorder of occupation; it should be of interest to occupational therapists. Medical management could involve use of melatonin at night to encourage earlier sleep (supplementing naturally produced melatonin) and bright light (daylight or full spectrum artificial light that mimics natural light) on rising in the morning in order to help ‘reset the body clock’. In addition to these, chronotherapy involves going to bed successively later, a strategy that seems counter-intuitive, until the desired hours of sleep are reached; it is easier to adjust the timing of sleep by lengthening the day – in the same way that is easier to adjust to jet lag when flying east to west. It is then important to consider how the person keeps to more conventional hours.

In many respects maintaining more regular hours is like following advice for managing insomnia: keeping a consistent rising time (essential) – and seeing daylight on waking; avoiding daytime sleep that might delay night time sleep; doing regular exercise and having regular activity; having a clear winding down routine. In winding down it is preferable not only to avoid the mental or emotional stimulation that might accompany use of a computer late at night (and the temptation to play ‘just one more game’, for example) but also to avoid the blue light that is emitted by computer screens and televisions, which can suppress the production of melatonin.

Despite all such effort, however, it is likely that the individual is always going to be later than average and well-advised to avoid work that involves early starts. Finally, extreme owls might remember that there is no need for shame in rising late, which they cannot help. As Gale and Martyn put it, ‘there is no justification for early risers to affect moral superiority’ (p.1677).

References
 Gale, C. and Martyn, C. (1998) ‘Larks an owls and health, wealth, and wisdom.’ British Medical Journal 317, 1675–1677.
 Schrader, H., Bovim, G. and Sand, T. (1993) ‘The prevalence of delayed and advanced sleep phase syndromes.’ Journal of Sleep Research 2, 1, 51–55.
 Wilhelmsen-Langeland, A., Dundas, I., West Saxvig, I., Pallesen, S., Nordhus, I.-H. and Bjorvatn, B. (2012) ‘Psychosocial challenges related to delayed sleep phase disorder.’ The Open Sleep Journal 2012, 5, 51–58.
 Wilson, S. and Nutt, D. (2013) Sleep Disorders, 2nd edn. Oxford: Oxford University Press.

Andrew Green trained in occupational therapy in York and is now a specialist occupational therapist in North Bristol NHS Trust’s sleep disorders service at the Rosa Burden Centre. Learn more about his book An Occupational Therapist’s Guide to Sleep and Sleep Problems here.