Author Archives: amandakeeling

About amandakeeling

I am a PhD student in the Law School at the University of Nottingham. My particular research interests are on capacity law, the CRPD, and how the law, and human rights, can (attempt!) to resolve the tension between protecting and empowering individuals with intellectual or cognitive disabilities.

Chloe Hill – Society’s perception of “perfection”

“Teenagers have it so easy nowadays”– I’ve heard this quote used frequently by adults to their stressed teenagers, telling them to make the most of the youth they have before life gets difficult, but there are becoming more and more reasons for me to disagree with this statement. The expectations that come with a 17 year old adolescent are growing rapidly from their parents, schools, friends and society itself.  The pressure to be “perfect” can be too much for some people, leading to depressionwhich can bring on further difficulties such as eating disorders and self-harm. A Healthline report states, “Treatment is important because teens with untreated depression are more likely to have social and school problems, abuse drugs and alcohol, become parents at a young age, and go on to experience adult depression and possibly suicide.”  But with the all-too obvious stigma that comes with a diagnosis of depression, can we really judge their reluctance?

So, as an 18 year old myself, what do I class as perfection? Perfect grades, a perfectly set out future, perfect hair and the perfect body? These are all pressures that young adults have to face every day, in debatably the hardest time in their life as it isBut is the pressure any worse now that it was 30 years ago, or is it just much more publicised?

Personally, I think a lot of the pressure is to be placed with social networking and blogging sites such as Facebook, Twitter, Tumblr and many more, which have only become widely available in recent years. A study by Cyber Sentinel and published in The Daily Telegraph shows that the average teenagers spends 31 hours per week on the internet, spending a large proportion of these hours trawling through these social networking websites and looking up topics brought about by current pressures, such as cosmetic surgery, diet planning and weight loss methods. The models shown on such websites represent a figure and lifestyle that makes young adults believe that is what they must look like in order to be successful, and when so much time is being spent looking at them, it’s not surprising that image becomes transfixed in their mind. In a study by Stirling University in 2009, one in five school children said the internet, including social networking sites, influenced their decision to self-harm, a figure I find very believable.

But what can be done to help? Should parents be limiting internet access to their children, or is it up to someone else to notice the pressure piling up before it become too much? In my opinion, teenagers are the most unlikely age group to admit they think there’s something wrong with them, for fears of being judged further. So what can be done to stop them going to drastic measures to become “perfect”?

Chloe Hill
Intern, Institute of Mental Health

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Lucy Series -The state isn’t always better, but profit usually makes things worse

This week we have a reblog from Lucy Series, who writes a really excellent blog here.  You can read the post in it’s original format here.

In the wake of Winterbourne View we are all looking for answers to the questions: How did this happen? How can we prevent it from happening again?  There are as many different answers to this question as there are different responders.  But there are difficulties with any one size fits all answer.  It’s easy to blame it on the regulatory model, but as the Serious Case Review (SCR) showed CQC was one agency among many which failed to respond adequately to whistleblower allegations.  We could blame it on the model of care, and it was a vile model of care – storage, not support, as Neil Crowther put it.  But abuse happens in community based care homes and supported living settings as well.  Another pattern, which I want to discuss today, is to blame it on the privatisation of health and social care services.
Let me be clear, there are many many problems in social care that can be traced back to privatisation.  Drakeford has written extensively about the problems of privatisation in social policy (e.g. this book), in a more recent paper he predicts:

‘Far from providing a plethora of small-scale, responsive, customer-focused services which the privatizers and marketers promised (see Drakeford, 2000 for a more extended discussion), the residential care market has displayed far more traditional tendencies to monopoly and standardization. The future of private provision is set to be one of large-scale warehousing, physically located on far fewer premises and offering little by way of choice.’

When I attended a BIHR run event on human rights in healthcare in 2010, Nigel Thompson – head of human rights and equality at CQC – expressed concern that large care providers could undermine the diversity offered by micro-providers, and questioned how CQC could protect that diversity.  I don’t know that any answers are forthcoming yet.  Last year the National Development Team for Inclusion (NDTi) produced a fantastic report examining the root causes of why large, expensive private sector hospitals for people with learning disabilities continue to exist, when they secure such poor outcomes and are a discredited model of care.  The answer in one word: capitalism.  Most private providers are financed by debt. Banks must be satisfied that services are financially viable. Hospitals are easy to conceptualise with ‘safe predictions of profit’, whereas ‘alternative service models more in line with the Mansell Report …consisting of preventative services, sessional input and flexible contracts for support …are more complex to cost and predict.’ Consequently, ‘At a time when banks are less willing to lend, and are looking for greater security from companies, a move towards untried (in business terms) models that have no recognised framework for costing and predicting profitability will be attractive to neither the provider nor the bank.’  The report concluded that only with concerted state action could services in line with the Mansell report be developed.

When care services are contracted out to the independent sector, there is a loss of transparency and accountability as key modern democratic instruments such as the Freedom of Information Act 2000 and the Human Rights Act 1998 lose their traction (yes yes, the HRA applies to care homes when people are placed under the National Assistance Act, but there are plenty of other statutes a person might receive independent sector services under, and not all services are care homes).  Revolting reverse auctions used by local authorities to secure the cheapest contractor for services drive down price at the cost of quality, and will favour providers who can operate narrower profit margins due to economies of scale.  Meanwhile commissioning authorities can distance themselves from tumbling care standards as they have merely ‘purchased’ the care, rather than delivered abusive and neglectful services themselves.  Rather than engage in the slow, hard and costly work of improving services, they can just shop elsewhere.  Staff typically have better working conditions in the public sector, although to my mind the issues around low pay and working conditions which plague the care sector should be addressed for everybody working anywhere.  And paradoxically, although privatisation was supposed to result in greater choice and freedoms of which services a person used, this very choice and freedom can threaten the economic viability of services themselves.  In relation to the supposed ‘freedom of choice’ users of supported living services are meant to enjoy over who supports then, the Voluntary Organisations Disability Group and Anthony Collins Solicitors writes (pdf):

‘…CQC’s primary concern is to ensure people have freedom over their choice of care provider …Providers [of supported living services] are left unable to link any ‘care’ services to the location of the person which prevents them from being able to plan the totality of services required in an economically viable way. This does not help to deliver this type of accommodation in the volume people need…Significant tensions exist between the rights of the individual to self determination and choice, the financial constraints on the cost of care and the regulatory framework.’

In essence, although the ideals underpinning the privatisation of care turned in no small part on freedom of choice, this turned out not to suit providers all too well as they suffered the resultant market instabilities.  That market failure might be a bigger problem in care than, say, discontinuing a line of baked beans, was evident from the panic that ensued when Southern Cross was folding, and nobody was sure week on week who – if anyone – would be supporting residents of Southern Cross care homes.

But to say that capitalism and marketisation is problematic for social care, and to say the state must take action to override the tendencies of free markets in social care to result in uncertainties, monopolies and ‘care as storage’ is not quite the same as saying that state run services are always better.  Would it be too easy and trite to point out that scandals in Cornwall, Sutton and Merton, the Royal Sussex County Hospital, not to mention Mid Staffordshire were all NHS run services?  I was set to thinking about this yesterday by a column written in the Telegraph by Dr Max Pemberton, entitled ‘Winterbourne View: The problem with all care homes’, with the byline ‘Many people with severe disabilities should be cared for within the NHS, rather than in private facilities’.  Pemberton appears to be under the impression that Winterbourne View was a care home, when in fact it was a hospital.  This has been a pretty common theme in media coverage of the scandal, but in this context it’s quite an important confusion as the argument he appears to be making is that Winterbourne View was caused by the care in the community reforms of the 1990’s:

People with severe disabilities, such as those at Winterbourne View, would have previously been cared for in large NHS asylums. However, in the Nineties, with the widespread closure of these, the residents were moved out and cared for by the NHS in the community. While some were able to live independently with NHS mental health service input, some were too disabled and required 24-hour care. These people fell awkwardly between the criteria for NHS care and for personal care, and ultimately their welfare was placed in the hands of social services, despite them having severe and complex medical problems.

Legislation such as the 1990 National Health Service and Community Care Act, as well as the Supporting People initiative, enabled private agencies to develop and provide specialised housing. The result of this is that too many people with severe and complex needs, who were once looked after by medical staff in institutions, are now at the mercy of unqualified staff in the private sector. The issue is not just that there is abuse taking place in some of these homes, but that the level of care that residents receive in all of these homes is substandard because the staff are not medically qualified or trained to the standard expected on NHS wards.

There are several points about this argument.  Firstly, it appears (to me) to be endorsing a very medicalised view of what kind of care adults with learning disabilities should be receiving, which sits in tension with the arguments advanced by leading learning disability experts and charities that:

There is no place for specialist hospitals in the care of people with learning disabilities (outside of serious forensic issues). There is clear evidence that such hospitals provide poor outcomes, often at very high cost, and that there are better, alternative ways of supporting people that have behaviour labelled as ‘challenging’. There is a place for a small number of local assessment and treatment beds, integrated with other local community services.

These charities aren’t arguing for people to be moved into NHS run hospitals, they’re arguing for people to be moved out of healthcare services altogether – into community services.  To be fair to Pemberton, however, he does argue ‘I wouldn’t advocate returning to the days of large institutions and asylums’, but he does seem to be advocating for care services run on a healthcare model.  Secondly, it seems to be linking the abuse at Winterbourne View to the fact the services were not run by the state.  I’m probably going to lose a few friends by what I’m going to write next, but I think it’s problematic to argue that the state always provides better services.  I don’t mean to come over all Philip Blonde about this, but the fact is that there are many excellent and innovative forms of care that are being developed – with (hopefully) support from local authorities and the state – in the independent sector.  For example, most micro-providers – which can have excellent outcomes – are in the independent sector (see Community Catalysts); Shared Lives schemes can have excellent outcomes, and they can also be in the independent sector (although some are run by local authorities).

Pemberton’s article sent me scurrying away to look up some research I did in the twilight days of the CQC using care standards ratings.  Using their old search engine (have I whinged yet about how much better it was than their new search engine?), you were able to search for the number of registered providers of different types of care (e.g. care homes, domicilliary care), of different target users (e.g. learning disabilities, ‘old age’, dementia, etc), and of different provider type (e.g. voluntary sector, private sector, council run, NHS).  Now, CQC did release some data back in 2011 which showed that council care was better than private sector care, but the data I unpicked showed a slightly more complex picture.

For each type of service provider (e.g. NHS, local authority, voluntary/charity or private – meaning ‘for profit’) I calculated the proportion of services receiving CQC ratings of 0 (poor), 1 (adequate), 2 (good) or 3 (excellent).  I broke this down by type of care being provided.  I also looked at the proportion of services offered by each type of provider.  The charts below reflect what I found.  These data were collected in April 2010.  I have shared a copy of the spreadsheet with the data in full here, which you are very welcome to use as you see fit although please note the Creative Commons license this blog is published under.  I apologise that the graphs don’t quite fit on the page, but it’s probably better to be able to read the text than look pretty!

Domiciliary care services

The largest proportion of domiciliary care is provided by for-profit (‘private’) providers, followed by local authority, then voluntary/charity, and then a small proportion of NHS providers.

Of those providers, the private sector has the largest proportion of services rated ‘poor’, followed by the local authority (note: not the independent sector).  The Voluntary sector had the highest proportion of its services rated ‘excellent’, followed by the local authority, then the NHS, with the private (‘for profit’) sector having the smallest proportion of its services rated ‘excellent’.

 

Care homes

 
As with domiciliary care, the private sector provides the largest proportion of care homes, followed by the voluntary/charity sector, then local authorities, then the NHS.
As with domiciliary care, the private sector has the largest proportion of its services rated ‘poor’, followed by the voluntary sector, then the NHS, then the local authority.  However – contra Pemberton’s cheerleading for the NHS – the NHS also has the smallest proportion of care homes rated ‘excellent’, closely followed by the private sector, then the local authority, with the voluntary/charity sector providing the largest proportion of care homes rated ‘excellent’.

 

 

This pattern changes, however, if we break down care homes by the type of user.  For care homes for old age, the private sector has the largest proportion of ‘poor’ services, followed by the voluntary/charity sector and then the local authority.  The NHS offered the highest proportion of ‘excellent’ care homes for old age, followed by the voluntary/charity sector, then the local authority, then the private sector.  But before we get too excited about the NHS offering no poor or adequate services and the largest proportion of ‘excellent’ services, note that there were only 3 NHS run care homes catering for ‘old age’ in this sample.

For dementia, again we see that the private sector has the largest proportion of ‘poor’ services, followed by voluntary/charity then the local authority.  The voluntary/charity sector offers the largest proportion of ‘excellent’ services, followed by the NHS, followed by local authorities with the private sector coming last.  Once again, however, the NHS data should be treated with caution as it only reflects a sample size of 10.

For adults with learning disabilities, the private sector had the largest proportion of ‘poor’ services, and the local authority the least.  The voluntary/charity sector offered the highest proportion of ‘excellent’ services, followed by the local authority, followed by the private sector – with the NHS offering the smallest proportion of ‘excellent’ care homes for people with learning disabilities (there were 157 NHS care homes for this sample).  The NHS did offer the highest proportion of ‘good’ care homes for adults with learning disabilities, but in terms of services rated higher than ‘adequate’ it only equalled the private sector and was outcompeted by both the voluntary/charity sector and the local authority services.

 

This last chart is not related to the type of provider, but does facilitate comparisons between how good different types of care homes are for different types of users.

 

Discussion

These data are two years out of date now, but they do suggest that it is not an easy generalisation to make that the state offers better quality care than the independent sector.  Digging deeper into the data, there are many occasions when the voluntary/charity sector performs better, and – for care homes for adults with learning disabilities at least – the NHS doesn’t seem to excel.  It might stick in your throat to acknowledge this, but the voluntary/charity sector would not be offering these kinds of care services were it not for the ‘privatisation’ of social care which allowed services to be commissioned from independent providers.  One pattern does stand out in these data though, that the for-profit private sector, which holds the largest share of the market, is consistently the worst.  It offers the most poor services, and the fewest excellent services.  The state isn’t always better, but profit usually makes it worse.

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From the Vice-Chancellor’s desk » Opening of The Institute for Mental Health

This week we have a guest-blog, from the Vice-Chancellor of the University, talking about the opening of the institute.  You can see the original blog, and other posts from the Vice-Chancellor the link below.

From the Vice-Chancellor’s desk » Opening of The Institute for Mental Health.

Opening of IMH 2012

Last week we opened the new Institute for Mental Health on the Jubilee Campus, with Dame Sally Davies, the Chief Medical Officer, as our Guest of Honour.

The incidence of mental ill health is growing. According to NHS data, the proportion of the English population meeting the criteria for one common mental disorder has increased from 15.5 per cent to almost 18 per cent over the last 20 years. This incidence is forecast to grow further as a consequence of demographic change, principally an ageing population.

Mental illness causes considerable personal and familial distress. Indeed, recent work at the Harvard School of Public Health estimates that mental health is the leading cause of all disability-adjusted life-years, followed by cardiovascular disease and cancer. It also has significant economic costs, estimated at over £105 billion per annum in the UK in 2009 (up from £77 billion in 2007).

Despite its growing incidence, the distress it causes and its consequences for individuals, families and communities, mental health remains something of an under-researched and under-resourced area. This is no doubt partly due to competing priorities, partly because it is a complex spectrum of illness, and partly because research is inherently multidisciplinary. The last of these makes it harder to build the teams necessary to address complicated conditions and have impact on patient care and outcomes.

Working in partnership with Nottinghamshire Healthcare Trust, we created The Institute of Mental Health in 2006, under the leadership of Professor Nick Manning. Remarkably quickly it gained a national and international reputation for its fundamental and service facing research. In part this is due to the health of the University – NHS relationship and what we each bring to the partnership. In large measure it is down to the skill of Professor Manning and his research leaders in bringing together staff from such a wide array of disciplines: Medicine and Health Sciences, Business and Management, Education, Law, Sociology and Social Policy. The Institute now has the biggest concentration of interdisciplinary research power in the UK; creating critical mass at this scale not a straightforward task.

Almost 200 staff in Nottingham are now focused on, among other things: old age and dementia, ADHD and neuro-developmental disorders, mood disorders, recovery and integrated healthcare. About two thirds of those are University staff and one third NHS staff. The Institute also has a wide range of partners – regional, national and international – and multiple sources of funding, most notably from the National Institute for Health Research.

Mental health research is a profoundly important area and meeting the needs of an expanding patient population will be an increasing challenge for society in general and the NHS in particular. The IMH is already making a significant contribution to our understanding of a distressing range of complex illnesses, their diagnosis and treatment.

As Dame Sally Davies noted in her address, the IMH is a genuine partnership between higher education and the NHS, a partneNew Buildingrship grounded in a shared agenda to make a difference in what is sometimes described as a ‘cinderella’ area.

The combination of high quality research undertaken at scale persuaded the University and Nottinghamshire Healthcare Trust to invest in a new building. Bringing together our research teams and clinicians into a single purpose built facility will create even more opportunities for collaborative and transformative research. In time that can only benefit patient care and recovery.

Symbolically it is entirely appropriate that the new building is located on Jubilee Campus, itself a beacon of regeneration and renewal.

Professor David Greenaway

Vice-Chancellor

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Dr. Hugh Middleton – Dig Till You Gently Perspire

There has been something of a tea-cup storm over publication of findings from the TREAD study in the British Medical Journal on June 9th (Chalder et al 2012). TREAD is an inventive acronym for the NIHR funded TREAtment of Depression with physical activity study which was conducted in Bristol and Exeter between August 2007 and October 2010. The BMJ paper was published online on June 6th 2012 and so cyberspace was already buzzing before my own paper copy came through the letter box. The reason why is of course because the findings, as they were presented, were counter-intuitive and challenged practices many GPs and their patients find attractive. The episode also provides insight into ways in which a combination of the press’ and professional’s separate but complementary interests in simplifying the complex can result in misleading impressions.

Martin Robbins provides an account of how it went from a journalist’s perspective. The paper’s abstract reads “The addition of a facilitated physical activity intervention to usual care did not improve depression outcome or reduce use of antidepressants compared with usual care alone.”. A related press release read “New research published today [6 June] in the BMJ, suggests that adding a physical activity intervention to usual care did not reduce symptoms of depression more than usual care alone.”, and included a quote from Prof. John Campbell, General Practice and Primary Care, University of Exeter: “This carefully designed research study has shown that exercise does not appear to be effective in treating depression.”. In the early hours of June 6th, only a short time after the press embargo had been lifted the BBC reported “Combining exercise with conventional treatments for depression does not improve recovery, research suggests.”. Later that morning the Guardian appeared with the headline “Exercise doesn’t help depression, study concludes. Patients advised to get exercise fare no better than those who receive only standard care, researchers argue”. This was followed by a number of online reactions by other journalists writing for the Guardian and the Daily Telegraph, and other commentators. Sharp eyed colleagues spotted all of this and the original BMJ paper was the subject of our clinical work-place journal club on June 11th.

One of the earliest responses posted by the BMJ was from Stephen Pilling and Ian Anderson who led the development of NICE Guidelines for the Treatment and Management of Depression which were published in October 2009 and which recommend the use of exercise as a “treatment” for depression (Anderson et al 2009). On June 8th they posted criticism of the TREAD report drawing specific attention to two perceived shortcomings. The first of these was that the intervention “tested” by TREAD was not in fact exercise itself, but contact with an exercise facilitator. Their NICE recommendations had been based upon understanding of research directly considering structured group exercise and as a result they did not regard the TREAD intervention as comparable. The second was that their recommendation was that exercise should be used as a treatment for “mild” to “moderate” depression, and the mean Beck Depression Score of TREAD subjects on entry into the trial (32.1) suggested that they were better thought of as in the “moderate” to “severe” range.   Other postings identify a variety of other technical and anecdotal concerns about the trial.

All of this could be nothing more than a storm in a tea-cup were it not symptomatic of several familiar and consistent strands, and didn’t result in misinforming or confusing vulnerable people who listen to the radio or read newspapers. Three questions are worth considering, and there may be more.

  • How did so high profile a medical journal publish findings from so flawed a trial?
  • Why did the press pick up upon its conclusions in so misleading and uncritical a way?
  • What are the wider implications for understanding how we conduct and disseminate mental health research?

Was the trial flawed? What would Austin Bradford-Hill, credited father of it make of contemporary use of the term “Randomised Controlled Clinical Trial”? Chandler et al acknowledge that Owing to the nature of the intervention, none of the participants, general practices, clinicians, or researchers performing the outcome assessments could be blinded to treatment allocation.” (page 2). Somehow the strict experimental requirement of double blinding has been allowed to lapse and clinical trials are considered randomised controlled clinical trials and elevated to premier status in the evidence hierarchy even when subjects and those involved in their treatment are aware of their treatment status. The whole purpose of RCT methodology is that it provides a way of controlling for the effects of that myriad of variables, predictable and unknown, which might influence the outcome of a complex phenomenon such as an episode of illness or emotional distress. We know that placebo or expectancy effects are considerable in mental health and yet we have drifted away from strict adherence to research protocols which control for them. Where investigated some 80% of antidepressant trial subjects correctly guessed whether they were taking control or trial medication on the basis of experienced side effects (Rabkin et al 1986). Someone I am clinically involved with who had agreed to take part in another investigator’s trial of a psychosocial intervention informed me that they had been allocated to the control arm. “How did you figure that?” I asked. “Because they told me.” was the reply. I doubt that Austin Bradford-Hill would respect that as an RCT and he would probably have similar difficulty with TREAD, but both are likely to be considered RCTs and their findings respected as such.

The press by their own subsequent acknowledgement picked up upon a sensational sound-bite without questioning its source or its provenance. Exercising to improve well being is folk lore. When a prominent medical figure says “This carefully designed research study has shown that exercise does not appear to be effective in treating depression.” news is breaking. “Prominent medical figures” are under pressure to maximise the impact of their research and might be tempted to present findings in a way that attracts press attention. Quoting experts is not the same as conducting one’s own investigative journalism, and it is certainly easier and less risky. Sensational medical stories are popular and so the temptation is understandable. News items reporting medical research findings that promise “a breakthrough” are all too common. However, the cynic doesn’t find it difficult to hear and see the appeal for more research funding or how far away the “breakthrough” actually is if by “breakthrough” what is meant is a radical improvement in everyday experiences of this, that or another condition. Perhaps we should consider the need for a “Medi-Levenson”, to consider the relationship between “prominent medical figures” seeking funding and good impact ratings, and the press seeking newsworthy reports of medical advance.

Two strands of this might be considered particularly relevant to the world of mental health. One is that devaluation and degradation of the strict experimental requirements expected of a definitive randomised controlled clinical trial are a particular problem in this area. The other is that our clientele are vulnerable and desperate by definition, and therefore particularly susceptible to misinformation.

The first of these is a direct consequence of the nature of the field. Expectancy and/or placebo effects do make a powerful contribution to outcomes from all forms of “mental disorder” and so it is particularly important to control for them in the course of evaluating a treatment. Unfortunately that is very difficult to do. All of our drugs have prominent side effects and trialists are obliged to warn participants of their possibility. Psycho-social interventions are even more difficult obscure. The result is that our old friend, the Emperor’s Clothes, becomes a little see-through in this context as well. We should not claim to be offering treatments that are truly tested by exacting RCT methods in the same way much of medicine presents itself as doing, but we do.

The second is self-evident but possibly deserves a little elaboration. A core feature of that most widely accepted psychosocial intervention, cognitive behaviour therapy, is acknowledgment of the reality and relevance of cognitive distortions. The problem is as much how the experience; ruminations, others’ voices, palpitations, dysphoria, anger, etc. is understood as it is the presence of the experience itself. What psychiatrists as authorities in the field tell people about the nature of emotional distress and how it might be mitigated plays an important “public health” role. Possibly one of the most damaging acts of unintended harm things we perpetrate is to claim we have answers, when in fact we don’t. This little story about exercise and depression might be a timely reminder. If you add TREAD to the other research concerned with this question then the answer has to be “this sort of research doesn’t and can’t provide a definitive answer”. If you are feeling low and you think it might help, do exercise.

To quote from Rudyard Kipling:

The cure for this ill is not to sit still,
Or frowst with a book by the fire;
But to take a large hoe and a shovel also,
And dig till you gently perspire;

 

Will ill-applied RCT methodologies ever truly improve on this?

Hugh Middleton June 2012

Clinical Associate Professor,
University of Nottingham School of Sociology and Social Policy
Honorary Consultant Psychiatrist, Nottinghamshire Healthcare NHS Trust

References

Melanie Chalder, Nicola J Wiles, John Campbell, Sandra P Hollinghurst, Anne M Haase, et al (2012) Facilitated physical activity as a treatment for depressed adults: randomised controlled trial. British Medical Journal OPEN ACCESS, BMJ 2012;344:e2758 doi: 10.1136/bmj.e2758 (Published 6 June 2012).

Anderson, I. Pilling, S, Barnes, A. et al (2009). Clinical Practice Guideline No.90: Update: Depression in Adults in Primary and Secondary Care (Update). Gaskell/British Psychological Society. London

Rabkin, J. G., Markowitz, J. S. and Stewart J. (1986). How blind is blind? Assessment of patient and doctor medication guesses in a placebo-controlled trial of imipramine and phenelzine. Psychiatry Research, 19, 75-86

Kipling, R. (1902) Just So Stories. How the Camel Got His Hump. Accessed on line June 14th 2012. http://www.boop.org/jan/justso/camel.htm

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Shortlist for IMH Sculpture – Vote for your favourite!

You may recall back in April of this year, Victoria Tischler posted to the blog, discussing the plans for a scuplture to go outside the new Institute of Mental Health building on the Jubilee Campus (see here and here).  Well, we are pleased to announce that the sculpture maquettes are now on display in the lobby of the new building. The decision to choose which artist to commission will take place on the 14th of June.  In the meantime, you can visit the new Institute art pages, where there are images of the macquettes and information about each design, and a poll where you can vote for your favourite.

 

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Amanda Keeling – Capacity Law and the Debate in Ireland

I’ve been following with some interest the progress of the Mental Capacity Bill currently making its way through the Oireachtas in the Republic of Ireland.  Ireland is currently in the position, as the UK was several years ago, of bringing its mental capacity law up to date, in a modern, workable form.  The result was the Mental Capacity And Guardianship Bill 2008, which looked a lot like the English Mental Capacity Act 2005, but it has been slow progress, and it is currently going through committee stages in the Oireachtas.

The reason why this Bill has become so interesting is because, while the original Bill looked a lot like the MCA, the intervening time has seen the UN Convention on the Rights of People with Disabilities finalised and signed by member states, and it is against this background which the Irish legislation is now being debated.  The CRPD, as I have discussed elsewhere on this blog and others in more detail elsewhere, presents some major challenges for capacity legislation, and it is interesting to see how Ireland are dealing with this.

Earlier this month, the Oireachtas Committee on Justice, Defence and Equality released its report on the proposed legislation.  The report stresses the need for a rights-based approach to the change in legislation, reflecting the move in the CRPD from paternalism to respect for the individual’s ‘will and preference’.  The starting point for any new legislation must be the recognition that all people have legal capacity, and are capable of making decisions.

The current position in Ireland is on a system of wardship, whereby an individual’s capacity is assessed, and if found lacking risks complete removal of autonomy over almost every aspect of the their life.  That this system needs to be replaced is not really controversial, and the Committee are clear that this needs to be changed as a matter of urgency.  However, in their consideration of the submissions made on the draft legislation, there were two particular points of interest for those with an interest in what changes might be made in England and Wales following the CRPD (in particular the Office for Disability Issues, who are under the impression that the MCA is perfectly compatible).

The first was the discussion around best interests.  This is, of course, the principle on which any substitute decisions must be made under the MCA, when someone is found to lack capacity.  Under the MCA, the best interests test is objective, with the individual’s wishes and preferences only a point of consideration amongst a list of others, including a balance of these wishes against any potential harm.  The report highlighted the risks of this approach, some of which I discussed in my last blog post, where the ‘best interests’ can end up being just what the professional thinks is best.  Such a model is, it was suggested, paternalistic and outdated, and in real need of replacement.

What would it be replaced with?  A best interests model is only required when it is found that an individual cannot make a decision, and one must be made for them.  The Committee report commented on the need for supported decision-making, and a move away from substitute decision-making.  This is the most challenging part of Article 12 for States; does the CRPD require the removal of all substitute decision-making frameworks, or is it aimed more at removing the blanket findings of incapacity, such as the Wardship framework currently in operation in Ireland?  The Committee suggested that any reference to substitute decision-making should be in the sense of ‘last resort’, and inclusion of provisions regarding supported decision-making as a first priority needed to be made.

It will be interesting to see what the Irish Government makes of these observations, and what a completed draft of the Bill will look like.  Any significant change should be keenly watched from these shores.

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Amanda Keeling – Mental Capacity and the Right to Make Stupid Decisions

As a disclaimer, I should probably declare that this is a cross-posting, from the entry I wrote on the Law School’s mental health and capacity blog last month; as far as I know, we have little shared readership, however, and I wouldn’t want to deprive you here…

Last month, a research team across the Universities of Bristol and Bradford and the Mental Health Foundation released their report into best interests decision-making under the Mental Capacity Act 2005 (MCA).  The MCA allows for (among other things) decisions to be made for an individual when that person is found to lack the capacity to make the decision for herself.  If the individual is found to lack capacity, then a decision can be made on her behalf in her ‘best interests’.  The research team looked at a great deal of aspects around this decision-making process, but I was particularly interested in their findings regarding the first step: determining capacity.

The lack of mental capacity is the cornerstone of the Act; it is the ‘gateway’ step, and without a finding of a lack of capacity, health and social care professionals are not able to intervene.  And yet, given that it has such an important role in the legislation – and a potentially intrusive one in an individual’s life – ‘capacity’ and how to assess it is a surprisingly mercurial concept.  The MCA provides that capacity should be tested through four factors, whether the individual is able to:

–          understand information
–          retain it
–          use and weigh it,
–          and communicate their decision.

This test is primarily one of cognitive function; the quality of the decision reached by the individual should not be of issue, but rather the process by which they get there.  In section 1 of the Act, which outlines the principles underlying the legislation, it is quite clearly declared that ‘a person is not to be treated as unable to make a decision merely because he makes an unwise decision’.

On paper, this sounds relatively simple – essentially, try not to be too judgmental about people’s decisions, and observe instead their cognitive functioning ability.  What the report reveals, however, is making the distinction between an unwise decision, and one which results from a lack of capacity, is difficult for health and social care practitioners, and what seems to be happening in many cases is those individuals who have specific disabilities or histories are being assumed to lack capacity, when they make what appears to be an unwise decision.  Another result of this research has been the discovery of what the team call a ‘concertina effect’, where capacity decisions are being made simultaneously with decisions about what action is in the individual’s best interests.  They suggest that often, a decision has already been made about what course of action should be taken, and therefore a finding of a lack of capacity had to be found in order to implement it.

These two findings put together put a rather worrying light on practice around mental capacity issues.  The MCA was supposed to institute a functional test of cognitive ability, rather than a status test whereby an individual with a specific diagnosis is presumed to lack capacity by virtue of that diagnosis, or an ‘outcome’ test, where those decisions which are ‘unwise’ are deemed to be incapacitous; the thrust of this is that we should not question someone’s capacity merely on the basis they have an intellectual or cognitive disability, and are making what we perceive to be a silly decision.  What the findings of the study suggest is that the ‘status’ and ‘outcome’ approaches seem to be alive and well in practitioners practice, and that there is no space for the making of unwise decisions when you have an intellectual or cognitive disability.

All of this should be more concerning when we consider the massive leap which Article 12 of the UN Convention on the Rights of People with Disabilities (CRPD) presents in our thinking about mental capacity.  Article 12 declares that everyone; has the right to enjoyment of legal capacity, and that the State must provide adequate supports to enable that capacity to be exercised.  The MCA itself is a relatively progressive piece of legislation and should be praised, but it has to be questioned what good it is if, regardless of the letter, even the spirit of the law does not appear to be followed in many cases.  If such attitudes still persist, almost five years since the MCA came into force, then what hope does the rather more dramatic ‘paradigm shift’ of the CRPD have for changing fundamentally the way we treat people with different levels of intellectual and cognitive functioning?

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