Medical practice relies on precise and specific diagnosis, a broken leg is a broken leg, a melanoma is a melanoma, a thrombosis is a thrombosis; there is nothing controversial about these diagnoses. In contrast, there is nothing precise about a psychiatric diagnosis, symptoms are non-specific, vary from day to day and different opinions are expressed by different clinicians; they are entirely controversial. Most psychiatric patients are given many diagnostic labels over a period of time, quite often ending with the nonspecific ragbag ‘Personality Disorder’ as there are so many inconsistencies. People without any mental health labels often have unusual convictions, practices or beliefs with which others would disagree profoundly, eg: religious, spiritual, class, racial, political etc.. . That’s increased substantially if the person is from other cultures, or has been traumatised, deprived of food or water, exposed to life threatening stress or abuse, or mind altering substances; all impacting on the individual’s psyche, short or long term. Psychosomatic symptoms are common in many people, whilst, clear clinical symptoms, even those of acute appendicitis, have been dismissed as delusional, those of the auto-immune disease Lyme Disease have been diagnosed as Bipolar Disorder by a clinician who also added ‘I have been doing this for years and I have never been wrong’. This arrogance is far from uncommon.
Psychiatry is also unique in that people are detained and treated against their will, although greater efforts are made these days to persuade voluntary compliance. Nevertheless, there are thousands of Community Treatment Orders made with the threat of compulsory hospitalisation if the person does not comply, and Electro Convulsive Treatment rooms remain in mental units. Within living memory, crude pre-frontal lobotomies have been performed by inserting ice-picks through the eye orbits into the brain, comas induced by ‘insulin therapy’ practised and anti-psychotic drugs are often called ‘the chemical lobotomy’
New ways of working
These three new approaches have much in common. They all involve mental health professionals working with the larger ‘natural’ support group of the ‘patient’ as equals in the best interests of the patient, it’s the essence of person centred planning which is the standard now supposed to apply. They have all achieved impressive results in helping the patient return to mainstream life
Triangle Care devised by Alan Worthington ( a carer), then taken up enthusiastically, introduced and adopted more than 5 years ago by all but 3 or 4 Mental Health Trusts in England (maybe all by now), but rarely implemented. It works v well for people with Learning Difficulties, Dementia and CAMHS where professionals HAVE always worked with the family /friends but it is usually ignored by Adult Mental Health Services which generally prefer NOT to work with – or even meet or listen to – families, (claiming conflicts with confidentiality usually). Just this week, a man was killed by someone whose parents had been begging mental health services to take their son into hospital as they could foresee this accident; they were consistently ignored. It does not always hit the headlines, but this tragedy is far from being unique. Triangle was devised especially for use with in-patent Adult Mental Health Services originally. Where it is implemented, eg: as in Trusts in the West of England (Dorset, Somerset, Avon, Devon), it totally transforms the service. It is based on an equilateral triangle in which service user /patient, carer and professional are equal contributors working collaboratively in the best interests of the patient. Incidentally, there have never been any court proceedings in the UK about breach of confidentiality / professional practice, whereas there have been many deaths because essential information has not been given to families or they have not been listened to.
Family Work – as taught to mental health professionals and practised by the Meriden Programme under Dr Grainne Fadden and the late Ian Falloon, family work is internationally recognised and valued. Many professionals in England have undertaken this training in the last say 15 years, returned to their home Trusts and found they were not able to put it into practice as taught. Some try to practice some elements, as and when they see an opportunity, and that’s helpful but not optimal use of the training. It seems a critical number of trained people are necessary to change the prevailing culture in a Trust; just one or two individuals will not achieve change
Open Dialogue (OD) developed in Finland in the 1990s because mental health professionals were dissatisfied that so many of their patients became permanent / ‘revolving door’ using conventional Western drug based treatments. They decided to start from scratch, using commonsense and the natural family (and similar) supporters of the patient – people of his choice – to work alongside professionals. OD helps many patients return to their mainstream lives in 2 -5 years. The enthusiast psychiatrist who promotes and leads OD in England is Dr Russell Razzaque who works with NE London / Essex Trust. He is totally committed to OD being available in the NHS and will only work with teams of staff from a particular Trust as a critical number of committed professionals is necessary to achieve change (as with Family Work). There are 4 pilot sites in England currently and other Trusts are showing interest, not least because it results in considerable savings for them. Patients and their families lobby Trusts to support this initiative, families want to know how they can become trained to work in this way. Grass roots pressure to have OD much more widely available grows almost daily. The reasons OD was adopted in Finland are precisely the same as the reasons it should be developed here – people want and need to have the best outcomes, and they want their lives back.
So, if these three approaches give good results why aren’t they commonly practiced here? It seems a change in culture is needed with endorsement by the senior management. By and large, the management see no need to change what works well for them; they are comfortable at the apex of a medical hierarchy, with large salaries, secure posts, and a total commitment to the medical model despite its obvious inadequacies; furthermore, many senior managers are now appointed for their business expertise, so know very little, perhaps nothing at all, about mental health. Many patients cease to be patients with these progressive approaches and may lose their need for prescribed drugs on a permanent basis, and that does not suit Big Pharma’s needs for an ever expanding and reliable profitable business. In addition, these approaches involve working with families / quasi families, those who are integral to his life, people who actually know and love the patient, and working with them as equals; and that may appear threatening to a medical hierarchy used to being in charge. These social approaches are much more demanding and unpredictable than the hierarchy of the all-knowing medical expert wielding a prescription pad, but they are also much more rewarding ultimately; once the switch is made, they actually suit everyone.
A more psycho-social approach also relates to, and supports ethnic, cultural and language differences. The individualised medical model is a Western concept; its language and culture is alien to other cultures, the ideas, even the words have no equivalents in other cultures. From time to time, there have been useful attempts to bridge these differences; having ‘experts on tap instead of on top’ in the participatory practices of the Liverpool School of Tropical Medicine and in their outreach work both overseas and in England. Those I know of eg: in Liverpool’s Toxteth, have all been subjected to financial cuts and seem to have disappeared unfortunately. In Maori culture, the problem is never seen as with and of the individual, the whole community relates to it. This approach is much more common in non Western, less individualised societies. That seems to have a core essence compatible with OD in my view.
It is worth recalling that 100 years ago, a third of mental health patients recovered quickly after one or two episodes, a third took longer and a third became long term patients. Despite the wide use of prescribed drugs (‘anti-psychotics’) these proportions have not changed until these kinds of enlightened socio-psychological interventions have been used. Of course, they do not lend themselves to controlled Cochrane trials either, but there is increasing accumulating evidence from families in societies all over the World that they work in terms of patient outcomes and satisfaction. Also, many of the Pharma-supported trials are found to be far less effective and more suspect / selective than originally claimed. Some drugs cause the symptoms they’re supposed to treat, and all anti-psychotic medications have serious adverse effects. According to the Council for Evidence–based Psychiatry more than 53 million prescriptions for anti-depressants were issued in 2013 in England, that’s a 92% increase since 2003. given the doubt about the efficacy of these drugs, and the dubious marketing sweeteners offered to clinicians, and the cost to a hard-pressed NHS, this needs further investigation.
The importance of informal supporters – family, friends, colleagues, neighbours – people NOT involved in mental health services collaborating with professionals – is fundamental. The COPE course (Manchester University’s PSE MA course) concluded the best outcomes for mental health patients is having a minimum of 5 such supporters
Work Capability Assessment
My comments are similar to those already made in Easington. Nothing on the Work Capacity Assessment form relates to the intermittent functioning problems faced by people with mental health ‘diagnoses.’ These assessments are currently undertaken by Maximus. As with ATOS, I understand these assessors are not medically trained, do not take medical opinion into consideration, and the assessed person seems to have no right to see what has been written about him. This seems to be wrong on all counts. There was much criticism of ATOS because the assessors had to meet ‘targets’, eliminating so many people from benefits / week in order to earn their pay, irrespective of clients’ clinical needs. There have been many exposes of malpractice in the press and a TV documentary / under cover report, recently showed the assessor completed assessments before even meeting clients – he was reputed to be an excellent assessor. Whether all these malpractices still apply, I don’t know, but they need investigation and the results should be published and accessible in the public domain.
Work Coaches
My MP Frank Field (FF) has told me these are appointed to help people who have been out of work long-term find suitable employment, including those with mental health ‘diagnoses’. He thought they would work well, but new money would not be made available; it was likely to be taken from some other deserving area, and that was to be regretted. I have not found work coaches to be operating in this area – maybe as yet. I have asked FF where these have been appointed? Are there pilot sites? Who is monitoring them and where can I see the reports of their effectiveness? I am awaiting a response. Work of the right type can be extremely beneficial (I speak as someone who developed a social enterprise working with people in the way and for the times which THEY found supportive). However, any old work, ‘slave labour’ not related to the person’s abilities or interests, unrewarding in any capacity, uncertain, unstable, poorly or intermittently paid, zero hours etc… is most unlikely to be the ‘right’ kind of work – more likely to promote ill health than recovery. We need a register of empathic employers, similar to John Timpson’s business (shoe repair /key cutters etc…); he offers paid work to former prisoners.
Neglect of Duty of Care
There have been such massive cuts repeatedly year on year in NHS mental health facilities, psychiatric beds, CAMHS in some areas, ‘care in the community’ and support services, qualified staff replaced by unqualified or less qualified staff at the lowest pay, so that statutory obligations can no longer be met. Patients are discharged too early, sent many miles from home, become ‘bed hoppers’ night to night wherever a vacancy arises or ‘leave’ can suddenly be arranged when someone else with even more serious symptoms needs the bed, discharge without consultation with the families who will have to take over their care etc…. It seems to be the opposite of mental health best practice.
Some long-term patients are sent into supported living in order to be rehabilitated to mainstream life. These are run by private companies who charge in the order of £4000 a week per person for 24/7 care and rehabilitation; this is a charge to the public purse. Rehabilitation tends not to happen, and in practice the service user has a succession of poorly paid untrained or scarcely trained ‘carers’ who are simply just there, effectively to act as community police / guards. Sometimes they leave whilst still officially on duty, and the service user is then locked into his room in a locked house; in the event of fire, he is trapped. These contracts are so remunerative that there is absolutely no incentive to discharge the person – ever. It is a scandal. A mental health professional told me that in his long experience, he had only once heard of someone being discharged, and that company went bankrupt. There is no chance of any of these recent providers following suit. For comparison, I understand local authorities pay about £400 a week for people in care homes currently.
People with dementia are locked into their homes and visited 2 or 3 times a day by the paid carer.
People, often with learning difficulties are housed in a small terraced house together, each with his own bedroom, but the public purse is charged as if each had his own house ie: overcharged by 3 or 4 times according to the size of the house
Potential problem: Someone employing a nanny, or domestic help now has to provide a pension scheme and contributions. I do not know if this applies to the people listed above as yet, but it’s an appalling (im)possibility when they cannot manage their own lives.
People with Congenital /Permanent Disabilities
These are people who have been awarded life time benefits in the past, many with problems from birth, disabilities from which there is no recovery and who are totally dependent on their unpaid carers (parents) – with a mix of mental and physical disabilities. Lifetime benefits no longer apply. Parents / carers need to re-apply periodically, perhaps every 2 or 3 years for their relative’s support, and their concern is who is to do this once they can’t. What will happen to their relative? This is a big anxiety for many carers; it needs urgent attention. Day care and residential respite centres which used to offer welcome breaks for these hard pressed carers, have now almost all been closed. After a long fight, Girtrell Court is one such here in Wirral; it was the last council run facility. It will be replaced by a privately operated centre offering fewer than half and no emergency beds.
BME BME populations are disproportionately likely to be in prison, given psychiatric diagnoses, be unemployed, in poverty, the least likely to be involved in participation politics at every level, contribute to community actions, and suffer ethnic stigma and discrimination beyond that of white Brits.
Inequalities in all aspects of life are rife, and those relating to mental health are particularly huge.
Refugees etc…
We now have the extra problems of refugees escaping wars, trafficked men, women and children, enslaved and bonded people brought to the UK, all subjected to varieties of abuse before and after coming here as well as the widespread abuse of vulnerable native British children and adults; undoubtedly, these traumas will produce mental health problems in a large proportion. These problems and exploitations are most likely to increase as austerity deepens and an increasingly fragile society is deliberately torn apart. Asylum seekers incarcerated in detention centres operated by the private sector are also vulnerable to exploitation although they need and should have extra protections. Yarlswood run by Serco cut its staff by 30% last year worsening the conditions in which these women are imprisoned.
Carers, last in this list BUT not least
These are the unpaid, untrained, unvalued, neglected, involuntary volunteers who look after their relative(s) for years, often decades. They are ignored because they are not on anyone’s pay role. Even when their own health needs have become only too apparent after long years of exhaustion and struggle with patient / service user, authorities and other family/ paid work demands, and probably in poverty too, they remain invisible. Carers are often women, on-call 24/7, taking risks which no paid professional would be allowed to take by law. They give up their own lives in order to care for their relative(s), they don’t prioritise money above love (how very unfashionable!) They save the Exchequer about £120 billion /year – similar amounts to the cost of the NHS (both figures given to me by a very senior medic and now about 5 -8 years out of date). There was a Carers Act passed in April 2015 promising support for carers; I see no tangible outcomes as yet.
In summary, Newer evidenced productive practices allowing the family to become genuine partners aiding the recovery of mental health patients are infrequently practiced and not generally welcomed by many medical professionals. The profound effects of continuous cuts in statutory, local and voluntary services and their financial support alongside their disproportionate effects on those with disabilities especially those with long-term needs, is clear. Remaining NHS services are under-funded and over –stretched, the services they used to offer constantly weakened and reduced year on year, however excellent and cost-effective. The services are lost or assigned to private for-profit organisations concerned primarily with share-holder returns, not care for the patient / service user. Staff and patients are often short-changed by these private services. It is not clear how these problems will be addressed, particularly as the private company commonly reneges on its contract if it cannot make enough profit, and routinely sends its more complex and therefore expensive patients back to the NHS. What happens if the NHSi service no longer exists? The rhetoric is that the third sector, voluntary groups, will fill the gap left by statutory services withdrawal; these need funding (not provided), the volunteers need training (no money for this), and though well-meaning individuals, untrained volunteers are no substitute for properly trained professional staff to deal with these demanding problems, whilst the loss of skilled expertise is deplorable.
There is well established controversy concerning the ‘pseudo-diagnosis’ of mental health conditions which is a ‘tick box’ exercise undertaken on a particular day. It fails to consider the role of psychological pressures and socio-economic factors in the development of clinical symptoms. Few people are asked ‘What happened to you?’ and few have access to an appropriately trained psychologist who can help unravel difficult personal histories. Instead, underlying reasons are ignored, and the person is given prescribed ‘anti-psychotic’ drugs. So long as the person is quietened, doesn’t create an upset in the street, it’s job done, and another life on the scrap heap.
However, there is a huge and growing cohort of influential, experienced, established psychologists who have researched and lobbied for psychological understandings and practical techniques benefiting patients and relieving the psychiatrists block on more enlightened approaches. Unfortunately, with few exceptions as with CBT, they have had limited success. Is this good science or is it conflict between Royal Colleges? I cannot see it’s in the patient’s interest.
“Severe and enduring, a lifelong condition” this statement was made routinely to people suffering psychosis not long ago. It’s a very damning label and may often become a self-fulfilling prophesy for the service user, ‘condemned’ by an ‘expert’ when (s)he is an impressionable, vulnerable teenager / student / young person at the dawn of his young adult life, a time when he is least able to question it. Although most psychiatric professionals would hesitate to use that phrase today, some do, and unfortunately, it remains part of the mind-set of many traditional psychiatrists / medics, even if unspoken.
It is part of the ‘stigma syndrome’ common even in those who should be most aware. It is found in some psychiatric staff, GPs who choose to know nothing about mental health, hospital nurses who disparage their psychiatric colleagues, pharmacists specialising in psychiatric drugs (an advanced qualification) are dismissed by pharmacists with a basic degree, politicians referring to benefit claimants as ‘skivers and scroungers’, hospital staff who ignore patients and families in distress
In reality, recall that a third of psychiatric patients recover after one or a few episodes, another third take some years, and the remaining third become long-term patients – as happened 100 years ago. Equally real is that some service users, with or without prescribed medication, become successful academics, clinicians, researchers, chief executives, MPs, business managers as well as managing less high-profile jobs etc…. but they OFTEN have to conceal their psychiatric history to do so. That’s stigma again.
Those who want to try, should have support to ‘come off’ prescribed drugs, a slow and careful process which many service users, dreading a return to the ward, hesitate to take. Professional warnings about relapse if they stop taking the drugs are rife. Amongst the adverse effects of psychiatric drugs are: life span reduction by 20 – 25 years, doping, emotional numbing, reduced intellectual and physical capacity, weight gain (especially with Olanzapine), heart problems, ‘Parkinsonian’ type tremors, sudden death, dangerous white cell counts (Clozapine) etc… and a fear of what the future may have in store when life is already so difficult. These are dangerous drugs. Currently, service users may be told they have to find work, although they may have difficulty even getting out of bed. The threats of benefit cuts, and a condemnation to a life on the streets or in prison looms large. This is what happened when Thatcher closed the large mental health hospitals without making any alternative provision for their in habitants, and that experience looks likely to be repeated.