What will the new DSM-5 mean for us Brits?

There was a slightly provocative headline to this Guardian article a couple of days ago. “Asperger’s syndrome dropped from psychiatrists’ handbook the DSM”. This refers to the DSM-5, the forthcoming fifth edition of the Diagnostic and Statistical Manual of Mental Disorders, which will be published by the American Psychiatric Association. Though actually Asperger’s isn’t so much being “dropped” as merged into one catch-all diagnosis of Autistic Spectrum Disorder.

This left me wondering about how the new DSM will affect mental health services over here.

I suspect it initially won’t affect us a great deal in Blighty. Psychiatrists in the UK usually base their diagnostic categories on the World Health Organisation’s ICD-10 rather than the American DSM. Also it’s important to note that diagnostic categories are not the only thing that affects what mental health services will or won’t do. There may be a diagnosis listed for, say, “oppositional defiant disorder” in the DSM and ICD-10, but my Child and Adolescent Mental Health Service doesn’t accept referrals for it. Such problems are considered the realm of school strategies, parent training and youth offending services, not child psychiatry. Those who say that psychiatry is out to medicalise all forms of human behaviour can take comfort that in our corner we wouldn’t be able to do that even if we wanted to. We don’t have the time or resources.

But it is true that what happens in America has a tendency to filter down to the rest of us, though not always. Pediatric bipolar disorder, for example, never really took off outside the United States.

I’m in two minds about the idea of merging Asperger’s into ASD. On one level I can see a rationale for it. It’s really not clear that Aspergers is a distinct condition from ASD. I also can’t think of anything that we do differently as a result of saying that a child has Asperger’s rather than ASD.

On another level, I wonder what effect this might have on the neurodiversity community and the sense of identity that some people have fostered. Also, I’m slightly concerned about the effect this might have, given that we’re referring to a condition that causes people to have difficulty coping with change.

This article on NHS Choices gives a few of the other changes. A new category coming in is “disruptive mood dysregulation disorder”; basically an angry child. The rationale given is an eyebrow-raising one, “to address concerns about potential over diagnoses and overtreatment of bipolar disorder in children”. In other words, the whole fad for pediatric bipolar disorder got so out of control Stateside that they had to create a diagnostic category to accept that some children get angry a lot. By comparison, I’ve been in CAMHS for five years and I’ve never met a pre-pubescent child with a diagnosis of bipolar disorder. Neuroskeptic has an excellent critique here, in which he points out that it basically describes the same thing as oppositional defiant disorder.

My guess is we won’t be accepting referrals for disruptive mood dysregulation disorder either.

There’s also some diagnoses going into the DSM-5 under the category of “conditions that require further research before their consideration as formal disorders.” Such as “internet use gaming disorder.” Here’s a musical number from some precontemplative addicts.

I doubt we’d be accepting referrals for that either, other than to write back suggesting the parents unplug the X-Box for a while.

There’s also some proposed categories that aren’t going to make it into the DSM-5, such as:

parental alienation syndrome – a term proposed to describe a child who ‘on an ongoing basis, belittles and insults one parent without justification’

Fair enough, because including that would be really silly.

There’s probably a lot more to be said about the DSM-5, particularly about the new dimensional approach to assessing personality disorders, but I’ve limited myself here to discussing it from a CAMHS perspective.

Dementia Friends

The Department of Health has, today, launched the Dementia Friends scheme.

It’s a lovely scheme to promote greater awareness of Dementia by recruiting an army of  volunteers. These volunteers will be trained to have an ‘understanding of dementia’  As the website itself says, if you become a ‘Dementia Friend’

We’ll equip you with an understanding of dementia and how you can help, and the rest is down to you. We want Dementia Friends in every community – in every hospital ward, post office, place of worship, and on every street. Our target is to reach a million people by 2015, and we’re confident we’ll not only meet this target but will beat it

Wow, that’s great. Really it is. I’m (for once) not being sarcastic. I work with a lot of people with dementia and having to explain it to them and their family members, I see the fear and lack of understanding and I wish that there were a greater knowledge in dementia in the community and this seems to fit the bill.  In my social work training course, over two years, I had one lecture on older people – I can’t even remember if dementia was mentioned. That’s plain wrong. It needs to be a meaningful part of every training programme and on many courses.

First I thought Dementia Friends would be like a massive new befriending scheme for isolated people without family and friends and excluded by community  as the site says

Alzheimer’s Society research found that nearly two thirds of people with dementia feel lonely, and almost half reported losing friends following their diagnosis. With one in three people over 65 developing dementia, it’s vital we change this picture.

But reading more I see its  about encouraging people who are Dementia Friends not to abandon those of their family, friends and social circles who have dementia and  not to ‘drop’ them as the illness progresses. Which is also a very good goal.

I guess I just see a disproportionate amount of people who don’t have family/friends/social networks or maybe I’m seeing them after their networks have abandoned them.

Early Diagnosis

One of the aims of this scheme is apparently to encourage earlier diagnosis of dementia. Again, a very laudable aim. The Guardian previews Cameron’s announcement

Cameron will say: “Through the Dementia Friends project, we will for the first time make sure a million people know how to spot those telltale signs and provide support. There is still a long way to go in fighting the disease, but together we can improve the lives of millions.”

The scheme will provide free coaching sessions on how to spot the signs of dementia and provide support to people with the condition.

Each Friend will be awarded a special “Forget-me-Not” badge once they have completed their training, so that they can be easily identified as being able to assist people with dementia.

So when the dementia (and remember there are lots of causes for forgetfulness and confusion other than ‘dementia’)  is ‘spotted’, I imagine the hope is that the Dementia Friend will encourage the person they have potentially ‘spotted’ to get screened.

All good. Again back to the Guardian which says

The rate of successful diagnosis is expected to double from 42% at present to 80% – a target set by Cameron earlier this year when he launched his challenge.

Healthcare professionals will also be required to ask all patients aged between 65 and 74 about their memory as part of their standard health check. Simple diagnostic tests will be expected to be done on site, cutting waits that at present can be as long as 18 months.

Post Diagnosis Support

So we are able to identify and diagnose dementia earlier. Really that’s great. It allows people to have more time to adjust and to make plans regarding their needs in the future. We have more people who are aware of the needs of people with dementia in their own social circles and prepared, we hope, to be more tolerant and supportive.

However we can’t allow the happy clappy Department of Health talk to get away with the fact that dementia services and provisions have been slashed to bare bones. There is little left to provide to people who have early diagnoses, particularly if they don’t have that family support because the resources just are not there.

I’m all for early diagnosis if people want that (and not everyone does but that’s an individual thing) but if this is the same government that has launched a savage attack on local authority social care services which were barely fit for purpose at the best of times then I can’t help but be cynical about some of these provisions.

I’d like to see more research and provision of different types of care both in residential settings and at home so we aren’t at the mercy of large private companies creating ever larger residential and nursing homes in suburbs where the cost of property is low that house up to 80+ residents with dementia in places that are difficult for family to access without cars.

I’d like to see some of this ‘dementia challenge’ money put into allowing local authority assessments to build cost of non-directed advocacy into support planning – that would make an immediate change in the quality of life of those with dementia.

I’d like to see some honesty around the poor quality care for people with dementia currently in social care and hospital settings. Maybe some of that money could be invested in paying care staff better and more importantly improving training.

Big Society

This is very much a ‘big society’ volunteer type role. Good luck for those who participate. I’ll likely join up myself but lets not forget that this means distribution of volunteers may not be equal and those who have no community as such will not have the same benefit of access to these who volunteer.

So a good initiative and well done but lets not forget that if the government aim is to increase diagnosis, they have to be prepared to put more money into improving what happens and what support is available after diagnosis.

The ‘Red Tape Challenge’ does Health and Social Care

Red Tape

We all knew it would come in time. This wonderful government idea to slash all that awful ‘red tape’ that stops people doing what the government otherwise would stop them doing finally arrives at Health and Social Care.

I had a brief look at some of the provisions detailed as ‘red tape’ for which the government is asking for comment and quite frankly, I am horrified.

What I might see as essential protections, they are presenting as ‘red tape’ and asking for feedback about potential abolition.

This is a consultation so it’s really important that as many people as possible to contribute and in the joyful spirit of openness, the website allows up to see the live commenting on others. I wonder how those with less technological access or knowledge are able to comment quite so openly about some of the provisions up in the air.

But openness and accessibility only seems to go so far and for the government departments responsible they seem to be after whipping up public distaste of ‘red tape’ although actually, we really do need to move from the idea that bureaucracy is necessarily bad.

There is a separate website entirely to focus on ‘ regulatory enforcement’ and where it might be unnecessary.I feel robust regulation (and thus, enforcement which has to follow as a result) is essential. The big problem with social care and health regulation since the CQC was established was the ‘light touch’ type approach which had been taken and the ‘back office’ regulation and not enough enforcement.  I really really hope that it is not cut back further. I want to see more regulation and stronger enforcement, not less of it.

But back to the ‘red tape challenge’. I want to share some of the provisions ‘up for discussion’ that the government has classed as ‘red tape’.  I’m solely concentrating on what is up under ‘Quality of Care and Mental Health Regulations’ as I felt that was the area I knew best. The numbers refer to the list of these ever so demanding provisions in the Excel list here.

39 is that oh so burdensome (!!!) regulation that requires the Care Quality Commission ‘to monitor and access for monitoring purposes, people who are deprived of their liberty’ and necessity to report this to the Department of Health.

40 is a nice one about requiring people ‘who assess Deprivation of Liberty’ to have an enhanced CRB.  – clearly unnecessary because.. er.. people who lack capacity and may potentially be subject to DoLs aren’t likely to be vulnerable, right? I think there’s an issue about effectiveness of CRBs in general but a bit worrying that that’s considered ‘red tape’.

43 is much more worrying as it is the obvious ‘red tape’ which introduced IMCAs as a safeguard for ‘those who have noone to speak on their behalf’ making them mandatory in abuse and review situations. RED TAPE??

55 is another ‘good one’ which ensures that IMHAs are ‘of an adequate standard’ because clearly, that is unnecessary (!?!)

Obviously there are many many more – I’ve just, for reasons of time, picked out a few that interest me personally but do have a look at them and COMMENT.

I’m frankly insulted that some of these provisions are even considered to be ‘red tape’  but as there’s an open consultation, it’s important that as many people as possible who know and understand the implications of removing them, to contribute.

If the government want to know what ‘red tape’ is in terms of adding unnecessary burdens, I’ll gladly explain about how useful (or not) it is to spend time recording how much time I spend on ‘smoking cessation’ work or time spent ‘clustering’ people according to diagnosis into tiny little tick boxes which are, clinically, unhelpful in order to get the ‘Payment by Results’ systems which will never work well, up and running. THAT’S red tape.

But it seems to be red tape that potentially infringes on the rights of those who might be least able to protect their own that they are classing as ‘red tape’ here.

Contribute to the consultation and let’s tell them how important some of these provisions are.

Oh, and someone should tell the Department of Health that the GSCC doesn’t exist anymore as they seem to have forgotten on their Professional Standards page (published this week!) but we know how much interest the Department of Health has in social work and social care so shouldn’t really be surprised.

Pic by Martin Deutsch@Flickr

What I would say to Norman Lamb

Norman Lamb MP

Working in dementia services at the ‘frontline’ I often consider what messages I’d feed back to the local and national policy makers if I ever had the opportunity. Of course, I don’t have these opportunities as I’m not a manager so I thought I’d imagine I were at an important meeting with Norman Lamb, the minister for Care Services.

This is what I’d say.

Make policy practical. Making the right noises about setting up a wonderful plan to ‘challenge’ dementia is all well and good but I see nothing of that at the ‘frontline’.

What I see are cuts. I see respite narrowing in terms of ability to access. I see provisions which had been helpful, closing. I see a lack of beds in the local hospitals when they are needed and I see people who need support being denied it because there are no provisions left.

So take your pleasantries and policy ideas and come and spend a day with me in the community and you’ll see why I am impatient and unbelieving about the platitudes that emerge from those who don’t seem to understand what is happening ‘out there’.

I’m tired. I’m tired of saying ‘no’ to people whom I see need services because the provisions are so tight. I’m tired of saying ‘no’ to people at the early stages of need when I know it will prevent higher costs in terms of pain and suffering but also in terms of money in the longer run. I’m tired of logging targets that have no meaning in the lives of those whom I work with. I’m tired of jumping through artificial targets so I can ‘prove’ I’m doing my job when neglecting visits to actually talk to people because I have to catch up on the paperwork.

I have waited for years for a fair system of implementing personalised responses to care which include people with dementia but am still waiting because the entire focus on the programmes developed through personalisation have been on those who are more able to be involved in the processes or those who have involved family members to help them. I’m tired of wading through appallingly designed forms, self assessments and RAS (resource allocation systems) that focus entirely on physical health needs and marginalise mental health needs thereby ignoring equality legislation.

I want action and yes, sometimes, action includes money. I know what the people I work with ask for and I know I can’t deliver it – not through a lack of will – I want to be able to go home thinking I’m doing a good job and doing my best – and for the most part, I think I do – but the best I can offer is very sparse. The best i can do isn’t good enough.

We have few residential homes locally and are placing people further from their families. We have nothing ‘creative’ left to offer as those agencies which are helping with ‘support planning’ aren’t trained to offer support in non-directed advocacy and therefore if someone doesn’t ask, they don’t get.

So what would I do? I don’t have a budget and it’s probably for the best as I’d steam through it in five minutes – one of the many reasons I’m not and will never be a manager – but I would focus on trying to create a system of social care which offers equality of access to good and creative support planning.

I’d commission more non-directed advocacy into support planning. I’d roll out Individual Service Funds for people with dementia and I’d allow more time for carers – and for social workers to work with people who have dementia because honestly, that’s what’s needed.

However all we get is platitudes about how wonderful services will be without extra money being provided. Yes, I’m sure early diagnosis is important. It is. But please, please can the Department of Health and local government concentrate their minds on what is happening now and the poor services we are providing now and do something, anything to make them better.

I want to do my job well and I want to support people but all the tools I had available for doing so are being ripped away from me. It’s sometimes hard to keep the motivation up when you don’t believe you are helping anymore.

I’m the person saying ‘no’. Me, not the Head of Adult Services, not the Ministers responsible, not the councillors responsible. I sit in people’s homes and tell them what they are not entitled to anymore. I want those who make these decisions to take responsibility for that and to listen to us who go out there and who see.

That’s what I’d like.

picture by Liberal Democrats at Flickr

World Mental Health Day 2012

10 October marks World Mental Health Day. This year’s theme focuses particularly on depression.

Having worked with and known people who have suffered with depression, I think awareness raising in this context is crucial. The word ‘depression’ has moved into common parlance. I might talk about feeling depressed on a daily basis when something comes up that affects my mood negatively.

Actually suffering from the symptoms of depression is vastly different and in some ways, language isn’t a friend to those who do suffer from depression.

As we allow ‘depression’ to become almost synonymous with ‘sadness’ we misjudge a swathe of people for whom the illness is an immense source of difficulty. pain and distress. Depression isn’t sadness. Depression isn’t about the ebb and flow of mood. Depression can be debilitating and hopeless. Depression needs to be far better understood in that context and in the context that it can affect anyone and everyone – regardless of background, class or social status.

We can’t make judgements externally by looking at someone else’s life and decide if they ‘should be happy or not’ because depression doesn’t work like that. Life doesn’t work like that.

What we can do is look and see if someone is suffering and if they are, why should we do anything other than empathise with that experience of suffering and try to alleviate that in any way possible.

Having walked alongside, as far as possible, those who have and do experience depression, I have an admiration for the immense struggle that comes with each day and I learn from it.

My hope for this World Mental Health Day which seeks to increase understanding and reduce stigma is that depression isn’t seen as something is a decision people make about their lives. It can’t be ‘shaken off’ at will.

That needs understanding and that needs focus.

AMHPs and Stress

Dolly Stressed Out!

Back in January, Zarathustra posted a link to a survey for AMHPs on stress and burnout. This was for a piece of research being conducted by Janine Hudson, an  AMHP studying for an MSc in Mental Health Social Work at King’s College, London.

AMHPs are Approved Mental Health Professionals who, according to Wikipedia are ‘trained to implement coercive elements of the Mental Health Act (1983) as amended 2007’ so we (because I am one myself) make decisions with requisite recommendations from medical professionals, about whether someone needs to be admitted to hospital and treated without their consent. There are other roles for example in relation to Guardianship and Community Treatment Orders and certain tasks that are reserved for AMHPs legally but we have specific training around Mental Health Legislation and the implementation of it.  It is a role which does demand particular expertise, sensitivity, compassion and intellectual rigour to conduct well.

Janine and Dr Martin Webber who co-authored the study were  generous enough to share with us here (AMHP Survey 2012)  and while I am not entirely surprised by her results, I was saddened that my own gut impressions seemed to be more than just gut impressions.

Over 500 AMHPs responded to the survey and as many as 43% met the threshold for ‘common mental disorder such as stress and anxiety’. The threshold for burnout was much lower but it does raise the question about the amount of support and consideration given to practising within this particular role in local authorities in particular – whose responsibility warranting them (us) remains – but also within employing NHS Trusts. One of the aims of the study was to determine any differential in stress levels experienced by social work AMHPs and non-social work AMHPs but the findings were that there were still very few non-social work AMHPs and there was little differential. Locally, I know that there have been some issues around funding of non-social work AMHPs as it is a duty of the local authorities to provide sufficient AMHPs and as money is stretched, NHS Trusts have seemingly been less keen on sending people to train for a significant period.  It will be interesting to see how that picks up over the years but as the purpose of extending the role to non-social workers in the first place (we used to be Approved Social Workers and it was a reserved role which only social workers could take) was that there were too few AMHPs, it seems that issue hasn’t really resolved itself fully yet, four years after the switch.

71 AMHPs responded that the work as an AMHP had not had an impact on their non-AMHP role, however most of those worked in dedicated AMHP services because for the rest, the issue of managing AMHP and non-AMHP tasks with no workload concession, an increase in unpaid hours and pressure of work were contributing factors to increased stress.

I have certainly found personally that the AMHP work I carry out encroaches substantially on my ‘regular’ work as the amount increases. I am sometimes called out at very short notice to carry out assessments and these assessments take priority over all the other work I do due to the urgency and statutory nature of the tasks.  I have missed and moved visits at short notice and I can’t use any excuses to service users I work with (because obviously I can’t discuss my other work with them) so I apologise profusely and humbly but my stats aren’t as good as my colleagues in the same team and this is challenged. It is an additional pressure but any mention of removing some of my caseload responsibilities are met with a sad and sympathetic sigh. It’s just not happening!

Sadly familiar too, were some of the difficulties raised in terms of working and organising assessments across different services particularly as resources are stretched. Availability of ambulances, doctors and police are all  factors  in trying to manage and organise an assessment and certainly a factor that I recognise however the overriding issue was one of a lack of available beds.

Personally, I have found this to be much more acute as a issue over the last year and is getting increasingly worse. It isn’t wholly unrelated to the local Trust closing down wards to ‘save money’ however it has led to a massive increase in the provision of private beds at higher cost and further distance. This is the kind of ‘strategic decision’ that makes you wonder about the way snap decisions were made.

The impact on the patient is significant but it is also increasing stress levels in members of staff.

Generally, the research study indicates that AMHPs broadly feel unsupported in the role – except (perhaps unsurprisingly) by other AMHPs but in terms of management support/supervision/debriefing, it can vary significantly.

The report concludes that employers should do more to recognise the important and often difficult role that AMHPs take and reward with workload relief and a pay differential that acknowledges how much other professionals are paid for the work too.

My thoughts on reading this survey are that I’m unsurprised. I think it’s hard to explain to someone who is not involved in the role what exactly it entails but there is an enormous amount of responsibility taken  by the AMHP and it does feel to me, personally, that this is not appreciated or understood by my employing organisation. I wonder if there is a general awareness of some of the stresses that can be placed on an AMHP (and I’m absolutely sure every AMHP has been in this situation) when there is a great deal of distress after a decision to admit has been taken and the doctors have gone and we are waiting for the ambulance – maybe with the police, maybe not – but there’s a great deal of responsibility being handed to the AMHP at that point. It’s important that we are given substantial support.

My best support has definitely come from other AMHPs.

Saying that, while I won’t ever say I enjoy the role because depriving someone of their liberty is a very difficult, challenging and distressing process – the learning that I have done as a part of being an AMHP  has been significant – in terms of my understanding of mental illness and in terms of my practical application of the Mental Health Act, Human Rights Act and Mental Capacity Act.

Being an AMHP has made me a better social worker without any doubt and being an AMHP has and does make me reflect constantly on what the ‘system’ does and doesn’t do to those who come through it – and my role within that system.

However benefiting from the knowledge doesn’t mean that we shouldn’t get greater support for the role. That’s clear from this report and thanks to Janine for sharing her research with us. I hope that it will be disseminated widely to all local authorities who engage AMHPs and if you are an AMHP or know one, take it to your next forum meeting and discuss it.

In order to care and plan best for others, we really do need to look after ourselves and our own mental wellbeing.

photo by kelvin255 @ flickr