|The National PD Programme 2003-11|
Tuesday, 26 January 2016
Here is a email I received recently, with the personal details anonymised. I get a steady trickle like this, but this one expresses the problem particularly well, I think:
For years I have been desperately trying to find a placement in a therapeutic community or some sort of supported living. I have a history of eating disorders and Borderline Personality Disorder (with suicidal ideation and attempts) for which my Community Mental Health Team have tried to offer me various therapies . However, I need help with living and am becoming disillusioned in the fact that my team keep approaching each problem I experience, in isolation. I need some sort of holistic environment and know my needs best.
I have a care coordinator and have penned this letter to her today:
I’m having great difficulty trying to sort out my emotions at the moment, I feel as though I am making so many rules and barriers for myself that I don’t know where to turn.
It doesn’t help having the diagnosis of Emotionally Unstable Personality Disorder/Borderline Personality Disorder, as I already feel flawed as a person. I know that I am “difficult” but do not want to go on like this with this reputation following me everywhere.
My psychiatrist told me he has fought my corner when it came to me being admitted to hospital….I do not want to go into hospital when I do but I’m so totally desperate at times that 72 hours in a safe environment serves to stabilise me so that I can sleep and reassess my situation. I know I appear to be a hopeless case and believe me, I feel it at the moment.
I absolutely need help with managing my emotions (I know that the Bulimia/Anorexia are ways I’m trying to cope at the moment) and believe truly that the only way I’m going to be able to move forward is by getting help with living. I am not able to do this on my own, I don’t know how to but I am desperate to learn to be independent from my parents…I feel totally paralysed at the moment.
I’m asking again if there is any way I can get some sort of placement in a therapeutic community or somewhere that I get enough therapeutic support to be able to live without having to use bingeing, starving or self-harm to cope with my emotions. I have researched the subject and feel that I need the strength of like-minded people to help me progress to a manageable level of living. I would move to any location.
The local services I have been in just don't help me with these things, and I often end up feeling even more anxious, and sometimes quite paranoid.
I felt I had to write as I can’t express what I want to say when I’m in meetings.
[name withheld and identifying details changed]
As you can see, I have investigated every route I can to no avail. Can you point me in the right direction? I trained as an architect and worked as a lecturer but haven't been able to work for many years now. I'm in my early forties, and now receive Disability Benefits and Housing Benefit (for a flat that I can not live in alone). I feel I'm getting nowhere with my Mental Health Team as they just can not offer me any holistic living assistance. Wherever I turn I'm just not getting what I need. I don't know where else to turn.
Thank you and hoping for some help
Here is my reply:
You ask very good questions, which show exactly how the NHS does not treat people with your sort of problems at all well.
It’s a great letter to your care coordinator, but I don’t know how much she will know about BPD (which I’ll use as a term though I know it’s a rather horrible shorthand) and what is needed for people. So here is a quick summary from what I know of the system:
· People with BPD-type problems very often need more than their local CMHTs (psychiatrists, community social workers, support workers etc) can provide. That is ‘secondary care’ or ‘tier 2 PD’. It is usually limited to CBT (cognitive-behavioural therapy), which helps a lot of people, but isn’t usually enough for thorough treatment of BPD.
· Your local area might have what we call ‘tier 3’ services – which are locally available specialist treatment programmes for people with BPD diagnosis, or similar. They are usually things like MBT (mentalisation-based therapy), DBT (dialectical behaviour therapy) or STEPPS (systems training for emotional predictability and problem solving), though some have in-depth psychotherapy or non-residential therapeutic communities too. I don’t know what’s in your area – but I expect they don’t have much (like most places across the country, unfortunately), or you would have been referred to them.
· I do know there are good non-residential therapeutic communities in several of the other mental health trusts nearby, but not your own area. Unfortunately, you probably couldn’t be referred to them unless you lived in their areas, but it might be worth exploring with your care coordinator.
· If there isn’t anything locally, or your case needs more intensive treatment than the local services can give, there are five ‘national specialist services’, which offer residential PD treatment (‘tier 4’) – nowhere near enough services, of course, and most of them I would not recommend sending people to as they do not do much beyond standard DBT. But one of them, The Cassel Hospital in Richmond Surrey, does treatment in more depth. Website= http://www.nhs.uk/services/hospitals/overview/defaultview.aspx?id=3086. Your care coordinator could look into that with you – they’re an NHS provider as part of West London MH Trust. Their programme does not suit everybody, though, and their assessment process is rigorous in selecting only the people who are likely to be helped by their approach. It is basically intensive individual psychoanalytic psychotherapy within a modified type of therapeutic community, lasting 6-12 months.
· If that doesn’t work, you could start to argue for an ‘out-of-area placement’ to somewhere like Khiron House. That is a private clinic, but does good work for anybody with BPD etc who has a history of some sort of trauma – the usual stay is 3 to 6 months. But getting referred there and having it paid by the NHS is a difficult task – and is ultimately the decision of a special panel at your local CCG (the clinical commissioning group – which holds all the funds for NHS treatment nowadays). Though it’s difficult, it is not impossible – they differ in how they work, but most need a recommendation from your NHS mental health trust, and a supporting letter from your GP would also be very helpful. I can write to support it too, if it’s for Khiron.
· If that doesn’t work either (it often doesn’t) there isn’t much else to do unless you are able to pay for it yourself – but I do believe people in your position should get politically active and make NHS England and the politicians realise that there is a big unmet need here – that would actually save them a lot of NHS and benefit money in the long run, if they did something thorough and helpful about it! There is actually a national ‘PD Commission’ which is just being set up, and might be a good place to turn if you want to make a fuss. I can give you more details in a few weeks, once it has started its job – it’s chaired by Norman Lamb, one of the helpful health ministers in the last government.
Hope that’s some help.
Do get back to me if you want, though I don’t think there’s much I can do directly.
I think this shows what a complicated system we have, that ends up giving very poor treatment to many. And I would also argue that the way the system treats people who are in high emotional states can often make them angry, frustrated - and worse. Let's hope that the PD Commission, which is due to start its work shortly and finish in early 2017, helps...
Thursday, 14 January 2016
|I love taking pictures of mountains from aeroplanes...|
But what was it I was coming to? I had very little idea, but trusted the people who had suggested it: they thought that three of us from dear old Slough would find it worth our while to attend the manisfestazione. But just what a manifestazione was, none of us knew.
|Mountain air makes you happy!|
Next morning, we had a meeting with the main organisers – and it all clicked. They are building relationships – through sporting and social activities – that can be seen to have a more positive effect on people’s recovery from mental health conditions than medication and institutionalisation usually does. It’s a national organisation called ANPIS (National Polysport Association for Social Integration): www.anpis.it.
They cover Italy, and have been working for twenty five years; for the last ten years they have also been making links with other European partners as the ‘European Project’. Our work in Slough, including Greencare, the Hope Recovery College, the weekly micro-TC Embrace group and the keep-people-out-of-hospital ASSiST programme, could therefore be seen as a similar type of emancipatory psychosocial ‘better than mainstream psychiatry’ approach. Even more so as the ‘Therapeutic Town Slough’ initiative gathers momentum (see 8 October 2015 blog).
|The Slough Team|
The next fixed point is going to be the Summer Manifestazione in June, when we amongst several others are invited to part of it which will be a conference to pull together an EU research bid – which will hopefully start to generate the evidence to convince policy-makers that psychosocial care isn’t only cheaper, kinder and more human than the heavy hand of state psychiatry – but is more effective and is what people want.
Watch this space!
Thursday, 3 December 2015
Until seven years ago, Dr Manoj Kumar was a consultant liaison psychiatrist setting up oncology services in Leeds, in the NHS. Now he leads an NGO based at Kozhikode (Calicut) in Kerala which runs 43 mental health clinics for the poorest people in the surrounding areas, and two Masters-level training programmes for psychologists and social workers: Mental Health Action Trust (MHAT) - click for website.
We visited two very different clinics in rural villages outside Kozhikode, and held a seminar with the psychology students at the MHAT training base in the city. Interestingly, Kozhikode has just been voted the second best city to live in India.
Talking to Manoj, he explained several hallmarks of MHAT that make it unique:
· Volunteers are used to provide extensive psychosocial input, including home visits and day care centres.
· There are many more volunteers than paid staff (who are qualified clinicians)
· Nearly all the clinic administration is undertaken by volunteers
· The volunteers in the village projects have support from Manoj who is available by phone to discuss medication issues etc
· People are screened to ensure they are very poor. For example, having a mobile phone would probably exclude somebody.
· Supporting compliance with medication is often important, but it is also part of the psychiatric philosophy to ensure people are on as little medication as possible.
· They engage with the family and head of the local communities.
· The normal state service for those who can’t pay is entirely hospital inpatient-based, and best avoided.
· People who can pay a little more would generally see a private psychiatrist and get little care apart from a prescription.
· Unlike most of the rest of his career, he get up on a Monday morning excited and enthusiastic about going to work!
Manoj himself was very open and honest about how he can see mental health from three angles, and uses them all in his clinical conversations: as well as being a psychiatrist, he described how he had experience as a patient with a depressive disorder needing medication, and as a carer when his elderly father was dying with dementia. I got the sense that this sort of candour is even more unusual in India than it is in the UK - but what a powerful anti-stigma statement it is.
|This way to the MHAT clinic!|
|The day centre|
|Staff and volunteers - including two friends from Penukonda LLE|
The volunteers proudly showed us the work they were doing it and how they documented it all (in utterly incoimprehensible Malayalam script, plus books of photos and artwork). Perhaps, and most noticeable of all, was the sense of espirit de corps and team cohesion: sadly not always the case in British services. A joyous bunch of mental health workers who clearly really enjoy their work, and are very proud to be doing it.
|The clinic base - and mobile pharmacy - for the forest colony|
|The children wonder who we are...|
|Across the Western Ghats|
|Teaching session in Kozhikode|
And so to bed - before our return to Bengaluru and Sunday afternoon Christmas shopping with Anando's mother (surprising successful and enjoyable for one like me who generally hates shopping!)
Thursday, 26 November 2015
When we started the British LLEs at Commonwork organic farm and study centre in 1995, an important part of the bonding ritual for the staff was to meet in Sevenoaks Sainsbury’s to do the shopping. We would travel from wherever we worked and gather, at about 5pm on the day before the workshop started, in the coffee shop. Then we would start in earnest and, after about two hours, end up heaving around four or five shopping trolleys containing all the meals, snacks, drinks, and everything else we were going to need for the three days in our Kentish therapeutic bubble. Even in those days – now between ten and twenty years ago – the bill at the till would come to something between seven and nine hundred pounds for about twenty five people. More recently, we have become a bit lazy – and Sue has done all the shopping for us with Tesco Online. Although it’s a lot more efficient, and tightly budgeted (it is now less than six hundred pounds), we have lost something in the process: we also used to treat ourselves to a meal out at the Chiddingstone Castle once we had unpacked it all – now we just cook something simple for our pre-workshop evening meal, in the modernised kitchen at Bore Place (the Jacobean manor house we’re based in at Commonwork), and have our pre-workshop staff meeting. For our Indian Adventure, the food was going to be a different experience altogether – and in comfortable city-lifestyle Bangalore, we had no inkling of just what that was to mean…
|Not like Sainsburys|
|Getting it in the car|
The dual carriageway gave us a false sense of security – and it was almost like an augur as we came off it and onto the village road and approached the training centre: no longer just animals, people and vehicles – but a bright green bush, the size of a small car, travelling towards us like something from another world. As it passed, we saw there was a wiry and athletic old man beneath the bush (which was a mass of freshly cut sugar cane), on a small scooter. But another world, it certainly was.
|Arriving at the Training Centre|
In India, we had become used to some of our normal facilities being intermittent or only available in some places – like air conditioning, broadband, mobile phone signal and hot running water, and to have short interruptions to electricity. But this was to test us much further – no chance of internet or phone signal unless you drove into Penukonda village (about 3km away), no hot water unless you boil it yourself over a log fire, no running water at all for hours at a time (seemingly something to do with the electric pump to the water tower, which also explained why water was pouring over the side and flooding the muddy path between the different buildings), a little bit of gas for cooking – but most of it needing to be done on smoky indoor log fires, and very intermittent electricity. And this is to say nothing about our safety being compromised by the voracious insects, snakes and other aggressive wildlife we fantasied about, and imagined we were hearing, at night. Then there are the termites, which apparently can eat all the wood in a door in about three months – leaving just the paint holding it together, and mostly dust where the wood was. Anando found this out when we tried to go into one of the dormitory blocks through the back door, half of which immediately disintegrated into powder as he pulled on the handle. Hence most doors in the place were metal – but the climate had taken its toll there too, with many of them rusted and either difficult or impossible to close and lock. Then there were the sliding metal grills, slightly rusty and stiff from lack of regular use, between the different sections of the training centre - mainly to isolate the kitchen and dining area from the outside. What were they for, and why were there so many of them?
|The washing-up room|
The answer turned out to be the biggest animal threat that we encountered: a species much closer to our own than any of the ones we feared – monkeys. At first they seemed quite cute, a family of four sitting on top of the roof, watching us come and go as we unloaded our goodies from the supermarket. Then we returned after going to somewhere else on the site and noticed something wrong – where had we put all those pappadums? Didn’t we have five loaves, not three? And what were those bits of half-eaten banana under the table? Far from watching us with benign and friendly interest, they had been sizing up what we were putting where, and how they could half-inch as much of it as possible. And now they were not just a sweet little nuclear family, but an extended family – probably a whole village of monkeys – coming at us from all angles in the trees all around. The most audacious theft was when I was carrying half a loaf of bread to the kitchen to make myself some breakfast, slightly blurry with virus and fever I’d contracted, and suddenly something swooped down from the tree by the entrance grille, I felt little finders grapple with my hand - and before I knew what was happening, the half loaf was disappearing up a tree with several of the cheeky monkeys grinning down at me. So much for my curry-free breakfast of toast and marmalade!
After we had finished unloading the food and luggage, we had our traditional pre-workshop staff meeting, going through the application forms of everybody who was expected to turn up the next day, before going to Chandra Kanjilal’s house for dinner.
Chandra is a retired woman of extraordinary energy and experience, who had set up the training centre (link to Google Maps, earth view here) about twenty five years ago, with German international development funding – and has lived there with her daughter (an NHI employee, sometimes her son-in-law (who works away), an elderly dog, a young dog and four playful puppies ever since. Until the development funding methods and perceived needs changed about seven years ago, she ran numerous courses – for dozens of people at a time for extended stays at the training centre - to help empower local rural women, from all the surrounding areas. The stories she told us of how utterly disempowered they were seemed a far cry from what we think of as ‘disempowement’ in the UK. For example, how women were exploited by money lenders, suffered domestic abuse, sexual abuse and, if they were widowed or divorced or had mental heath problems, were terribly exposed to the likelihood of severe abuse, exploitation and ridicule. For women,the situation was, and to some extent still is, inconceivably awful for those if us living comfortably in the west: although the enforcement of dowry payments is no longer legal, it still happens - and the effect of this has been to make girl births in jeopardy of infanticide.
But the centre had been unused since the last of the courses, in 2008, and it was rather sad to see many photo boards in the training centre rooms, faded and decayed with age, showing the place full of life, action and energetic people doing emancipatory things together. So Chandra is very keen that it takes on a new lease of life as a venue for the LLE mental health training – which is hopefully also emancipatory, and in the service of empowering staff, and ultimately patients, in a way that is progressive, sustainable and powerful. Hence a potential win-win situation in her relationship with HNI.
|The community room|
|Safiya shows us how to cook when it's our group's turn|
nd emotions. Most seemed to have got a lot out of it, as had we. An extraordinary, and unforgettable, experience.
Follow the LLE link on the right if you want to try it for yourself…
Tuesday, 24 November 2015
NIMHANS has always occupied a place in my mind somewhere near the Maudsley and Institute of Psychiatry, and my own psychiatric training - with fantastically high institutional standards but also a punishing and paranoid culture for the poor juniors who work there. I remember this in Oxford as ‘the dark shadow of the University Department’ and how nobody walking its corridors ever smiled – and we all lived in fear of getting the dreaded ‘green memo’ from the heart of Mordor (the professor’s office).
|NIMHANS - the gardens b etween the inpatient wards|
|NIMHANS - Family Psychiatry and Rehabilitation|
We went to a well-westernised coffee bar (multi-coloured LCD lights, not much Indian food on the menu and loud pop music) for our debriefing, with a burger and salad lunch. Unfortunately this coffee bar, unlike the ‘Café Coffee Day’ chain that seems to be spreading everywhere, had no coffee, and then the waiter told us that tea was off as well. So we went off to our next encounter: Athma Shakti Vidyalaya, ASV.
ASV is one of the first TCs which joined the Royal College of Psychiatrists’ ‘Community of Communities’ quality network - soon after it was set up in 2002. I was the external peer reviewer for its first review in October 2003, and remember being bowled over by how the culture and ‘smell’ of a TC was as easily recognised in such an utterly different culture as urban India as it was in London, rural Cumbria or the Home Counties. But this time we were a threesome, and we only had an hour and a half with them. The first difference I noticed was how a rural village on the outskirts of Bangalore – surrounded by big fields, wandering cows and children playing cricket - had become a dense urban development filled with apartment blocks, a new Hindu temple, tarmac roads and buildings everywhere. Such is the pace of Bangalore’s expansion, Anando explained to us.
We started off with a rather formal-looking session with the three of us behind a desk, and serried ranks of staff and interns arranged in rows filling the rest of the room. However, we soon got into an interested exchange about what we had in common, how we differed – and what had changed since I was last there. Then it was time for community tea – and we had milky tea (without sugar, by special request), biscuits and Indian sweets. We were enthusiastically welcomed by the members of the community: they wanted us to stay, or come back, or even work there!
The members come from far and wide – and have a wide range of reasons for being there: some see it as their home for ever, some use it as a secure base from which they go out and try to get on with life and come back if they need to, and some seemed to want to get away from the place as soon as possible. It was clear how some members felt listened to in a way that made others therapies they had received seem superficial, and not able to fully understand their situation and problems. Most people there had their places funded by their families – who sometimes pay for them to stay indefinitely. Because there is now quite a number of long-stayers, ASV is considering whether to build a new block in the middle of their yard to house them. Of course, a treatment like ASV is inaccessible to most people as they don’t have any money.
|The entrance to Christ's - a 'corporate university'...|
|...which still has a lot of students.|
We knew the next day, Wednesday, was going to be hard work – but we didn’t realise quite how much Anando had packed in. We started with a three and a half hours lecture/seminar session at Christ University – which is what they call a ‘Corporate University’, meaning that the fees are much higher than a state university, for which the students receive pretty much the same education, but have much more comfortable and modern buildings and facilities.
|Talking to the Christ's University students|
After a quick rice and curry lunch in the students refectory – a vast space with an even more vast number of students in it (there certainly seems to be enough people around to pay the fees for their study at a corporate university) – we were heading off to our next assignment: a team meeting with all the HNI staff in Anando’s parents’ front room. Interesting facts we learned about HNI include the geographical spread of their activities, that some of their staff are volunteers, and that the non-volunteers are all paid exactly the same.
After this, just before the sun set, we were led up to the top of a nearby building where there was an airy terrace with views across the city, a bar, food service area and a circle of twenty-odd chairs: lovely evening views across the city, a gentle breeze and music of the city traffic just warming up for the rush hour. Beep beep beeeeep honk honk vrooooom vroom.
was the setting for the three-phase evening event to which all the HNI stakeholders
were invited – the Social Evening. The
first part was a reception and general mingle as everybody arrived – Sandra braved
the streets of Bengaluru for the two minute walk from Anando’s parents’ house
with a couple of others HNI, got lost and arrived just in time for the next part.
Which was a group discussion on ‘where to with HNI?’, in a conversational
competition with the orchestra of traffic - which had now finished warming up,
and was playing at full tilt. Which made the discussion a little difficult, a
problem the group tackled by bringing all the chairs together into concentric
circles so everybody was within a few feet of each other. Some good ideas were
batted about, with plenty of energy and passion – particularly from the
families of community members. Then it was time to eat, again. And beautiful
food, again, with plenty of people and good conversations with people from all
sorts of different backgrounds (the orchestra was quieter by now). And so to
bed – in preparation for the biggest adventure of all: the Penukopnda LLE…
Links to talks:
|Sunset above the hurly-burly|
Links to talks: