Borderline Personality Disorder: a good question and a poor answer

The National PD Programme 2003-11

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:

Hello

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:

Dear Rachel

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.

Thank you

[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:

Hello  

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...