The State of ‘Personality Disorder’ Services in Wales

 March is upon us and this is my first blog of this year.  The main reason for that is that I’ve been desperately trying to get my dissertation finished and any writing that has not contributed to that 18,000 word total has felt like a betrayal.  Anyway, it’s handed in now and it’s time to cast my eyes upon the land of my fathers as the British and Irish Group for the Study of Personality Disorder Annual Conference is coming to Cardiff on March 20th.  With this in mind, it’s worth looking at how Wales responds to the needs of those diagnosed with personality disorder and how we compare to our neighbours on the other side of Offa’s Dyke.

In some ways, Wales has been quite pioneering in this field.  While the NICE guidelines for borderline personality disorder were published in 2009, Wales laid out its own blueprint for services in 2005 calling for the provision of specialist services that were integrated into current provision.  This was echoed in the NICE guidelines 4 years later.  With Welsh Government guidelines and the National Institute for Clinical Excellence requiring trusts to provide specialist services you would assume that Wales would have ploughed ahead.  You would be mistaken…

In 2017 Oliver Dale and his colleagues undertook a review of the provision of personality disorder services in England.  They found that 84% of trusts provided a specialist service.  In Cardiff in 2016, at a conference that gathered people from all the trusts in Wales, we very quickly replicated Dale’s study.  We found that less than half of Welsh trusts (3/7) had specialist services.  This was odd because 2 had services that were recognised as being very effective while areas that didn’t have specialist services talked about “the privatisation of PD” – how those diagnosed with a personality disorder were ‘not their business’ and were sent to expensive independent hospitals miles away.

Given the potential for specialist services to reduce the amount of people sent (and they go under the mental health act so they are literally sent) out of area I began to wonder why the Welsh Government wasn’t pushing trusts to follow NICE guidelines, or even its own guidelines.  I wrote to the Health Secretary asking if he could encourage trusts to follow his own and NICE guidelines or explain what they were doing that was better.  The disappointing response was:

“I hope you will understand that neither the Cabinet Secretary nor Welsh Government officials can intervene in health boards’ day-to-day operations”

This seems to me to be a preposterous answer.  Not least because one of the Welsh Health trusts is under ‘special measures’.  This is defined as “Current arrangements require significant change. Welsh Ministers may take intervention as set out in the NHS (Wales) Act 2006.” So in contrast to the answer I received, Ministers can not only ask why NICE guidelines are not being followed, they can take intervention to remedy it.  In this case they merely choose not to.

If over half of Welsh trusts were refusing to provide treatment for people with cancer I suspect someone at the assembly would pick up the phone.  If half of Welsh trusts declined to offer services to war veterans I’m convinced someone at the assembly would write a letter.  Over half of Welsh trusts are ignoring Welsh Government guidelines and NICE guidelines for people diagnosed with personality disorder and the government doesn’t even see it as within its remit to ask why.

We can have lots of ideas about why this might be.  We could say it’s because specialist services cost money, but the evidence is that they save money by reducing the need for expensive Out of Area placements.  We might conclude that personality disorder remains a diagnosis of exclusion in Wales and that for some reason this is acceptable.  Those in mental health tend not to shout very loud for their rights to be upheld.  Those diagnosed with personality disorder are probably the most stigmatised and excluded within mental health.  They are easy to ignore, easy to forget about and potentially paying £200,000 a year for them to be sent out of area is for some reason a better option than having to work with them at home. We can do better than this.

I wasn’t particularly satisfied with the answer I received, so I emailed again.  Part of my letter said:

“I take your point that neither the cabinet secretary nor government officials can intervene in the day to day running of health boards, but I wonder if the Welsh government could avoid being complicit in the exclusion of people diagnosed with personality disorder by strongly encouraging trusts to follow its own guidance.  My understanding is that NICE clinical guidelines continue to apply in Wales so I’m curious why it’s acceptable for less than half of Welsh trusts to follow them.  Given that trusts have been sued for not following NICE guidelines would it be prudent for the Welsh Government to call on trusts to justify why they are not following the guidelines rather than have to pay the legal bills when somebody opts to take matters to court?

I welcome the extra money that the Welsh Government has put into primary care however the clientele I was speaking of tend to manage their distress with potentially lethal self harm.  This is generally not seen as a primary care role and an absence of specialist services means that they get sent to largely unsuccessful out of area placements at a cost of around £200,000 a year.  This is £1,000,000 to treat 5 people where a specialist team at a fraction of the cost could provide better treatment without the necessity to send Welsh people to England”

My response to this one was equally uninspiring.  I was told that despite seeing no role for itself in highlighting that less than half of its trusts follow NICE guidelines for a particularly stigmatised group, the government had signed a pledge to reduce stigma.  I feel like actions might have spoken much louder than words here.

I was also told “The Welsh government’s main role is to set the strategic direction for health services and hold the NHS to account”.  For me ‘Strategic Direction’ might include writing guidance.  ‘Hold the NHS to account’ might include ensuring that guidance is followed.  I’m baffled why this is the case for some areas of health but not the realm of personality disorder.

The reply finished with “Health boards must regularly review their services to ensure they meet the needs of their resident population you may, therefore, wish to consider contacting the individual health boards directly on this matter” – my interpretation of this was “We have produced guidance, NICE has produced guidance, half of our trusts are ignoring it and if you want to know why, you can ask them yourself”.  Again, this seems an incredibly vague interpretation of setting strategic direction and holding the NHS to account.

I did an experiment and opted to contact one of the health boards to find out why they didn’t follow NICE guidelines.  They replied that Dialectical Behaviour Therapy was available in some areas and that intervention was offered through generic services.  “That’s not what I asked” I replied, “Where are the specialist services that NICE recommend?”  They replied something along the lines of “We know we’re not following the NICE guidelines and we’re working on it as a priority”.  Given that it’s 13 years on from the Welsh government guidance and 9 years from the NICE guidance you have to wonder how far down the list of priorities it must have been.  There is also the worrying response that “we need additional funding to create specialist services” when the reality is that a service could be paid for immediately by not sending one or two people out of area.  If the health boards are happy to spend £1,000,000 providing treatment to 5 people for a year, why not provide therapy to hundreds of people in the community for the same money?

Frustrated and wanting to know the extent of the problem the trust was ignoring I tried one more time.  A freedom of information request asked:

  1. How much does the Health Board spend on residential treatment for people diagnosed with a personality disorder?

  2. How many acute beds are utilised by such patients who are often stuck on acute wards?

This resulted in the response:

“Unfortunately, the Health Board is unable to respond to your request for information as we do not record data on personality disorders to this level of detail.”

“This level of detail” is an interesting phase. Another interpretation of this is “People we pay over and above £200,000 per year to receive treatment in private hospitals, we don’t even record what we are paying for”.

No Longer A Diagnosis of Exclusion was a document published 15 years ago highlighting the discrimination people diagnosed with personality disorder experienced within mental health services.  15 years on, despite an early call for better service provision, the Welsh dragon must hang its head at the ongoing systemic discrimination that goes on.  This is a client group of whom 10% will die by suicide.  The National Confidential Inquiry into Suicide and Homicide by people with a Mental Illness found that none of the 10% who died over the period of their study were receiving care that was consistent with NICE guidelines.  Perhaps a high proportion were living in Wales where for some reason the NICE guidelines don’t apply or, for this client group, there is no will for trusts to implement them.

It was about 2 years ago that I asked the Welsh government to encourage trusts to follow the guidance it had written around personality disorder, let alone the NICE guidelines that apply across England and Wales.  That 84% of English trusts have a specialist service compared to our 43% is shameful indeed. It would be less shameful if we saw it as a travesty to be addressed rather than an issue to contact individual trusts about if you are interested.  I’ve asked Mind Cymru, Time to Change Wales, Hafal, Gofal and other groups with an influential voice to try to make some noise about the current exclusion of this client group in Wales.  Perhaps with the British and Irish Group for the Study of Personality Disorder Conference coming to Cardiff in March, the Welsh Government might reassess it’s position on encouraging trusts to follow its own guidance.  Perhaps it might start counting the amount of money spent on sending people to England for treatment they don’t want.  Perhaps 15 years on it might reread No Longer A Diagnosis of Exclusion and consider that the difficulties experienced by those diagnosed with personality disorder have a legitimate place in our health service after all. I hope they do.

For a petition to be considered by the Welsh Assembly it needs to get 50 signatures.  A petition that calls on the Welsh Government to implement the NICE guidelines for borderline personality disorder can be found HERE.  Please sign.

Keir Harding provides Training, Consultancy and Therapy around complex mental health problems via www.beamconsultancy.co.uk

7 thoughts on “The State of ‘Personality Disorder’ Services in Wales

  1. It’s shocking to read the responses you received! I assumed that Wales would be the same as England (excuse my ignorance). In my trust there is a specialist service, the PD hub, but I have never been allowed to be referred into it, as I was not considered unwell enough to qualify for the specialist help. I am a huge burden to my CMHT however, requiring intensive treatment and containment, and wonder why I cannot access the PD part of the service. It seems ludicrous to me…but even worse that so many trusts in Wales have no PD specialists and are not following NICE guidelines. Having a PD and being in services is utterly horrible, and with the exception of the one clinical psychologist I have psychological therapy with, being in NHS services has made me hate myself even more than I spontaneously do. People with PDs often don’t have the energy to campaign or lobby, because the illness itself is exhausting and pervasive. I am grateful that there are people like you that work on our behalf. Thank you.

    Liked by 1 person

    1. Sorry your experience has been so poor. It’s sad but understandable that services tend to get allocated to those that shout loudest. Typically people who have little self worth don’t shout very loud. Hopefully things can change and thank you so much for you kind comments. Keir

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  2. I think that glossing Welsh Health Boards as ‘Trusts’ is a bit unhelpful. They’re generally much smaller than English mental health trusts – that shouldn’t be an excuse for people living in Wales not to have access to the care and help they need, but it might mean that we can’t expect services to be arranged in the same way. I am still glad that we don’t have the ‘internal market’ in Wales, but there is something to be envied in both the mass and focus of English mental health trusts.

    Another way to look at the numbers is to consider the density of services for number of people that they’re serving. Dale et al. (2017) found 71 specialist PD services across 52 English mental health trusts – adjusting crudely for response rate, I make that about one service for every 680,000 people or so.

    Based on that, we’d expect about 4 or 5 services in Wales. (Plunk those in 4 different Health Boards, rather than the current 3, and you’d cover 57% of organisations rather than 43% – not much of an improvement on paper, but you might theoretically enable specialist provision to another 500,000 people and cover 74% of the population.)

    To provide a specialist PD service per Health Board, we’d need 7 services – or one for every 440,000 people or so. If we want services to actually be accessible – consider the travel times from Snowdonia to Wrexham, or Aberystwyth to Carmarthen – I guess we’d need a couple more than that. Say 9 services, and we’d have 1 service for every 340,000 people (or twice the English density of services).

    This is still a fairly bad metric I’m using, of course – what would be really interesting to know is how dedicated PD *staffing* vs. population varies across different regions and countries of the UK.

    I said that we might not expect services to exist in Wales in the same way. If I’m honest, I don’t know what way specialist mental health services are currently supposed to exist. I’ve no idea what the current model is supposed to be, and how it might vary between – for example – the South East (which has a million and a half people in the Valleys and along the coast over 4 health boards) and Powys (which has a population slightly smaller than the Isle of Wight, and relies heavily on the other health boards and other organisations for the provision of secondary healthcare).

    I don’t know how we tackle specialist provision and accessibility together. You want teams to be big enough not to be fragile and cover a sufficiently large population to retain experience, but at the same time they need to be local enough to serve communities. (It’s not just a problem with mental health services, of course – trying to work out where to put specialist emergency physical healthcare services across Wales – like Hyper-Acute Stroke Units or a Major Trauma Centre shows some of the same problems.)

    These challenges should not be excuses. Perhaps there are ways of better humanising telemedicine, for example that would allow us to provide mental health services over much greater areas without compromising the specialist capacity of those services.

    Liked by 1 person

    1. Hi Adam, there’s some really important points in your responses and thanks for giving it that level of thought. My experience is that the same level of thought isn’t given to this issue in Wales and the services provided are the result of not thinking rather than and conscious response to the challenges of population, geography and resources. A further example is that at the time of the survey, there was one trust who couldn’t find anyone to answer it. There was no-one who had this area as part of their job description.

      What is odd, is that there is money for specialist provision in the private sector at 200,000 odd pounds per year but no motivation to think about how that money can be spent better. Many years ago Cumbria had a big online support service for this client group. That might be a solution in rural Wales but, until the cost and ethics of sending people OOA is considered a problem we will keep sending t people to private hospitals for a million pounds a year while stating there’s no money for community services.

      Again, thanks for the time and thought that went into your comments, Keir

      Liked by 1 person

  3. Hi Keir. Another excellent and informative post. I’m lucky as I have been offered DBT, I tried it but it wasn’t for me. I’m unsure of what the NICE guidelines are as I want to see if the services in my little part of Wales meet them. My psychiatrist is excellent and so is the care I receive from the Home Treatment team over the phone, when I go into crisis. However that being said I have met the stigma attached to BPD from one psychiatrist and a couple mental health nurses within the same service. I think we get a bad rap. Especially having read more on the stigma attached to not only BPD but other PDs too. The world isn’t built for us, so it’s great to have someone (you) being our champion.

    Also will you be posting an update when you get a reply from Gofal? They have always been so lovely to me and they helped me so much.

    Why do you think PDs are so stigmatized by other professionals in mental health?

    Best wishes.

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    1. Hi Betty,

      Thanks for the comments. Easy to have a look at the nice guidelines if you Google them. Might also be worth reading the Not So NICE guidelines to BPD by Recovery in the Bin.

      I’m not sure why but this is an issue that doesn’t get a lot of traction with the organisations I’d expect to advocate around it. I’m hoping to get asked to give evidence to the Welsh Assembly once the petition has closed. Perhaps that might inspire people to make more noise.

      Why is it so stigmatised? That is a big question. Ive been thinking a lot about the problems associated with people who gain their self worth from being helpful (staff) and people who have learned others are not to be trusted. The result is that staff go home feeling useless and end up blaming their patients for how they feel. Obviously there’s more to it than that…

      Thanks again for the comments,

      Keir

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