Mental Health Awareness · Mental Health Services · NHS

A year on a waiting list-getting treatment for the most stigmatised illnesses

The other day, I met with one of the psychologists from the Personality Disorders Service. When I first met with the PDS in October 2014, they had been waiting for funding to start a DBT programme. It had been due to start in September 2015, but, due to funding, I was told it would more likely be January 2016. It was April 2016 before I received a letter about attending a ‘pre DBT’ information session. When I saw the psychologist the other day, she didn’t mention when it was the DBT course was due to start, but judging by the fact I’m not actually going to be taking up my place because I’m moving to uni in September, I’m guessing it’s still not likely to start for another few months.

The psychologist said that it was so nice to hear that I was doing so well, and that I’ve ‘turned things around’ while on the waiting list, because most of her other patients, quite obviously, haven’t done so well without the specialist support. Realistically, the reason I have ‘done so well’ is probably because I don’t actually have a personality disorder, and in the year since I was last in touch with the PDS, I’ve received an appropriate diagnosis and have stabilised on medication. And for a lot of the people on the DBT waiting list, that probably isn’t the case. Most of people under the PDS team are probably struggling with a personality disorder diagnosis (the service does assess/offer support to people will other illnesses too), and probably in dire need of specialist care, and have been waiting well over two years for this specialist care.

The psychologist told me that there are two of them on the team, the other, I’d met for my assessment last year. Two members on a personality disorders team that covers an entire health trust (apparently, there are only 4 DBT trained therapist in the whole of Nothern Ireland). On the trust website, the section for the PDS team says that they aim to ‘highlight gaps in resources and expertise’ among commissioners and healthcare professionals within the trust. It also says that the PDS will not offer one to one or specialist long term therapy for its service users, but instead will direct them to and support them in accessing services elsewhere. DBT ‘may be offered in the future’. DBT being the gold standard treatment approach for EUPD/BPD.

As I got up to leave, I said that I wanted to say that I’d found the psychologist who had assessed me to be really good. She asked me how exactly I’d found her helpful, that as a team of two, they were keen to know what it was that they did or said that was helpful or unhelpful. I thought for a moment, then said that despite never being formally diagnosed with EUPD, I’d still felt stigma from psychiatrists and a few nurses because it was something that was being considered. I felt that what I said was never taken seriously, and I was made to feel attention seeking. And I stand by that- the same consultant treated me completely differently when he determined I had bipolar disorder and witnessed me manic, and the same nurse that once snapped at me disgustedly to ‘get off the floor and stop crying’ when I had a panic attack after an incident, wiped the tears from my face and asked me gently what it was about the bipolar diagnosis I was struggling with. Another psychiatrist told me when the consultant suggested a PD that there were people who felt ‘far worse’ than I did, and ‘they just get on with it’; fast forward two years and she is nice as pie and nothing but validating now that it is decided it is my mood that is my biggest issue. The psychologist that assessed me was reassuring, non judgemental, disinterested in the outcome of the assessment, stressing she was more interested in what we could learn about ME than a diagnosis, and her overall manner made me feel that if it did turn out I fit the criteria for EUPD/BPD, it wouldn’t be all that bad.

When I explained this, the psychologist said that discrimmination was something they were constantly having to address in terms of both funding and meetings with other healthcare professionals, that often they had to advocate and say, ‘actually, that’s not right’. She summed it up well- when she was talking about the DBT programme, she said ‘hopefully now that we have funding secured it won’t be taken away from us’. Which says a lot.

Really and truly, it’s a fucking disgrace. The stigma that surrounds PDs, the attitude of doctors and nurses towards those who suffer from them, and the disparity in funding for appropriate services. It’s a fucking disgrace that in a health trust of 300,000 people, there are two people on the Personality Disorders team. And it’s a fucking disgrace that the DBT programme that was due to be piloted two years ago (April 2014 according to the website), still hasn’t begun.

I think the fact that the psychologist was so pleased to hear I’ve been doing well in the time it’s taken for funding to come through says a lot. When I was assessed last summer, the psychologist mentioned potential hospital admissions I would have, told me that I would need DBT to maintain my recovery from self harm, that things were likely to become unstable once I began talking therapy. Probably, she said those things because that’s what was typical of the people under her service. And I am thinking about all the people that have been hanging on for this therapy for two years, that might have sunk further into harmful cycles of self harm and despair and chaos, that might have spent those two years in and out of hospital, that might have spent those two years under the care of nurses and doctors who didn’t understand and wrote them off as attention seekers or waved them away dismissively, that might have struggled with relationships and anger and been unable to live a ‘normal’, happy life. And I wonder if any of them have ended up taking their life, or tried to, because they didn’t get the help that they needed.

It is not difficult to discover that EUPD, and personality disorders in general, are highly stigmatised. A quick google on these illnesses brings up endless articles that cite sufferers as being dramatic, attention seeking, manipulative, treatment resistant, chronic cases. Talk to anyone with a personality disorder and they can proabably tell you about times they were judged by paramedics, met in A&E with rolled eyes and ridicule, discharged with nothing more than a phone number, or, if they get the length of a hospital admission, they  might be sent home packing after a day or two on the ward, or spend years travelling from home to hospital, with no one taking the time to offer them any meaningful therapeutic input. Those with personality disorders are frequently passed from service to service, person to person, or might be denied treatment altogether, discharged for being ‘difficult’, ‘non-compliant’ or ‘too complex’. When writing this blog post I read an article about stigma amongst healthcare professionals that had two pages of comments from people sharing their stories- the discrimination they experienced as patients, and the discrimination they witnessed as mental health professionals.

I found very little- if anything- in terms of statistics or funding breakdowns or ‘formal’ articles on disparity in funding for PDs compared to other illnesses, or on the stigmatic attitudes held by healthcare professionals towards those with EUPD/BPD or personality disorders. Most of the stuff I did find were personal blogs, or things shared by mental health charities. Which again, says a lot.

And I think if the case of my healthcare trust is typical of trusts across the UK, then something desperately needs to change- no one should be made to wait over two years for treatment, particularly when that treatment is recognised as being the most effective for the illness . 70% of EUPD/BPD sufferers attempt suicide; 1 in 10 will complete suicide. So for an illness that has such a high mortality rate, for an illness that is actually quite common (one consultant told me 1 in 50 women will have EUPD, but I’m not sure if I buy that), it is frustratingly unjust that there is so little support and treatment out there for sufferers.

While the PDS in my trust is (ridiculously) small, I think they are pretty damn good. They didn’t make me feel small or stigmatised or judged, or like my struggles weren’t valid- like so many other healthcare professionals, and they continue day in, day out, to challenge healthcare professionals within the trust and change how they view and treat personality disorders. Both things I think are hugely important- they provide the kind of service PD sufferers need, and the support and understanding they don’t get elsewhere, and they fight to change attitudes to secure the funding to provide that service. And I think that’s where it starts- the greater the understanding, the less stigmatised the attitudes of healthcare professionals towards PDs in general and EUPD/BPD in particular, the greater the potential for proper investment into appropriate services.

 

 

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