Back in April I sent the below complaint regarding the debacle that was the HSE DBT programme to Your Service, Your Say. I got a reply earlier this month (after the deadline had passed and only after I asked for an update). I’m not going to transcribe it in full, but I’ll give you the key points. Considering I would never have accessed treatment were it not for your kindness and generosity, you deserve to know what they had to say.
21st April 2016
To whom it may concern,
My experience with the Adult Mental Health Services in Galway, despite the best efforts of my consultant, XXXXX, and her team, has been deplorable.
I have been a service user since 2012 when I was first diagnosed with depression, and in 2014 I received a further diagnosis of emotionally unstable personality disorder. In May 2015, following an escalation in severity of symptoms I took an overdose, and it was subsequently decided that I needed a more structured form of therapy than my then therapist, XXXXX, could provide. In consultation with (psychiatrist) and XXXXX (who held the position of psychologist on the team at the time), it was agreed that I would be put forward for DBT (dialectical behaviour therapy). As I had been working with (Therapist 1.0) for six years at that point, (team psychologist) recommended a therapy break of at least 6 months, and told me that I would commence DBT in March of this year.
In the months following the decision to end my treatment with (Therapist 1.0), my condition deteriorated rapidly, to the extent that by the end of November 2015 I was no longer able to work, and have been on sick leave ever since. I am yet to be cleared to return to work.
Throughout those months, every time I expressed doubt as to whether or not DBT would actually go ahead, I was assured that it would, that I was top of the list, and that my place was secure. I don’t doubt (psychiatrist)’s intentions, she was going on the information she had to hand at the time. The closer the time came to starting DBT, the more difficult I found the waiting period and uncertainty. This had a significant impact on my wellbeing and ability to function, and as a consequence, on my husband and children.
In December 2015, at my last meeting with (team psychologist), she informed me that she was leaving the team, and that someone would be in contact in early to mid February to confirm the DBT start date.
When I didn’t hear anything during the first week of February, I made contact with the unit, and was informed that not only was I not going to get a place, but that the programme wouldn’t be going ahead at all.
In very simple terms, this is unacceptable. I had tried every other option open to me with regard to therapy and medication and had complied with every direction that was given by (psychiatrist) and (team psychologist). I persisted without any therapeutic support despite the extremely detrimental impact it was having on my mental health. Everything that I was told and subsequently read about DBT had convinced both me and my family that this was the only treatment that would actually work with my diagnosis, so the impact of having that treatment pulled at the 11th hour was absolutely devastating.
I’m fortunate in that I have a strong social network to fall back on, and was able to fundraise to pay for private treatment, but I should never have been put in this position. Were it not for the generosity of complete strangers, I would have been left with no support, no prospect of support, and most dangerously, no hope for my future. It is beyond doubt that without this goodwill and kindness I would have made a more serious, if not successful, attempt on my life. Given my already extremely fragile state of mind at the time, it was the height of irresponsibility on the part of the HSE to allow this situation to develop. What’s worse is that DBT is a group programme, so I know I’m only one of many individuals and families who were affected, and I doubt that many of those people will have had the fallback that I had.
I expect to receive a full and clear explanation as to why this programme was cancelled at such short notice. I will not accept unanticipated budgetary issues as an excuse, as plans for this programme had been place for months, and I have no doubt that any threat to its roll out would have been flagged well in advance. It’s simply not possible that this is something that only came about at the last minute.
I also expect confirmation of the date at which DBT will be reinstated, and assurance that this programme will be a core offering of Adult Mental Health Service at Galway University Hospital into the future.
I look forward to your speedy response etc
8th June 2016
‘At the outset, can I take this opportunity to apologise for my delay in responding to your complaint and for your experience in relation to the DBT programme.’
‘This referral to the DBT team may unfortunately have led to an expectation that there would be an automatic acceptance to the DBT programme that was planned for March 2016. The DBT team had however not met for the formal team consult meeting to assess all the referrals to the programme and had therefore not agreed who would be formally offered a place.’
(Comment: this is in direct reference to the fact that I knew I was top of my psychistrist’s referral list for placement and therefore would have been in a very strong position to get a place).
‘Reluctantly the decision had to be taken to defer the March programme until September 2016. This was solely due to the reduction of therapist numbers for the team from 8 to 4 due to unpredictable circumstances including staff moves within the service.’
(Comment: to have a clinical team halved due to “unpredicatable circumstances” is both surprising and alarming. For any team to be halved ‘unpredictably’ is a sign of a more significant underlying malaise. This is another example of inherent HSE inadequacies torpedoing essential care services for a particularly, no, extremely, vulnerable group of people. It’s a tired cliché, but we’re seeing it time and time again, only this time I was one of those affected, so instead of reading about it I was in the middle of it. It brings to mind again that image of me being stranded in the ocean, seeing a lifeboat and swimming for it only for the lifeboat to turn away)
‘There is significant commitment from management to support the development and training of staff for the DBT programme and with further staff being trained in June of this year, we are confident that the September programme will run as scheduled.’
(Comment: We can but hope, but, recent debate about siphoning and reinstating mental health budgets puts this whole commitment on shaky foundations)
‘There is obviously some learning for the service in terms of communicating with service users
‘I will draw this fact to the DBT teams and referring teams attention suggesting that the manner of communication with service users in respect of DBT referrals be reviewed, and that some literature is made available for potential service users to highlight and explain this process thus hopefully stopping the issue reoccurring.’
(Comment: Really?? I had a right to know where I stood at every stage in the process. Rights aside, it is impossible to describe how much I was clinging on by my fingernails at this point, and the offer of a place for dbt treatment was literally like a tiny flickering candle at the end of a tunnel.
That aside, the key point here is that this statement implies the HSE needs to sort out how it communicates developments on programmes being implemented. The real problem was that the programme got pulled abruptly, with no notice to either frontline staff or again the vulnerable service users.
I want to point out again that it was through the grace and generosity of so many of you that I was able to access appropriate treatment. If it weren’t for this, my future would have been extremely bleak. What about the other people who had been promised places?
Somehow, ‘unpredictable staff rotations’ doesn’t seem acceptable when weighed against the very real human cost)
‘I would also like to advise that the replacement psychologist for XXXXX will be taking up the post through June, so the psychological supports for the GR1 team will be restored.’
‘Thank you for taking the time to write to us etc’