The failure of the local Community Mental Health Service to provide any support for me has impacted hugely on my life.
It all began in January when my CPN and care co-ordinator, Kathy, went off sick. I had a phone call then a letter, then nothing until early April. I felt invisible, lost to the system.
Then I was called to meet a new caseworker, Lesley, to find that she wasn't a new caseworker but rather a temporary interim worker brought in to cover Kathy's absence. Her boss had requested Lesley to find out how my mental health was, what support I needed and also to tell me that Kathy would not be returning to work. I was totally devastated to receive the news about Kathy though not all that surprised, I had a feeling that things were moving towards that conclusion. I was able to express to Lesley how hard it had been to have Kathy go off sick. I was also able to express how devastated I was to hear that Kathy would not return.
More importantly I was able to get across how invisible I had felt all those weeks which turned into months, hearing nothing and having no support offered.
I felt heard, affirmed and encouraged by what took place during that meeting and was hopeful for a sensible and constructive way forward. I was booked to see Lesley two weeks later. I left the meeting unconcerned by it and equally unconcerned about my future support. I felt a corner had been turned.
When I showed up for my next meeting with Lesley I was introduced to another caseworker and asked if I minded if she sat in the appointment which was odd.
Once in the meeting Lesley informed me that her contract had been terminated early and this new person was my new care co-ordinator, Sarah. Sarah informed me that her job was to actively review my case with a view to shutting my case down and getting me off their list.
Lesley coldly stated that she knew nothing about me, my history, diagnosis nor of the fact that I am in therapy and need long term support. She said those things were not important as she is about closing down cases not continuing support. That is her job.
I could not take in what I was hearing. The dynamic was all wrong. The atmosphere was cold. I felt very threatened, intimidated and undermined.
When I said I was devastated by Kathy's departure I was told very coldly “Kathy is now in the past you need to move on.” There was no acknowledgement of the impact of the loss on me nor of the grief I was feeling at Kathy's loss. I was further traumatised when Sarah very coldly stated “you've had a lot of therapy, you are doing so well now, there are many people on our waiting list, a decision needs to be made as to whether you're going to be allowed any more therapy.” It was extremely difficult and traumatising to sit in a meeting which I had been told was about meeting my new caseworker then discovering it was actually something very different. The dynamic of that meeting was a mess. It wasn't about me, what I need or where I'm at therapy wise.
It was a tremendous shock and has been very disruptive to my therapy and to my general mental health. And that puts it mildly!!
It was all wrong. I was appalled as were my psychologist and her colleagues.
Everything about that meeting massively traumatised me. It was so traumatic that I dangerously split. I was ripped apart by it. My support workers had to intervene. They negotiated me off Sarah's list, got me clustered at the right level of care support, and gained reassurances that my therapy and support would continue.
My psychologist kicked up a stink about that meeting. As a result I was called to another meeting to meet a new care co-ordinator early in May.
She introduced herself to me as Debbie. She said she was to be my new care co-ordinator. She informed me that she's been working in mental health for over 30 years. She told me she is on a permanent contract and not planning on going anywhere. She was very anxious to put things right, to get to know me and the kinds of support I need. She apologised for what I've been put through and confirmed that I am longer on “active review” but rather on the longer term care co-ordinator support list. We had a very positive session discussing my history, my therapy and counselling progress and the type of support I was hoping for from her.
After five months of being in the wilderness finally things were looking up, or so I thought!
A couple of days before the next appointment I came home to a message on my answer-phone. It was precisely the same message I had received about Kathy, but now it was about Debbie. I couldn't take it in. Then I received a letter identical to the one I'd about Kathy's absence in January, but this time it named Debbie.
I was immensely shocked and traumatised. I hadn't realised how traumatised I'd been by the events around Kathy's absence and subsequent leaving. Only now was I aware of deep trauma. Now there was an additional layer of trauma.
My child parts said very firmly “we're glad we didn't tell her much about ourselves then!” There was nothing I could say to that,
I tried to keep positive and reassure them that this was different to Kathy and she'd soon be back to work. But two weeks became five weeks and then indefinite. History was literally repeating itself and I, and my child parts were massively re-traumatised.
I could not believe nor take in what was happening. I realised that the trauma triggered old messages that “I was bad and this had happened to me because I was bad and did not deserve anything better and I was being punished for having such a good rapport with Kathy and such a deeply therapeutic and positive relationship with her.”
I reeled from that and tried to navigate a way through it in counselling. I realised I was fire-fighting and in damage-limitation mode.
While in that mode I could not grieve nor move forward. It was really tough.
Then I unexpectedly received a letter from Kathy telling me she'd had to take early-retirement for health reasons, that she was sorry and had felt privileged to work with me.
I appreciated that letter more than she will ever know and more than I can find words for. Now I had something to counter those old messages.
That letter changed things. I was suddenly able to grieve and to speak of my loss. I was able to see that not only was I missing my Kathy and finding it hard to take in that she wasn't going to walk in the door and smile at me. I was also missing all that the relationship had been to me. I realised there were many layers to the grief and sense of loss.
But the difficult issue of non-existent support which her leaving had left in it's wake was still unresolved. That was until last week.
Last Wednesday I had a very important meeting with a person quite high up in psychological therapies. My therapist and counsellor were also present at that meeting.
The first important thing to come out the meeting was a more complete diagnosis. Alongside the psychiatric diagnosis now sits a psychological formulation – “Complex trauma and Dissociation.” - At long last!! That will be sent to my GP as well so it will be on my GP's notes as well as the Community Mental Health Team's notes.
The second thing to come out of it concerned Kathy. I discovered I'm not the only one who has had no care co-ordinator support for seven months. I also discovered I'm not the only one who has been severely impacted by her leaving and how appallingly badly it has been handled. There are other people saying exactly the same things as me. Discovering that changes things for me in that I now have stuff to counter some of the old messages which had been triggered by the trauma.
The third thing to come out of the meeting is a definite concrete commitment to long-term support and therapy. We have another year of therapy confirmed, to be reviewed in 9 months or so with a view to continuing support beyond that, one-to-one and possibly group work.
The fourth thing to come out of it is also a formal commitment to sorting out my mental health support. If Debbie is not back to work in a month's time then my therapist has the authorisation to contact the Community Mental Health Team and force them to provide alternative ongoing support and also provide me with a proper care co-ordinator.
I feel so much better for that meeting.
I came out of it feeling heard, understood, taken seriously and so many other things I cannot find words for.
The dynamic of that meeting was so different from the one with Sarah. It was all about what's going on for me, how everything has affected me and how things can be moved forward on to a better footing.
The meeting changed a lot for me.
It didn't solve all the problems but it removed some of the uncertainties.
I could not continue with things how they were. Seven months with no care co-ordinator has been appalling and it's going to take some time for me to recover and find some belief in the system again. I was very close to cracking. It was only the fact that I had ongoing therapy and counselling which helped keep me going. If my only support had been from the Community Mental Health Team I don't think I would still be here. I can't help but wonder how people with even worse mental health than me have coped.
But at least something is being done about it now! I'm not invisible to the system any more and the system is going to have to account, maybe in a very small way, for it's care or lack of care.
Doing nothing is not going to be an option for them in a few week's time.
Knowing that is an immense relief!