As I sat with my care coordinator this week discussing the likely transfer of my mental health services from one NHS trust to another, we realised this means more changes. I chatted with her about the number of care coordinators I have had since my discharge from hospital five years ago and how that impacts a service user like me.
I know I am not alone, many other service users encounter a constant flux of professionals who seem to come and go, no sooner do they arrive they leave again. Usually it’s been staff turnover or staffing structure changes which have meant job descriptions have changed and they no longer undertake the care coordinator role.
In 2009 I started out with Sam, I had been fortunate she’d worked with me since late 2006, we knew one another and I trusted her. However shortly after I returned to out patient services things changed. We soon had a list of people who came and went, there was Caroline a social worker, who left the department, then Marion a Community Psychiatric Nurse who left for a promotion. She was followed by Richard another social worker, who sadly never did understand us or the diagnosis, Jane came along next she was another social worker. She and I got along quite well until one day she cancelled my Care plan meeting without consulting me or my family, this caused friction and unnecessary distress as we had issues at the time that needed discussing at a meeting urgently.
When she left her post Malcolm took over, he was head of the team and so often difficult to get hold of, but he seemed to understand what it meant to engage with a client and treat them with dignity and respect. They stopped having pre meetings ahead of my care plan meetings which I felt relieved about, I hated the fact the so called professionals would meet to discuss me, decide what was to happen and then claim they’d consulted us. That’s what happened for years, in fact from 2004 to at least 2011. When I was told he was leaving it felt like I wasn’t good enough to keep anyone to work with me, and I remember thinking ‘not again’. I also feared things would return to the old way of working, I’d stop having true engagement and consultation and instead they’d resort to treating us like some third class citizen, who they made decisions about.
After him came Marion who by now had returned to the team on yet another promotion, she and I had departed last time on awkward terms and my level of trust in her was low. Trying to engage with a person who you don’t trust is a bit like walking on egg shells, wondering if you are going to make a mistake and constantly wondering if I could trust anything she said. In truth trusting her well it didn’t happen, I never met her alone always insisting my daughter attended our regular meetings so I would always have a witness to support me if she said anything later that contradicted what she had in fact said.
By the time Colin came along it was only 3 years post my discharge and yet I had already had six different care coordinators and one of them twice. Such changes equate to each care coordinator being with me for an average of just 4.5 months, how is this helpful. Colin was care coordinator number eight and thankfully he stayed for over 18 months, then his role changed and Fiona took over less than six months ago. Now I’m facing another change and this time it’s because of funding changes and me potentially moving from one trust to another.
When I sit and think of all these changes and the staff who undertook the role prior to Sam, I can’t help thinking of how in the last five years staffing within NHS Community Mental Health Teams has constantly shifted. The turnover has been high, as merges, staffing levels, structures, processes and the like are changed by people in suits far removed from the front line and service users.
On top of the care coordinator roles changing, in the 10 years since I first began my life as a patient and service user I have faced changes of psychiatrist so many times. It’s as if you no sooner get to know someone really well, they actually understand you and how to work with you best, then it all changes. I have had 13 different psychiatrists in just over ten years, that equates to one every 9 or 10 months. How does this give continuity or allow a trusting therapeutic relationship to form, how does it allow for the skills or knowledge gained by a doctor about me to be transferred to another. After so many changes how can doctor number 13 understand me as a person, the things I have endured in the psychiatric system. Will he really know more than a brief synopsis of me, my diagnoses or the medications that do or don’t work. Will I even get time to build any kind of trust or understanding of them, or will I waste time trying to explain the complexities of my diagnosis to them only for them to leave as soon as they grasp it.
Many other service users face having their care coordinator removed altogether often despite having a severe and enduring Mental illness. Some people are being discharged back to primary care services and now fear they may never be able to access the secondary services they might need again, be that a care coordinator or Psychiatrist. Why because due to changes in access to secondary services, staffing cuts and funding issues, service user needs don’t seem to figure so highly.
I am sure it can’t help the staff either facing a constant state of flux as their case load or job descriptions change. I’m told the trust I am under currently is having a more stable period but I do find it hard to believe, after all each change previously has always been spoken of in terms of this is the last one. It can’t help when workloads are increasing and you feel stretched to breaking point, it can’t help to know people you’d once have seen now slip through the net. Surely it’s time for serious re investment in Mental Health services not just for the benefit of people with mental illnesses but for the staff too.
Copyright DID Dispatches 2014