A crisis averted

Well blinkin' heck, time for another blog post. I don't wish to alarm you, but during the last few weeks, I've been lucky to survive an extreme reaction to some new medication. I spent two weeks being passed between my GP, the crisis team, the community mental health team (CMHT) and 111. Nobody seemed to know what to do with me and I fell through the cracks. I was left completely unsupported by the professionals, despite being a CMHT patient. 

It seems the confusion came about because I no longer have a care coordinator. I was discharged last year because I'd been doing so well. I discovered that there is no quick mechanism for unwell patients to return to CMHT care once they've been discharged. This seems like a dangerous oversight. Surely, people like me with 'severe and enduring' mental health problems need support if they happen to relapse? 

Now that I'm feeling better, I'm going to write to the CMHT and give them some feedback about the lack of care I received. It's been a sorry saga of no call backs, passing the buck, misinformation and general negligence. My GP was equally unhelpful. It would have been so easy for me to have become another statistic, for my name to be added to the list of catastrophic failures by mental health services. Every time someone slips through the net and sadly dies, the NHS trusts involved talk about 'lessons learned' and changes made. I saw no evidence of this. 

In other news, my boys had their regular appointment with their kidney consultant recently. Unfortunately, things are starting to progress with Joe's kidney disease. He's been given more medication to manage this, with the prospect of starting further medication at his next appointment. Evan will also soon be started on an ACE inhibitor to protect his kidneys. I'm happy to report that both the boys are well in themselves. Joe's GCSEs are coming up in a few weeks, so it's good to know that his kidney problems aren't causing him to feel poorly.

I've mentioned previously on Twitter that I've got a meeting with school and the teacher of the deaf to discuss provision for Evan. It's about making sure that the combination of Evan's deafness and autism isn't getting in the way of his learning. Right now he's not doing himself justice at school and his teachers have asked us for advice as to how they can help him. Deaf CAMHS (the people who diagnosed Evan) can hopefully help us give the teachers the support they need. The teacher of the deaf has agreed to make the referral to deaf CAMHS, so hopefully we'll have things in place long before Evan sits his GCSEs. 

That's all my news for now. Thanks for reading and I look forward to catching up with you soon. X 

 

 

Some thoughts on mental health services

As you know, I've begun the data collection phase of my research and I wanted to write a little about a consistent theme that's emerging. It's to do with expectations versus reality when it comes to mental health care. What I'm seeing is a real sense of disillusionment among many people who enter the secondary mental health system (that is, they're referred by their GP to a community mental health team or CMHT). For some people, unless they are hospitalised, it seems that 'care' equals medication and a brief chat once every couple of months with a psychiatrist. Possibly a brief intervention with CBT. If someone is deemed to be in greater need, they might receive some nursing support from a CPN or get to see another mental health professional, such as a psychologist or an occupational therapist. In some cases, a mental health social worker might be involved, often to co-ordinate practical matters (such as to do with caring for children, dealing with housing problems and so on). But for many people, the story seems to be that they are given medication and then feel as though they are 'parked' on drugs, with very little ongoing support, other than being advised to see their GP in between psychiatry appointments. In a sense, this mirrors the experience of physical health problems -  if you're 'well' enough not to be in hospital, then you're sent home to get on with things and advised to see your GP if you have any problems.The difficulty with mental health is that all too often, the problem ('illness' if you prefer to see it as such) tends to have its origins in the complexity and difficulties of life, so in sending people right back into that life, unchanged save for medication, how can they ever hope to get well?

If a person's problems lie in relationship breakdown, difficulties in coping with being a lone parent, anxiety around housing and money worries, or they have a background of abuse and neglect, multiple trauma and losses (some people are managing all these things and more), then how can medication with nothing else help? It's a fundamental problem in mental health and one to which I don't pretend to have easy answers. I realise that the remit of the NHS is not to extend itself into people's private lives but it strikes me that just medicating people and leaving them to it is only storing up problems for later -  whereas some may recover or their circumstances improve, others will become 'revolving door' patients.

What has struck me during the course of my work so far is the disappointment that people feel when they realise that for some, diagnosis and medication is as good as it gets. Perhaps the disappointment lies in the belief that the mental health services can, and sometimes do, offer more. As one person pointed out, in some cases, people simply don't receive any 'care.' Services are patchy and all too often, it depends on where you live, which CMHT you're referred to, which consultant you're under and so on. Only a minority are referred for NHS psychotherapy and speaking from experience as a patient, you have to jump through a lot of hoops to get that, it's not routinely available. But when you're unwell, do you really want to have to jump through hoops? For those who are very unwell, it may be impossible.

I realise that in-depth psychotherapy may not be everyone's taste; it involves a long term time commitment, for a start. But the CBT offering that was promised to transform the lives of many has proved disappointing. Again, some individual therapists are brilliant but others rely too heavily on the manual and ignore the real person sitting across from them. Many people are deemed unsuitable for IAPT on the basis they have more complex needs (I was one of those people). So what do they get? In my case, it'll be psychotherapy but as I've mentioned,for a variety of reasons, that isn't an option for everyone.

Some people say they need help with emotional problems, others need more practical support to help them get on with their lives. If it's not the remit of the NHS to act as a counselling or advisory service, or to do the work of social care,who fulfils those roles in our increasingly atomised society? The voluntary sector is already overstretched, with many services affected by cuts and needing to scale back (that's where they aren't having to close down altogether). NHS mental health services are organised in such a way as to discourage 'dependency, ' but the question is where else can people turn when there is genuine need? 

It seems that there's a gap between expectations and reality when it comes to mental health services and what you get is whatever's available, which is, in some areas, not a lot. A diagnosis, a prescription and told to see your GP in case of any problems, now go away and get better. It's nowhere near enough.