The epidemic of psychiatric drug prescribing and mental illness diagnoses makes it particularly difficult for those of us who have the misfortune to experience mental distress and require hospitalisation. It's nigh impossible to escape a label or being forcibly treated. There is no time or effort taken to implement a person centred approach. The psychiatric fraternity would say it's about minimising risk and keeping the patient safe. In reality it's very risky and unsafe. A Russian roulette of what is euphemistically called care.
My son and I know all about this for he was recently detained in a psychiatric hospital, a stone’s throw from our house. Now home he is trying to recover from the mental distress which caused his hospitalisation. But the bigger challenge for us both is getting over the trauma of his treatment. The dehumanising experience of being locked in, restrained, secluded and forcibly jagged. Resulting in injury, lack of confidence and flashbacks. Added to this he is coping with side effects, tapering the drugs, experiencing withdrawal effects and low mood. Although we are focused on recovery it often seems like we are on our own, battling against the system. Fighting to be heard and to be helped. Dogged by the mantra of severe and enduring mental illness. Psychiatric drugs as ever the main tool in the toolbox.
As my son’s carer I provide advocacy and peer support, standing with him as a witness and bulwark (defense or safeguard). My lived experience, of surviving mental ill health and the psychiatric system, is very useful in the caring role. I like the term survivor, it suits me well. And think we need more of the survivor focus in Scotland. I’ve heard of others, I’m not the only one. People like me who have fought to get out of the system by taking charge of our own mental health. We have stories to tell and deserve to be heard, and I recommend the book 'This is Survivor Research' edited by Angela Sweeney, Peter Beresford, Alison Faulkner, Mary Nettle and Diana Rose.
"Survivor research is developing a new foundation ... such as mental health policy, practice, education and anti-discrimination ... cracking the bedrock of the most fundamental beliefs traditional mental health systems rest upon", from the foreword by Mary O'Hagan. From Chapter 3, So What is Survivor Research?, Angela Sweeney writes about the "strong relationship" between user research and the user movement. With five underpinning values and principles (Turner & Beresford, 2005):
Being a carer in the mental health world feels like being at the bottom of the pile. Disempowered and isolated it requires all our inner resources to retain hope. In the UK we receive £58/week for providing over 35 hours of care. In reality this can amount to a 24/7 responsibility. Being discharged from psychiatric inpatient care there is little ongoing support available in my area for a person returning to the family home to be cared for. For example I completed a Carer Assessment Form and nothing has come of it. I think that statutory agencies are like watchdogs with no teeth. Guarding when they should be enabling. More about enforcing than encouraging.
Scottish Recovery Network writes about a Scotland where mental health recovery is a reality for all. The reality in my neck of the woods is that we are on our own in terms of recovery. Our experience is of maintenance and a continuation of the severe and enduring label. A dead end road for those of us with more than one episode of mental distress requiring hospitalisation. We have to fight against discrimination, resist the negative prognosis and somehow recover despite the odds being against us.
The book 'Recovery: An Alien Concept?' is an exploration of the concept of recovery by Ron Coleman, including how he gave up being a “chronic schizophrenic” and went back to being Ron. With his wife Karen Taylor they run Working to Recovery Ltd, including Respite and Recovery in Habost, the Port of Ness on the Isle of Lewis, Western Isles, Scotland. Breaks for individuals wishing to engage with their emotional, spiritual and mental health issues in a positive way
Is recovery only for people in the community where most of the resources are? Yet even in the community accessing psychological therapies requires patience and persistence. Pills often being the first port of call. 'More than one in 10 Scots on anti-depressants' was the headline to a BBC news article in September 2011, estimating that 11.3% of Scots over 15yrs old took the drugs on a daily basis.
In psychiatric wards it is more like 10 out of 10 patients who are on psychiatric drugs, many on cocktails of neuroleptics. Anti-psychotics, anti-depressants, mood stabilisers and benzodiazepines. The mentally distressed in acute psychiatric wards with only nurses to hand. Armed with drugs and notes they strive to keep order and chaos at bay. Theoretically. In reality it’s like a free for all where dominant patients rule and those with addictions are in clover, drugs on demand. Some get special treatment, the returners or revolving door patients, whose ways are well known to the nurses. These fortunates know the system and can work it to their advantage. Although they are caught up in the system just like everyone else. And there is no advantage to anyone.
NHS Education for Scotland has developed the Matrix- A Guide to Delivering Evidence-based Psychological Therapies in Scotland. Produced to help NHS Boards reduce waiting times for psychological therapies and to provide a greater range and quality. It should improve the situation and reduce the psychiatric drug prescribing. The ideal would be the availability of talking therapies for people in crisis and in acute psychiatric wards, rather than drugs or nothing. As mentioned in my last blog post the Tidal Model in nursing practice, helping people at their most distressed, offers ways to build relationships and of listening to their stories.