Why people living with bipolar deserve better

19 November, 2012 | By Eileen Shepherd

For 35 years my mother lived with bipolar disorder. It is difficult to imagine what it must have been like for her not to sleep for days on end and at other times just sit and cry and cry and cry. It was hard enough watching it.

Over 35 years my family got used to a pattern of care; crisis, hospital admission, medication, non-adherence, crisis. Mum had numerous hospital admissions, ECT and plenty of medication but very little interaction with health professionals.

Support in the community was hit and miss. CPNs were our lifeline, but as Mum did not always co-operate and on several occasions she was often signed off CPN caseloads because she did not appear to benefit from the visits. This meant that when a crisis happened we had no direct access into mental health services, resulting in delays in treatment and sectioning under the Mental Health Act, which could have been avoided with early intervention.

So why am I telling you this? Well a report published last week by the The Schizophrenia Commission  describes care for people with schizophrenia and psychosis as falling “catastrophically short” . It highlights the value of preventative work in the community, which can do so much to improve patients’ quality of life.

The long-term consequences on Mum’s physical health only became apparent in later life. We found GPs, hospital consultants and general nurses had very little understanding of the complex relationship between her mental and physical health problems. It is easy to overlook physical problems when you are dealing with someone who has an understandably deep-seated suspicion of doctors and is reluctant to communicate with them.

I am not an expert, but it seems to me that the sensible ideas in the report could apply to many other mental health conditions. For 35 years my Mum was cared for in underfunded services, in generally poor conditions, where staff were often forced to ration care to those most in need. What this means is people like my Mum got her anti psychotics and mood stabilisers but very little else. I think she deserved better – as do people in her situation today.

I know there is excellent practice going on and we regularly publish examples of innovations that make a difference in mental health. It is vital that this practice is shared so if you are doing great work please tell me about it!