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Why people living with bipolar deserve better

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19 November, 2012

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!

Readers' comments (13)

  • tinkerbell

    Eileen of course your mum deserved better. It is sad that we appear to be going backwards with further cutbacks on services when things should have improved by now.

    A cinderella service.

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  • michael stone

    'We found GPs, hospital consultants and general nurses had very little understanding of the complex relationship between her mental and physical health problems.'

    That I can believe - almost everyone tends to be quite good at their main job, and not very good outside of it

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  • My mum also suffered 35 years on. Her physical needs were never met. It is no better now accessing the service trying to get cbt or other help. Speaking from recent experience.

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  • what a refreshing change to discuss mental health care, something that others don't think is important, it's rarely discussed and never makes the media headlines.

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  • I totally agree! I was 'diagnosed' with bipolar at the beginning of the year. I had interactions with various organisations growing up e.g social workers and psychologists etc. Since my diagnosis I was prescribed medication and left 2 find everything out on my own. I have had my meds increased a number of times and was promised specialist therapy asap. I have since seen my consultant 3 times with still no mention of any help or advice. I even went through a period of vivid nightmares and night time hallucinations, to which my meds were just increased again without seeing anyone!
    Help should be there more readily for those who need it. I have already nlost confidence in the system.

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  • tinkerbell

    unfortunately psychiatry still mostly seems to consist of a reductionist medical model. Accessing services for other interventions is often a long and drawn out process that most people with a mental illness aren't able to access without advocate assistance to get them into the 'matrix' technology of IT.

    Once you are in the IT referral process then it still grinds slowly on after completion of numerous assessments that have to be completed first before you can actually 'see' anyone and get some practical help.

    The first rule of psychiatry is 'to eliminate a physical cause' but not a lot of people seem to know that. I am thankful that i learned it early as a newly qualified psyche nurse by a wonderfully, conscientious psychiatrist.

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  • Well i have had a number of assessments a number of years and still have had no proper help. My friend also has bipolar and has been prescribed meds without any help. it seems u get lost in the system and have to fend for yourselves. We both have shown symptoms for years and have not had the help needed. It is fortunate that we both have people who are there for us and understand us that we get through it!!!

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  • I dont have bi poler, but doe have sever depression,the only realy help when you are at the bottom is through crisis intervention, but when you find it hard to talk they put it down to non complience then take you off the list, so you are on your own again. When will some one learn that you still need help even if it is just a presence, or that life line of knowing you can phone, not just being discharged and left alone

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  • 'unfortunately psychiatry still mostly seems to consist of a reductionist medical model.'

    Good point tinkerbell. I would still claim that hard as it is for people labelled bipolar it's still better than getting 'personality disorder'.

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  • There was an interesting article on Stress/Well-being & Mental Silence in the Sydney Morning Herald - makes interesting reading - the links are on the bottom of this web page: Search: sahajayogalondon - also there is a interview from Sunrise TV -in Australia again the link is at the bottom of that page. It's FREE - Quite interesting

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  • tinkerbell

    i also worked with another psychiatrist. He wasn't really a people person but more into the research side of psychiatry. When asked what antipsychotic he was going to prescribe a particular patient on our ward he went through the list of them and then laughed and said it doesn't really matter they're all the same. He also said that your diagnosis was pretty much dependent on your social class and skin colour.

    Hopefully things have changed since then.

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  • With the new way of working it will only get worse! My team would once work with people through their crisis and then help them maintain their recovery. Now we are paid on `episodes of care` it is much more profitable to discharge someone if they recover (for a short period of time) or not turn up for appointments (without asking why) and bill the system later when they relapse. More episodes = more profit!

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  • tinkerbell

    A GP practice run by a doctor who has been of one of the most prominent supporters of Andrew Lansley's health reforms de-registered elderly and disabled care home patients to save money, an NHS investigation has found - Guardian.

    Just had a read up on it. Rogues and Scoundrels!

    This is what we are to become. Scary stuff.

    What if one patients needs are greater than mine, will they be able to spend my allocated budget, so that when i go to my GP for e.g., some antibiotics for whatever they say 'sorry, we've had to spend your budget on some more unwellperson so get stuffed and find another GP who's caseload isn't so financially draining where the majority of well people go'.

    We all end up in a bun fight over someone who's more unfortunate.

    Couldn't make it up could you? Unf******believable.

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