I have several times been asked how I got involved in campaigning for the support of mental health sufferers and their carers, I was even once told my efforts were inspirational. No false modesty here, but there are others in a far worse place than me who do far more. I like to think though that I do my bit.
I first got involved in campaigning because my wife, for who I have been a carer since 2003, has spent the last 2-1/2 years in hospital, still without diagnosis except the confirmation that she cannot now recover and will now have to go to residential care.
Throughout her time in the clutches of the Adult Mental Health Service, 30 months, I have met some wonderful professionals, nurses, OT’s, Doctors… but I have met far too many who are simply not good enough.
For the first 18 months the treatment she, and I as a carer, received was little short of disgraceful. I have raised complaints about it, talked to the Trust received nothing but dishonesty and apathy.
I had been a carer for nearly seven years before I realised I was a carer, and as I learned, I came to understand that many of the problems we had faced should not have been. Had I known then what I know now I could have made things better for everyone.
The problem is, the AMHS treats patients and doesn’t support the carers, who are crucial to the recovery process. The carers are not made aware of how the system works, are never told about their rights and are left in ignorance so that the Trust, it seems, do not have to fulfil their obligations as they are not challenged.
During 2010 I was so frustrated by things, so wound up and tense that I thought I would crack up. I did lots of research and finally found myself supported by Rethink (Mental Health). My carer support worker proved to be an genuine angel, and has given me so much in getting my life back into some form of control. She also gave me contact with a legal advocate (LAMP) who supported me with my complaints, and directed me to an open day with the Care Quality Commission who were researching into the experience people were having in the AMHS.
I went along and also met John, who is chair of Carers Action, local carer support group.
I also started to attend meetings with the LAMP to discuss mental health support issues. At one of these I again met John and was invited to join the Carers’ Action Management Committee . Through my connection with the LAMP I also attended some meetings with another local group, Genesis, who were running some education programmes with the Acute Psychiatry wards.
Through these groups I was meeting individuals from various other local support groups, as well as the service providers from the County Council and NHS. It was clear that Mental Health issues were getting scant support from the professionals, and I knew I had to do what I could to improve things.
I simply started to attend meetings with the various groups until I decided which ones were most appropriate for me, and am now an established member of the management committee of Carers Action, and attend Leicestershire LINk mental health group meetings.
Through both of these groups I get invited to consultations and briefings by both the County Council and NHS which serves to increase my knowledge and list of contacts, and I believe, therefore my potential influence.
Whilst getting involved in these various groups and developing my contacts and knowledge I was also pushing ahead with my complaints against the NHS service. This was a very frustrating process as the investigation was poor, was not allowed to investigate staff performance, and abandoned half way through. I had meetings with the Chief Executive, which diverted me to an administrator, who, based on my story, recommended some 14 procedural improvements.
I continued to push for realistic answers to my complaints, and eventually met the Director responsible for Adult Mental Health, he outlined a forthcoming project to be carried out by an external consultancy, April Strategy. I subsequently met with April Strategy who invited me to participate fully in the project.
The project, headed “Improving the Experience” features “In Your Shoes” where mental health service users and carers speak one to one with service providers to outline their experience within the service, whether good or bad.
The professional listener takes notes throughout then everyone joins into work groups to discuss the issues raised. There are some 25 listening events scheduled, and so far they are proving to be very successful. These events also give me an insight into the workings of the Trust as well as other peoples experiences.
I have discovered the merits of twitter and blogging to compliment facebook to spread my message and experience further , and also to hopefully show others that there are people fighting their cause and that there may be some hope at the end of the line.
It is too late now to help me or my wife, the damage is done and you cannot turn the clock back, I can however, do my damnedest to help to influence improvement in every aspect of mental health care. It has become a driving force in my life and I will keep fighting the cause as long as there is need, and I can keep going.
It would be wonderful, to ask every carer and their service user to take up the cause and make their voices heard, but clearly that is not possible, would not be fair to them.
What I propose to do is to continue this fight, to continue to offer support to anyone who needs it, and to help anyone who wants help to get involved.
The inspiration for this has been Rethink Mental Health, and I simply want to put something back to show my undying gratitude for them.
Also I owe it to my wife to continue the fight, to prevent others suffering the abuse and negligence she has suffered at the hands of the trust, and to do all I can to help sort it out
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