In a recent survey, members of the public were asked about the kind of help they would expect to receive if they developed a long-term condition, or if they needed help with daily living in old age. Most people, it seems, are expecting to be helped more than those receiving care now experience.
One of the things that I expected, which wasn’t always offered, and which had to be – painstakingly – mined from various sources,
was information about my condition, other means of help and possible alternatives to what I was getting at the time. Even though I’d been through this experience myself, I still found it difficult to believe that other parts of the health and social care system were failing their clients at such a basic level.
I often ask other service users what’s the most difficult thing they have to cope with. When my colleagues with mental health problems kept telling me that they felt they were being kept in the dark, that they weren’t being informed, I took this with a pinch of salt. I even wondered whether their conditions sometimes prevented them taking in useful advice and information.
So I read last week’s Society Guardian, edited by people with mental health problems, with a great deal of humility. Alongside complaints of brutality, suspicion and lack of respect, one of the major complaints was – you guessed it – lack of basic information.
In the same week, the health minister, Rosie Winterton, announced that the government would sponsor a programme of “information prescriptions”, initially for people with mental health problems and cancers, to help them stay independent. These will be individual information guides to direct people towards sources of information and support for their conditions. It seems a shame that health and social care professionals need to be prompted to do this. Surely if people are expected to take some responsibility for their health and well-being, rather than being passive recipients of care, one of the first steps in the process is to ensure that they are well informed.