Who we are and what we do: Chris's role as Chair of Advocare

When my father had a severe stroke in 1994 he was left almost completely paralysed. We were told he would only live for six months, and would probably never be able to leave hospital. After six months, however, he had recovered sufficiently to return home and I took time off work to help my mother care for my father. At that time 'Care in the Community' was the government's health catchphrase: I hadn't realised that 'in the community' meant 'by the family'. My father lived for another four years. I gave up my middle-management job altogether because he needed twenty-four hour care.

In 1997 I came into contact with Advocare. At the time I was fighting to retain the night sitting service that allowed my mother and I to get some sleep. Financed by Social Services, this service was about to be much reduced as a result of 'cut backs'. In my experience 'cutting back' is something full-time carers cannot do; 'cut backs' merely add to their care burden.

As an alternative to the night sitting service, my father's care manager offered him a permanent bed in a local hospital. I learned later that the hospital staff had no knowledge of this and that a bed was not in fact available for him. I also discovered that the night sitting service had been cancelled by his care manager prior to a 'review'!

My mother and I were determined to keep my father at home because of the problems he had experienced during regular respite breaks in hospital. He was clearly better cared for by us. I finally succeeded in retaining an acceptable night sitting service by going to the media. I feel strongly about the rights of carers to keep their loved-ones out of institutionalised care for as long as possible.

Speaking for those unable to speak for themselves

I believe a sea-change is needed to improve the carer's 'lot' and as Advocare's Chair I am leading on our strategy for formulating Advocare's Charter for Carers. Underpinned by a legal framework, this Charter will enhance the status of carers, especially those who are sole advocates for vulnerable people. It will provide carers with a unifying 'rapid response' strategy that will enable them to deal more effectively with problems such as unsatisfactory care standards. This Charter will also help to increase general understanding of carers' concerns and raise awareness of the impact some bureaucratic decisions can have on those too afraid or unable to speak up for themselves or their loved one.

If you are experiencing difficulty with the demands of caring for your loved one at home or you would like to help us formulate Advocare's Charter for Carers, please contact our confidential Caring for Carers line (01202) 737592.