Direct payments success

Some years ago our family, friends and visionary support workers set up a small microboard (person centred planning group) and successfully put in place a scheme to enable David to live independently with his own personal assistants using direct payments and the Independent Living Fund.   The group now manages David's care and plans for the future.  My role within the group had been to work with the local Health Trust to get the services David was entitled to. I became a volunteer independent advocate to help local families obtain similar services.  I was invited by the Trust as an individual carer to sit on a number of Steering Groups including one for Carers and Direct Payments and one for learning disabilities.

Representing Carers

My personal experience on both steering groups over two-three years made me realise some basic truths. Unless service users and carers were provided with all necessary information to enable them to be equal partners in the steering group, were covered for out of pocket expenses for attending meetings, had access to a local group of carers and service users whose issues and concerns could be fairly represented at steering group meetings, we would not be able to have influence on the design of services and the proper allocation of resources in our area.

Setting up a carers forum

This prompted me to get involved in setting up the South West Carers Forum.  The Forum is led by carers and represents all kinds of carers.  It gives us a place where we can talk frankly about our experiences and share our knowledge.  Concerns and issues can now be prioritised and funnelled through to the Trust and we are to give them a firsthand account of how services are affecting the people who use them, backed up by case studies.  For the first time the Trust is really hearing us and the logical solutions we suggest to problems.

The last three months have been spent listening, and I mean really listening, to what our carers have to say.   I can literally see before my eyes their own self confidence growing in the realisation that it is ok to express their feelings and that all those pent up thoughts are valid.   

Our plan is to educate those carers with the time and the desire to become representatives of carers not just with our Health Trust and Educational authority but within the wider community.

Advice to carers thinking of starting a forum

Bringing together carers in a forum is hugely powerful, and increases our impact on services.  We need to recognise that we are the experts. We do an enormous amount, day in, day out for our loved ones and know what needs to be done.  We are competent disciplined people who have the experience to direct what arrangements need to be put in place by society to give the people we care for and ourselves the right to a life. 

First, meet and listen to each other and establish the common areas and the priorities.   Realise that the people you care for are citizens with their own rights to be supported by our society.  Get rid of the ‘guilt trips’ imposed on you by others, family, society, our culture.  You should have the right freely to choose whether you want to be a carer or not. Remember that the best thing you can do for those you care is to ensure that there is a robust care management arrangement in place that can operate independently of you.   

Then inform yourselves on who makes the decisions relating to these matters.  Pick those among you who have the time and the skills to take your point of view  to these decision makers. Then make them explain how they make their decisions in plain language.  Make them listen to your experiences.  Keep doing this over and over and over again. 

To find out more about the Southwest Carers Forum email: swcf@disabilitywest.net