My name is Anne Pridmore and I have a self-organised 24-hour support package. My journey to get this far has been, and still is, very stressful.
I first found myself in need of support (care) in 1984 when my partner of 20 years left me. The local authority, despite being informed of my needs, rang two days before he left to tell me they had no idea how to support me. Initially, I received two 20-minute visits from a home help and in the evening a friend help me into bed. After about six months my friend’s support ended, so a home carer came in the morning to get me up and a district nurse in the evening. I remember on the first day I asked the morning carer to get bread out of the cupboard so I could make toast. She told me that she could not do that, as it was not on my care plan.
Anne's blog is part of a series of blogs reflecting on the 75th anniversary of the National Assistance Act. To read more of these, please visit our project page.
'I decided to teach myself to get in and out of bed from my wheelchair, which was better than being dictated to.'
The district nurse came at eight o’clock in the evening, and I went to bed, but I could not stay in bed from eight o’clock until nine o’clock the next day (when the home help came) without needing the toilet. I decided to teach myself to get in and out of bed from my wheelchair, which was better than being dictated to, so I could go to bed when I wanted to, and use the bathroom at night. During this time, I had a bath nurse on a Monday, but in 1984, no one worked on a bank holiday, and this meant that I sometimes went three weeks between showers.
In the late 1980s I join the local authorities’ joint strategy group and, through that work, met Jane Campbell who had a big influence on my life. Around this time I was introduced to the Independent Living Movement and, as the Chair of British Council of Organisations of Disabled People (BCODP,) was involved in getting a grant to fund the National Centre for Independent Living. BCODP started a movement that led to many centres for independent living.
'Finding others in the same boat helped me to challenge the system.'
Working on this introduced me to lots of disabled people who were also challenging their local authorities to get better care packages. Finding others in the same boat helped me to challenge the system. In 1986 I wrote to my local director of social services telling him local authorities’ services were rubbish and I wanted to exchange these for cash. After two years of fighting, Leicestershire County Council introduced the Independent Living Project. In 1991, the birth of the Independent Living Fund saw my escape to freedom. No more bath nurses, district nurses, etc I could organise my own care and support.
In the early 1990s I obtained a grant from Comic Relief and set up Being the Boss, a support organisation to help other disabled people who had suddenly become employers. We met once a month and shared a meal together – we were able to share our successes and, also, when things went wrong. I employed a personal assistant to facilitate the group. This enabled people to talk freely without their own personal assistant hearing what was said. I ran this group for two years and out of it developed my charity also called Being the Boss, which drew on knowledge I had gained through employing five PAs myself.
'However, now many disabled people feel lost in a system with very little help.'
Now, direct payments pay two-thirds of my support package and Continuing Healthcare pays one-third. Do direct payments work? In the 1990s when disabled people had lots of support from Centres of Independent Living, yes, I think they did. However, now many disabled people feel lost in a system with very little help. Being an employer doesn’t come without its problems – and where do we go for support I operate a help line through Being the Boss and it never fails to surprise me the number of enquiries I get, not just from disabled people but from social workers as well. It is important to understand that disabled people are mainly left on their own to work it out. My strength has always come from other disabled people, not from statutory services. Many are also struggling to pay care charges which, since the demise of the Independent Living Fund, have gone through the roof resulting in some people having to go without support.
What is the future of the independent living movement? If local authorities continue to waste money continually reassessing people I am not sure it has a future. The things that would make a difference to me is if government would properly fund social care, while at the same time funding disabled people’s organisations to bring back centres for independent living. This would go some way towards re-establishing the movement while at the same time giving support to individual employers.