I’m 63 and been differently-abled from birth with Spinal Muscular Atrophy Type 2: a progressive, degenerative muscular condition, causing weakness and wasting of muscles. This means my breathing muscles are also affected. I have never been able to walk so have used a wheelchair all my life. I went to special schools for children with physical disabilities, which I hated. Like most kids, I just wanted to be as normal and independent as I could be, so this in my experience, was not an ideal start for me.
I got the reputation of being an awkward, and rebellious child. I wanted to go on to college. But in those days, expectations and education for disabled kids was very poor. Add to that, mobility and access were virtually non-existent. So I never managed to go on to get further education or paid employment. I met Barry, my husband at an early age, and we’ve been married now for 41 years. He too is differently-abled with a severe physical disablement. He has been my main carer for all this time. We have always lived independently in our flat in London.
In 1997 we decided we needed some support. We wanted to remain as independent as we could, so applied for Direct Payments. Prior to personal health budgets, direct payments, gave me funding to interview and employ people of my own choice. This meant I was able to organise my own care needs as I saw fit. I was the first person in my Borough to try this new and experimental, at the time, way of living. I became an employer, which gave me responsibility and helped me develop many more skills, both practical and emotional. I found very few problems in managing the Direct Payments Scheme. So, I gained pride and confidence and really enjoyed experiencing the complete autonomy and control over my life that this scheme enabled me to have.
All went well until 2002 when I developed a severe infection resulting in chronic type 2 respiratory failure. I had to undergo a tracheostomy to save my life. I lost the use of my hands, which meant I had also lost much of the physical independence I’d previously had. I needed 24 hour ventilation. So I was straight away, reclassified as needing NHS continuing health care. I was told I would have to sack my Direct Payments workers and receive care via specially trained agency nurses. However, despite still being very ill, I fought this decision and found a loophole in the rules as they were at the time to allow me to still get direct payments to organise my own care needs. I found with little disruption in my routine, it was relatively easy to continue with my same team of personal assistants as before the illness.
This continued until February 2007 when I was informed that there was a new framework set up by the Department of Health for people on NHS continuing health care, which meant that local authorities were acting illegally by providing direct payments. I was told I would have no choice but to stop employing my workers and change over to specialist nursing care via agencies.
I once again challenged this and took my case, to the High Court in London. My legal fight lasted nearly three years. Luckily, I was allowed to continue using direct payments during this time with a court injunction in place. My case was, however lost. I was in the process of an appeal, when the Minister for Health at the time announced proposals to introduce a personal health budget pilot scheme for people on continuing care to choose direct payments. I like to think that although my court case was lost, it was not by pure coincidence that this decision came about. My case was spotlighted by the media and got lots of publicity so it was worth it in the end.
Today, I believe I represent not only myself but a large group of people with disabilities who have battled hard to maintain independence in their lives, to avoid institutional care, and have the maximum opportunity and choice to control our lives. I feel it is a human right.
I would like to compare the two options of choice between personal health budgets and care via commercial agencies.
Firstly, I feel that somebody with my degree of physical problems is so often categorised and there are many prejudices. For instance, I do not stay in bed for most of the time as many presume, other than to sleep at night. I have a fully portable ventilator and other pieces of equipment, which my Personal Assistants, trained by myself and respiratory nurses at the Lane-Fox Unit at St Thomas’ hospital are proficient and very competent at handling. There are many foods, I can enjoy and eat out a fair bit. I am fully mobile in our adapted vehicle and I am out and about, more than the average person I am told. I go for walks in the park with our two dogs, go to concerts and football matches and have been abroad several times since my tracheostomy.
I will list a further few examples of the advantages of personal health budgets over agency care.
Firstly, personal health budgets are very much more economical than agency care. Surely, particularly in such critically bad economic times, it makes good sense for the NHS to be encouraging this choice?
I get continuity and consistency. I have had two of my team of five workers for over ten years, the third has been with me five years and the other two say they enjoy their work and want to stay with me; agency workers are notoriously temporary. I also have more trust in my team as I have experienced serious abuse of my trust with agency workers.
I have maximum flexibility as well with my workers as I do not have to go through a third party to arrange or alter my schedules. And
Barry, my husband prefers the direct communication he has with our team, which he would not have with agencies.
It is easier and more straightforward in an emergency situation to arrange cover within our team than it could be with any agency.
Yes, we do lead full lives. We do, in fact lead two lives. As well, as enjoying life to the full in London, we have our own holiday caravan down on the Sussex coast, where we can, thanks to the flexibility and adaptability of our special team, enjoy a lot of the summer months. This is just one clear example of what wouldn’t be possible using agency carers. Also, my workers can drive my car, which raises big complications with agencies.
I appreciate that personal health budgets are not for everyone as everyone is an individual. But for me personally, I really believe that being in control of my life and receiving such quality, tailor-made assistance, has been the key to my remaining energetic and in excellent health with the best possible independence in my situation.