Last month I received an out-of-court settlement of £9,500 from Norfolk County Council, as a result of legal action that I took. In June 2011 I made an application to take Norfolk County Council to Judicial Review for failure to provide me with a reasonable care package. The care that I was receiving from Social Services in 2010 was utterly degrading and dehumanising. It left me trapped in my bed and wanting to die. Taking legal action seemed to be the only way that I could preserve my life.
Taking Social Services to court has been the most stressful thing I have ever done. The impact that it has had on my physical and mental health is immeasurable, but I felt that I had to do it. I believe that I am a person of as much value as every other member of society with a right to the same level of autonomy. I needed to discover, by taking legal action, whether the legal system, whether society, would agree with me. I am hoping that blogging about my experience will help both to highlight the situation that many people like me are experiencing and to encourage other service users to take legal action to raise the quality of their life to a standard that those who do not receive ‘care’ would regard as normal.Finally, after months of wrangling and waiting, and waiting and more wrangling, I have received an out-of-court settlement from Norfolk County Council compensating me for the money I had spent topping up the care package that they provided (which left me £15,000 in debt). Sadly, I'm aware that my case is not at all unique. 'Care by the minute' is provided by Social Services departments across the country. In providing care in this way those of us receiving that level of support have our human rights, and indeed our humanity, disregarded.
I am severely disabled and very ill as a result of multiple sclerosis. I have no movement in my legs, very reduced movements in my arms and I am incredibly weak. Because of my illness I spend most of my time in bed. Any activity is exhausting for me, including sitting upright, talking, listening, washing, dressing, eating, going to the toilet or writing (with voice recognition software). If I am out of bed, I need support with every task. The result being that if I do not have support I have to be in bed.The care package I was receiving at the start of 2010 was 6 ¾ hours of care per day; 8am – 12pm, 12.30pm -2pm, 5pm -5.45pm, 9pm-9.30pm. This means in practice that I was 'put to bed' at 2 PM and was only able to get up at 5 PM, when a carer came purely to take me to the toilet, and assist me to do 15 minutes of physiotherapy, after which I had to go back to bed because then I had no care for four hours. A carer came at 9 PM to help me to go to the toilet and to put on bed clothes. This was rushed because the carer had little time and was tired. It also meant that I had to be in bed at 9.30 PM regardless of my needs or lifestyle. Even if I was ill there was no flexibility about the time I went to bed. This means, in effect, that I was forced to remain in bed between 2pm and 5pm and between 5.30 PM and 9PM. I was not tied to my bed but I may as well have been. And yes, on occasion, this did result in me sitting in my own faeces.
In February 2010 the agency providing 30 min calls gave me 24 hours notice that they would no longer give me support to access my bathroom. At that time there were no other agencies in Norwich that could provide calls as short as 30 mins. The only way to meet my needs in the short-term was to engage an agency for 4 ½ hours in the evening (5pm-9.30pm). As a result, I paid for 3¼ hours daily myself, assuming that this was necessary whilst funding was secured. Because of the increase in care, I realised how awful my life had been previously and how inhumane the previous care arrangement had been. Only when I increased my care did I realise what it felt like to be a human being again. It was shocking to realise the level of degradation that I had become accustomed to and regarded as normal. With that realisation I swore that I would never go back to the previous level of care. Living with such little support was not a life and I would rather die than return to that situation.The thought of going back to that level of care and that feeling of not being human was so awful that I realised that I would be at risk of suicide if I went back to that level of care. I asked my social worker to reassess my needs and my GP wrote to social services to confirm the risk of suicide if I returned to having only 1 ¼ hours of care in evening. Social services refused to increase my care package and ignored the warning that I was at risk of suicide (until they heard from the courts). I realised that it would be unsafe to reduce my care package to the level that social services were paying for so I continued topping up the care package provided by Social Services. As I live on benefits, this meant going into debt. I am very lucky that my family and friends were financially able, and generous and caring enough, to lend me the money to pay for this.
I spent months trying to find a solicitor that would take on my case. In June 2011 I made an application to the High Court for Judicial Review. I argued that the 50 hours of ‘calculated hours’ per week provided by Social Services could not be demonstrated to meet my assessed need and that it was so insubstantial as to put me at risk of suicide. In my witness statement I said:
Social Services provide me with 50 hours a week, but I have to have it topped up to 70 hours per week to even have a semblance of a normal life and retain my dignity.
To have a decent life, however, I believe that I need 98 hours per week (14 hours a day). This will allow me to carry out tasks additional to the basics of washing, dressing, toileting and eating, and have what I consider to be a “normal” life. It is something so basic to even have the opportunity of going to the toilet when I need to rather than to wait until the next carer arrives, sometimes having to wait overnight. Any activity is exhausting for me, including sitting upright, talking, listening, washing, dressing, eating, going to the toilet or writing (with voice recognition software). The best way for me to manage this level of fatigue is to carry out activities for short periods of time and to rest frequently. With care in the afternoon, I would have more time to carry out activities other than washing and dressing which takes most of the morning. I would be able to pace activities much more successfully which would have a positive effect on my health. This is particularly so when I am ill because then essential daily activities such as showering and dressing take even more time. I am alone at night which means that I cannot even get out of bed to open a window or get another blanket if I am hot or cold.
If I received care in the afternoons this would specifically enable me to attend Quaker Meetings at the University of East Anglia, close to my home. I would also be able to have friends round for lunch. At present, if a friend arrives for lunch at 1pm the mealtime has to be split up to enable me to be taken to the toilet and then taken to bed, with my friend coming to my bedside for dessert. I feel that this is an unjustified interference with my dignity.
Going to the toilet is an incredibly tiring activity for me. It involves transferring using a standing hoist, which is exhausting. Because my carer currently leaves at 2 pm and does not return until 5 pm, I have to go to the toilet at 1:30pm. In practice, this means going to the toilet immediately after carrying out an activity which is poor fatigue management. It would be much better for me to rest immediately after carrying out an activity and then to go to the toilet when rested. Furthermore, on the (rare) occasions when I experience bowel incontinence in the afternoons, there is at present no-one to clean up until 5pm. On one occasion when this happened I called Social Services to ask them to send somebody from their 'Rapid Response' service to assist. This team was not available to assist me.
I consider that I need support until 11.00pm. Currently I have care until 9.30pm. This means that I have to prepare for bed at 8.45pm and the carer leaves as soon as I am in bed at 9.30pm. If the carer stayed until 11pm I would have time to ensure that I was comfortable and warm enough to sleep before they left. At present I just don’t sleep if I haven’t been able to settle immediately at 9.30pm, which has a very negative impact on my health. Also it would feel much more appropriate for my dignity if I have some flexibility about when I go to bed.As a result of this action, Social Services agreed to increase the funding that I received from 50 hours per week to 70 hours per week. They also made a referral to NHS Norfolk asking them to carry out an assessment for Continuing Healthcare Funding. NHS Norfolk deemed me eligible for funding of 101.50 hours per week. They have provided me with a high quality and professional service. As a result of the increase in both hours of care and quality of care, my life has improved immeasurably.
In July 2011 the Judge gave me permission to take Norfolk County Council to a Judicial Review for refusing to reimburse me for the amount I had spent on care. In December 2011 Norfolk County Council offered me an out-of-court settlement of £9,500. I did not want to settle out of court as I wanted a legal judgement, and to have Norfolk County Council’s actions addressed in court. However, because a financial settlement was offered I would not have received funding to go to court. Despite spending £15,000 on care I had to accept a payment that was markedly less than what I was owed. The cheque arrived last month.
Is that the end of the story? I think not. I have been warned that I am regarded as ‘borderline’ regarding Continuing Health Care Funding and that any improvement in my health may result in a cessation of funding. Currently I’m reassessed by NHS Norfolk every 6 months. Every time I’m reassessed I worry that the funding will be cut. It’s a stressful way to live.