Sunday 16 August 2015

Human Rights Matter

(This post was first posted on 16th May) Because of my experience of having to take legal action against my Local Authority to secure a reasonable quality of life, I am passionate about the importance of the Human Rights Act. Equally Ours filmed me talking about my experience;

To see other people talking about human rights have a look at the Equally Our website. To find out more about human rights have a look at the Rights Info website, or the British Institute of Human Rights.

For more detail about the why the repeal of the Human Rights Act is problematic have a look at;

Liberty's briefing. Amnesty's (slightly shorter) briefing, or the piece by politics UK.

If you'd like to take action, Liberty have more information and campaigning ideas here. Amnesty International UK are also campaigning to keep the Human Rights Act. to support their campaign click here. The British Institute of Human Rights is arranging a Human Rights Tour "We explore how the Human Rights Act is not simply about courts, but relevant and real to us all in everyday life,", to find out more click here.

I am currently recruiting a support worker to assist with daily life and human rights campaigning. Click here for more information.

Sunday 12 July 2015

Life after the ILF: We are all valuable enough to have a reasonable quality of life

The Independent Living Fund (ILF) closed on the 30th June 2015 (the Guardian wrote a useful article about it). Campaigners campaigned at  Downing Street and the House of Commons, but to no avail. In England the money used for ILF will be transferred to local authorities, but only about a third of those authorities have agreed to ring fence the money. Disability Rights UK has produced useful information about what's happening in each local authority.  (In Scotland and Northern Ireland ILF users will continue to receive funding from Independent Living fund Scotland. In Wales a new Grant Scheme replaces the Independent Living Fund in Wales and ILF funding will be protected, at least until the end of March 2016). For many ILF users the independent living fund gave them the chance to have a reasonable quality of life, to be human. The possibility that this may be lost must be petrifying.

I want to tell ILF users, and others without enough support, to have hope. I know what it is like to have enough support to live like a human being and then to be told that this support will be removed. I have experienced the fear. I have lived through having so little support that I was trapped in my bed wanting to die. (I am severely disabled, and ill because of multiple sclerosis. If I don't have support I am, essentially, trapped in bed). “Because of the increase in care, I realised how awful my life had been previously and how inhumane the previous care arrangement had been…..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”. You can read more about my story here.
I don't want anybody else to have to go through that, to have so little support that you want to die. But I know that there are people living with the experience of inadequate support and the appalling experiences of lack of human dignity that this brings (for me, sitting in my own faeces was probably the worst aspect of this). And I know ILF users currently fear having to live with this soul destroying lack of dignity.
I want to tell everyone very clearly that we are  valuable enough to have a reasonable quality of life, just like everybody in society is, whether they are disabled or not. ILF users, you do have the right to a reasonable quality of life, you do have a right to live where you choose. You should not have to fight for this right, but you may have to and there are people, and organisations, out there who will support you. Taking Social Services to court was the most stressful thing I've ever done, but it was worth it.
At the beginning what made a difference was reading the Human Rights Act. I looked at the Equalities and Human Rights Commission website and under the description of Article 8 of the Human Rights Act; the right to a private and family life it says  The concept of private life also covers your right to develop your personality and to develop friendships and other relationships. This includes a right to participate in essential economic, social, cultural and recreational activities of the community.  So the Human Rights Act says we all have a right to live like human beings.
I wasn't expecting to go to court. The first thing that I did was to write a letter of complaint to my local authority explaining clearly that I wasn't receiving enough support to have a reasonable quality of life, and that the assessment done was inappropriate.
You don't have to know everything about the Care Act, the law, the eligibility criteria to write a letter of complaint. It's an important step, and in a lot of cases is enough to promote resolution between you and the local authority. I found putting my complaint, and the outcome that I expected (funding for more support) in writing was a really helpful way of reinforcing to me that my expectation of enough support for a reasonable quality of life was reasonable.
Here are some useful links explaining how to write a letter of complaint;

Steve Broach has written a great post pointing out the aspects of The Care Act that are relevant to people transferring from the ILF (an easier read version of the post is here). Statutory guidance (paragraph 23.29) states; ”there must be an ongoing consideration of the person’s wellbeing, which begins with the assumption that the individual is best placed to judge their own wellbeing. The concept of ‘independent living’ is a core part of the wellbeing principle, and is detailed in the requirement to consider the person’s control over their day-to-day life, the suitability of their living accommodation and their contribution to society.”
Unfortunately, in my case the response to my letter of complaint was inappropriate. I realised that that I needed legal advice. It took me a very long time to find a solicitor that would take on my case. I’ve learnt that you don’t need to find a solicitor that’s near to you, they are very used to working with clients via telephone and email, and they’ll explain how to do this (my solicitor was over 100 miles away). Steve Broach has helpfully put a list of solicitors that will take on disability related cases here. From my research I know that these solicitors do take community care cases (if you know of other solicitors that take community care cases let me know via comments or twitter and I’ll add them);
The important thing is that we recognise that we are all valuable enough to get enough support to have a reasonable quality of life. We have to believe in ourselves enough, and we have to shout loud enough for society to hear how horrendous our lives really are when we don't have enough support. We shouldn't have to do this, but we do. We are on our way to a more equitable society but we are not there yet and those of us that can fight have to, in order to help society to make the right changes. “The most common way people give up their power is by thinking they don’t have any.” Alice Walker.

Tuesday 10 June 2014

McDonald v UK, An Opportunity for Dignity?

On the 20th of May the European Court of Human Rights (ECtHR) ruled that the withdrawal of overnight care from Mrs McDonald by the London Borough of Kensington and Chelsea breached her human rights for almost a year (from the 21 November 2008 to 4 November 2009). However, the court also ruled that from this period onwards the interference in her human rights was proportionate, "necessary in a democratic society", and “in accordance with the law” because that interference "pursued a legitimate aim", that aim being "the economic well-being of the state and the interests of other care users" (quotes from ECHR press release). Owen Bowcott’s summary in The Guardian is useful, as is the background to the case from Disability Rights UK.

My gut instinct on hearing this outcome was sadness, sadness that a country as rich as ours chooses not to grant people the right to use the toilet in a way that most people would regard as normal, and sadness that Mrs McDonald is now condemned to pee in her bed every night. I guess that sadness is tinged with fear too. I need support to carry out all basic tasks, so I'm frightened that withdrawal of this support may be condoned at a European level as being “necessary for the economic well-being of the State and the interests of other care-users ". I'm really not sure what I would do if the support I’m receiving was reduced.

I also feel a sense of hope from statements such as;

 On a personal level the European Court of Human Rights ruling leaves Mrs McDonald living without dignity, and leaves those of us in a similar situation frightened for our dignity. But if we take a broader perspective the ruling is positive in terms of securing the dignity of disabled people in the UK: “The judgement in McDonald the UK is the first time that a breach of Article 8 ECHR [EuropeanConvention on Human Rights] , the right to respect for private and family life, has been identified by the ECtHR in acase concerning the provision of services or support to a disabledperson." (Doughty Street Chambers). Perhaps this broader perspective is useful.

 Looking at the global context, we can see that things are really looking up for the rights of disabled people. The UN Convention on the Rights of Person’s with Disabilities (UNCRPD) was adopted by the UN General Assembly in 2006. That is less than 10 years ago! And things have changed for the better. The wording of this document fills me with hope; “The purpose ofthe present Convention is to promote, protect and ensure the full and equal enjoyment of all human rights and fundamental freedoms by all persons with disabilities, and to promote respect for their inherent dignity”. At both a national, and a global level, conversations about people having the right to dignity, whether or not they are disabled, are becoming more normal, as we become more used to using the language of human rights, and as human rights are enshrined in law.

 To live without dignity, without the basic right to carry out the most basic functions like a normal human being saps one's sense of self, one's personhood. However, the personal reality for so many of us, including Mrs McDonald, is that we are living without dignity. Being able to manage personal functions, such as using the toilet, is so utterly basic.

I have to pee in a bucket a lot of the time, because the toilet in my flat is inaccessible to me (the design of my flat means that using the toilet takes a level of choreography, stamina and aerobics that I am rarely able to manage). Peeing in a bucket is fine when it's a novelty, unusual, and in context. When I was able-bodied I was happy to pee behind hedges if I was walking in the countryside, or if I was camping somewhere without toilets. When I was in hospital with a broken knee having a commode next to my bed to pee in wasn't the greatest experience but it was acceptable. Now the context is changed, now peeing in a bucket is normal, it’s everyday. It's something that I have no choice about despite the fact that I live in a flat with a toilet in a country that regards the use of flushing toilets as the hygienic and socially acceptable way of urinating.

I try to "just get on with it", to realise that there are more important things in life, to focus on the positives and not the practicality of peeing. But the truth is I find it degrading. Those of us who have to toilet 'differently' purely because of an inappropriate environment, or lack of support, know that using a flush toilet is normal in the UK and that other ways of going to the toilet, particularly ways that necessitate other people dealing with our waste, are not normal, and we can never forget this.

For me, I feel that it erodes my dignity, saps at it as day in day out I am reminded that I am less than normal. I imagine that Mrs McDonald has been feeling the same way about peeing in her bed every day since November 2009. And yet somehow she found the inner strength, the energy, the self-belief, and the sense of self-worth to spend years using the legal system of the UK and Europe to announce her right to dignity.

 Despite the fact that this erosion of dignity makes it difficult for us to even regard ourselves as equal citizens we need to find the inner strength and the belief in the humanity of our society to talk loudly about dignity, be open about our experiences of indignity brought about by a lack support. If our indignity is being sanctioned in society's name, when it is deemed “necessary for the economic well-being of the State", then we need to ensure that everyone in society knows about it.

We need to trust in the rule of law both at domestic level and internationally. Our society built structures like the legal process in order for us to have a society that works well and runs well. These structures have been designed by society for society to use, and the ECtHR ruling on the McDonald case reflects this. As disabled people, we need to acknowledge our equality within society. With this comes an equal right to use, and be respected by, the systems of our society.

So let’s regard the ECtHR ruling as an opportunity, and have faith in the rule of law and the humanity of our society. Let’s use the signal by ECHR that dignity needs to be considered when Local Authorities carry out care assessments. Let’s highlight ECHR’s indication that a cut in funding without proper assessment will breach Article 8. It’s time to believe in our right to dignity and take action to secure it.

There is an interesting and very readable explanation of why the result of McDonald v UK is positive by Steve Broach here. Steve is a barrister at Doughty Street Chambers and acted for Mrs McDonald in the domestic courts and the ECtHR.

Thursday 20 February 2014

Striving: a right, a responsibility and a risk

This blogpost is on the new Authors of our lives blog. This is a brilliant blog about positive ideas on the future of independent living. ‘To be truly radical is to make hope possible, rather than despair convincing’ – Raymond Chandler, Resources of Hope

I will be back blogging on my blog regularly now.

Tuesday 21 August 2012

Sutton v Norfolk County Council

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.