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Posts tagged ‘Disabled People’

How (not) to chose a carer – Part 1

Finding the right carer can be like crossing a minefield

I have needed carers to help me for over 10 years now and these are some of the things I’ve learnt.

If you chose to use an Agency you will be able to meet with a number of different companies to see which one is able to best meet your needs.

However, if your care is organised by Social Workers, you or you family will have little choice as to which Agency provides your care needs as this is decided for you by your LA (Local Authority). But most importantly, you do still have a choice over who comes into your home.

If you find a carer disrespectful or rude or they do not understand your needs or provide poor care, you have a right to refuse to have that carer back again.

Because care work is so poorly paid a high percentage of agency carers are from outside the UK. My experience is that many do not either speak or understand sufficient English to be able to meet my needs. And if I’m struggling to work with them, heaven help anyone who is deaf or has impaired vision or speech!

I have spent almost all of my working life employing Nurses and carers from ethnically diverse backgrounds – so I’m well used to making sure care staff can be easily understood by their colleagues and the residents they care for. Also I often had a good number of applicants for each job. However Agencies today are usually so pressured to provide a service that they take on staff whose English is not as good as it should be.

Carers are in our homes for a short fixed time only and they always seem to be rushing to get to their next client. An Agency I used recently sent me a carer who was good – but every time she got delayed at a previous client’s house she missed my visit – leaving me with no breakfast and unable to take the pills I need to have with food. My pain levels increased dramatically, impacting on the rest of my day. After 3 mornings of this – I had no alternative but to ask the agency not to send me that carer again and made the decision to go back to directly employing someone.

The example I’ve just used is fairly extreme, but often it’s been really simple things that carers have struggled with – not burning food – making sure food is cooked properly & served on a hot plate or bowl. Making sure I have the right cutlery. Washing up is a very basic task, but yet I’ve often found that I’ve need to check that dishes and cutlery are washed properly.

I’ve had carers who have refused to do any domestic work, ie cleaning or hoovering, even if that has been part of the work they are contracted to do. I’ve had a carer pull a Dyson so roughly that she has broken the hose – and then denied she had done so – the agency refused to take responsibility for the damage, and whilst I was still arguing with their insurers – the agency lost the contact with the borough I lived in and went bust – so I ended up very out of pocket.

For a time one London Borough where I lived paid a company to undertake shopping at Tesco’s for clients. For the 3 months I used them I don’t think I ever got the right order! One day when my flat front door and step were being painted the delivery guy walked onto the step and left a large black boot print on my carpet and slammed my front door so hard he made a hole in the wall of my hall! As soon as I realised I called the agency & the Council – the agency were less than helpful and I only got a very small settlement.

There are good agency carers, but I no know it can take time for me to find the carer who can best meet my needs. I have used 6 or 7 agencies so far and only one sent me a great carer from the outset, with others I went though at between 5 or 8 people to get someone who was able to care for me properly.

This is the first of two blog posts on this topic.

Part 2 will follow shortly.

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Everyday Life

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Why the break?

I feel I owe the followers of this blog some explanation as to why I disappeared from my blog for 18 months.

There are a number of reasons, so I wanted to  list them so you may understand.

I actually thought I’d already posted this explanation, but on checking my blog when I posted ‘A Trip to the Countryside’ yesterday, I realised I hadn’t! So here it is:

More vision problems

This led to me receiving further eye surgery, I had a right corneal re-graft, cataract removal and lens implant in September 2014. Thankfully the operation went very well and I have useful vision in that eye again after several years deterioration. However, my nursing care was not good and sadly led to a complaint, which was only ever partly resolved. 

In September 2015 I had surgery on my left eye, cataract removal and lens implant. Because my partner was going to stay with me at home, I was allowed home the same day, which was wonderful and with also having a great carer who came in regularly I was looked after much better than I would have been in hospital. 

My operation was very successful and after four months of not being able to drive, I had my scleral lens adjusted and I now have both excellent near and distance vision.

The three months leading up to my op and the six weeks afterwards were difficult. Especially beforehand, my near vision was compromised even before I stopped driving and I found it so hard not being able to read anything unless it was on a Kindle or iPad. Back-lighting together with font and colour changes really helped me. Sometimes using a magnifier worked, but it was always trying and at times impossible to hold a heavy book in one hand and a reading aid in my other, especially as I’ve not got full use of my left arm and hand.

The only saving grace was having wonderful, supportive friends and a partner who helped me so much in so many ways.

Starting a new relationship 

I’m going to write more about this in a future blog post, so this section will be very short – except to say that being with Eve has changed so many things for me in such a wonderful way.

Caring for Judy

When I first met Eve, she was helping to support her cousin Judy, who had breast cancer. Within a few weeks it was obvious to me, as a nurse who originally specialised in cancer care, that Judy had only a short time to live. Eve and I decided to prioritise caring for Judy, over everything else in our lives. So for the first eight months of our relationship, our lives revolved around hospital visits, taking Judy out when she was well enough and for her final days nursing her at home with the help of a wonderful carer. Following the funeral our days have were filled with house-clearing and all the other minutiae that follow a death. But we were also mourning a wonderful woman, who had a huge impact on Eve’s life. In the midst of emptying Judy’s house, the sale of Eve’s flat went though and she had lots of sorting to do, so that her belongings could go into store until she found a new home.

Study and obligations

For a number of years I have been studying Judaism. I have a Jewish heritage, but was not raised Jewishly. I wanted and needed to reclaim my history and convert. This has not been a quick process, nor is it intended to be, it’s taken over 5 years, punctuated with breaks for health and other reasons. At the end of 2015 that part of my journey was concluded. I had made a commitment to the community I had joined to do some work for them, this took many hours, which at the time was a wonderful distraction from the extra pain I was suffering, which necessitated the surgery I had last month. I have completed the bulk of the task I undertook and I will only need to do a regular few hours each week with some extra work around the time of festivals. Now I have more time to write. 

Moving home

After being on the waiting list to move to a fully adapted flat for over 8 years, through a chance encounter I met someone who knew of a purpose built flat just south of the Thames. I viewed it and instantly knew it was the place I wanted to live, and 6 months later here I am. Moving is an exhausting process in every way, and as I finally get everything into place I’m feeling settled and able to write again.

So in a nutshell, that’s what’s been going on in my life. There have also been a number of ups and downs related to all the stuff that disabled people deal with on a daily basis, some of which I will write about. The current UK Tory government is making life much worse for those of us who are disabled, as well as those unfortunate to be unemployed, or earning a very low wage.

Disabled people in the UK are banding together to help and support each other, we have groups on Facebook and other sites. There are great advice organisations too. I recognise I am more fortunate than many, but want to help and educate where I can. 

Some of my future posts will focus on this, as well as aspects of my own life.

 

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A Plea to the Supreme Court

Today, Jane Nicklinson the widow of Tony Nicklinson, the right to die campaigner was at the Supreme Court in London, to ask the judges to give guidance on whether it is permissible for a doctor to assist a severely disabled person to die, when it is that person’s wish.

Tony was severely disabled, totally dependant on others for all his care. He wanted the right to die, at a time of his own choosing. Because he was unable to commit suicide unaided he wanted to a doctor to help him die, and to ensure the doctor would not subsequently be prosecuted for murder, as currently the case in the UK.

This case is particularly unusual, because Tony died earlier this year on 22 August. Jane was given special permission by the courts to continue with Tony’s battle. Just 6 days before Tony died the High Court in London turned down his request to allow a doctor to help him die, but most unusually, gave immediate permission for him to appeal to the Supreme Court.

For Jane to continue fighting on Tony’s behalf, is not only a wonderful tribute to Tony, but unique in UK legal history. Normally, if someone dies their legal fight dies with them. Such is the importance of this case, that it can proceed even though Tony is no longer alive.

Jane is joined by Paul Lamb, another very disabled man who is making the same request as Tony did and was involved in the original High Court Case.

There was another person at the Supreme Court this morning. He case is similar, but differs slightly. Martin (whose surname is not disclosed) had a massive stoke in 2008. Martin wants to be able to take his own life at a suicide facility in Switzerland. He describes his current situation as “undignified, distressing and intolerable”.

Martin’s wife and other family members are unwilling to help him, so he wants to ensure that any medical or nursing professional who goes with him is not prosecuted, as could be the case at present. At the moment such decisions are made on a case by case basis. Although the current legal guidance is that prosecution is unlikely, Martin seeks greater reassurance and clearer guidance.

I am pleased that it has been reported on the BBC news website, that the DPP (Director of Public Prosecutions) will have to draw up new guidelines. This is a decision I feel sure the Supreme Court Judges have been right and wise in making.

The whole debate about right to die raises strong feelings, especially amongst people with disabilities. Some disabled people feel that allowing severely disabled people to have the right to self-determination when it comes to how they die could lead to them being pressured by others. They see allowing such decisions as the slippery slope towards the eugenics of the Hitler’s Nazi Regime.

As someone who is disabled, but has also been a Registered Nurse for over 30 years, I take a different view. I have seen too much suffering. I saw my mother dying from cancer, only being free of pain when she was unconscious for the last week of her life. She was several years younger than I am now. During my career I specialised in nursing people with terminal illnesses and also those with severe physically disabilities. No matter how much good nursing care we could give or how skilled the medical interventions, I saw too many people who felt their quality of life was so poor that they wanted help to die. I also saw greater number of others who had a good, pain free death.

About 25 years ago I joined what was then called The Voluntary Euthanasia Society and is now Dignity in Dying. I feel strongly that everyone, no matter how disabled, has the right to self-determination in the way that they die. That should not be compromised by the inability of physical actuality.

My children know that I have made an Advanced Directive. Should I ever have a massive stroke, or have major brain damage, I do not want to be kept alive. I don’t want artificial feeding or hydration or kept on a ventilator.

In my life I have enjoyed many good things and met wonderful people. I want my children and grandchildren to know that it is the quality of life that matters, not its quantity.

So my plea to the Supreme Court Judges is very simple; please let those of us who are unfortunate enough to be unable to control our own destinies have the reassurance that those who help us have a good death are not punished for their courageous deeds. Please give us dignity in the way we chose to die.

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Where were the people with disabilities?

I’ve just finished watching the funeral for Nelson Mandela. I’ve followed all the coverage closely over the last 10 days. South Africa is country dear to my heart, not only because of my involvement in the Anti-Apartheid movement, but because my adopted daughter, a Zulu, was born there.

Mandiba was a remarkable man, who with others transformed his country and gave it one of the most non-discriminatory constitutions in the world. So, in that wonderful rainbow nation where were the disabled people? As I watched the crowds in Pretoria outside Mandiba’s home, the thousands at the football stadium, the hundreds queuing to view his body and those who lined the route his coffin travelled to Qunu yesterday, I did not see one physically disabled person.

I asked my daughter, who is currently in South Africa with her sons, if she has seen disabled people on any of the local footage. She told me she’d only seen one person who was in the queue at Mandiba’s lying in state.

Because I was uncertain about writing this particular blog, I also sought advice from my daughter, a woman wise beyond her years. She told me the facilities in South Africa for disabled people are not good, that disabled people are not as respected as they should be. That the authorities think that just because they provide a couple of disabled parking bays, an extra accessible loo and some ramps they have done enough.

It seems as if not everyone is equal, despite the constitution (and I’m not just talking about the huge inequalities of wealth and opportunity that still exist). For disabled people, South Africa is rather like the UK was before the DDA was made law. I’m sure that they would be many experienced disabled people in the UK who would willingly give help and advice to the South African government and other powerful organisations to help disabled South Africans play a greater role in their country.

I would be honoured to be part of that.

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