Joan's story — the state of social care in Great Britain

16 November 2016

As part of our social care campaign, we've spoken to disabled people across the UK about their experiences with social care. This is Joan's story.


by Joan Searle

I live in a beautiful part of the country by the sea, and love my busy life. But living alone with the spinal condition I have is hard.

Despite the wonderful personal assistants I have who visit me from my care support provider, I still struggle to get in and out of bed and wash myself without help.

My council has been providing me with care at home for almost 30 years, but I don’t get a choice about what time a carer visits in the evening to help me get ready for bed.

Joan, 80: Nobody tells me when to go to bed.Sometimes it can be as early as 6pm. I don’t want to go to bed at the same time every night and so try to manage to do this myself instead.

It sometimes takes a long time to get ready, leaving me exhausted. At the moment I can just about manage, but soon I’ll need the help and will have to sacrifice my independence because this is the only bedtime support option available to me.

It is frustrating to think that soon I’ll have no choice about when I go to bed so I’m trying to hang on to my independence for as long as possible.

I love gardening, and take part in a garden project in a local school. I also run a craft club and lead a very active social life at the moment. I’d be really sad to have to let this go.

In an ideal situation, my bedtime care would be flexible: a carer would come in when I want them to and I would have the chance to change the call time. This would mean I could get the support I need and still live my life the way I choose.

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This is a terrible state of affairs the lives of the ill and disabled have come to mean nothing all the government want are cuts.

It is my belief that which ever party govern us when ever it comes to cuts its the disabled and elderly that bare the brunt which in turn disrupts our daily life whiles,t my wife and I are disabled and look after each other without social care there will be a time when we may need social care an neither my wife or I would accept having to be put to bed at 6pm as at present my wife is in bed around 9pm myself it could be after midnight and as my wife is still gainfully employed by the nhs 3 days a week we are up at 6am most days so we would have to pay a private company to supply social care in the future rather than rely on the local councils social café system of 15 minutes a day which is nothing considering the health problems my wife and I have to cope with each day

People should be treated like real people and not objects to be tidied away. If people were able to apply for a grant to have money to pay the right sort of people to assist them at specific times of the day, and retain, or regain their independence.

HI Joan I hope you get what you need in order to support you live your life. You ask is so reasonable, not rocket science and actually not without the bounds of what we know is very easily possible. Services need to serve us a disabled people not rule our lives! All the very best from cold frosty Glasgow Susan

The efforts of this organisation to make the lives of disabled is highly appreciated.

I know this approaching problem all too well myself. You feel so alone trying to stave it off and be like other human beings, not a lot to ask. Joan we must keep on fighting and getting the message out to the disbelieving masses.

With little notable success, I have been fighting these cuts, in Cheshire for a long time, particularly in Cheshire East. If everyone got up and stood together, effectively 'to slug it out' with the Local Authority and Clinical Commissioning Group, we wouldn't be having this problem. We need lots of people to get into all relevant Local Authority, Parish, Clinical Commissioning Group and Hospital Board meetings.. and to beat a path to the door of their own MP for a meeting.. preferably one by one by one, for the MP. They are all supposed to represent our interests. They show no sign that they have read that part of their contract. We have to find a better way to get everybody onside so that both Joan and every other vulnerable person, are not in a position where they are shoved about and 'have to be grateful'. We did not pay so that people could be treated as badly as they currently are. We did not pay to have all our public money either abstracted for other uses, or thrown away to profit commercial or quasi-commercial organisations (charities). We need our charities to stand up for us, to act as 'ginger groups,and to serve their actual, original purpose - as is happening here.The 'duty of care' lies with our NHS and Local Authority. We should stop being beggars and start demanding our rights! Until we do, this situation will continue. Everyone has a positive duty to take part in a democracy. Otherwise we are left with this.... mess.

I hope that you manage to arrange a later time for your provider to get you into bed. Just a thought but would you be allowed to change your provider to one who is able to do a later bedtime call?

The arrangements for care seem to vary so much over the country. I have carers and they come at specific times. It is challenging, though, because I am not always consulted about the times. I know people whose carers arrive between one time and another - almost when they can fit it in. The costs are very high, too, for those who have to fund their own care. In my area, the cost is £20 an hour. The carer receives less than a third of that, the remainder going on overheads, on-costs and, of course, profit. Even a couple of hours a day can add up to over £10K a year. If you don't qualify for funded care, that can be a prohibitive cost. My care provider finds it hard to fill "calls" sometimes because the wages are low, so the client has to take what is on offer. The provision of care ought to be taken back in-house and not sold to the lowest cost provider.

I am fortunate not to be in your position yet, Joan but having read all these comments, particularly the last one by Ann Merchant of 8th December 2016 about changing the provider to someone who may be able to call at the later time - I just want to put another side to your story.
I used to try to get work as a Carer. One Agency Head told me he tried his best to enable the later night bed-time calls but he found it very difficult to get staff to cover those times. Instead he himself tried to do as many as he could, with the result that his marriage and personal life was suffering. He didn't like to send his staff down back streets and what he felt were dangerous areas at night when they might be more likely to be attacked, so he tried to restrict bed-time calls to 9pm at latest. This meant that the bed-time round must start as early as 6pm because there was such demand for help undressing and getting to bed. Naturally, he tried to make sure that the more able-bodied clients were undressed earliest so that they could put themselves to bed at the time they wanted. But to keep the staff, he had to keep their hours social and remember they had a life too.
The trouble was that for ease of accounting, I suppose; duty rotas tended to be the same every week, whilst it would have been fairer, perhaps to stagger it. On the other hand, older people - who tend to be the main ones to use these services - like regularity and complain bitterly if their service is late or changes from week to week. In effect once a Service has been started it tends to stay like that because other clients complain.
Who are the Carers? They may be older people like myself. Someone who has been looking after a relative who died and who now wants to continue caring for older people because they love it. Or a young mother who needs an extra job to fit round caring for her young family, so as to make ends meet. Occasionally, they are young single people of either sex who are doing it as a 'gap year' job, or people of any sex who are doing it because they can't get any other work - they can be brilliant or terrible, 'jobsworths'.
I'm sure you know all this, Joan - while complaining is therapeutic, don't expect things to change cos there are other lives affected and they have rights too. I think the most important advice I personally can give is that during ones life it is very important to make good friends - particularly with ones 20 years younger than yourself - one day, you might be able to call on them to help give you the quality of life you will desire in your twilight years.

may i point out though that this is not a new problem. putting disabled people to bed at 6pm and not getting them up till around 8-9pm is inhumane. but has been going on for at least the past 15 yrs if not longer. I knew someone back then that that was happening to. until his nephew took him to live with him n his wife. keeping elderly and disabled people in bed for that many hours leads to bladder and bowel problems, incontinence, weight gain,blood clots and possible bed sores. a bad nursing practice all round.

I can see things from most angles. However people who go into this line of work, should expect it to be shift work. Isn't that why a lot of people work those jobs to fit around the their lives? I am disabled due to spinal injuries. I can only rely on my partner at the moment, but if the carers were helped by giving disabled people electric beds so they could get in to bed on their own, It would prove better for all concerned & cost effective to a lot of them. I do try to think of others and not whine. If on occasion, someone couldn't help at that exact time, I do think how lucky I am to have a roof over my head & help even if I have got to sleep in the clothes I have been wearing all day! I am not going to be awkward and moan and complain if on occasion my morning helper has to help me change into some other day clothes. The world will not come to an end!!! If people are incontinent as I am that's a whole different issue. If the moaner's were to give a little and sometimes say I don't really need you at that time but I do need help in 24 hours. I could just help everyone.

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