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.

Join the campaign and find out the state of social care where you live.


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

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?

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