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

8 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 Lee's story.

 

by Lee Eidson

I have complex learning difficulties. The social care which has enabled me to get out of the house and enjoy various activities for many years — as well as attend college — has recently been cut from five days to just three.

My behaviour could deteriorate if I don’t get the support I need and I am really worried I won’t be able to pursue my big passion — acting.

I really love going to the local centre and seeing my friends. My social life is really important to me and having my care package cut means I will have to stay at home a lot, making me feel really down and pent up.

No way to appeal decisions

With the help of my mum and dad, I’ve argued with the local authority about the decision, but there isn’t an independent appeals process, so there’s very little we can do about it.

This makes me feel angry. It’s unfair we don’t have the right to give our point of view or correct the things they’ve got wrong about what I can and can’t do when they made their decision.

Lee: I want to be taking centre stage, not stuck in my living roomI feel like I’ve had the rug pulled out from under my feet. I thought the support I was receiving was for life. I feel like it’s been changed unfairly and without warning.

My parents can’t afford to pay the cost of my support and we all feel like we’re in an impossible situation. It puts a lot of pressure on us as a family.

With the cuts to my support, I’m worried I won’t get to see my friends as much, which makes me feel frustrated and lonely.

With the right support I could live a much happier life and learn more things. I’d be better behaved and feel calmer.

I would also have friends and have the opportunity to speak to adults that I feel I can confide in. I would be really sad if I couldn’t see my girlfriend as much.

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

Comments

Disgraceful state of affairs

I am sure Leonard Cheshire has a team of expert lawyers that can resolve Lee's problem. If not I would advise using Local Gov Ombusdman after he has made the usual three level complaints of the Local Authority and said he is not satisfied with their decision. He should make sure his complaint is worded carefully.
He should ask the Ombudsman for an independent Social Worker assessment and an independent Occupational Therapist assessment to produce an independent costed Care and Support plan under the Care act 2014 and regulations. The Local Authority will try to fetter this Law any way they can by saying it is Council Policy. Council policy is not the law. But the Ombudsman can recommend that they comply.

My Mother is 90 my family looked after her for 3years,she now needs more help than we can cope with,we now pay £1500 per week God knows what will happen when our money runs out.

Hi all,

My husband and myself have personal care at home, and have had for some years now.

Last month our care package went down from 33 hours per week to 13 hours per week, with no hope of ever getting the hours back. We where really shocked as we were told nothing until someone came and told us about the cut in our hours.

Both of us have conditions that will get no better, but they just don't care all they want to do is save money, but tell me why they would put in a £5,500 toilet in what a waste of money!

Thanks for reading my add,and good luck to all of you.

Debbi.

Hi Debbie,
So sorry to hear about the cut to your care. Please do fight back! You have the right to do so! Were you in receipt of ILF funding before? If so there is a solicitor who might be able to help - get in touch with 'Inclusion London' or DPAC.
Join DPAC to fight the cuts!
See Inclusion London's report on the ILF closure.
As for why they are willing to spend on a expensive toilet & not care... it's because it's all about the money & the huge contracts & tenders being awarded to corporations & companies. If Central & Local Govt. can cut care provision & arrange contracts with firms who take up & deal with some of the issues when they do so & better still, if they then also get us to pay for it all, then all the better - such as with LinkLine & expensive ready made food deliveries.
Billions of pounds are spent on huge contracts with Maximus, Atos, A4E etc., and there is mounting evidence that the cuts are actually costing us all a lot more than they save, but that's precisely the point - stop giving people money and give corporations money instead. It's all sooooo wrong!
Love,
Mary-Ellen

There is a right to appeal. People must do it themselves, in their own way. Lee needs to contact the local authority, often!

Find out who the team leader is and NAG!

That is what I have done and am doing now . . .

Thank you for your comment, Rosanne. We admire your tenacity, but it shouldn't have to be that way. We are campaigning for a true and independent right of appeal. Visit www.leonardcheshire.org/socialcare to join the campaign.

Thank you Leonard Cheshire!
Please speed up & intensify your efforts - the impact of the cuts & having to fight & appeal & challenge & meet with officials & deal with officialdom & mountains of paperwork & justify & beg & plead is devastating, dehumanising, destructive & debilitating and the costs to our health & wellbeing & independence is horrendous & immeasurable!
I have been fighting my local council for my care since the closure of the ILF in 2015 and this has been so stressful that my diabetes, which I had been controlling very well for over 5 years, without any medication whatsoever, has deteriorated so alarmingly that my GP has put me on three different meds now & is still worried for me!
Prior to this fight and all the additional & enormous stress it has created, I was doing so well, controlling my diabetes with my diet alone! I really was doing so well! So much so that my GP invited me to meet her other diabetes patients, to talk to them about what I was doing and how I was achieving such great results.
Please do all you can, Leonard Cheshire & everyone, people's lives literally depend on it.
Love & thanks,
Mary-Ellen

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