Family life

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Quick poll please.

Who thinks disabled people should have their care withdrawn because they want to sleep in a double bed?
That's ridiculous!

Do you want to tell us a bit more? (Quite ok if you don't)

Hi Melly1,

Thanks so much for replying. Cutting a long story slightly shorter. I chucked Paul's profiling bed in the garden and got our old double bed out on Friday. Carers came on Monday. They thought it was much easier to care for him on double bed with space to access either side and to safely roll him. But they had to tell their management. Tues and Weds we were away for hospital appointments. This morning no carers turned up and no phone call to explain it. Eventually I got the care agency to tell me that I had to talk to nhs continuing health care and they gave me the number of their duty office. My partner, who the PIP assessor claims needs no help in communicating by phone rang first but they just humg up on him. He tried again and I spoke to them after telling them he doesn't need any help phoning. Their attitude was how dare you phone us. We didn't cxncel his care and reluctantly said they'd look into it. Then abrubtly hung up. A couple of hours later I phoned back and got told some waffle about policies and procedures and protocols and it doesn't just happen overnight. I pointed out that it had just happened overnight. Tried 999. Felt guilty about taking someone needing medical help's place in ambulance control's queue but didn'y see anyone else doing anything. They told me to contact the gp - who I'd contacted previously but who'd done nothing then so I hadn't bothered with. I spoke to social services who are supposed to look after my interests as a carer but who insist that there's nothing they can do about a failure of chc to provide care. I phoned the gp's surgery again, telling them if they didn't contact me in the next 5 minutes I'd take Paul round to them and let them sort it out. After about 4 min and 50 seconds the gp phoned back and agreed to try calling chc. I told him that if they hadn't done anything by tomorrow morning Paul would be left outside their offices and reinforced this by pointing out I knew how to get to Fareham. Some time later I got a phone call from someone from chc telling me that the issue was the double bed. He's promised to phone me by 10am tomorrow. If not them Paul will be outside their offices by lunchtime, possibly with a big sign explaing why he's there and a phone call to the local papers. There's a lot more to it but that'll do to outline the situation for now.
Can you get a doctor to your house to check the double bed and then say it is medically suitable and preferable for the disabled person, and sign a form to that purpose.

It all sounds a complete xxx-up. But your attitude is the correct one - ie, say if they don't sort it pronto, they end up with the disabled person on their premises.

All best with it!

(PS - if they insist on the profiling bed, get them to put that in writing, and then medically contest it!)
That does seem like beurocracy gone mad- I suspect it may be to do with insurance and liability . If the OT has specified a profiling (hospital) bed in the moving and handling assessment, then the care agency would probably be liable should any injury result from them using a double bed against the OT's advice. I hope you can find an acceptable compromise.
Just to clarify Paul's all in favour of taking him to places to force the issue. I wouldn't do it if he wasn't totally on board.

The man from CHC phoned back around 10am as promised as did my usual contact in social services and the financial adviser who specialises in care funding and is a carer himself. Possibly because both the doctor and social services know we've got form for taking Paul and leaving him to get things sorted out so they've been warned it's not an empty threat. We've reached a compromise whereby Paul sleeps in our double bed but we get a profiling bed back for the carers to use. On the plus side the social services woman is trying to get all the things she was getting started on until CHC took over actually put in place. We've only been waiting since February. All that happened since CHC took over is that the carers' hours were immediately reduced. And we got round to speaking to the financial adviser to sort out Paul's retirement which we should have done months ago. Still haven't had any carers since Monday and not expecting them tomorrow but things are moving and they've realised that we're not backing down on the double bed front but at least one person is determined to get our carers put back in place as they were before CHC took over. And a day centre place too. Thank you all for your advice and encouragement.
Incidentally, an unexpected bonus of the switch from the profiling bed is Paul doesn't start struggling to breathe the moment he gets into bed and stop soon after he gets up. Don't know if it's the materials they're made of or the enclosedness of the padded cot sides but if someone you care for has breathing problems in bed that go away when they get up I'd get them to try a normal bed for a while and see if the problem goes away. At lesst then you'd know where to start looking for a solution. Didn't occur to me the bed might be the cause before.
My dad "left," me at A & E as a teenager when my notes went missing and no one would take responsibility for removing my stitches ( which were well overdue for removal, with skin growing over them - ouch") Likewise, I threatened to take S to the social care office if they didn't sort out his care ... So I too can vouch for this method.

Re the double bed, is it lower than the profile bed? If so simple blocks to raise the height to protect the care workers back and an alteration to the care plan, might satisfy everyone. If not, at least you have a compromise, assuming you have room for both beds.

There was a carer on the forum who had a special bed so that both her caree's needs were met and they could sleep side by side. Could've been NanaNana. If the search function allows you to search old posts, you might find further discussion on this topic.

Sorry Melly1 not to have got back to you. The issue is with paid carers (or more likely their managers and/or insurers) who apparently need the bed to be higher and narrower (and probably if we got that they'd then insist it went up and down or bent at funny angles). Had OTs round yesterday who say if he isn't going to sleep in it there's no clinical need so they can't provide it! Catch 22.