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The problem with respite - Carers UK Forum

The problem with respite

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The lack of suitable flexible respite has been raised a lot in this forum. I thought I would kick off a discussion with a personal experience.
Back in the 1980's I was an NHS Unit Administrator for Learning Disabilities in a medium sized English urban area. Apart from some 90 long stay 'places', we had about five or six beds designated for respite - shared one each in six smaller six-bedroomed care homes for younger folk with disabilities, run like normal group-homes, with 24 hr staff. No uniforms or anything like that.
Going through my bed stats I couldn't figure out why we had so few weeks occupied: in practice occupancy of respite was running at less than 30% of capacity. I spoke to some of the staff about this, and there was no real consensus about what was going wrong, some blamed the parents, who were picky about which weeks they wanted.
The real problem I concluded was that it wasn't run by a single respite manager at all, the nursing officer in charge had no performance targets to achieve full occupancy, there was poor communications with parents about availability, and - to be totally honest - it quite suited the staff to have spare beds and to give the impression that they were all full because respite patients are hard work.
Of course the NHS isn't a for-profit service, but no business would run like that, it would go bust.
Moral of the story? Never believe what you are told by staff - always probe further and go up the management ladder of formal complaint when you can't get what you need. Managers often have no idea what is really going on at the coalface.
respite in our area is getting less and less. Not something I have accessed myself but supported others when campaigning to keep beds available.

Some of the loss has been due to council cuts, yet one of the places with just 1 x f/t and 2 x p/t staff addition could have been run much better. As staff levels were reduced so were admissions resulting in lack of use then closure.

The one remaining home in the borough that specialised in dementia care was closed due to above and families tore apart when some residents were moved miles away.

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Scally - I think you would find that things have changed a lot since the 70s and 80s
These days everything is about the money.
Local Authority homes have closed right left and centre till there are very few left (there are none in my area). The vast majority of residential homes are private. In the past the homes were willing to leave one of their rooms so that it could be booked for respite and accepting that it may not be always filled. These days money is so tight that they cant afford to do that - there has to be regular guaranteed income, so all the rooms have to filled as soon as possible on a permanent basis.
In order to make respite available for carers, Local Authorities used to pay for a certain number of beds in care homes to used for respite, so the care homes used to be assured of regular income. Lots of LAs have now stopped paying for this and are expecting the care homes to make the beds available off their own backs - but they arnt (see above) so you cant book anything in advance. If you phone up last minute to see if they have any rooms and they happen to have one free you might then then be able to book it for respite, but there is no guarantee that there will anything.

On another forum there is a lady who tried to book respite for her MIL with dementia in advance, so that she could attend a function involving her daughter (not possible to change the date), and as she was self funding did not think it would be a problem. However, although she tried all the care homes in the area not one could offer her bookable respite.
She then kicked up a fuss and involved her SW, her MP and the local and national papers. Not one of them managed to find a respite bed.