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The Loss of Hope - Carers UK Forum

The Loss of Hope

Share information, support and advice on all aspects of caring.
For the past month my father has been kept off daycare due to a pressure sore, which although raw is now healing well, just not fast enough for the Social Services. Today I was informed that my father's place at the only remaining higher dependency daycare facility in Tameside has been withdrawn. It seems that there is now a long waiting list, apparently this has absolutely nothing to do with the council closing down the other facility. Unfortunately I have taken this far harder than it would seem to merit.

Funny how little things can make such a difference, I suppose its because the Social Services don't realise what it means to me. Those three days of daycare (it was 4 before the first round of cuts) represented hope, not for my father but for me; hope that I could eventually carve out a little of my life for myself, no matter how small.

To cap it all the SS have informed me that the home my father normally spends respite at is also full, meaning that I will either have to send him to a strange place or do without.

The only crumb they're offering is that once the sore is healed they'll put him on the waiting list for one days daycare a week. They make me feel like someone is tossing a coin into my begging bowl.

Hope is a dangerous thing, because the loss of it can be fatal. I've finally realised something, I don't matter and I never have!

My new-to-the-forum post, incase you are wondering where I'm coming from.
I have no words of wisdom or advice, but just wanted you to know that someone was listening and feels your pain too xx
Hello Dave
Today I was informed that my father's place at the only remaining higher dependency daycare facility in Tameside has been withdrawn
have they given you a reason for withdrawing your Dad's daycare placement ? Is it because he hasn't been for a month ? If so I'd point out that his not going has not been from choice but because of the pressure sore he hasn't been able to attend and would they please reconsider :shock:

I think I'd also contact the home where he normally goes for respite and check that (a) social services are being 'truthful' and (b) if they are, asking the home directly when they think they will have a vacancy.
I've finally realised something, I don't matter and I never have!
never, ever say or think that :shock: You do matter, very much so !
Letter to MP. Check
Letter to local paper. Check
Letters to local councillors. Check.

Problem sorted ... sadly we all need to learn to fight for our rights to party.
That's not fair! It's fine to let someone else have dad's place while he's ill, but unlawful to withdraw a service without reassessment. You have a right to a copy of any assessment, so write for a copy! With regard to the home, they need to consider dad's need to go somewhere he knows, I think it's all to do with human rights. Ask for a copy of how they reached their decision. I'm betting neither have been done, hopefully after you contact them, there will be a change of heart.
PS Also ask SSD for an updated carers assessment, due to the change of circumstances!
I have been told that places are normally cancelled if there is no attendance for 3 weeks, although the centre itself thought that I was unlikely to lose the place. The Social Worker told me that she's asked my fathers district nurse how long it would take to heal the sore properly, and was told a further 4 weeks at least. I intend to ask her about this tomorrow, as I'm not even sure that they know about Albert has losing his place.

The killer for me is that I think they're blaming daycare for the pressure sore. Unfortunately the local council were unwilling to pay the extra in order to have 'moving and handling' included in the daycares service contract. Which means he would have to spend 5 hours in his wheelchair. I've offered to buy an alternating pressure relief cushion for his chair but to no avail. I think that this is the excuse they'll use to exclude him going back.

I'll think I'll take your advice and ask for a written copy of his reassessment. Although I generally like to minimise contact with the SS in case they become hostile; IMO they have far too much power and I don't want to provoke a reaction which would harm my father.
Dave, dad's need for "moving and handling" should have been part of the assessment before providing any service was provided. Have you ever heard of a Subject Access request? It's what they call a request to see your file, anything they've written about you. If you have dad's permission, you can do one for him too. I was appalled at what they'd written about me, maybe it's time you made one? It should be provided within about 40 days. Has dad been provided with an air bed now, to help his sore?
Thank you for the advice. Albert does indeed have an air bed to prevent sores but not an air cushion for his wheelchair (apparently they don't provide those).

I talked to the daycare centre yesterday and they confirmed the cancellation of the service but told me that the social worker had told them that she would 'start him again' in around six weeks. They also told me that they are frequently having places cancelled and coming up for reallocation.

I slept for four hours last night, having finally calmed down. Although I'm utterly depressed again after another visit from the social worker; she seems to think the sore will take 2 to 3 months before its healed (something I'll ask the district nurse about tomorrow). After my chat with the daycare centre she felt the need to explain her decision personally, and even finished by saying she felt justified in her action. Maybe she is, but I still find it soul destroying.
On the 'up' side (such as it is...) it does at least sound like your father will get a place back in daycare at some point....

Would it help lift your understandably crushed spirits right now if you could start putting in place your plans for respite care later in the year? Even if it has to be in a strange place, as you said in your first post, the time may have come where your needs have to take priority, even if it means your dad coping with something unfamiliar, as it does sound like you are really, really 'down'. Sometimes, when we are under 'constant stress', it can take only 'one last thing' to crack through the precariously held support for our carees, and we go crashing down down down.

Perhaps, with something to look forward to - a break from caring - it will 're-arm' you for the immediate future without the weekly break the day care provided?

As for it being a strange place, the new respite place might, possibly, turn out to be better than his usual one????

I do, do hope that something will 'turn the corner' for you, and that 'hope' can come back into your life. Your life DOES count - even if, for the time being, it is dedicated to someone else......

Kind wishes, at such an extra difficult time for you - Jenny