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No respite
SteveE
Member Posts: 52 Courageous
Our son is 47, cerebral palsy from birth, we are late 60s now. We have enjoyed respite care for many years but an episode at the only respite care home on offer two years ago led to a hospital stay, wrong diagnosis, and extreme trauma for the family.
We were told he was likely to die. And we rushed back from our long awaited break. A long story which started with poor care at a care home that had no medical cover available from the local GP, and ended after many months with the realisation that the problem was constipation and not the "(possible) aspiration pneumonia" (hospital's words) that he was being treated for. Poor care, poor handover, poor diagnosis.
The CQC have been contacted but so far no action taken. The local council continue to offer only that place. Of course we cannot use it. We cannot even mention the name of the place in front of our son. Nor even go near the place when out and about. Social services suggest direct payments and in-house care. We don't want additional responsibilities that direct payments bring and we doubt carers will be able to work within the rules and regs in our home. We as parents always manage of course.
And so we carry on, now with no respite care arrangements in place. An apathetic social services dept (note, not the social workers themselves!) who ignore the dangers of contracting a care home with no GP cover (social services and the care home knew this but no-one mentioned it to CQC). We need help not danger and ignorance.
A suitable care home, professionally run, with proper medical support in place and working, properly equipped for those who are entirely dependant on others, with space and quiet, is all that we ask. Kind of what we had back in the day, really. But it has gone.
We were told he was likely to die. And we rushed back from our long awaited break. A long story which started with poor care at a care home that had no medical cover available from the local GP, and ended after many months with the realisation that the problem was constipation and not the "(possible) aspiration pneumonia" (hospital's words) that he was being treated for. Poor care, poor handover, poor diagnosis.
The CQC have been contacted but so far no action taken. The local council continue to offer only that place. Of course we cannot use it. We cannot even mention the name of the place in front of our son. Nor even go near the place when out and about. Social services suggest direct payments and in-house care. We don't want additional responsibilities that direct payments bring and we doubt carers will be able to work within the rules and regs in our home. We as parents always manage of course.
And so we carry on, now with no respite care arrangements in place. An apathetic social services dept (note, not the social workers themselves!) who ignore the dangers of contracting a care home with no GP cover (social services and the care home knew this but no-one mentioned it to CQC). We need help not danger and ignorance.
A suitable care home, professionally run, with proper medical support in place and working, properly equipped for those who are entirely dependant on others, with space and quiet, is all that we ask. Kind of what we had back in the day, really. But it has gone.
Replies
You mentioned your local council, but I wonder whether you've tried contacting your MP about your experiences, to see if they can help you advocate?
We are sort of in the same situation as well. When he becomes eighteen years old I’m not sure what will happen. Fortunately his older sister is willing to babysit him during the day for a couple of hours. But I need respite care during the weekdays.
Our daughter, who has always lived at home with us, is 41 years old, has Down's syndrome with autism and severe and profound learning difficulties. She also has a progressive congenital heart defect which causes her to have hypoxic seizures. She is also deaf with no speech and has recently lost her sight due to inoperable cataracts and needs support with every aspect of her life. She also needs use of an attendent wheelchair as she has limited mobility.
Since losing her sight nights have become difficult for everyone of us. She regularly gets out of bed after 2-4 hours sleep and shuffles around and out of her bedroom and cannot be persuaded to get back into her bed. As a result, we are now having to spend alternative nights sitting up with her in the living room to keep her safe. Sleep deprivation is increasingly hard to cope with, and as we are in our 70th year we need to set up some sort of future care for her when we are unable to do so or she outlives us.
Respite has been attempted throughout her life but never been successful due to her complex needs. She does not settle in unfamiliar surroundings and becomes distressed and can be aggressive. She currently is supported at our local day centre by 2 support workers for two 2-hour sessions a week when she is well enough to attend and this cannot be increased.
We have another meeting with our recently designated care coordinator next week to try and get some care for nights but we don't think anything will have been sourced (and this is 3 months since we asked about help!). They may promise to do something but we doubt it as our daughters needs cannot be catered for in our area. Watch for an update!
where abouts do you live please?