Hi everyone,
Some of you may have read the 'So Bizarre' thread on this forum, but for those that haven't, I'm posting a new thread on this specific issue. I am hoping that many more will 'get on board', and maybe - just maybe - we can get the powers that be to take some notice.
After 18 months of caring for Mil in our own home, and having had carers assessments that highlighted the need for us to take at least short respite breaks, about 2 weeks ago I attempted to organise just a weekends respite, so we as a family could attend a show my youngest daughter is going to appear in. Mil is sadly, no longer able to take part in and enjoy events like this. She is self funding, and I honestly didn't didn't think I would have an issue with doing this. However, I was wrong.
My local Authority, along with it appears, several other authorities across the UK, have effectively removed the availibility of respite beds right aross the county. They have closed down the one LA run care home that could accomodate dementia sufferers and have stopped commissioning respite beds in private homes. Private homes run as businesses - none (and believe me, I've contacted a lot of them) will accept planned bookings for respite breaks - they say they cannot 'afford' to have a bed empty just 'in case' someone might want to book a respite stay, their beds are only available for permenant residents. In an emergency, you can phone round the homes and see if one - by chance - has a bed available that they are prepared to allow you to use at that point in time for respite, but no guarantee you will find one.
This means that no carer in any of the LA's that have withdrawn the availibility of beds can ever book a holiday without their loved one. We can't, for example, get respite care arranged should we need to go into hospital. We can't have a break simply to stay in our own homes and recharge and recover enough to go on caring.
I'm furious - and I'm scared. The thought that should I need it, I would be able to take the odd break is one of the things that has enabled me to continue to care for Mil at home - without it, I honestly feel that my right and my ability to provide this care is severely compromised. I don't know if I can go on, day after day, week after week, month after month, year after year, when I can never have even just 24 hours to take a break from the relentless stresses and strains of caring.
So, having contacted local MP's, councillors, press, Assembly Members, carers associations, myself and others on the TP are trying to do something about this situation on a wider scale, using Social Media. Onlyme and CeliaW and a lot of others have contributed idea's and we are all busy facebooking and tweeting away.
Please join us, if you can, and help to spread the word - even if you are able to access respite now, if this sort of policy continues to be adopted by local Authorities, you may not be able to get respite for much longer. We have a poster (see below) and the hashtag #FightForRespite - please share it out if you possibly can. Tag Norman Lamb, Minister of State at the Department of Health - I spoke to him on Radio 5 Live this morning about this issue. (you can listen to the programme on this link, http://www.bbc.co.uk/programmes/b054p0cx#auto - I spoke to him at about 45.30 minutes in) He went on about funding being available, but had nothing to say about the increasing practise of removing the availibility of actual respite facilities. Tag any and every celebrity/organisation you know of who has shown an interest in supporting dementia care. Post the image, with a short explanation to any support groups/pages on Facebook that you think might help, and ask your friends and followers to re-post, share and retweet.
Thank you xxxx
Some of you may have read the 'So Bizarre' thread on this forum, but for those that haven't, I'm posting a new thread on this specific issue. I am hoping that many more will 'get on board', and maybe - just maybe - we can get the powers that be to take some notice.
After 18 months of caring for Mil in our own home, and having had carers assessments that highlighted the need for us to take at least short respite breaks, about 2 weeks ago I attempted to organise just a weekends respite, so we as a family could attend a show my youngest daughter is going to appear in. Mil is sadly, no longer able to take part in and enjoy events like this. She is self funding, and I honestly didn't didn't think I would have an issue with doing this. However, I was wrong.
My local Authority, along with it appears, several other authorities across the UK, have effectively removed the availibility of respite beds right aross the county. They have closed down the one LA run care home that could accomodate dementia sufferers and have stopped commissioning respite beds in private homes. Private homes run as businesses - none (and believe me, I've contacted a lot of them) will accept planned bookings for respite breaks - they say they cannot 'afford' to have a bed empty just 'in case' someone might want to book a respite stay, their beds are only available for permenant residents. In an emergency, you can phone round the homes and see if one - by chance - has a bed available that they are prepared to allow you to use at that point in time for respite, but no guarantee you will find one.
This means that no carer in any of the LA's that have withdrawn the availibility of beds can ever book a holiday without their loved one. We can't, for example, get respite care arranged should we need to go into hospital. We can't have a break simply to stay in our own homes and recharge and recover enough to go on caring.
I'm furious - and I'm scared. The thought that should I need it, I would be able to take the odd break is one of the things that has enabled me to continue to care for Mil at home - without it, I honestly feel that my right and my ability to provide this care is severely compromised. I don't know if I can go on, day after day, week after week, month after month, year after year, when I can never have even just 24 hours to take a break from the relentless stresses and strains of caring.
So, having contacted local MP's, councillors, press, Assembly Members, carers associations, myself and others on the TP are trying to do something about this situation on a wider scale, using Social Media. Onlyme and CeliaW and a lot of others have contributed idea's and we are all busy facebooking and tweeting away.
Please join us, if you can, and help to spread the word - even if you are able to access respite now, if this sort of policy continues to be adopted by local Authorities, you may not be able to get respite for much longer. We have a poster (see below) and the hashtag #FightForRespite - please share it out if you possibly can. Tag Norman Lamb, Minister of State at the Department of Health - I spoke to him on Radio 5 Live this morning about this issue. (you can listen to the programme on this link, http://www.bbc.co.uk/programmes/b054p0cx#auto - I spoke to him at about 45.30 minutes in) He went on about funding being available, but had nothing to say about the increasing practise of removing the availibility of actual respite facilities. Tag any and every celebrity/organisation you know of who has shown an interest in supporting dementia care. Post the image, with a short explanation to any support groups/pages on Facebook that you think might help, and ask your friends and followers to re-post, share and retweet.
Thank you xxxx