Three years ago we managed to secure continuing health care funding for my mother as she is in the late stages of Alzheimer's disease. My 89 year old father still cares for her full time at home however. Her care plan entitles her to 50 days respite a year but since receiving CHC funding and now in the hands of the NHS I am unable to make the bookings myself. Her CPN must do this. As there are very few respite beds in our area, social services hold the diary and all bookings need to go through them. I am having great difficulty getting the CPN to do this however and we face another year of just trying to take respite if and when a bed becomes available. My father is far from well now with kidney disease and cardiac problems and desperately needs the respite. Without being able to book in advance however we cannot arrange breaks for him. Has anyone else had this problem? I deal with 12 different agencies in order to co-ordinate my mother's support at home. The only thing I am prevented from doing does not get done !
I am having problems booking respite in advance
- Thread starter Hafod
- Start date
Unfortunately I have always found that respite beds are not kept open as beds are usually filled so quickly be people needing permanent residency. I found a home who could take hubby urgently on one occasion and then took hi in again later as they knew him. The third time I had to book him in somewhere else. Eventually he needed permanent care and was accepted by the first home and everyone welcomed him so well it was like being home to him once he'd settled. I would ask if it is now time for permanent care especially as CHC is already in place. I found that our life was so greatly improved once hubby was in permanent care (and I am so much younger too) - our love for each other blossomed again.
My very best wishes to you all - this is an extremely difficult time and decisions to be made.
Best wishes, luv Benjie
My very best wishes to you all - this is an extremely difficult time and decisions to be made.
Best wishes, luv Benjie
Thanks benjie
My father is desperate to keep my mother at home with him and is quite able to do this with my daily support and that of the carers. As my mother is unable to move any more, to communicate, to recognise anyone or anything, or to do anything for herself, it is simply a case of being there for her 24/7 and making sure she is fed, comfortable and not in any pain. I cook for them every day and feed my mother while my father has his lunch and some company to talk to.They are both going to be 90 next birthday and it would be such a dreadful thing to split them up now for the sake of not being able to book respite. We do have one bookable respite bed in our area but the demand for that bed is too great. All the while we were paying for mum's care she had a social worker and I could phone social services and make the booking for the breaks needed throughout the year. When once she started receiving CHC funding however she was given a CPN and removed from the books of social services. They will not now communicate with me but insist on going through the CPN. She in turn is not on the ball and does not book the respite when I have asked. It is frustrating to say the least.
My father is desperate to keep my mother at home with him and is quite able to do this with my daily support and that of the carers. As my mother is unable to move any more, to communicate, to recognise anyone or anything, or to do anything for herself, it is simply a case of being there for her 24/7 and making sure she is fed, comfortable and not in any pain. I cook for them every day and feed my mother while my father has his lunch and some company to talk to.They are both going to be 90 next birthday and it would be such a dreadful thing to split them up now for the sake of not being able to book respite. We do have one bookable respite bed in our area but the demand for that bed is too great. All the while we were paying for mum's care she had a social worker and I could phone social services and make the booking for the breaks needed throughout the year. When once she started receiving CHC funding however she was given a CPN and removed from the books of social services. They will not now communicate with me but insist on going through the CPN. She in turn is not on the ball and does not book the respite when I have asked. It is frustrating to say the least.
Oh Hafod, rocks and hard places feature high on TP, I feel so sorry for you and your family, the system seems to get in our way, whatever we try and do. Would it be possible to book respite privately and pay for it out of mum's funds, that way you gain control of the situation? I go out of my way to circumnavigate the stupidity of care arrangements as often as I can, after all it's my stress I'm trying to alleviate.
My best wishes to you and BIG hugs x
My best wishes to you and BIG hugs x
If the CPN is supposed to do the booking when you request, and is incompetent, you should start going up the chain of command with complaints. All trusts (or whatever they are calling themselves nowadays) have a complaints procedure - I would start using it.
I have emailed the head of mental health services for our county and he has replied to say he will look into it. The CPN is on leave for two weeks so I am not expecting any further response until she returns.
I am new to the respite thing and I am having trouble too! A few weeks ago I phoned the chosen care home about a week in October and they told me they couldn't tell me their availability yet and to ring back nearer to the date - so I did that today and now they are saying there is a waiting list and I am not on it yet! Needless to say I am very frustrated and have contacted the SW to see whether he can help. How can you ever try to plan your year and book a holiday if they can't tell you their availability because "some respite users might extend their stay and we can't just throw them out"?
I think this is an issue which desperately needs addressing (not sure who can do it though).
Mum (90, Ad living with me & OH) has funding for 6 weeks respite a year (to which she has to make a financial contribution) but there is no help from SS to find a care home to take her. As a previous poster has said, the Care Homes prefer to fill their rooms with permanent residents and it's getting harder & harder to find bookable respite.
The one thing that keeps me going and able to cope is knowing that I can have some holidays - but I'm now very reluctant to book any trips away as it just increases the stress if I'm not sure I can find somewhere to take Mum.
Mum (90, Ad living with me & OH) has funding for 6 weeks respite a year (to which she has to make a financial contribution) but there is no help from SS to find a care home to take her. As a previous poster has said, the Care Homes prefer to fill their rooms with permanent residents and it's getting harder & harder to find bookable respite.
The one thing that keeps me going and able to cope is knowing that I can have some holidays - but I'm now very reluctant to book any trips away as it just increases the stress if I'm not sure I can find somewhere to take Mum.
I sympathise, my elderly dad looks after my mum and won't have her in a home permanently, just takes respite, which luckily is well organised on chc in our area.
I would not rely on this person looking into the situation but would ask for a copy of the complaints procedure to be sent to you, make sure they know you are requesting it as that might just speed things up.
Unfortunately making an official complaint is often the only way to get things done within any reasonable time frame, and it sounds as though you are well justified in doing this.
I would not rely on this person looking into the situation but would ask for a copy of the complaints procedure to be sent to you, make sure they know you are requesting it as that might just speed things up.
Unfortunately making an official complaint is often the only way to get things done within any reasonable time frame, and it sounds as though you are well justified in doing this.
