I have previously posted regarding CHC funding, our experience and the decision provided which was a small contribution for funded nursing care.
My mum is dad’s full time career at home. It is dad’s preference to remain at home. Mum is not young and struggling. We have double up carers attending to my dad three times a day and they started from Monday this week - following a hospital admission on Sunday.
Since the CHC assessment his needs have progressed to a point where he can no longer take those small steps to the toilet and is fully bedbound. He makes attempts to get up but fails. His legs have gone.
The issue we have is;
1. He always needs to poo. He has been doing it in his continent pads. Mum cannot cope or clean him and ends up shouting and screaming.
2. He seems to always do it when carers go so poor mum has to deal with it.
3, Dad now hasn’t been eating or drinking since returning from hospital as he is scared to poo and mum shouting. This is making his more weak.
4. Carers are so quick to leave as soon as they arrive - they don’t give dad time to do his business therefore mum has to make go ok her own. She can’t do it which leaves dad exposed
I am planning to appeal the CHC decision but should I do it based on the changes to his condition as that is a new progression of the disease and is it even worth appealing? They knew dad is cared for at home so why they have made a decision knowing he won’t exercise the nursing funding is so frustrating.
I dont know what to do here so any advice from this amazing group is appreciated
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Khalissi
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Hi I am sorry to hear this. I have no experience of challenging a chc decision but could I suggest you call the pspa helpline as I think they could advise whether you should appeal or make a new application. To help if you haven't got any health professional involved as as you indicated on a previous post could you go and see the gp, ask about bowel and bladder team support, OT assessment and physio visit as a matter of urgency as they can help with some of the symptoms, equipment provision etc. If appealing or reapplying prepare a document listing all issues against the 12 domains in the dst assessment tool - note specific examples of issues that have taken place issues with choking, food - not being able to eat, weight loss, falls, bowel issues, psychological impact etc etc and try and show a decline over last 3 months. It's worth looking on the Beacon website as they have lots of info about the assessment, how to evidence and info on the process of appealing and reapplying Also on the care to be Different website. Wishing you much luck
I'm so sorry to hear of the situation. It is a cruel and relentless disease.
I would suggest that in looking at your options also include the question of whether the nursing home is the most appropriate option and can provide the most comfort for both your Dad and your Mum. It is extremely important to listen to the patients wishes but also if the nursing is the kindest decision for your Mum's health and your Dad's care, there is no shame in choosing this option.
Thank you. The issue unfortunately is they can’t afford the nursing home costs without selling their home which if they do where will my mum stay, but it’s a discussion we as a family need to have as this cannot continue.
Have they had a social care assessment? If they are determined to meet the criteria financially they may not need to sell their home as your mum is there. If they have capital e.g savings and pensions then that will be considered towards the cost of a home.
If they think it should be funded by CHC they will also support the application/appeal which may help?
Please cantact your GP/Community Nurses and ask them to get the CHC funding upped as he has deteriorated.
We had ours increased, it came through in days and was backdated. Sadly it coincided with my husband's death.
If your father is no longer eating and passing motions, then it may be that he is in his final stages and he will need the community nurses in to care for him. They will come in several times a day to ensure he is comfortable. If he does have to go into a nursing home, this will be funded without having to sell any property. So please do not worry.
Hi Khalisdi if he gets CHC finding they are responsible to pay all the costs not your mum. Please call your GP ask for a home visit. Your dad needs assessing. We have a Community matron she comes out when we need her she makes all the referrals and supports us with CHC.
Hi I’m sorry to hear about your dad. This sounds like my husband, I cared for him for over two years but then early this year he just got too much for me. We had two carers coming in on a morning to shower and dress him but as you said they want to get away as fast as they can. I was particularly struggling with him needing to poo often and cleaning him up was very hard work. He also needed to use his urinal bottle many times in the night so I got little sleep.
In the end I just couldn’t cope and he is now in a care home which is very nice.
We applied for CHC funding but he was refused, but we were told that he would probably qualify at a later date. So I am keeping an eye on that.
My heart goes out to you. A difficult situation but so familiar with many of us, I think.I am my husband's carer and managed to look after him for 2 years until a month ago when he stopped walking and he has been in bed since. Fortunately we now have morning and evening carers which has relieved the situation somewhat, but as you say they don't stay long and then you are on your own.
Your father will not be able to poo to order. It'll come when it comes. My husband doesn't know when he's done it. Like your Mum I would get annoyed with him because it usually happened at bed time when I was tired and ready for sleep. And even though you know it's not their fault and they hate the situation as much as you, it is what it is and you have to get on and sort it.
Your Mum sounds as if she's at the end of her tether. Try to explain to her that shouting is only making the situation worse. He's stressed and her blood pressure is going up. I've had to calm myself and give in to it. It's better all round. Not easy though.
As far as CHC is concerned I can't help you. I don't even know what it is ! We moved from the UK 20 years ago.
But I do know that those who have replied have given you excellent advice. I sincerely hope that the situation resolves positively for you all.
I have been through what you are trying to achieve. My wife has CBS. I originally applied for CHC for my wife some time ago which was turned down and funded nursing care was offered if she was to go into a nursing home. After about 6 months it became obvious that things had deteriorated so with the support of our Social worker we applied for an RPAN which is Review of Previously Assessed Needs, you need to apply for this. It is then important to make sure you state that because of deterioration in various areas it is having an impact on Mobility, Continence, Drug Therapies and Psychological and Emotional needs. The interactions between care needs across several domains should be noted. The condition is unpredictable which requires increased monitoring. We also had advocacy from several professional people i.e. Occupation Therapist, Physio Therapist and Neurological Coordinator you need as many advocates as you can muster to support your case.
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