Hi, I’m new here. I’ve been caring for my Dad for the last 4 years.
My mum passed away from cancer in 2016 and as my Dad suffers from COPD (and he had pneumonia at the time of my mum’s death) I moved into their house to care for him. Dad is now end-stage COPD, with heart failure and is palliative but his dementia is getting worse and it’s becoming more and more difficult to care for him at home. He’s strong and a fighter, he’s battled his way back from the brink a few times and I feel he could go on for a good year or two yet.
I work part-time and have two children. We have paid carers coming in 3 times a day but only to help with body washes and pad changes as Dad is double incontinent.
It’s getting to the point where I feel a nursing home might be the best option. I’ve spoken to our local council who seem to think Dad’s house might not be taken into consideration when they do the finance assessment because I live there with his grandkids and moved in to provide care for Dad. Has anyone else any experience of this please? I don’t want to lose the house. Dad does have savings of around £28k so would be able to self-fund for awhile. I’m nervous about starting the process in case they say we have to sell the house, I don’t mind about the money.
Also I’m not sure my Dad will agree to going into a nursing home, but as he is lacking mental capacity am I still able to make the decision alongside say a social worker or health care adviser? The district nurse who visits weekly agrees a nursing home would be a good idea.
Hello Elisabeth, welcome to the forum.
Sorry to hear about the situation with your Dad, it sounds like you have a lot to deal with and think about. I’m sure there are others on here in a similar situation who can relate to this and will be along to offer support.
Meanwhile you could contact our advice line and find out what assistance you and your Dad might be entitled to and how to access that. You can contact them on 0808 808 7777 from Monday to Friday, 9am – 6pm or by email at advice@carersuk.org
Best wishes
Jane
Google “charging for residential care” to find out more about the rules, councils don’t always tell you the truth. I reclaimed £8,000 for my mum when they didn’t apply the rules. Then ask your council for a decision IN WRITING so you can plan your future.
Also look at the NHS Continuing Healthcare Framework". IF dad qualifies, care would be free! It’s a postcode lottery though. Have you been offered respite care?
Thank you so much for the info.
We were offered 6 weeks part-funded respite care last year and had planned to book Dad in a nursing home for a week in April so we could have a few days break but then of course Covid19 happened 
I’ll definitely ask for any council decisions in writing, most of the advice I’ve had so far from them has been either inaccurate or confusing. I had an email from the council Social Care Funding Team stating that the value of Dad’s house wouldn’t be taken into account should he move into residental care if I can prove I’ve lived there and paid the bills etc since 2016 (I have) but when I rang them to confirm it, the lady said that each case would have to be looked into so nothing is definite. She said my circumstances sounded like they wouldn’t consider the house but that’s not exactly concrete.
Dad had his first review for CHC in October last year, which is when we were offered the respite, but he’s been in hospital twice since then and his needs have changed so hopefully I can get them to come out and review him again.
I’m not sure what the criteria is to qualify for fully funded continuing health care, like you said, it does seem a bit of a lottery. Dad is bedridden, palliative with end-stage COPD/heart failure, on oxygen, double incontinent and his dementia is advancing to the point where he is constantly confused and having hallucinations…he probably still won’t qualify for full funding but I will chase up a review.
Definitely ask for a review, in writing, sent Special Delivery, to the CCCG, not Social Services.
You might like to copy it to Social Services though.
The “Framework” outlines how you qualify - do your own scoring and then make sure the assessor goes through all his ailments, and explains their decision whilst still at your place so you can talk through any disagreements.
Ask the GP to give you some idea of how long dad has left. If they won’t tell you, then find someone who can, maybe a charity that specialises in lung conditions?
Thank you, I’m going to do that. It definitely makes sense to have a review to see if Dad qualifies for full funding before going down the path of sorting a finance assessment.
The council know CHC assessments should be done before their financial assessments, but sometimes “forget”!
I managed to get in touch with my local Clinical Commissioning Group. Not good news as unfortunately at this present time NHS England have suspended all CHC functions, and since the 19th March 2020 they have been unable to complete any Decision Support Tools (DST).
The nurse who contacted me in April in relation to my Dad’s care review, identified the need for a DST but it could not be completed at the time due to Covid-19.
NHS England have not identified when they will be able to recommence the service.
The only option is if my Dad’s GP or District Nurse are able to refer for end of life care by completing a Fast track tool.
I think that means I’ll have to wait until the service is available again as although my Dad is palliative he’s not end of life right now.
I didn’t realise that. However, as I’ve had my hairdresser visit me at home, and today my beautician, both wearing PPE, I really don’t see why desperately ill people cannot have a CHC Assessment???
It’s crazy isn’t it? The whole process can take months so it’s not like we’re looking to put Dad in a nursing home right now in the middle of a pandemic. We just want to know where we stand. Thank you for your help and advice though. I really do appreciate it, the situation with Dad has been really getting me down lately.
You might want to also visit the ageuk (https://www.ageuk.org.uk) website as there are lots of documents and tips you can download and study.
Its been a great source of information for me whilst trying to sort out care problems.
Good Luck.
Thank you, Age UK do have some really good information.