Continuing Healthcare advice

Living with Parkinson's Carers, friends and family
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Hi I was hoping for some advice around the NHS Continuing Healthcare provision as I seem to go down endless rabbit holes researching it myself.

My mum has Stage 5 Parkinsons - she has been in a wheelchair for 4 years, has a catheter and has been cared for by my wonderful Dad at home. It has been challenging for him but they’ve been happy with the routine they’ve created (turntable for assisting moving, slippy sheets on bed, raising chair etc) all with no additional assistance from anyone :roll_eyes:

However mum got an infection in her leg 3 weeks ago (she apparently went like a statue) and has been in hospital since then. The hospital wouldn’t release her till care package fully in place at home (whatever that means as they’ve said things like that before but then left dad to it) But now mum is saying she thinks she should go into a home.

My Dad was upset by this decision but is coming round to it but looking at the costs of care homes is truly terrifying.

They own their own home in Devon and mums individual savings are about £24,000 but don’t want Dad to lose the house in trying to pay for care.

Added complications is that my brother and I both live in Hampshire so would prefer if he could sell up and buy something down our way (& mum to go to a care home near us) but are worried about the financial implications.

Does anyone know about NHS Continuing Healthcare cost’s eligibility and what sort of funding could be provided.

My Dad is understandably very stressed at the moment (he’s been doing a 6 hour round trip to the hospital every day for the last 16 days) and is pingponging about best course of action.

Any advice would be gratefully received.

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Hi, EmmaSpring. Welcome back to the forum!

I’m so sorry to hear that your family is going through such a difficult time, and I can understand how overwhelming this situation must be.

We have a page dedicated to information about the NHS Continuing Healthcare (CHC) which you will hopefully find useful.

It’s also worth discussing your mum’s care needs with her medical team. They can offer support in navigating the process, and if your mum qualifies for CHC, this could help alleviate some of the financial pressure.

Additionally, our free helpline can give you some specific guidance on the options available for your mum and dad. You can reach our trained advisers at 0808 800 0303 (between 9am and 6pm Monday to Friday, and 10am and 1pm on Saturdays)

I know this is a lot to manage, but it’s great that you’re reaching out for advice. Hopefully, your family will find the support and peace of mind you need during this challenging time :blue_heart:

Parkinson’s UK Moderation Team

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Hello there! CHC is notoriously difficult to get and you really have to show that they need medical & specialist nursing support. Additionally, it’s my understanding that they don’t do the CHC assessment in hospital but in the nursing home or their own home.

Here is government guidance with additional checklists… you can see that you have to have high scores in a range of domains to qualify. NHS continuing healthcare decision support tool guidance - GOV.UK

However, your mother will qualify for social services funded care once her savings are under £23,000. As it’s only £24,000, they could do a finanical assessment now and agree this I would think?

Their house will be disregarded or not included in the financial assessments as your father still lives there. Sometimes social workers imply this isn’t the case but they often are unaware of this important guidance which was set to ensure that the partner who doesn’t not have to go into a home ever goes homeless. The financial staff at the council should do so.

If your father sells and moves and the new home is also in her name, the only thing that social services could claim is 50% of any profit over and above what is spent on a new house.

The problem I can see is timescales - selling and buying will take at least 6months and I assume your mother would need to be discharged before then. It then becomes complicated when she is meant to transfer to a new nursing home - which local authority would pick up the tab is an issue?

Another issue is that social services really, really, really prefer to provide care in the home before they consider paying for residential care… usually they offer you the standard 4 visits a day package… at breakfast, lunch, dinner and then bedtime. This could actually work if your parents have been managing on their own and give your dad a break - the issue is that in between times of course he would need to do everything like loo and commode etc. But sometimes, it can really help and he can also do something called direct payments if he would prefer to pay private carers directly - they would give him the funds and then he pays for them.

Upon discharge from hopsital, the NHS should fund 6 weeks or so care in the nursing home (note: be sure to get her into a nursing home rather than just a care home - this will help case for CHC funding). Additionally, work with the hospital social worker to ensure that the nursing home that she goes into will accept Social services funded residents - sometimes they don’t and then you have to get her transferred again.

There is a very good facebook page called Safeguarding our futures which is all about the funding of social care. It’s run by two specialists in this area but there are about 20,000 users all who pose similar questions to yours.

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Thank you so much. I will give the helpline a call tomorrow. Im not sure what you mean by her medical team as they never really see the same person and it’s only when she gets admitted to hospital that they get any assistance. We’ve got a lot of research to do.

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Thank you so much for taking the trouble to reply. I’m actually in Devon this weekend, visiting mum in hospital and trying to keep my Dad calm.
Having seen my mum yesterday I don’t think living at home is a possibility. Her Parkinson’s seem to have accelerated since I saw her 3 weeks ago. The nurses can’t get her on the commode anymore as she can’t support herself at all - they just let her go in her incontinence pants and clean up afterwards (not a criticism of the nurses, they really are doing the best they can)
They have to use a full hoist to move her from bed to chair.
My lovely mum is not complaining though and fully with it - it’s just like she’s operating in extreme slow motion now - her speech is very quiet and very slow. One of her eyes keeps closing for periods of time. She can’t itch her own foot (she’s not been able to do that for a while though) But now she can’t fully use both hands so can’t blow her nose, feed herself etc.

Mum is being a champion but it’s so difficult for Dad, who is finding it difficult sleeping with the worry. Thats why it’s all the more important for me to try and find out if they would be eligible for financial support, to at least ease some of the worry.

I will look into your suggestions when I get home tomorrow.

Thanks again x

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Yes, it sounds very, very, stressful for you all A couple things to remember. It would be unlikely although not unheard of for someone to experience such as rapid detoriation solely due to Parkinson’s In hospital, people often deteroriate rapidly on a temporary basis for a number of reasons including hospital delirium. It could also be that they are not administering her Parkinson’s meds on time which could result in alot of what you describe. Operating on extreme slow motion seems like she might be in a longer ‘off’ period due to meds not be administered properly. Many times staff on the wards are just not informed properly about this. Unfortunately, hopsital is often the worse place for someone like PD. But it can’t be helped particularly when an infection sets in.

Also, at stage five or the last stage of Parkinson’s, infection can have a profound impact. One thing I would suggest is finding out about support from palliative care… this doesn’t mean she is at the end of life! Palliative care can be accessed by anyone with Parkinson’s at any time. Myself and my husband get support as outpatients from the local hospice. It means that there is someone who will support your dad as well as your mom and palliative care team can advocate and signpost to support for reversible conditions like infections. I also would gently suggest that at this stage, a big move across counties might prove to be stressful for your dad and your mum?

The best person to talk to in the hospital will be the hospital social worker about a nursing home place.

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