Anyone with CHC?

[DaysofHoney]

Evening everyone,

Ive recently come across NHS conscious health care and thing my dad should be eligible. In a nutshell he’s gone from being an independent 75 year old to a shadow of himself in six months due to stage 4 (not terminal) cancer of the jaw and sinus.

Following major surgery and six weeks if radiotherapy he is now:

• solely tube fed
• unable to open his mouth
• Unable to communicate verbally
• half the pre surgery weight (or less)
• exceptionally frail and immobile
• incontinent
• completely unsafe in his home as he lives alone and is having frequent falls (hospitalised every time)

I have looked at the criteria for CHC and think dad should be eligible, given all these care needs are health and medical related.

Does anyone have CHC and can you talk me through the process?

TIA

Edit *continuous health care

Do district nurses visit? They can assess and complete the paperwork if so, definitely worth asking them.

CFC eligibility is for very high levels of skilled health/nursing care, and in most areas the budget for chc is massively overspent. Have you done the checklist? https://www.gov.uk/government/publications/nhs-continuing-healthcare-checklist

i wouldn’t pin your hopes too high.

I went through the process with a relative in a nursing home recently. The first stage involved a 'checklist assessment' done by a social worker, with my elderly relative, me and another family member and a nurse from the nursing home. My relative 'passed' this stage which led to the second stage. The second meeting about a month later involved my relative, the social worker and nurse assessor, with a nursing home nurse and me and another family member. Each meeting took about one hour. I prepared thoroughly by getting copies of the documents and deciding how I thought my relative should be graded for each criteria. I asked for my relative's care plan from the nursing home before the meetings, and also their list of medications. I believe the nurse assessor had automatic access to the NHS records. In the event my relative did not meet the criteria for CHC funding, but did meet the requirements for nursing funding, the payments went to the nursing home directly, but the amount was tiny compared with the monthly fees of £7k.

Does he have a package of care (i e. Homecare)? He sounds like he needs it to remains safely at home. Does he have an allocated social worker? If not contact your local council and ask for a social worker assessment to ensure his care and support needs are met.
CHC is paid when health needs outweighs social care need. It is a two stage assessment process.
As previous poster has stated, the ditrict nurse will do the initial checklist, this is assessed by your local CHC team if this is agreed there will be a further full assessment also completed by the DN.
Ensure you are familiar with the form and criteria and present at assessments. Often nurses complete them without family involvement which is wrong.
It is extremely difficult to get the funding unfortunately.

I downloaded a copy of the form and filled it in myself. I was pretty au fait with terminology and how things were going by that stage. I took it along to the meeting with one of the assessment social workers and she was happy to compare notes and see if my judgements were similar. Didn't mean that it got me ( my mum) preferential treatment but it helped me understand the process and how each area was weighted.

I also had specialist legal advice and that was worth every penny. My mum did get awarded CHC at panel as her needs were so complex but it wasn't a foregone conclusion. We weren't told about CHC by any of the MD team and no pre assessment was made until we asked for one. They seemed a bit shocked that we knew about it.
This was 8 years ago so they've probably made it even harder now, but do persevere and don't be put off by people telling you it won't be awarded.

My Mum got it. She had bowel cancer, copd, Crohn’s disease and some mental health issues. She was 70. She managed at home with carers 4 times a day for a few weeks but it quickly became apparent she needed a hospice / nursing home. I am disabled myself, she was abusive to me so we didn’t have a good relationship and I also have a disabled Ds so had to really hammer home that I wouldn’t be stepping in. The community health care team sorted it for us. I just refused to get involved really. She got a fully funded place in a complex needs nursing home (she owned her own home outright).

Mum didn't get it.
She couldn't walk, talk or eat. So couldn't dress or bathe herself.
Needed a brace to hold her up in a wheelchair.
Reason she didn't get it 'too Ill for the assessment'

Out of interest @Worryabouteverything who decided she was ' too ill for the assessment '? That's bizarre to put it mildly. Did you contest it? On the face of it, that sounds like you were being fobbed off so that you'd go away.

@softlyfallsthesnow if a Dr agrees that someone is so unwell they are likely to pass away in the next 6months they can be fast tracked and don’t have to undergo the full assessment. I’ve never heard of ‘too ill for the assessment’ so denied CHC but do know that you can be ‘too ill for the full assessment’ and therefore fast tracked…

Sorry to hear of your dads health struggles.

just been through the whole CHC process it took 6 weeks from checklist to decision.

We have been awarded CHC for my mum. The key element to funding is unpredictably and complexity of needs. There are 12 health domains and each one is assessed and discussed. You need to score on several domains and score high or severe on three (just going off memory - so just check the scoring criteria).

absolutely do your preparation on every domain. Work out which ones are going to get you the high scores.

Print your own Assessment Prompts for Completing a Decision Support Tool (DST) and make your own notes as family’s input is noted. The nurse assessor is basically the gate keeper of the money they will do a very thorough assessment and meet your dad. The SW (in our case absolutely shocking, didn’t even know my mum’s name) are meant to be ‘on your side’ and should be a good resource but do not bet on this. Get every bit of information you can from everyone who has input.

I was dreading the meeting it was 2 hours and intense but it was ok purely because we had prepared and corrected many inaccurate facts.

All the best OP

@softlyfallsthesnow mum died 1 week later.
She had passed the first stage.
Then at the next meeting there was a nurse,
social worker and person from the chc dept.
To be honest it was a joke. Every question I had to force
them to admit mum couldn't walk etc. Got to question 5 and
that's when they decided mum was to ill.
Her dementia was bad didn't know who anyone was,
didn't know where she was and had forgotten how to eat/drink.
I was to stressed to argue further the nurse was on my side
and did try to put mums problems more forcebly but was ignored.
Social worker was just there. It was the person from CHC who
insisted that mum would get better with physio. Then when she
wasn't getting her own way stopped the meeting.
Came out of that meeting and even the care home manager was
shocked. She wanted me to appeal as even after mum died she
said it could have been backdated.
Mum had been in that nursing home from the June after being discharged from
hospital. She had a fall in the residential home fracture her hip, the hospital didn't
give any physio and mum I think gave up.

Been through it with both parents (both of whom got it).

With Dad, he had dementia, sister and I prepped our answers against the guidance, knowing which categories we needed to emphasise - and we gave mum the heads up in terms of examples. I can't remember the process but it was awarded and he moved into a care home within about 3 or 4 weeks of the meeting.

With Mum, I requested fast track CHC assessment on a Friday, GP visited and agreed it was needed on the Monday, care in place by the Wednesday or Thursday. Unfortunately needed for less than a week, but once the process started I can't fault it too much.

It may be a quirk of where my parents lived (not a wealthy area though), but both assessments were worlds away from what I read on here.

@Worryabouteverything That's an awful story and I'm sorry you - and your mum - had to go through it. I know you can backdate the claim but I get how stressful the whole situation was for you. Sometimes you just want to close the door on a grim chapter in your life rather than endlessly rehearsing it. I get that all too well.
The inconsistency in the assessments is concerning at best.

Thanks so much to everyone who has shared their experience - appreciate it’s not easy reliving these exceptionally tough times. I’m absolutely going to try and take on all the advice about being well prepared - thank you.