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To think terminally ill DF should be entitled to Continuing Health Care because he's dying

(19 Posts)
postitagain Sat 06-Apr-13 14:50:00

DF probably only has a few more months with us sad

He's in bed most of the time, continence issues, not able to wash himself or feed himself, skin breaking down, and some intense discomfort. AIBU to expect him to have an entitlement to free CHC? He lives with us now.

SSD social worker said she'd been asked to assess him for home care as might not meet the CHC criteria, but vague as to why not. Anyone know anything about CHC ? - lots of info on NHS site, but nothing I'm seeing seems to rule him out from getting CHC IMO. Or is there a magic phrase you have to say to get it? confused

MadamFolly Sat 06-Apr-13 14:56:41

Sorry, don't know anything useful but didn't want to read and run.

Good luck getting the help you need. x

BumpingFuglies Sat 06-Apr-13 15:05:51

Sounds like the SW is covering all bases. Depending on type of care needed, they will probably be determining WHO will provide which services. For example the Primary Care Trust would be responsible for medical care, whereas the Local Authority would probably provide personal care such as help with washing. Sometimes both are involved, depending on the circumstances. Both types of care should be free, as far as I am aware.

Best to talk to the SW again, or to someone who has more details, OP

BumpingFuglies Sat 06-Apr-13 15:06:21

So sorry, what a horrible time for you all thanks

HavingALittleFaithBaby Sat 06-Apr-13 15:10:23

The horrible thing about this is that it purely comes down to who is paying. I would think in the circumstances he would be entitled but the SW can't say for definite that he will because its judged on a case by case basis. Either way, as bumping says he'll be entitled to care. Sorry it's such a difficult time for you thanks

eve34 Sat 06-Apr-13 15:18:58

So sorry that you are in this situation. My understanding is that care is assessed on needs. Some needs can be met by home carers not nursing staff. Chc is about specialised nursing care needs. There are some serious hoops to jump through and is very hard to qualify.

You will get some care I am sure. Although depending of financial situation it maybe chargeable.

lougle Sat 06-Apr-13 15:24:33

The NHS Continuing Healthcare National Framework is here. It might be useful?

maddening Sat 06-Apr-13 15:27:15

also maybe ask a local hospice for advice? They may be able to advise?

Flossiechops Sat 06-Apr-13 15:30:39

Yes I have a lot of dealings with chc assessments being carried out as I'm a district nurse and have to refer a lot of my patients for assessing. It usually comes down to the persons health issues, people who get funding tend to be those who have more health issues than social. Funding has become very tight though and patients that I thought would qualify haven't. Take for example one of my patients who has Parkinson's disease, he is wheelchair bound and requires all care, chc fund his home carers and periods of respite for the partner. I would say given your description of a terminal illness, immobility and pressure sores that he would qualify. Good luck I know it is a very stressful time

notJenkins Sat 06-Apr-13 15:31:39

The social worker will be under intense pressure form their manager to get everyone onto CHC as it means that Social Services no longer have any responsibility for funding these people.
Does he have any district nursing involvement ? The DNs usually take the lead in doing the CHC checklist and then the application if the checklist indicates it is required.
The SW will be chasing it if they feel he will meet the criteria.

MrsBungle Sat 06-Apr-13 15:34:24

Sorry you are all going through this.

When my mum was terminally ill at home we had Local Authority home helps come in a couple of times a day to help with washing and to change the bed. We did everything else like feeding and toileting (when she was able to use the commode).

We also had the district nurses in twice a day (sometimes more) to see to the syringe driver and other medication. Towards the end Marie Curie came at night so we could get some sleep.

The palliative care team at the hospital, the district nurse and the GP organised all of this for us. Ours was all free - although that was in Scotland which might make a difference. They also organised equipment such as the commode, a proper hospital mattress etc.

Hope someone with knowledge about it all is along soon to advise.

bigbluebus Sat 06-Apr-13 15:39:29

Whether or not you get CHC depends on the type of care that you need and whether or not it is primarily a health need rather than a social care need.

DD was assessed for CHC last year using the CHC toolkit. I have tried to find a link to this but the links all seem broken - not sure if this is something to do with the changeover from PCTs to CCGs this month. But that is basically the tool that you need to see how your DFs needs would be assessed.

Each care need is assessed and given a grading according to severity. He would need to score quite highly in a number of areas to get CHC. For example DD is doubly incontinent and requires suppositories adminstered for constipation - but that only scores Medium (with High, Severe and Priority being higher). Skin issues - again DD scored Medium here even though she is completely immobile, can only either sit in wheelchair or lie on one side in bed and has poor circulation, so is very prone to pressure ulcers. Where my DD scores highly is that she is not able to communicate or show understanding, is tube fed, has a complex drug regime which requires careful monitoring and is completely immobile, but at the same time prone to fractures due to brittle bones.
I'm afraid CHC is increasingly difficult to get, as DH works with disabled adults who require full time care, but struggle to get CHC as their condition doesn't include a cognitive impairment/Learning disability alongside their severe physical disabilities.

I would also add that CHC funding also doesn't mean that the person goes into a nursing home. DD lives at home with us. The point at which the person goes into residential nursing care is either when the family can no longer care/cope and/or the cost of care at home exceeds the cost of a full time residential placement.

Is there a Carers Support organisation in your area or a Disability advice service? They will be able to advise on the CHC assessment, if you are not able to find it by Googling. The one I have is headed up Decision Support Tool for NHS Continuing Healthcare.

I am sorry that you are having this added extra stress on top of caring for your DF. I hope that his last few months are as comfortable as possible.

Flossiechops Sat 06-Apr-13 15:44:47

In my area we have Community Health Care Coordinators that carry out the full assessments. As a district nurse we just fill out a check list and fax it.

iseenodust Sat 06-Apr-13 15:52:39

Copy of checklist, scroll down to p9 for criteria.

It's difficult because it's all down to limited pots of money and shuffling who is responsible <cynic here>. As a lay person I would suggest the line is would they have to be admitted to a hospital ward and stay a long time? (because it is about health not care requirements).

iseenodust Sat 06-Apr-13 15:54:35

Sorry meant to say he should not be suffering intense discomfort. Speak to his GP or hospital consultant about that.

lookoveryourshouldernow Sat 06-Apr-13 16:56:38


Try posting in/reading this forum which specialises in CHC - useful documents to read on how the frameworks (or not)... Health Care Forum

Letitsnow9 Sat 06-Apr-13 18:09:23

We are having the same problem with a dying relative who they think is 'better' as she currently doesn't have an open wound despite a hundred and one more complications than when she went onto continuing care

Letitsnow9 Sat 06-Apr-13 18:09:47

Thank you look over your shoulder for the link

ChoudeBruxelles Sat 06-Apr-13 19:17:56

It's shit isn't it. My mum only got CHC last week in the final few weeks of her life - when she really wasn't able to do anything herself and was on subcutaneous morphine.

You can get partial CHC though so some costs are covered by the NHS.

Have you had a carers assessment? you can also apply for a carers grant from your local authority.

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