Options for Chris.

[Suefromwakey]

Thanks Mary, we have decided to wait until his next MDT meeting, mind you that's also an issue - he was told he would be seen every 12 weeks for a MDT meeting, we are now at week 16 and in my head have written it off until New Year, even though its difficult getting him ready and everything that goes with it I want him to be seen

We have no community nurse never been offered - how does that particular wheel materialise? I thought it might come via the MDT team or perhaps the GP?

Sue

[Mary C]

Hi Suefromwakey
Thats awful you haven’t heard from the hospice in 14 weeks!,!

It may be worth you getting on the case after the weekend and contacting the hospice to check if they received the referral and from whom.

Ask if they plan a home visit as Albert is deteriorating and you are struggling emotionally and physically.
Try and get a name and a plan of action.( get email address and direct dial etc)

If this can’t be given at the point you ring suggest you will call back the next day as 14 weeks has changed so many things for you both.
Is there a community nurse involved? Who can chase this up…the more people chase ithe referral it may raise Alberts profile.

Really hope you get support soon from the hospice

Best wishes
Maryx

[Suefromwakey]

Hello Music mans wife, I shall be interested to see how this pans out for you both, not yet having the Hospice bother to contact Albert, and he was referred 14 weeks ago, can you tell me why they declined Chris? did they envisage that he'd be with them too long? - Cynic speak

Sue

[Mary C]

Music man's wife
just wondering if your husband is still in the hospice, returned home or moved on to a nursing home.?You sounded so fed up last time you posted on this subject.
Best wishes
Mary

[Mary C]

Music man’s wife

So pleased to hear Chris may get home eventually.I have been wondering how you both are after feeling like a nursing home was the only option.

Did Chris get turned down for specific reasons?.Maybe CHC might take some notice ?..or get cracking on an appeal process maybe?depending on the outcome.

As LindaB and I know from previous work life experience that nursing homes don’t provide one to one twenty four hours a day.
It might be that you get some CHC funded carers and self funded carers or if eligible some joint funding from CHC and Social services .

Dont give up .It’s so important that Chris gets back home if that’s his wish.
Good luck
Mary x

[Ellie]

So care at home is back on the table, Chris is very pleased.

And you? You're important too 😏😘

[LindaB]

Sounds like a win for care at home - well done!! I bet you were very well behaved😇

[Music man's wife]

We met with a couple of people from the nursing home yesterday, today they contacted the hospice and have declined to take him.
So care at home is back on the table, Chris is very pleased.
In case you are wondering we were very well behaved with the nursing home representatives!

[Graham]

Linda is correct but following Brexit, it is very hard to find carers. If you have any 20yo/30yo friends, try Facebook. It seems to have replaced Indeed.

[Ellie]

Rooting for you Music man's wife 🤞🤞 xx

[Music man's wife]

Thank you both for taking the time to post very useful information.
I've spoken to CHC and the CCG for good measure. Also after phoning the MNDA helpline they have put me in touch with our local representative who is very on the ball. I think she'll certainly ensure everything is as it should be.
Will update when we find out more.

[LindaB]

Music man's wife no one can force anyone to go into a nursing home. We can all choose to be at home with care and support. Just as long as we can understand any risk to being at home - we have the mental capacity to make that choice.
I will add that it's very easy for professionals to say someone needs 24 hr care...in reality no one gets 24 hr care. Even in a nursing home you will have your needs met but highly unlikely to equate to 24 hours. I'd ask to see that broken down into clear interventions needed.
As Mary says there is no 'ceiling' regarding funding from CHC. Seek out an advocate as soon as possible.
Good luck

[Music man's wife]

Thanks Mary, you've raised some excellent points. Will get back to you.

[Mary C]

Good morning,
you can appeal CHC decision.Were you or Chris involved in the CHC process.?You really need to know why CHC turned his funding down …they can’t just say they won’t fund 24 hour care .The CHC does fund 24 hour care if the person meets the criteria.
I recall Chris needed 24 hour ventilation too.

In terms of a nursing home which Chris doesn’t want ..who would fund that?.

Could the palliative care team, district nurses offer some support if Chris goes home?Along with either social services funded care or private care.
Sometimes CHC will jointly fund care packages.



It’s complex …you need clear information about why Chris doesn’t qualify in writing and if you want to appeal you need to do so asap .With MND time is not on our side for a lengthy battle.

There are company’s on google that will take on such issues.( ie Compass based in Birmingham)

In the interim , the issue is what are Chris’s rights in terms of refusing a nursing home placement ?I don’t know the answer to that.

Hope Chris gets the ongoing care he needs.
Best wishes
Mary

[Music man's wife]

Chris is in the hospice and has been there for 4 weeks. He really wants to come home. The professionals say he needs care from 2 carers 24 hours a day. Two issues there, CHC won't fund this level of care, we can't find carers no matter what we do.
After a lot of searching they have found a nursing home that will take him, he doesn't want to go.
Is that it? Hobson choice?

All I can be as the wife is an advocate for Chris.