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Continued Health Care - Page 2 - Carers UK Forum

Continued Health Care

Tell us a bit about yourself here.
Yes we’re known to Duchenne Muscular Dystrophy and just yesterday had a meeting with neuromuscular representative who was perplexed. CHC Maintain that the nursing home would be the only option. It comes down to cost, care suppliers don’t keep registered nurses on their books or at least that’s what I’m being told. Also carers are busy, I don’t have the time to continually battle over what would equate to maybe 2 years of having respite. Respite being that I get a complete break and not listening to carers through a wall whilst I tootle around waiting for them to go, it’s not respite.😶
That is definitely not respite! In fact, you are now a virtual prisoner if you can't getr reliable staff. Please think about my Hospice at Home suggestion, because DMD is sadly a "life limiting illness" and should come under their remit.
Yes I’m taking on board your advice, for which I thank you. The local hospice have been in touch and I have been to visit in fact. They are keeping him on their books but in their words he’s just on the periphery of being well before they can help, however I don’t think they give care as in sitting with him, but it’s more about pain relief and palliative care advice. They are there though and even sent the district matron around so you know I’m on it! We do go out on a good day, a quick shopping spree at Asda - it’s amazing how a wheelchair can disperse a crowded aisle! 🙂
If CHC has been awarded, then my understanding is that either
you accept the home they offer you - and it MUST meet his needs OR
You have the option of a personal budget, the eqivalent of what the home would cost, which you can then use to employ someone on his behalf.
You could personally choose a qualified nurse, and insist that CHC pay for a "Fund Manager" responsible for all paperwork, as you are busy enough anyhow.
Was this option offered to you?
Hi multitask.Ali
For a long time we had an active poster called Eun who's son had the same condition and the same battles, albeit in Scotland. She hasnt posted much sincee he passed away but you may find her posts useful.Hoping they are useful and not too distressing
I'd suggest starting from the early ones as they get sadder as his condition deteriorates

Thanks for your posts. No CHC didn’t offer personal budget so that’s an option.

Will check out posts of Eun at some time. (not sure I’m ready for that just yet)!

If they are offering a nursing home placement, in my area (New Forest) that would cost £1,000+ per week, which would buy an awful lot of nurse hours.
There should be some sort of nurse agency covering your area, before you ask for a Personal Budget, I would enquire about how much they charge for day, evening, and night care.
It might be most cost effective for you to have someone cover the day care some days a week, so you can catch up on sleep or go out, then you can do nights, or vice versa.

I imagine it would take a long time getting to know someone before you could trust them to care for longer periods.
My neigbour is a qualified nurse, I know how difficult working shift work in a hospital can be, especially if you have children to care for.
A regular day job is surely most nurse's dream?
Well thank you for your reply, it is something I’ll bear in mind.