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Continued Health Care - Carers UK Forum

Continued Health Care

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Hi, I’m new to carersuk, I’m a carer for my son who has Duchenne Muscular Dystrophy. He recently stopped going to school as he is 19. We are currently receiving no respite and I’m having to care for him more or less by myself although family obviously help out as well. We went through the process of getting continued health care (no mean feat!) but was offered residential care in a home for the elderly. This isn’t appropriate or acceptable so we declined. I feel that the whole invasive and harrowing process of getting continued health care is far too difficult so have felt unable to reapply. We might have to rethink that decision but for the moment I’m coping very well, the house is fully adapted so I’m not pulling any muscles however it is early days (he left school last July). Although as a result of all this I have to say I feel totally let down, we’ve gone from him going to school everyday and respite every 3rd week end to nothing! It would be nice to hear if anyone else is in the same boat. 🙂
Hi Ali,
Welcome to the forum. As your son has been awarded CHC, go back to them, remind them of the POINTON OR POYNTON CASE (can't remember the spelling). Mrs. P had a battle with CHC, subject to a Panorama programme, so that she could get care at home for her husband.
Hi Multitask ... welcome to an extremely quiet forum as I type.

Purely on the CHC / NHS Continuing Healthcare side ... main thread :

https://www.carersuk.org/forum/support- ... read-35998

Sections colour coded ... the following is highly relevant here :


( Pointon ? If needed ... same thread : POINTON CASE : CARE AT HOME )

AGE UK ... on their radar ?


Outside support ? A guide to what's available out there :

https://www.carersuk.org/forum/support- ... site-37984

Others will be along to extend their welcomes and probably , probe deeper into your current situation.
Thank you for your reply. Now this is , I feel going to be controversial, however I don’t want carers coming into my house, this has been discussed but as I’m not allowed to leave the house when carers are here I feel that all I would be getting is a very dislocating chaotic and largely interfering service which isn’t what I had in paediatric services or had asked for when applying for ChC.🙂
In which case , ignore " Pointon " but peruse the " Refusal first time " link.

If ever approved , the choice of a residential home is down to the NHS , under CHC , and you.

( Possible post code lottery ... suitable accomodation available locally ? )

For once , the cost element should NOT enter the equation.
Also I feel I should add and clarify that my son is considerably unwell, he has to rely on a bi-pap machine as more or less a ventilator. Consequently CHC are only prepared to provide a nurse or someone with similar credentials as a carer, hence why I’m not allowed to leave him on his own with the said carer. And why a nursing home for the elderly are the only places where such “nurses/carers” are located. His prognosis is rubbish which has resulted in my want to ensure his quality of life. In my area local hospices don’t do respite and the homes that provide day care for his age group are deemed not capable in his situation. Am I the only one in this predicament? Hope not!! 😶
Have you been told that you are not allowed to leave the house by those administering CHC?
They should be ensuring that whoever supports him is suitably qualified.
Yes unfortunately I had previously met and discussed with what seems to be the only care suppliers that CHC use in this area and not only this company but the actual lady that came out to see my son turned white and categorically wanted me to remain nearby in case of emergencies. My son is regularly prone to pneumonia and hospital admittances. We tend to be on first name basis with intensive care! I think as you can probably tell I’ve resigned myself to the situation however am hoping to gain support from other carers in the same boat. I am optimistic that this is the right thing to do but feel that I’m somewhat obscure, people I meet are very bemused and perhaps feel I’ve missed a trick. 🙂
Is there a hospice near you? I'm NOT suggesting your son is admitted, but in my area they also have what they call something like "Hospice at Home" which I'm sure uses qualified medical staff. I cannot understand why CHC are not using qualified staff, if anything did go wrong, then you could sue them for negligence, but obviously that's not what you want.
I trust that your son is on the radar of the Muscular Dystrophy Association ?


No online community but a wealth of information ?