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-and-advice/all-about-caring/chc-coughlan-grogan-judgements-nhs-contuing-healthcare-nhs-fnc-hospital-discharges-all-under-this-one-thread-35998
Sections colour coded … the following is highly relevant here :
CHC : APPLIED FOR BUT REFUSED ?
( 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-and-advice/all-about-caring/home-care-services-a-guide-from-the-money-advice-service-web-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 ?
https://www.musculardystrophyuk.org/
No online community but a wealth of information ?
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.