parents at wits end

Tell us a bit about yourself here.
hi,we are both full time carers due to having to children with disabilities,our eldest has down syndrome and our youngest has a extremly rare chromosome disorder and not even great ormand street having any information on his is 24/7 for us with our youngest let alone our eldest and we have a normal 3 year old aswell.we are physically and mentally drained.and to top it all of our youngest cannot get any treatment or care under nhs cause of the unknown with his condition.weve had so much hell to go througgh for 20 months.ive asked social services time and time again for some care in or respite for my youngest.and no nothing we get no help whatso ever.i mean our youngest has had feeding problems since the day he was born and now hes being left not feeding hardly anything and loosing weight.and his head is small 2 but no consultant cause apparently there isnt anyone experianced to take him on
The fact that your son's disorder is sufficiently rare to result in no-one having expertise in it is surely not grounds for not treating the symptoms which arise from it unless there are good grounds not to, for example, the feeding and nutritional problems which are common to many conditions, equally it should not prevent you accessing services which would assist you in meeting his specific care needs. Have you searched the Internet for your youngest son's disorder? You might find some US sites, the Americans seem rather good at this, which cover either the disorder itself or disorders which lead to similar problems and which might prove useful.

In your situation I would be listing my son's needs, both medical and care, probably try to find myself an advocate to support me as you clearly have so much to cope with already and try to impress on both the NHS and social services that your son and your family have the right to have your son's health optimised, his care needs met and the best possible quality of life for all of you, I think that it is simply not good enough for the NHS and social services to say that they know nothing about the disorder and leave you to cope without support, they have a duty of care to your son and to your family.
Welcome to Carers UK

You'll find others here who know exactly what you mean. Carers constantly have to battle for any support at all.

Just a quick thought - do you know about Contact a family? They are an amazing charity for parents of disabled children who specialise in information on rare conditions and in putting parents in touch with others who have kids with the same rare conditions.

Welcome - the thread "Roll call" in the carer to carer section is a good place to check in and get to know people

All the best


PS - I've moved your post as more people will see it in this section
hi reply to your comment,i agree nhs and social services both have a duty of care to our son and us.but they will not do anything.its a very complicated story,we had all the care set up for our son back in jan 10 but when a hospital threw a fii accusation at us and child protection it all changed,they cancelled his gastrostomy feeding tube allthough they never made it.we had a brilliant consultant for our son but he retired and things havent been the same hes being left with no treatment loosing weight,and the ammense stress were under as a family.weve had so much to cope with.regards our sons rare disorder there is only 1 other case in canada,they dont have alot of info either but they been told by there genetics something completly different to us by gos.we are registered with unique and yes we no about contact a family.gos have also tried to get our son the care in the community and so far failed
and yes we were vindicated from that accusation and quite right 2,they didnt understand his disorder so thought we were making it up.i dunno what else to do ive fought every avenue so far but keep hitting brick wall.think we have to somehow accept that our son isnt gonna get any treatment under nhs and were not gonna get any help what so ever as carers that are at there wits end.ive already asked social services to accomadate our youngest but they wont cause the issue is health.a diatician told us before xmas that we have to accept noone is gonna help our son


I do sympathise with you from the bottom of my heart. My hubby and I have a son who is now 41 yrs. of age; he has five disabilities, all separate in their own rights, but all adding together to make for very complex difficulties. His most obvious condition is physical, but this is complicated by a very specific disorder in the way he uses language - not speech, but language! - in addition to which he has elements of autism, learning difficulties, and some mental health difficulties. But because these things are not so obvious they have gone ignored over the years; and have led to many, many, problems.

The main one being the ignorance of the so-called professionals; believe me, they don't always know everything; so DO NOT GIVE UP TRYING TO FIND STUFF OUT - so long as you believe in what is wrong then that is all that matters.

You could always try taking legal action, because as someone else has said, the authorities have
a 'duty to care' - to find out what the problem is, and then to deal with it. But this is NOT an easy option; very time consuming, tiring, and emotionally draining. But sometimes it is the only avenue that has to be taken to make these people sit up. KEEP AT IT!
Hello and welcome.