All on top of us

[StiffyByng]

Sorry, venting a bit. DSD has a metabolic disease diagnosed two years ago. My husband's ex-wife and second son have already died of the same condition, a rare mitochondrial cytopathy. DSD is currently going downhill very rapidly and our lives are quite hellish. She can barely walk but we have no idea how long an NHS wheelchair will take-waited two weeks so far for something basic. Red Cross can't help and hire is expensive. We applied two months' ago for a Blue Badge-no decision. DLA application in. Very little of our paperwork supports stuff as she is going downhill so rapidly. Getting one thing seems to depend on having others, and she is not on the LA's radar. School transport is a problem as she is not at her nearest school. School are very supportive and trying to get emergency statement. She also has obvious dementia starting and is very anxious which makes her very hard to live with. We're struggling on with seven consultants and CAMHS to juggle. We also have DSS, 9 and DD, 8 months. It all just feels too much. At this rate she'll be dead before we can make her life any easier.

Bumping this...

Oh, I do hope someone can help you with all this. How very hard.

I would have thought you absolutely should get stuff rushed through, including DLA. It sounds as if you might have to get very demanding very quickly if you haven't already. Do you have a lead consultant who can co-ordinate everything and everyone, and get a meeting organised with the various people who matter round the table and a plan in place pronto?

The best of luck - sorry I can't be of more help and I hope someone comes along who can

Thank you, Bakelite. Our lead consultant is very supportive of us but can't do much. He expects us to have to appeal DLA. He's said he's referring us to a community paediatrician but as with most of our referrals it all takes ages. One key one is 11 months and waiting.

Advice on here before was to get a social worker and the school has referred us to the Children with Disabilities team so perhaps we'll get some support there.

Sorry, the timescales (we've waited TWO WEEKS for a wheelchair!) must look silly to people on here who've waited months for stuff. It's just that DSD's condition is visibly deteriorating daily because of the effort she has to make at school and outside school we are stuck in our small flat with her because we're trying to conserve all her energy as much as possible. And we have no idea how long this will go on for-presumably it could be months yet for a wheelchair.

I shouldn't whinge but the future does seem pretty bleak right now. Her eyesight seems to be worsening now. We have asked the LA and there is no suitable special school provision in the borough for her so when she becomes unable to attend her mainstream school, I've no idea what happens. All the special school provision is targeted at autistic children.

The Disabled Childrens team are probably best placed to help - but even they usually have waiting lists for assessments. Have they been told by school that your DSDs condition is deteriorating rapidly? Has the school nurse been involved ? - even if there isn't one at DSDs school there should be one who is allocated to that school who is based elsewhere.
Does your DSD have a physio - in our area they usually do referrals for wheelchairs but as you've acknowledge, whilst 2 weeks seems forever to you, I'm afraid that is no time at all in 'the system'
The big problem with 'the system' is you have to be in it already to get other doors open. I think perhaps the consultant needs to make a few phone calls to get things fast tracked if she is going downhill that fast. Making her walk if it is a struggle for her is only going to make matters worse, and you will struggle to cope if you all stay cooped up in a flat.
I'm afraid you are going to have to start being assertive and stamping your feet a little. Be polite but firm - but I'm afraid my experience is that those who shout loudest get most!
I'm also assuming that it is a genetic disorder that your DSD has which she was born with even though she was only diagnosed 2 yrs ago. If so, perhaps you could try contacting the charity Newlife.

www.newlifecharity.co.uk/

They may be able to help.

Hi. Thanks for the advice. It's been so busy I've not had a chance to post.

SD's condition has deteriorated again and her vision is now significantly impaired. The 'good' side of this is that she was rushed back to see her consultant. He turned out to have sent all the OH, physio and community paed referrals to the wrong LA, which is why we'd heard nothing. All are with the right people now so we should hear soon. The school has offered to lend us the wheelchair for evenings.
The most significant thing though is that I contacted social services, entirely because of you Mumsnet types, and in 48 hours the consultant has referred, the social workers have accessed her medical records and agreed to take her on the Children with Disabilities caseload. Isn't that amazing? Rather sad of course that she now classes as 'severely, profoundly and permanently disabled', but we now have access to some support.
They are coming next week to discuss what support they could offer. They will support our Blue Badge and DLA applications and push through the school transport application. It's a big relief and it's all thanks to people on here. Thank you.