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Hi All - Carers UK Forum

Hi All

Tell us a bit about yourself here.
A quick hello from me!

My name is Heidi and I've been caring for my son Jack for 18 years. He was born with a condition called M- CM Syndrome back in 1995 so I became a Carer as well as a Mum for the first time at the age of 23. He has severe epilepsy, Hydrocephalus, Diabetes Insipidus, Kyphoscholiosis, PMLD, Gastrointestinal Reflux Disorder and cannot walk or talk - although this has never stopped him getting his point across!!! ;)

I'm married with two other children :) I don't work.

Jack is just going through "Transition" to adult services...well actually I think we are now on the home straight with it all. Currently fighting for funding for Jack to attend a specialist day college from september. Jack has just also had his first "adult" consultant appointments at hospital. His respite changed (and was slashed) last year, and we have just managed to get his ESA sorted out after 12 months of muppetry.

Looking forward to getting to know you all.

Hi Heidi and a warm welcome to the forum. Transition can be a nightmare. There are plenty of advice and social sections on the forum. :)
Hi and welcome
Hello Heidi and welcome to the forum :)

Sounds as though you have your hands full :ohmy:
Hi Heidi, sounds like you have a really difficult time. Has anyone mentioned NHS Continuing Healthcare to you? I have come across it in relation to my elderly mum, but it is available for people with very serious health issues. It might be worth you looking up the assessment process to see if it relevant to you. If so, then the NHS would have a duty to provide you with support and respite.
Hello Heidi....warm welcome from me too!

Bell x
Hello Heidi,

Your son sounds like he has a lot of personality.

S and I have been through transition, it was and still is, a constant battle. Our "children" get harder to care for the older they get, in yet at transition everything changes and support is reduced.

I hope you find the forum supportive.

My son attends specialist day college too. He is part funded by education and part by social care and health. His annual review is coming up and I'm gearing myself up for a fight ... He has been at college 3 years, (he's 22.) I'm hoping that because he is part way through courses that will help our case. Social care would prefer he went to a cheaper (and half empty) day care service instead ...

Thanks for the welcome - sorry it's taken me 7 months to reply! :D
So just a quick update - my son did get educational funding for his specialist college and he started in September. There have been a few teething problems - but on the whole he's really enjoying it I think.

I was asked by someone what Transition is like recently and I summed it up like this....it's like being guided to the edge of a cliff - and then booted off it and left to either fall and hit the ground....or start flapping your wings and try to keep going. I've found it a very grim experience with zero support. I try not to dwell on the bad times and keep moving forwards as best I can - not only for my own sanity but for that of my husband and other kids too.

Re Continuting Healthcare...an application was made 5 years ago to aid getting J to school - he has severe epilepsy and the county council refused to allow him on transport without a trained nurse travelling with him. To cut a long and 12 month long saga short - we were refused as Although J stops breathing during a seizure - he starts again by himself. My response was "well if he didn't come round he would be dead wouldn't he". But we were still refused. As I say, 12 months of red tape hell. For my own sanity I decided to transport myself and that's what I've done ever since. If he has a seizure in transit I have to pull over and do what needs to be done - time the seizure and give J O2, if it goes over a certain time limit then I have to dial 999 as administering rectal diazepam is impossible while he's sitting in a chair fitting. We did try Buccal Midazolam which is administered orally - but it sent him into a cycle of fits and ended up in hospital anyway!
CHC was such a stressful experience....it's not something I'm willing to repeat unless absolutely necessary.

Sorry to hear that your CHC experience was dreadful. My mum died last weekend, with the doctors still saying she wasn't ill enough for CHC!!! I'm going to get the funeral over before I do anything about it, but then I will have a lot more time. That's a very precious commodity when you are a "heavy end" carer like you. Take care.
Heidi - only a thought, and it may be quite irrelevant, but I'll pop it down anyway 'just in case'.

When my husband was in end stage of cancer, his brain mets (secondary tumours) caused him to have epilepsy. While he was in hospice-at-home care, he was fitted with a syringe driver, which was pretty 'light, consisting of permanent needle in his arm, leading to a small box kept under his pillow, but I believe they can be kept 'in a pocket' if the patient is still mobile, in which the diazepam was kept. The diazepam was dripped 'continuously' into him, but the main advantage was that it did not require a trained nurse to be there all the time (as a conventional drip requires, so I believe?).

I was wondering, therefore, whether it might be possible for your son to have a similar set up - rather like a 'chemo line' which I think is fitted into patients 'permanently' (ie, for the duration of the chemo, which can take several months) - to which you might be 'allowed' (ie, untrained medically) to insert something akin to the syringe driver???

I can't remember, alas, whether the needle was inserted sub-cut or actually into a vein - I know it will make a difference in terms of the 'speed' of the 'hit' of the diazepam. It take it that a sub-cut injection by you wouldn't 'hit' fast enough??

It does seem odd that, given the advances in medical technology, there isn't some kind of simpler 'self-administered' (by you)' method of getting diazepam into your son fast enough in the event of seizures.)

All the very best to you in coping with such a challenging and distressing situation - kind regards, Jenny.