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full debate in Scottish Parliament - Carers UK Forum

full debate in Scottish Parliament

Socialise and chat about other areas of your life
Robert's petition to provide young adult respite and the Muscular Dystrophy research saying that people DO want a young adult respite centre built will be discussed in a full Chamber debate in the Scottish Parliament on Wednesday 8th October 2014 at 5.00pm.
I had a big disagreement with CHAS representatives last week as they are now putting in place their "Transition" team - because they want us to say how wonderful they are for doing this (they are not even paying for it its lottery funding money) when we know that this now means that the clock is ticking for the young men and women to be kicked out of the children's hospice.
Also they are not willing to endorse Robert's campaign. They wish to facillitate care packages being put in place in peoples houses instead of listening to what the boys and their parents want which is suitable respite.
The boys don't want to be prisoners in their homes they want to be able to socialise with each other and get out and about and us parents want regular breaks so that we can get some sleep and rekindle our relationships as husband and wife and not just mum and dad.

So we are supposed to say in their press release how great they are and yet they are not willing to listen to us. What is the point of a "Transition Team" when there is absolutely zero provision for them to "transition" to?

Eun, doesn't anyone understand what it is like to care 24/7? Of course your Rob needs some life of his own, and so do you. How can anyone claim otherwise? Makes me wonder what their hidden agenda is?!?! However, getting the debate is good news, but I know how hard it has been to reach this stage, and how difficult it is to summon energy to fight the fight. You shouldn't need to be fighting though, it should be obvious to all.
Firstly Eun - well done to Rob for seeing it through this far, I really do hope that some good comes of all his very hard work.

CHAS are being so short sighted ! Rob and his friends with DMD are not going to be the only young people to live longer than once was expected - as medical science advances (and it will) there will be more young people with a variety of life limiting conditions living longer. They cannot be made prisoners in their own homes with their parents being held to ransom to care for them - if only one young fit person was being held prisoner by their family there would be a terrible hue and cry about civil liberties; CHAS are effectively talking abut making a large number of young people prisoners just because they are disabled in one way or another - it's just not right or fair.
Good luck with the debate, it is so important that Robert is such an effective self-advocate, and CHAS has no choice but to play second fiddle IMHO.