sorry if this is a long post

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Got an answer today from Micheal Matheson the Minister for Public Health in reply to the contact from my MSP Derek Mackay. The reply is total waffle and does not answer any of the points I raised. Here goes, see what you all think I would very much value my friends input.

First off he starts by calling me MR Eun W (when did I have a sex change lol).

Then:-
"...Mrs W may be interested to know that CHAS plan to establish a transition team to provide support to people and their families who are affected by this change..." Firstly - I was the one who told him that - I know this. Secondly this could take a long time and it will only be 'over the phone', thirdly what is the point of a 'transition' team when there are no services to transition to?

"..You may also be aware that the overall responsibility for arranging and funding respite care rests with local authorities by means of a block grant..." Passing the buck or what?

He then goes on about us contacting the Muscular Dystrophy Campaign Family Care Officer. We have, she's not interested. All they are interested in is money for research they are not interested in helping the older boys (young men really) with DMD.

He then waffles on about Carer's Assessments and an Assessment for Rob - pointless - I'll repeat again -there are no suitable services out there for him. Adult hospice care is for crisis or emergency admissions we have been told they will not provide planned respite breaks.

He says if we are unhappy we should lodge a formal complaint with the local authority and then the Ombudsman. Why? AS far as I know you can only complain to the Ombudsman about procedural matters not about a lack of availability of services or have I got that wrong?

You know there is no love lost between me and social work but how is it their fault that there are no services for the age group 21-45 in the whole of Scotland (and in fact the UK). Its the damn government's fault (and the MD Campaign) in my opinion.

He then tells me about The Princess Royal Trust for Carers offering short breaks for carers. And we do what exactly with Rob? That's my whole point we can't have a break because there is nowhere for Robert to go!!! Image

Anyway what I wrote to him wasn't anything to do with us as carers - it was to do with the lack of respite for Robert so why is waffling on about carer's stuff we can't use anyway?

I was literally tearing my hair out and felt like banging my head repeatedly off the living room wall. I think I am going nuts.

Rob went to the Scottish Parliament on Thursday and spoke about the lack of respite and Jackie Baillie the Labour MSP said she would be interested in Robert coming to do a presentation to Parliament on this but why is it all left to us and Robert - why won't the other parents and boys/young men get up off their butts and do something why is always left to us? Lets face it they will be smart enough off the bat to take advantage of any suitable respite we manage to find. I'm sick of it all already and the fight has only just begun.

Please accept my apologies for ranting on here I know that everybody has their own problems to try and cope with.

Eun
Eun, the first four words to describe this are BULL****! It's simply a load of absolute nothingness. All he really needed to ask himself is "Where can I recommend to this deserving family?" Had he done so, he would have realised that he couldn't recommend anywhere for Rob to go...because there isn't anywhere! Which is exactly why you went to see him in the first place. And it's his sort of attitude which makes an already difficult job far, far worse because of the emotional stuff that it creates. All I can do is send you a big, big (((HUG))).
I should answer him point by point as you have here, with the MSP copied in, not forgetting to ask if you can complain to the Ombudsman about a non existent service.
Perhaps your newspaper would be interested too.

But what is really annoying is, whichever politician, whichever party, if they don't know they present you will a load of useless waffle that doesn't answer what you asked Image
Do they really think we are stupid?
Do they really not realise how stupid their replies make them look?
Myrtle, I think it's Eun who's surrounded by muppets .............
Don't know what to say to you, Eun. The situation when young people get to 16 or 18 has never been thought about. Just giving you my support and hugs really xxx
Thank you for your helpful replies.
Sent another email answering Matheson's letter point by point - also included Robert's blog in his own words about what the lack of respite will mean to him - and have asked Matheson straight out what is he going to do about the fact that respite is non existent for this age group and I want him to answer that question and that question only!
Got an e mail saying it has been passed on and they will get back to me.
We are trying to talk Robert into contacting Scottish Television, the Sun Newspaper (rag) and The Daily Record etc to try and raise public awareness of this situation but I think he wants to talk to the other DMD boys at the next Young Adult Council meeting next week and discuss a battle plan with the rest of them before deciding what the next step should be.

Eun
I think you're right in going to the press. It's amazing how quickly politicians can get things moving when they see potential negative publicity about themselves!!
Good luck.
Jx
Eun, I agree with Myrtle.

If Rob went to speak in parliament would any of the other young men affected with DMD go along too?

There is a real lack of provision of decent respite for those with complex needs and it is despicable.

Melly1