Eun's son's petition - Please sign - Fight for respite

[Happy.smiley.danii]

Eun, I have too signed, Shared and support your fight. Well done!! x

[no1mum]

Signed and shared.

[Eun]

I just want to say thank you to everybody for signing Robert's petition. The photo at the top of the petition is of Robert with Scotland's First Minister Alex Salmond. (He's doing what we are not allowed to do and leaning on Robert's tray lol).

His friend Paul came out yesterday and they worked on a letter which they are going to get all the DMD boys/young men they know to sign and then they will send it to the Muscular Dystrophy Campaign. Robert has also set up a Facebook page and is going to do a blog.

I emailed Derek Mackay who is my MSP 3 weeks ago and he has sent me a copy of the correspondence he has received from Renfrewshire Council and from the Scottish Health Ministers office (the usual "we are looking into this matter and will be in touch" etc) but I am not going to allow them to fob us off. I will email Derek Mackay again and ask him to keep on top of this for us.

Robert got a phone call from the guy who runs the 38 Degrees site suggesting that Robert just concentrate on Scotland in his petition but as Robert pointed out to him - this affects people UK wide which is why it is a UK wide petition. He also suggested that Robert should put more info about how it affects him on the petition but as Robert pointed out, he has put links to the Glasgow Herald story for that.

Can't think of much else we can do at the moment but I will keep everybody up to date on what is happening.

Eun

[charles47]

Have shared on Facebook again as a reminder.

[Lazydaisy]

me too.
Someone has shared it onto their own page now.

[Eun]

Robert and a group of DMD boys are going to the Scottish Parliament to raise the issues and Robert will talk about his petition. One of the Edinburgh young men went to the Scottish Parliament on Wednesday just passed and raised the respite issue. Labour MSP Jackie Baillie has taken an interest. Paul (Rob's pal) tried to raise the issue with the Family Care Officer of the Muscular Dystrophy Campaign but he said that she said there isn't a problem. Why is she not listening to the people this affects and just saying there is no problem doesn't mean that is the case!!! The guys are telling her there is a problem - that will be why she hasn't contacted us then despite us requesting her to do so a month ago.

Eun

[ladybird]

Eun, I take it the MDC has an executive in charge (no doubt on a juicy salary), why not go straight to the top about the lack of response from the family care officer?

If Rob and other young guys are living longer, they need respite and so do those who look after them. How the heck can they say there is no problem? Any organisation that purports to support and provide a service for a particular client group has a duty to "move the goalposts" when the need is there, which it obviously is in the case of quite a few of these young guys.

To discount a need because the clients have lived longer than expected is appalling and totally disgusts me.

[no1mum]

Signed by OH, forgot to email the link to him when I mass emailed it

Also bumped it on my facebook page.

[Eun]

Thanks everybody! Up to 748 signatures now The more we get the better it will look when Robert presents it to the Scottish Parliament.

Eun

[Eun]

756 now. Rob emailed the Muscular Dystrophy Family Care Officer twice but still no contact from her - we'll see what the reaction is once the DMD boys/young men all sign his letter and send it off to the Muscular Dystrophy Campaign Head Office.

Eun