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mellonius
28th November 2012, 19:20
Today, was one of three MND sufferers who gave a presentation to members of the Welsh Assembly government in Cardiff - to promote the MNDA Charter and raise awareness with those who provide the NHS in Wales. From my wheelchair and with weakened speech [said to be an advantage if looking to get decision-makers attention!] I focussed on the need for health services to keep up with - or ahead - of patients' needs - otherwise by the time a solution to a problem is delivered, the disease has moved on. eg my voice is going; so is the use of my remaining hand so a text to speech device to solve the speech issue will be too late for me by the time I' m assessed, device identified, funded etc. Etc.. Hope I did justice to the cause. [probably better than my success with the urine bottle - see other thread!]. Mel.

roy
28th November 2012, 21:29
hi Mel,

Respect to you, for putting yourself forward to make awarness of the progression rate constantly changing the needs for MND heros.
I think pretty much all of us have had challanges for help and support in one way or another thank goodness for the forum for all new on here to get some sort of advice and help.Hope you get all you need Mel.
Cardiff -but English-do you have a nice valley accent?

best wishes.

Roy.

Roy.

mellonius
29th November 2012, 10:54
Roy - no valleys accent boyo, tidy like innit - just proper job cor lummie devonshire one, m'dear. M

roy
29th November 2012, 12:16
Nice one Mel.

Kiran1
10th December 2012, 15:43
Hi Mel,

Congratulations on the presentation to Welsh assembly. Has the same been done in recent times at westminster or any plans ?

All the best in your efforts,
Kiran1

johnh
11th December 2012, 14:42
bridgend council told me that it will take over 12 months for adaptation works - which is about the same as my life expectancy! cost saving?
i have paid tax/NI for 48 years without a singl claim on the state.

caz
11th December 2012, 21:52
we are still waiting to have work done and i contacted local mp and councillor to get things moving and today agreed on what would work NOW whereas 5 mnths ago totally different plans.still looking at couple of months but that makes 5 months of using commode in dining room .bloody disgraceful in this day and age I think you would agree..i would like the mnda to contact all councils and find out how many mnd sufferers applied for but never survived to see any work done as they seem to drag their heels as long as possible knowing time will run out.hubby also paid tax etc all working life.i seriously think the government should look at this and make it law work is done within 3 months of diagnosis.thoughts anyone?caroline x

roy
11th December 2012, 22:53
Hi Caroline,

A very valid point,first means testing may, then intial plans -then secondplan adjustments ,then 2 x qoutes, well mine hasnt got to qoutes stage yet when my OT first suggested adjustments I explained my previous experience with my disabled mother which took a year for a wetroom adjustment and implied if that would be the case why bother.Not the OTs fault they are just the messengers,I think your point about requesting MND getting envolved on performance of the councils performance would be useful -the good the nots so good and the bloody ugly.Saw a thread last week where a london council did a fantastic job for member iwontgivein -good for him and welldone the council.
Know its a big ask for MNDA but your envolvement in this area would be appreciated before its to late for some.


Roy.

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