Archive for April 9th, 2010

Motor Neurone disease – One familys’ story

9 April 2010

Recently Carer Watch received an invite from Helen Findlay to the Sir William Beveridge event  “Funding Social Care – Getting it Right for the Next Generation” . Afterwards we exchanged emails and as a result Helen shared some of her familys’ story.

 I am a member of the Service User Advisory Group at the National Council for Palliative Care which I have been involved with for about two and a half years. It’s a voluntary role and I attend meetings and seminars that they organise; I have also spoken at a number of
their events and other conferences aimed at health care professionals
including those working in primary care.

The catalyst for me pursuing this line of activity is primarily because of
what happened to my father after he was diagnosed with motor neurone disease (MND) which happened in the autumn of 2005. From diagnosis to when he died was just seven weeks – the most dreadful seven weeks for him, me, my siblings and my mother. The disease was bad enough – watching him wither away so quickly and all of us trying desperately to help and support him in the face of very bad attitudes and practices from health and social care professionals made it even worse.



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