Thursday, October 20, 2016

Motor Neurone Disease.

Was thinking what I should write about for my fortnightyly column in the Oswestry and Borders column earlier this week. Wanted to move away from Brexit or Wales Bill. So I went for Motor Nuerone Disease. I am president of the Montgomeryshire branch of MND. 

Politicians become involved in a broad range of issues, some specific to the constituency, some of national and international significance, but some based on personal experience and interest. Some interests are born of chance. Several of my broader interests revolve around ill health and social care. As examples, last week I sponsored a 2 hour meeting of RESEC (Research into Specialist Elderly Care) in Parliament. And this week, I joined a highly successful reception held near Westminster Abbey by the Motor Neurone Disease Society. 

Motor Neurone Disease is very cruel. It is fatal, attacking nerves in the brain and spinal cord. It leaves people living with MND locked in a failing body, progressively unable to talk, or move and finally unable to breathe. The disease effects up to 5000 people in the UK at any one time. About six per day die of MND. I have been president of the Montgomeryshire branch of MND for many years now. Our aim is to raise awareness of the disease and campaign to support those living with MND and fund research into finding a cure.

This week's reception was to highlight concerns, designed to influence Government. Government Minister, Penny Mourdant, joined us as a key speaker. There are two issues causing concern at present. Firstly there is the requirement for those with MND to undergo regular re-assessment for welfare support. Been a bone of contention for years with people living with degenerative conditions. They are not going to get better. Re-assessment is pointless. The Government has announced it intends to legislate to exempt progressive diseases from the need for re-assessment. This must apply to MND. It's a disease without a cure. It's a slope which leads only one way.

The second big concern is the Government’s intention to devolve social care payments to local authorities or in the case of Wales, to the Welsh Government. I must admit I support this, though it will inevitably lead to variable standards of service. To argue against this is to argue against devolving powers from central government. But it is an issue needing further discussion.

I particularly enjoyed meeting Prof Jane Hawking at the reception. She was married to the brilliant scientist, Stephen Hawkins for 26 years. I felt that I knew her already, having watched The Theory of Everything, the film based on her book outlining her experience, as a nurse, Carter and wife. She may not look like the actress who played her in the film, Felicity Jones. But she still exudes the intensity and strength, based on her faith, which enabled her to cope with the extraordinary pressures that MND meant for her as well as her husband. 

It was a good event, arranged by dedicated people. I hope Govt listens to what they say.

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