Aberavon MP puts spotlight on specialist care
12th December 2008
Aberavon MP Dr Hywel Francis this week put the spotlight on NHS care for people living with rare conditions in Wales, as the All Party Parliamentary Group for Muscular Dystrophy launched an Inquiry into specialist services.
Hywel Francis chaired the first oral evidence session, which focused on access to specialist multi-disciplinary care; commissioning and funding; workforce planning and the role of care co-ordinators.
The APPG investigation follows a number of hard hitting reports published by the Muscular Dystrophy Campaign, which reveal that life expectancy and quality of life is being seriously affected by a 'postcode lottery' in service provision.
Commenting on the evidence session, Dr Hywel Francis, who has also signed a Parliamentary motion about the Inquiry, said,
"It's shocking that so many families living with muscular dystrophy in Wales are not getting the care they need.
"This Inquiry will uncover gaps in service provision; and the immediate steps that need to be taken in order to improve care received by families and patients."
Committed campaigner Ray Thomas from Neath, whose son has muscular dystrophy, has met Hywel a number of times. Commenting on the Inquiry, Ray said,
"It's a scandal that Wales is the only part of the UK without Muscular Dystrophy Care Advisors or Care Co-ordinators.
"Families in Scotland, Northern Ireland and England can count on these key workers for their support and advice.
"It's an outrage families like mine in Wales are denied such help.
Chief Executive of the Muscular Dystrophy Campaign, Philip Butcher, said,
"Families and patients from across Wales are delighted that Hywel's All Party Group has decided to launch this important Inquiry.
"The urgency of this Inquiry is underlined by the lack of a NICE guideline for muscular dystrophy and related muscle diseases.
"We hope that the Welsh Government sit up and take note of the group's forthcoming recommendations."
