Charity calls for new Health Minister to adopt the Internationally agreed Standards of Care for Duchenne throughout the UK
Action Duchenne, a leading national charity focused on finding viable treatments for Duchenne Muscular Dystrophy today applauded the appointment of Jeremy Hunt as Secretary of State for Health and Norman Lamb as Minister of State for Care Services during the Coalition Government’s first cabinet reshuffle. The charity welcomes the new appointments, particularly in light of Mr Hunt’s campaign for a better deal for parents of severely disabled children and for carers of disabled people. Mr Hunt has also pushed for the simplification of the highly complex benefit system, and for the removal of disincentives within the system that prevent or discourage disabled people from working.
The families of those living with Duchenne often have to dedicate themselves to caring for their child on a full-time basis, whilst also campaigning for the services they require and navigating round a complex and regionally variable benefit system. This can lead to additional strain on families.
Andy Soar, Campaigns Officer at Action Duchenne commented, “Action Duchenne welcomes the appointment of Jeremy Hunt and Norman Lamb to their new positions. We hope that Jeremy Hunt will continue to focus on the difficulties which carers and parents of severely disabled children deal with, particularly when trying to access new services.”
Earlier this summer, young people living with Duchenne Muscular Dystrophy, their families and supporters lobbied the Department of Health and MPs at Westminster and the devolved governments in Edinburgh, Cardiff and Northern Ireland. They were asking for:
• matched funding for Action Duchenne’s ground breaking research programme
• improved multidisciplinary medical care to be delivered via Centres of Excellence throughout the country
• access to specialist educational support and support for independent living
In their message, the families called for the commissioning of more multidisciplinary centres of excellence as seen in Denmark. These centres provide holistic care and monitoring services, tying together the complex care requirements of those living with Duchenne. Such care has been shown to both improve life quality and extend life expectancy by up to 10-15 years.
Duchenne Muscular Dystrophy affects one in 3,500 male births in the UK, and is the most common and severe type of muscular dystrophy. Sufferers are diagnosed, usually, by the age of five and rarely live past their twenties. Since being established in 2001, Action Duchenne has successfully campaigned to increase awareness of the disease to improve standards of care and raised several millions of pounds to fund medical research and partnerships.
For more information on Action Duchenne and Duchenne Muscular Dystrophy please visit: www.actionduchenne.org.
Action Duchenne, a leading national charity focused on finding viable treatments for Duchenne Muscular Dystrophy today applauded the appointment of Jeremy Hunt as Secretary of State for Health and Norman Lamb as Minister of State for Care Services during the Coalition Government’s first cabinet reshuffle. The charity welcomes the new appointments, particularly in light of Mr Hunt’s campaign for a better deal for parents of severely disabled children and for carers of disabled people. Mr Hunt has also pushed for the simplification of the highly complex benefit system, and for the removal of disincentives within the system that prevent or discourage disabled people from working.
The families of those living with Duchenne often have to dedicate themselves to caring for their child on a full-time basis, whilst also campaigning for the services they require and navigating round a complex and regionally variable benefit system. This can lead to additional strain on families.
Andy Soar, Campaigns Officer at Action Duchenne commented, “Action Duchenne welcomes the appointment of Jeremy Hunt and Norman Lamb to their new positions. We hope that Jeremy Hunt will continue to focus on the difficulties which carers and parents of severely disabled children deal with, particularly when trying to access new services.”
Earlier this summer, young people living with Duchenne Muscular Dystrophy, their families and supporters lobbied the Department of Health and MPs at Westminster and the devolved governments in Edinburgh, Cardiff and Northern Ireland. They were asking for:
• matched funding for Action Duchenne’s ground breaking research programme
• improved multidisciplinary medical care to be delivered via Centres of Excellence throughout the country
• access to specialist educational support and support for independent living
In their message, the families called for the commissioning of more multidisciplinary centres of excellence as seen in Denmark. These centres provide holistic care and monitoring services, tying together the complex care requirements of those living with Duchenne. Such care has been shown to both improve life quality and extend life expectancy by up to 10-15 years.
Duchenne Muscular Dystrophy affects one in 3,500 male births in the UK, and is the most common and severe type of muscular dystrophy. Sufferers are diagnosed, usually, by the age of five and rarely live past their twenties. Since being established in 2001, Action Duchenne has successfully campaigned to increase awareness of the disease to improve standards of care and raised several millions of pounds to fund medical research and partnerships.
For more information on Action Duchenne and Duchenne Muscular Dystrophy please visit: www.actionduchenne.org.
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