17 September 2007

Lobby at the Scottish Parliament – Holyrood, 4pm on Wednesday 19 September

Minister for Public Health, Shona Robison MSP, will be joined by families and individuals living with muscle disease on Wednesday 19 September to lobby Parliament and the Government to improve services for those living with the condition.

The ‘My Life’ campaign calls on the Scottish Government to make independent living a priority for people with muscle disease, by improving provision of powered wheelchairs and home adaptations.

Over 3,000 people with muscle disease living in Scotland have poorer access to vital support services than their English and Welsh counterparts.

Means testing for adaptations for disabled children has been abolished in England, but remains in place for Scottish families.

River City actor, Eileen McCallum, whose two grandchildren have Duchenne Muscular Dystrophy, said:

“At the moment the needs of my grandchildren are being met but I’m concerned about what the future might hold.

“Too often in Scotland wheelchair provision is inconsistent, inadequate and often subject to a postcode lottery. Mobility is a basic right - the technology is there and yet we’re lagging behind.

“We need the help of our Parliament now, and I call on MSPs from across the parties to back the My Life campaign."

Stephen McDonald, Chair of the Muscular Dystrophy Campaign’s Scottish Council, whose 15 year old daughter has muscle disease and uses a wheelchair, says:

“By joining forces with other families and people with the condition, the Health Minster will hear first hand why wheelchair services are in urgent need of improvement for people with progressive conditions.

“It’s a waste of time talking to local wheelchair services if you want anything supplied quickly for young people with muscle disease.

“It’s simply not good enough that many families with severely disabled children are forced to privately fund essential powered wheelchairs due to a lack of funding from local NHS Wheelchair Services.”

Robert Meadowcroft, Director of Policy at the Muscular Dystrophy Campaign, said:

“It’s shameful that Scotland is the only part of the UK where a grant for home adaptations for families with disabled children is means tested.

“Why should England benefit from the Disabled Facilities Grant and not Scotland?

“Rather than have access to a dedicated fund for essential adaptations to people’s homes, those with muscle disease in Scotland must share this fund with non-disabled applicants wanting to make repairs to their houses."

In England, the Disabled Facilities Grant is a dedicated fund for disabled people and can make awards up to £25,000 for essential adaptations to people’s homes. In Scotland, disabled people can only access the Housing Adaptation Grant for a maximum grant of £20,000, and they must share this fund with non-disabled applicants wanting to make repairs to their houses. Means testing for adaptations for disabled children has been abolished in England, but remains in place for Scottish families.

In Scotland, wheelchair provision is inconsistent, inadequate and often subject to a postcode lottery. Muscular Dystrophy is a progressive condition where certain mobility needs can be predicted by clinicians and occupational therapists, yet people with this condition are often subject to delays between assessment and provision. Recent Scottish Government studies into wheelchair provision have emphasised sharing best practice in provision, rather than supplying the right chair for each individual, every time.

To get involved or for more information, contact Nic Bungay on 020 7803 4847.