The NHS is failing in its duty to provide all disabled children, from across the UK, with the vital equipment they need to live happy, independent lives and forcing families to pay for their own wheelchairs, electric beds and hoists, driving them into financial hardship; according to new figures released today by the Muscular Dystrophy Campaign.

Equipment shortfall: How disabled children are being failed includes new data gathered from a patient survey and through Freedom of Information requests to Primary Care Trusts. It reveals that disabled children are subject to a postcode lottery of equipment provision and have to wait months to receive basic vital equipment. The figures show:

- disabled children in the UK can wait for an average of up to two years to receive a powered wheelchair from the NHS;

[example: Two PCTs in the West Midlands have waiting times for a powered wheelchair of 18 months compared to a national average of just under five months.]

- one in three of the UK's children, with muscular dystrophy who need to use a wheelchair receive no NHS funding for this piece of equipment;

- the postcode lottery of NHS equipment provision means that there is a difference in waiting times for equipment of up to 11 months for disabled children living just four miles apart;

[example: One PCT in the West Midlands is the worst performing PCT in the country for providing portable hoists, with an average wait of up to 56 days against a national average of just 13 days.]

- almost all PCTs and Health Boards state that the average cost of a powered wheelchair is about £2,000. However the Joseph Patrick Trust, a grant giving organisation, calculates that the true average cost is £17,500. In reality £2,000 would only pay for the most basic powered wheelchair, which would not meet the needs of most disabled children.

[example: One PCT in the East of England contributes only £650 to the provision of a powered wheelchair despite acknowledging that the average cost of such a chair is around four times this amount.]

The shocking statistics are unveiled on the day that Muscular Dystrophy Campaign is announced the Tesco Charity of the Year 2009. During the partnership a target of £3 million, being raised by Tesco's 300,000 staff and their customers, will fund vital specialist equipment for hundreds of children with muscular dystrophy and related muscle diseases, through the charity's Giving children equipment to be independent campaign.

Philip Butcher, Chief Executive of the Muscular Dystrophy Campaign, said:

"Today's figures are nothing short of a national scandal. It is a damning indictment of the NHS that so many families across the UK are forced to rely on charities or be driven into financial hardship just to receive vital, life-improving equipment for their disabled children.

"With Tesco's generous support of the Muscular Dystrophy Campaign, hundreds of families will be able to look forward to some financial support in these difficult times. However, this is only the starting point and much still needs to be done to solve the issues that our families face in their day-to-day lives.

"It's time the NHS stops relying on charities to fill the gaps left by it's inadequate funding."

The Muscular Dystrophy Campaign is the leading UK charity focusing on muscle disease. It has pioneered the search for treatments and cures for 50 years, and is dedicated to improving the lives of all children and adults affected by muscle disease.

It funds world-class research to find effective treatments and cures; provides free practical and emotional support; campaigns to raise awareness and bring about change and awards grants towards the cost of specialist equipment.

Key national data :

- Some Health Boards do not provide electric profiling beds for children under 12. This results in parents being forced to wake up every hour every night to turn their child in bed to prevent breathing difficulties and pressure sores developing.

- A shocking 50% of Primary Care Trusts (PCTs) will not fund the full cost of a powered wheelchair for a disabled child.

- Disabled children in England are forced to wait, on average, almost five months to receive a wheelchair from the NHS.

- Over half of the children in England (58%) have to wait at least three months for a powered wheelchair and 14% are forced to wait more than six months.

Cost of specialist equipment

The equipment funded by the Tesco Charity of the Year partnership will include:

Powered wheelchairs, average cost (up to) £27,000
Adapted computers, average cost £5,000
Electric beds, average cost £4,000
Portable hoists, average cost (up to) £3,500
Mobile arm supports, average cost £2,000
Riser chairs, average cost £1,600

- The data published by the Muscular Dystrophy Campaign have been gathered by a number of Freedom of Information requests to the relevant Primary Care Trusts (PCTs) and Local Health Boards in England and Scotland, with a 54% response rate. Information has also been taken from a UK-wide patient survey of 237 children under the age of 20, carried out by the Muscular Dystrophy Campaign. Attached is the full list of regional figures.

- More than 60,000 babies, children and adults in the UK have muscular dystrophy or a related condition. A further 300,000 people are affected indirectly as family, friends or carers.

- Muscle diseases cause muscles to waste and weaken making it hard for those affected to do even the simplest of tasks. The conditions don't just affect the muscles in the arms and legs but the heart and lungs too. There are no cures and many affected children don't live to reach adulthood.

- The Muscular Dystrophy Campaign is marking its 50th anniversary in 2009.

Dystrophy Campaign
61 Southwark Street
London SE1 0HL