September 16, 2008
My Son is Not Getting the Care He Needs
By JESSICA SARGEANT Herald Reporter
The mother of a 16-year-old with muscular dystrophy has called for a 'radical change' in how care is provided for patients such as her son.
James has Duchenne muscular dystrophy, an inherited genetic disorder characterised by progressive muscle weakness which starts in the legs and pelvis and later affects the whole body.
Mrs Kitcher's comments follow the publication of a report suggesting services for adults with neuromuscular disorders are worse in the South West than almost anywhere else in the country.
She is calling for a specialist team to be formed in the area, which she said was 'not rocket science'.
A spokesman for NHS Plymouth, formerly Plymouth Primary Care Trust, insisted it was 'working hard' to improve the services it offered.
Mrs Kitcher said James was studying for A-levels at Estover Community College but had been seriously affected by the lack of fundamental services.
Last year had been a very distressing and frightening time for the whole family, she said, because of delays in providing the interventions he needed which had seriously affected his health and his life.
"The delay led to James being dramatically ill," she said. "He could no longer attend school and because of the lack of care his condition has considerably worsened.
"We have to fund our own equipment and have had to raise funds for basic furniture such as a bed and desk.
"It seems anything labelled as 'disabled use' has extortionate prices. It was pounds3,000 just for his bed," Mrs Kitcher added.
"House adaptations took four years to materialise from the application stage to actually being installed.
"I had to supervise the house during the whole installation, which made working impossible."
James had suffered huge delays for vital assessments, she said, and had waited more than 20 months to be seen.
Timely intervention was a considerable part of his ongoing care, she said, and if this was delayed, fundamental care was effectively being denied.
"There's been no signposting or co-ordination of his care and he doesn't see a specialist consultant or a community physiotherapist," said Mrs Kitcher.
James' case echoes the findings of the first ever national survey by the Muscular Dystrophy Campaign, which reported an overwhelming lack of care and severe financial hardship being experienced by patients in the South West.
Launched ahead of Muscle Awareness Week, which starts on September 20, the survey, entitled State Of the Nation, says patients in the South West are being denied essential health and social care services.
It follows a report published last December, Building On the Foundations, which also highlighted major failings in healthcare services in the region.
Philip Butcher, chief executive of the Muscular Dystrophy Campaign, said the latest survey showed 'inequalities in access to vital specialist care can, for some families, be a matter of life or death'.
The NHS says after the report was published both the South West Strategic Health Authority and the South West Specialised Commissioning Group ordered a review of specialist care.
This was carried out and a set of proposals was produced calling for significant service improvements.
These proposals, which would be implemented from April 2009, included an adult consultant based in the peninsula specialising in muscle disease, a specialist physiotherapist and a care advisor to provide practical and emotional support.
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