UK muscular dystrophy care ’sub-standard’
People living with neuro-muscular diseases in the UK have a sub-standard system of care, according to a major charity.
Evidence gathered by the Muscular Dystrophy Campaign also revealed significant variations in survival across the nation.
As a group of leading clinicians, patients and the charity presented their report to parliament last week, they pointed out the "vast disparities" in service provision for people with a neuro-muscular disease.
Building on the Foundations: Establishing a Specialist Neuromuscular Service across England outlined that survival for patients with Duchenne muscular dystrophy is an average of 18 years in the south-west, compared to 30 years in the north-east.
Inequality of access to specialist care across different regions is described in the report as leading to a "postcode lottery" for patients and their families.
"People with rare illnesses are living longer thanks to medical advances, and yet local NHS services are failing to meet this demand," remarked Philip Butcher, chief executive of the Muscular Dystrophy Campaign.
Co-author of the report, Professor Mike Hanna, added: "It is simply unacceptable that life expectancy for conditions such as Duchenne muscular dystrophy can be halved, after diagnosis, depending on your postcode."
The Insurance Helpline specialises in obtaining cover for people living with muscular dystrophy
Tuesday, December 11th, 2007
