Craig, I think your instincts are correct.... But man it seems like Gordon Brown thing is going to really shake things up in the UK. Great news!!!!!
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<b>Cystic fibrosis children treated as 'second-class citizens'</b>
KATE FOSTERCHIEF REPORTER
ONE in five children with cystic fibrosis in Scotland do not receive specialist care, according to an official report into the disease which describes services as "inadequate".
An investigation by the Scottish Executive into NHS services revealed 82 of the 389 children with the disease are not being seen by specialists. It called for 40 extra NHS staff to plug substantial gaps in care.
The revelation follows the disclosure that Chancellor Gordon Brown's four-month-old son Fraser has been diagnosed with the life-shortening disease.
The Chancellor and his wife Sarah, who have one other son John, learned in July that Fraser may have the genetic disease, which causes the lungs and digestive system to produce abnormally thick mucus which blocks airways and causes infections. Recent tests confirmed it.
Last night a leading consultant claimed Scots children with cystic fibrosis are treated as "second-class citizens" with poor access to doctors, nurses and other experts. Dr Anil Mehta, a specialist in child health at Ninewells Hospital in Dundee and head of the European cystic fibrosis database, said at least £3m was needed to provide an adequate service in Scotland.
Until recently, the average life expectancy of sufferers was extremely low but with advances in treatment it rose from five years in 1960 to 31 now, and a new patient group of adults with cystic fibrosis has emerged. This has prompted the NHS to ringfence funding for adult patients at around £3m a year, but paediatric services for cystic fibrosis have not been given the same measure and must compete for funding with other services.
Mehta, whose research persuaded the Executive to introduce screening for cystic fibrosis in newborns, said: "The fundamental problem is that children are treated in a different way from adults. They are second-class citizens and I have been bashing my head against a brick wall on this issue. It is a relatively rare disease and as soon as you have something which is below the NHS radar it goes into the general NHS funding pot.
"The screening test has made a huge difference to children's outcomes. There are now babies receiving care within a month of their birth.
"But if you live miles away from anywhere you need a dedicated regional consultant specialist who is able to travel with a team of specialists, such as a nurse, physiotherapist, dietician and pharmacist, to individual hospitals twice a year to see patients. Specialists know what's going on, they know about new drugs undergoing clinical trials. They check patients' growth and screen them for diabetes and check their nutrition."
The Scottish Executive report, Healthcare Services for Children with Cystic Fibrosis in Scotland - An Evaluation of Current Provision, concluded that 21% of patients were not receiving specialist care. The report states: "This level of care is deemed to be inadequate on the basis of the widely accepted CF Trust standards of care."
Boards not providing adequate care were Argyll and Clyde, Ayrshire and Arran, Forth Valley and Highland.
Cara Doran, Scottish spokeswoman for the Cystic Fibrosis Trust who contributed to the report, said last night: "There is a general shortage of doctors and nurses and there are gaps in most of the service provision in Scotland in one way or another.
"Paediatric consultants as a group have been campaigning for a long time. They want a network with appropriate funding so they can do what they have been doing in a more appropriate and effective way."
A Scottish Executive spokesman said: "This year, we established a National Steering Group for Specialist Children's Services which is committed to improving complex care for children in Scotland, including those with cystic fibrosis. The steering group will be working with paediatric experts to improve specialist care for children."
<b>Gene therapy trials that offer fresh hope </b>
THE biggest test undertaken of a gene therapy treatment for cystic fibrosis is about to start in Britain.
Results, expected by 2010, stand a real chance of transforming the lives of patients and families affected by the disease. The £20m project, almost entirely funded by charitable donations, will be conducted by scientists in Edinburgh, London and Oxford.
They hope to prove that corrective genes can be administered to cystic fibrosis sufferers via a spray inhaler. A trial due to begin in 2008 will for the first time attempt to show evidence that gene therapy can improve the condition of patients with the disease. The scientists do not expect to provide a complete cure, but hope the treatment will be the first in the world to tackle the underlying cause of CF rather than focus on the symptoms.
Patients could have their condition improved to an extent that will hugely improve their quality of life.
Last updated: 03-Dec-06 01:44 GMT
