UK - Call for specialist liver centre

[Guest guest]

Last Updated: Thursday, 8 March 2007, 12:42 GMT

Call for specialist liver centre

Mr has suffered from the rare

liver disease for 13 years

A man

who has to travel from Aberystwyth to Birmingham for treatment for a

rare liver disease has called for a dedicated unit to be opened in Wales.

, 63, makes the 240-mile trip every four months and has suffered the

condition for 13 years.

People

with serious liver complaints are referred to clinics in England as Wales is

without a specialist unit.

The

Welsh Assembly Government said it aimed to provide the majority of health

care locally " as is safe to do so " .

But

the lack of a specialist liver centre in Wales means

people like Mr are forced to endure long

journeys.

A

retired physicist, he suffers from primary sclerosing cholangitis,

which affects the liver's bile ducts.

'Complex case'

It

is a progressive illness with no known cure and Mr

may eventually require a transplant.

He

said: " I have to go to Birmingham

because there is no liver specialist available in Wales.

" The

journey can take anything from three to five hours and I'm not allowed to eat

the night before because of the scan, so the whole thing is very

tiring. "

He

added: " We must have a centre with specialists so we are not sent from

one end of the country to the other.

" It

would be better to have a centre in the middle of Wales, but

anywhere closer to home would be good. "

A

Welsh Assembly Government spokesman said: " We aim to provide the

majority of health care as locally as is safe to do so.

" With

specialised treatments, patients will need to

receive their care at a specialist centre, wherever it is located.

" Patients

that require more specialised and complex case

management or liver transplants are referred to specialist clinics in England for

treatment. "

Barb in Texas - Together in the Fight, Whatever it Takes!

Son Ken (32) UC 91 - PSC 99 Listed 7/21 @ Baylor Dallas

[Guest guest]

Barb,

Thanks for highlighting the activities of our most active member, in Wales, who has managed to get PSC into the media - which we've been trying to do for ages in the UK., without success.

He's amazing. He ran a 10k race in December and raised over $7,500 in sponsorship money for PSC research. But then he's only 63.

Ivor