|
IN
SCOTLAND
The regional service setup in 2007 for families in the west of Scotland,
had humble beginnings in the 1990s.
It was then that Dr. Iain Findlay from the Royal Alexandra Hospital in
Paisley met cardiomyopathy expert Professor William McKenna, then at St.
Georges Hospital in London. Professor McKenna asked him to see Scottish
patients with cardiomyopathy and Dr. Findlay agreed.
Following the CMAs funding of the telemedicine service in the late
1990s, which allowed Dr. Findlay to talk online to cardiomyopathy
experts in London, he began to see his own patients at an informal
clinic in Paisley.
The clinic expanded unfunded to a fortnightly clinic at the Western
Infirmary in Glasgow but it was unsustainable without further support.
Over the past four years, the CMA has provided, with some help from the
Robertson Trust, a total of £100,000 for a nurse specialist post, held
by Joan Anusas, and administrative support.
The clinics value became clear and subsequent funding came from the West
of Scotland Regional Planning Group. Today, around 30 new patients are
seen each month, including families who have had a sudden unexplained
death, and genetic testing is offered. Patients are seen by a
cardiologist and a geneticist.
"The contribution made by the CMA in the development of the service is
very significant," said Dr. Findlay. |
|
Scottish campaign reaches Parliament
The CMA in Scotland has been campaigning
for better services for cardiomyopathy patients through the Scottish
Parliament and a group setup up by heart clinicians.
Scottish CMA trustee Bob McConnachie has
been giving evidence to the Heart Disease and Stroke Cross Party Group
of the Scottish Parliament in a meeting in June that looked at
cardiomyopathy. Bob, who lost his son to the condition, gave the CMA's
viewpoint and his own on the disease and ways to improve diagnosis and
reduce sudden deaths.
He has also been invited on to Scotlands
Familial Arrhythmia Network, a group of cardiologists and clinical
geneticists, looking at improving the management of families affected by
electrical diseases of the heart. the group, which is looking at the
CMAs regional clinic in Glasgow, wants to set up clear pathways to
treatment, similar to those in England Chapter 8 of the National
Services Framework for Heart Disease.
the network plans to launch its ideas to
the Scottish Parliament in 2010 and seek early implementation.
|
Taking on another hill
CMA supporter Andrew Strachan has been
climbing the highest mountain in south east Asia. Andrew climbed the
4000 metre Mount Kinabalu in Borneo, abseiling, kayaking and white water
rafting along the way.
He decided on the demanding five-day
challenge after climbing Mount Kilimanjaro in Tanzania last September.
He trained with British Military Fitness to prepare him for the
difficult challenge.
Mark is profoundly deaf and is supporting
the National Deaf Childrens Society and the CMA.
His mum, CMA Scottish Support Group member,
Mary, can be rightly proud of him.
Well Done Andrew.
New booklet now available
The CMA's new booklet Cardiomyopathy in
Children and Young people is now available.
The free 28-page full coloured booklet can
be ordered from the CMA by families and clinics.
Members can request copies for their
childrens' clinics and their schools.
The A5 booklet covers everything from
diagnosis and treatment to growing up with the condition, school,
sports, nutrition, immunisations, careers, holidays and lifestyle issues
such as alcohol and drugs
|
Cardiomyopathy
Scottish Support Group 
