The new chair of the Parkinson's Disease Society,
Melinda Letts, tells Vern Pitt why home life is a permanent
reminder of her vocation
“I can't imagine anybody getting that news where it wouldn't be
a terrible shock," says Melinda Letts. The new chair of the
Parkinson's Disease Society is discussing her husband's diagnosis
with the incurable degenerative disease in 2007.
The warning bells sounded when Duncan McIver* visited his doctor
with an unrelated, harmless complaint. Before leaving he mentioned
he was having difficulty with his handwriting. After answering a
few questions he was told he might have Parkinson's and was
healthcare charities and organisations since 1989, including as
chair of the Long Term Conditions Alliance (LTCA), her perception
of the disease had been shaped much earlier and was bleak.
"When I was an undergraduate at university I had a friend whose
father had Parkinson's," she says. "One time I went to visit this
guy at his home and there was this old disabled man sitting in a
wheelchair shaking uncontrollably all hunched up. That was the
image in my mind."
Two years later, McIver's condition is under control and he
leads a normal life. Despite Letts' fears, the disease doesn't give
him tremors but rather increased rigidity. Her initial perceptions
were not unusual, she says, and she hopes that, by raising its
profile, the society will give hope to those with the
condition.
Her professional background made it easier for Letts to phone
the Parkinson's Disease Society and she was co-opted to the board
of trustees in the same year.
"I can't tell you how helpful it is to have a place you can
contact when you are feeling down or when you need information,"
she says.
Information and support is a function that she is keen to expand
as chair of the society.
Personal journey
Letts, who now works as a consultant, is
clear that her personal journey with her husband's Parkinson's will
build on skills she had already developed heading other
organisations.
"When you are chairing a board or running a big organisation
with lots of staff you can lose sight of why you are there but I
don't think I'll ever lose sight of why I'm at the Parkinson's
Disease Society," she says.
Her career in the voluntary sector started in 1985 with
Voluntary Service Overseas before she joined the National Asthma
Campaign (now Asthma UK) in 1989, later becoming its chief
executive.
Her move to that charity was also, in part, sparked by personal
reasons: Letts and her mother, grandmother and brothers all have
asthma. She remained with the charity until 1998, transforming it
into one with national influence, something she describes as among
her proudest achievements.
Frustrating to care staff
She now hopes to lead the Parkinson's Disease Society to a
higher profile in much the same way.
Letts says increasing the profile of Parkinson's is just as
important with social care staff as the public. Parkinson's is a
fluctuating condition where a person can present as capable one
minute and not capable the next, a situation that can prove
frustrating to care staff.
Managing this is dependent on the timing of medication, which is
where care staff can play a role. Letts hopes that more staff will
attend the training her society runs on Parkinson's to bridge the
knowledge gap.
Top of her priorities, however, is the biggest prize of all - a
cure. "I know that everybody who lives with an incurable condition
says this is what we dream," she says. "I'm not saying that the
cure is just around the corner but I do think that very exciting
things are happening."
She is clearly serious about the possibilities because on 29
October the society announced its biggest ever single grant, having
received £5m to fund research to aid early identification and
develop effective treatments.
Letts is aware that her high ambitions could leave her high and
dry. "If I could say to you tomorrow we no longer need the
Parkinson's Disease Society that would be the best day of my life,"
she says.
*Not his real name
Melinda Letts CV
1985-89 Voluntary Services
Overseas
1989-98 National Asthma Campaign
(as chief executive from 1992)
1999-2004 Commissioner, Commission
for Healthcare Improvement/Healthcare
Commission
1998-2004 Chair, Long Term
Conditions Alliance
2003-2009 Director, Ask about
Medicines, a campaign to improve communication between health staff
and patients
Published in 12 November 2009 edition of Community Care
under the heading 'I'll never lose sight of why I'm here'