Interview: Melinda Letts, chair of the Parkinson’s Disease Society

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 diagnosed a few months later.

Letts’ reaction was similar to many. Despite having worked in 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’