Fair Care for Parkinson's

The Parkinson's Disease Society is launching its new Fair Care for Parkinson's campaign tonight at a parliamentary reception, to make sure people affected by Parkinson's get the decent, appropriate care they need - wherever they live.

The campaign is launching in response to findings of a parliamentary inquiry into Parkinson's disease services that has been published today. The inquiry report, 'Please mind the gap: Parkinson's disease services today', documents stark inequalities in access to services across the UK.

Through Fair Care for Parkinson's, we're campaigning for the same focus on service improvement for Parkinson's that exists for other conditions. We want enough skilled staff in place right across the country to make sure that good quality care for Parkinson's is no longer a postcode lottery

This isn't an issue about resources. Evidence shows that Parkinson's services that meet national guidelines are cost effective - they improve quality of care and clinical outcomes.

It isn't an issue about locality - why should people with Parkinson's be disadvantaged just because of where they live? This is an issue of social justice and we want national action to tackle it.

We're confident that faced with compelling evidence from today's report, UK governments will respond to the challenge.

Get involved and take action now to help make sure all people affected by Parkinson's - wherever they live in the UK - are given the care they deserve.

Val Buxton is Director of Policy and Campaigns at the Parkinson's Disease Society

Parkinson's services a postcode lottery

A visit to the Telford and Wrekin Support Group this week really highlighted to me the different levels of health and social services that people with Parkinson's experience - depending on where they live - and the unfairness of it all.

One man told me how having the support of a Parkinson's Disease Nurse Specialist is the most important aspect of his care, and he couldn't praise her more. But a group from Bridgnorth didn't have access to a nurse and felt that they were really missing out. They also didn't get the regular time with their GP to talk through all the challenges of living with Parkinson's, and spoke of long waits to see the doctor and cancelled appointments.

Next week, a report will be published by the All Party Parliamentary Group for Parkinson's that will show evidence of these inconsistencies we already know about, and recommend ways that the Government can fix these problems.

The Parkinson's Disease Society will be campaigning to make sure the recommendations from the report are carried out by the Government - and if you want to get involved, you can join the National Campaigns Network now.

Please also tell us your experiences of good or bad Parkinson's services, wherever you are in the UK. With your help, we can make things fairer for people with Parkinson's.

Steve Ford is Chief Executive of the Parkinson's Disease Society

Educating the experts: working with occupational therapists

This week I’ve been in sunny Brighton for the 33rd Annual Conference and Exhibition of the College of Occupational Therapists. This is the second year the Parkinson’s Disease Society has provided educational information at the event, and it is really refreshing how well it has all been received by the delegates.

We know occupational therapy is a valuable treatment for the physical effects of Parkinson's, and good therapy can really help people maintain independence with tasks like dressing, cooking and getting out and about.

Some of our recent research with therapists found that no one agreed what the best treatments were for Parkinson’s, so we approached the College of Occupational Therapists to work with us on some detailed 'Best Practice Guidelines' on Parkinson's management for professionals.

The occupational therapists I spoke to in Brighton were delighted to talk to me about their ideas for the 'Best Practice Guidelines', which they see helping them to enhance the quality of life for people living with Parkinson's. The guidelines are due to be published in late September, 2009.

Daiga Heisters is National Education Advisor at the Parkinson's Disease Society

Fundraising in the credit crunch

On Sunday, 21 June, the BBC Radio 4 Appeal, which takes place each week, will feature journalist and presenter John Stapleton on behalf of the Parkinson's Disease Society.

John Stapleton - who recently supported us by signing up to our Parkinson's Brain Donor Register during Parkinson's Awareness Week - will appeal for donations in one of the most challenging economic climates that many of us can remember. But the search for a cure for Parkinson's is incredibly important, meaning we must work harder to remind the cash-strapped public why.

Recent appeals, like The Time is Now, launched during Parkinson's Awareness Week, showed that people are still willing to donate despite the financial difficulties they may be facing - but this doesn't make us complacent. Instead, we are so very grateful that our supporters are able to continue to fund our work.

Please help us make this campaign a success by encouraging friends and family to tune in to BBC Radio 4 (92-95 FM) on Sunday at 7.55am or 9.26pm.

You can also donate to the Parkinson's Disease Society on our website.

Paul Jackson-Clark is Director of Fundraising at the Parkinson's Disease Society

Exercising for a fit and healthy brain

Last week I was at the Movement Disorder Society's 13th International Congress of Parkinson's Disease and Movement Disorders in Paris, along with 4,500 other researchers from around the world.

There were lots of reports from researchers, sharing information and hope from different studies and trials around the world. But one thing that really stood out to me was a session from Carl Cotman, a researcher from the US who showed that exercising actually changes the way the brain works.

Parkinson's is all about the brain - dopamine-producing brain cells die, causing the symptoms - and as the cells keep dying, so the condition progresses. People with Parkinson's are also at a much higher risk of dementia, which means anything to keep the brain 'fit' can only be a good thing.

Carl's work put rats on treadmills and tested them in mazes. Rats who exercised had better memory and learning! And now there are studies underway in the Netherlands that take this breakthrough further, testing if exercise for people with Parkinson's could slow the progression of the condition.

The Parkinson's Disease Society's special interest group SPRING is holding a conference in September this year to bring researchers together to explore how exercise can be used as a 'treatment' for Parkinson’s in the same way that medication is used now. Maybe there will even be a section on how Nintendo Wii can help Parkinson's!

If you have found that exercising helps your Parkinson's, please let us know as we'd love to hear from you.

Dr Kieran Breen is Director of Research and Development at the Parkinson's Disease Society