A call to the world from Glasgow

Steve Ford It's very exciting when experts and people with Parkinson's get together from all around the world to share the latest developments in Parkinson's disease - so far this has only happened once.

But in 2010, the second World Parkinson’s Congress will be held in the UK, and the Parkinson’s Disease Society is one of the four leading partners. We’ve made a financial contribution, I am on the Steering Group and PDS staff are already involved in various planning projects.

The Congress, which takes place in Glasgow from September 28 to 1 October 2010, is open to anyone touched by Parkinson’s - and that’s what makes it unique. Scientists, healthcare professionals, experts in support and educators from over 50 countries will attend, and it's hoped a third of attendees will be people with Parkinson’s, their carers and families.

We hope that this event will generate really significant awareness of Parkinson's across the UK, and help us play a stronger role in this international community - sharing our best practice and learning from others.

The Parkinson’s Disease Society website will have more information about our involvement over the next few months. In the meantime put the date in your diary and let’s look forward to working together.

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

Increase dementia funding or pay the price

Dr Kieran BreenThis week I added my name to a list of scientists and experts calling on the Government to triple the amount of money invested in dementia research

Dementia affects about 700,000 people in the UK, and is present in some form in 1 in 3 of the 120,000 people with Parkinson's.

But there still isn't the same form of funding from the Government for dementia research as for other conditions like cancer. This means that even though the UK has some of the greatest talent in research, a lack of funding is stopping us finding a way to slow or even reverse the effects of dementia.

In a generation, there will be more than 1.4million people living with dementia in the UK. In economic terms this will cost the UK £50billion per year for care of those people with dementia, not to mention those with the 'double whammy' of Parkinson's disease with dementia.

The Parkinson's Disease Society is currently investing £1.2million in a five year dementia research project, but if the Government triples its annual support for dementia research over five years, this would add £96million to the cause.

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

Support our Fair Care for Parkinson's campaign

Steve FordIt was encouraging to see the coverage of our Fair Care for Parkinson's campaign last week. This followed the publication of the All Party Parliamentary Group's Inquiry into Parkinson's disease services. This was picked up by a number of radio stations, newspapers and online news

We launched the campaign in Parliament last Wednesday and were encouraged by the number of MPs and Lords who attended. Jim Henry, from Northern Ireland, and Brian Lymberry, from London, gave powerful presentations on their experiences of accessing health and social care.

Jim's powerful message compared the poor service he got for his Parkinson's with the comprehensive care given at the time he was diagnosed with diabetes.

Jim Henry is pictured right speaking at the parliamentary launch.

Brian highlighted how the failure to provide people with the necessary preventative care and support costs more in avoidable NHS treatment and social care support in the long run. So there is no excuse for the inequalities in services that people with Parkinson’s are experiencing.

In my talk, I made the point that we shouldn't be surprised that services are so poor for so many people. There are currently no effective mechanisms to make sure that local services meet national guidelines. So it will always be a lottery until the Governments of the UK give this a strong national focus.

That is why I asked Ann Keen, the Health Minister, to undertake a mid term review of the National Service Framework (NSF) for Long term neurological conditions for England. In 2010, the NSF will be halfway through its 10 year implementation so now is a perfect time for the Government to review progress and make sure that NHS and Social Care make this a priority.

Ann Keen said that she welcomed the inquiry and supports our campaign. I am looking forward to meeting with her to soon, to see what this really means in practice.

We want Fair Care for all people with Parkinson's and I want all members and supporters to help us get our message across by supporting our Fair Care for Parkinson's campaign. Visit www.parkinsons.org.uk/faircare

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

Fair Care for Parkinson's

Val Buxton 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

Steve Ford 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