Going the distance for Parkinson's

Those of us who’ve spent the winter months wrapped up warm, hiding away from the great outdoors should spare a thought for the hundreds of intrepid runners training for upcoming long-distance events - braving the cold and inspiring people to donate to Parkinson's UK along the way.

Running is a fantastic way to keep fit and raise vital funds for Parkinson’s. We have dedicated teams of fundraisers signed up to a range of events in coming weeks; including the Bath Half Marathon, Brighton and Paris marathons, and the most famous long-distance event of all - the Virgin London Marathon taking place on 17 April 2011.

Included in our London Marathon team this year is comedian Rob Deering, Parkinson's UK staff member Ros Pearse (who has already raised an impressive £2,118) and the truly inspirational John Watkins, who is 73 years old and was diagnosed with Parkinson’s three years ago.

John says: “I’ve always been an active, outdoors type of person. When I was diagnosed with Parkinson’s it took me by surprise. But there’s no point in getting too down about it. I’ve always wanted to do the marathon and thought - why not now?”

Feeling inspired? Why not consider joining one of our teams for a running event taking place later this year, such as the Great North Run or the Royal Parks Half Marathon? Whether you are just starting out or you're an experienced marathon runner there's a race for you. Our running events section provides the full schedule of forthcoming runs and details of how to sign up.

If running isn’t your thing, you can still get involved by volunteering to cheer on our teams at events throughout the year. Contact Kate Welch for more information on 020 7932 1342 or email events@parkinsons.org.uk

Disability benefit reforms: A lack of public understanding?

Controversy continues to roll on around the Government's benefit reform proposals, with the Welfare Reform Bill proposing major changes to benefits issued yesterday.

According to the Government, proposed reforms of Disability Living Allowance (DLA), along with wider changes to benefit assessment processes will "reform and simplify" a system it believes has been riddled with unnecessary complication and frustrating bureaucracy.

However, we remain highly sceptical of the Government's claim that the new system will "support disabled people to live more independent lives".

In a recent interview with The Guardian, Maria Miller, minister for disabled people, said that concerns over the new system was due to "a lack of detailed information" and public understanding of the reforms.

We disagree.

To make swinging cuts to benefits - potentially withdrawing vital funds from the most vulnerable in society - reflects a lack of information and deep misunderstanding from the Government (not among claimants) on the needs of people with conditions such as Parkinson's.

Perhaps most alarming of all, is the proposal to abolish the mobility component of DLA for people in care homes (PDF file), which would withdraw a potential lifeline to many people with the condition.

We have signed up to a letter to The Guardian in response to Maria Miller's comments. And we'll be making every effort to get the Government to make amendments to the Welfare Reform Bill.

How do disability-related benefits make a difference to your independence? How would you be affected in your everyday life if it was taken away? Share your thoughts here.

For more information on the proposed benefit reforms, get in touch with our Social Policy team on 020 7963 9307 or email dobrien@parkinsons.org.uk

Are government cuts destroying 'big society'?

This week, Dame Elisabeth Hoodless, outgoing executive director of the Community Service Volunteers (CSV), heavily criticised the Government's 'big society' vision on BBC News. She argued that far from empowering local communities to volunteer, the 'big society' plans are actually stopping people from making a difference in their local area due to harsh cuts to local council budgets.

With a Liverpool council last week deciding to abandon a 'big society' project because they claimed cuts were undermining voluntary groups supposed to take over some services, the 'big society' debate is sure to continue in the weeks and months ahead.

In the wake of Dame Hoodless's outburst, David Cameron was forced to fend off sharp criticism yesterday in response to his announcement that £200million will be invested into the 'big society' bank. During Primer Minister's Questions, opposition leader Ed Milliband said that society was becoming "smaller and weaker, not bigger and stronger" because the Government was cutting "too far and too fast".

Do you agree with Ed Milliband and Dame Hoodless? If you're a member of a local Parkinson's group or any voluntary group in the local community, are you noticing support and funding opportunities drying up as a result of the cuts? Or would you like to speak up in support of the 'big society' concept?

Share your thoughts here.

Have your say on the Government's health reforms

MPs will start important discussions about the Health and Social Care Bill in Parliament today. The controversial Bill proposes major changes to the way health and social care works in England and we're concerned about how this could affect people with Parkinson's.

At the moment, most of the decisions about what health care people with Parkinson's receive, for example whether there is a Parkinson's nurse, are made by a primary care trust (PCT). In the future, these decisions will be made by GPs who will group together to form consortia.

We're pleased that the Government is giving more choice to people over who provides treatment for Parkinson's. For example, someone with Parkinson's will have the right to choose their neurologist. The Government wants people to vote with their feet and choose top quality specialists. However, people might not be able to travel to a good neurologist. We need to make sure that everyone with Parkinson's has access to good quality health and social care.

We want MPs to listen to the voice of people who rely on the NHS and social care, and improve the Bill. We're asking the Government to strengthen its existing plans by making it compulsory for GPs to ask charities like ours, as well as people who use the NHS, what healthcare should be available.

We have written to MPs to ask them to raise these issues in Parliament. And we want your help to make sure that people with Parkinson's are listened to. Find out how you can take action.

Science Under Attack

On Monday night, Nobel-winning geneticist and president of the Royal Society, Sir Paul Nurse presented the BBC2 Horizon documentary, Science Under Attack – an exploration of growing public scepticism and hostility towards modern science.

The programme took a fascinating look at how extreme political and ideological ideas have weaved their way into mainstream media and public debate on key scientific issues, threatening to derail the progress of scientific innovation. The importance of using scientific evidence and the power of experiment in informing opinion on both sides of these debates was stressed.

Reflecting on cases such as the 'ClimateGate' controversy of November 2009, Sir Paul warns that scientists must engage more openly with the public, whom he says, they must not take for granted.

He states: "Earning trust requires more than just focusing on the science. We have to communicate it effectively too. Scientists have to talk to the media… Because if we do not do that, it will be filled by others who don't understand the science and who may be driven by politics or ideology."

This is of crucial and universal importance to scientists everywhere – including the Parkinson's research community. We always strive to effectively communicate our research work and ensure that we remain the most trusted UK authority on all things relating to Parkinson's.

Our 5-year research strategy sets out our plans to focus on finding a cure for Parkinson's.

And there are many ways that you can get involved in Parkinson's research.