Fighting for our Parkinson's nurses

Changes to the NHS are still being debated in Parliament and so there is huge uncertainty over commissioning arrangements in parts of the UK.

However, what there's no uncertainty about is the massive difference Parkinson's nurses make to the lives of people with the condition.

This week members of our Worthing and District Branch (pictured right) presented their 1,267 signature-strong petition to the GP consortia to demand a specialist Parkinson's nurse to support the 600 people with Parkinson's, and their families and carers, in southern West Sussex. This is a position which had previously been agreed by the Primary Care Trust.

Our chief executive Steve Ford was also there to support the campaign and champion the vital role of Parkinson's nurses.

This is the culmination of weeks of hard work and campaigning, with Lucy McGrath, our South East influence and service development officer, starting conversations about appointing a nurse for the Coastal West Sussex area back in 2009. 2 Parkinson's nurses covering the whole of the county were agreed by the PCT but in September 2010, the new GP consortia declined to support the post in the south.

The difference a nurse would make to people in West Sussex is just immeasurable. And we know there are many other areas where people with Parkinson's do not have access to one of the UK's 310 Parkinson's nurses.

That's why we are working across the country to make sure everyone has access to this vital service - wherever they live in the UK.

Do you have a Parkinson's nurse where you live? If not, what difference would it make to your life? Or do you have a nurse who you couldn't do without?

Tell us your stories. Email or leave a comment below.

Bringing researchers together to tackle animal models

This week leading researchers came together at our seventh Special Parkinson's Research Interest Group (SPRING) conference in London to debate how we can best use animal models to learn more about Parkinson's (PDF file).

Developing better animal models to study Parkinson's is one of 4 key challenges for research that we're tackling as part of our 5-year research strategy to find a cure for the condition.

The meeting attracted international experts, including Professor Jose Obeso from the University of Navarra in Spain and Professor J Timothy Greenamyre from the University of Pittsburgh in the US.

We also heard a range of stimulating talks with key contributions from Parkinson's UK-funded researchers, including:

Our Director of Research and Development Dr Kieran Breen comments:

"It was great to see so many Parkinson's UK-funded researchers presenting their groundbreaking work. Accurate models are the key to improved drug screening and swifter movement into clinical trials for the best drugs.

"But we still urgently need better models for Parkinson's that accurately reflect what happens in the human brain to help us investigate the different stages of the condition."

Hardest Hit march against disability benefit cuts

Yesterday afternoon an estimated 8,000 people, including many with Parkinson's, marched through Westminster. We were protesting against the Government's proposed cuts to disability benefits as part of the Hardest Hit campaign.

Image right: Jane Asher leads the Hardest Hit campaign past Big Ben with other marchers

The march was set up by various disability charities to send a strong message to Government: to stop making cuts to benefits that will hit the disabled and their families the hardest.

Our president Jane Asher, spoke at the pre-march rally before proudly leading campaigners past Parliament. She said: "The Government's cuts to disability benefits risk leaving the vulnerable people I represent, impoverished, confined to their homes and without access to appropriate services and support networks.

"People with disabilities are being hit from all sides. I am calling on the Government, with all of you, to put a stop to these cuts; they are cruel, they are misguided, and they are badly drafted."

As the photos show, the atmosphere out in the crowd was good-natured but emotional. Many people with Parkinson's made sure their voices were heard. We hope the Government listened.

Image left: Sachin Shah from our Campaigns team with Tina Walker, who has Parkinson's

See lots more photos from the march on Flickr and add your own photos if you were there.

And watch this excellent video from the charity Scope if you're in any doubt as to why people were protesting.

Slowing down UK stem cell research?

The most amazing thing about stem cells is that they can be transformed into any cells in the body, including nerve cells. And it's hoped that they may ultimately be able to replace the nerve cells that have died in Parkinson's.

We've made fantastic progress with this type of research in the past few years. As well as using embryonic stem cells, we can now take skin cells from an individual and transform them directly into nerve cells. This is cutting edge science that offers real hope in the future for people with Parkinson's.

But a recent ruling from the European Court of Justice may slow down this vital research. They ruled that stem cells cannot be patented by the company that generates them. The problem refers to who owns the cells.

So what does this actually mean for stem cell researchers? Well, in reality you can't actually patent an embryonic stem cell itself - but you can patent the cell that derives from it. This latest ruling may change that.

Being realistic, biotech companies will only invest in research if they are likely to get a return for their investment. If they can't patent the cells, it just doesn't make good business sense to pay for the research, only for somebody else to come along and use them.

This could significantly decrease the amount of stem cell research done in Europe. Our ambitious 5-year research strategy is pushing our search for a cure to a new level, so we'll be watching this really closely and hoping there's no impact on the UK.

To find out more about stem cell research in Europe visit