The challenges of devolution

Steve Ford

The Welsh Assembly Government has just published a consultation paper with plans for changing the way social care works in Wales.

The consultation is very similar to the one that ended in England this month, Shaping the Future of Care Together, which proposed plans for a National Care Service in England.

Even though some of the questions the two governments ask are similar – like how care should be paid for, and what should care look like – the care systems themselves are devolved between England and Wales so our campaigning work has to be separate.

In our response to the English consultation, we argued against the UK Government’s plans to abolish Attendance Allowance – a UK-wide benefit - to help pay for a new England-only care system.

In Wales, we will recommend a social care system suitable for people with Parkinson’s, utilising our specialist Campaigns Officer based in the country.

But we will also continue to argue against scrapping Attendance Allowance, even though this isn’t something the Welsh Assembly Government controls. They are consulting on the issue so we hope that through the Welsh Assembly Government, we can in turn influence the UK Government.

We will be responding in full to the Welsh Assembly Government’s consultation on social care. If you live in Wales and want to have your say on how social care should look, you can send in your own feedback on the consultation document

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

Working together to find a cure

Dr Kieran Breen Teamwork is vital as we work towards a cure for Parkinson's - not only between researchers but also between funding organisations.

And momentum is gathering. I'm delighted that our recent £5million investment in The Monument Discovery Award has been matched by funding from The Medical Research Council (MRC) and the Wellcome Trust for a complementary study.

As part of the MRC/Wellcome Trust’s Neurodegenerative Diseases Initiative, a consortium of Parkinson's researchers has been awarded £5.3million to find and understand the genes that increase the risk of developing Parkinson's.

The project will be led by Professors Nick Wood, Anthony Schapira and John Hardy – 3 leading Parkinson's researchers who are also funded by the Parkinson's Disease Society.

Up until the late 1990s no one thought that genes played any part in Parkinson's. But now we know there are many genes involved, including 2 key genes discovered by Professor Nick Wood in 2004 in a Parkinson's Disease Society-funded study

While we have made major steps in unravelling the causes of Parkinson's, there is still a long way to go.

Together we are injecting over £10million into UK Parkinson's research over the next 5 years, but we still need to do more to find a cure.

We are totally dependent on voluntary donations, so to help us get to a cure faster, make a donation now

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

Focus on health reform

Steve Ford

I’ve been following what Barack Obama has been saying on Twitter and in the news about health reform. He wants to make sure more Americans have some kind of insurance cover and that the spiralling costs of health care are brought under control.

I was in the US last year and spoke to all the Parkinson's organisations about this. It was strange that it did not seem to be a big issue for them, maybe because most people with Parkinson's are older and qualify for state funding.

I heard a few stories of individuals who couldn't afford the best drugs – but I notice that one of the charities I visited has not decided to focus their campaigning on health insurance - but instead on other Parkinson's specific issues. In contrast, we campaign on wider issues like equal access to healthcare through our Fair Care for Parkinson's campaign.

People are passionate on both sides of the debate and our National Health Service has been dragged into the argument. Some see the NHS as a model of a fair and efficient system, but others see it as a bureaucracy where faceless organisations made decisions that impact on patients' treatment.

I know that here in the UK, many people with Parkinson's feel unhappy with their treatment, because they disagree with the choices made for them by health bodies.

In England, the health care system has started to enable patients to choose their own providers. The social care system has introduced individual budgets so people can have more control over the services they get.

I'm really keen to hear from people affected by Parkinson's whether they feel they have enough choice over their health or social care, and how this could be made better. If you want to share your views, we're looking for people to take part in a discussion session in London at our National Office on Friday 11 December. If you're interested in attending - or have any questions - please email or post your thoughts below.

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

China trek success

The participants from Trek China have been back in the UK for just over two weeks and have so far raised an incredible £119,000!

Karen Swindells, 49 from Cheshire, has Parkinson's and was one of the 36 people who took part in the nine day trek along the Great Wall of China.

Karen was diagnosed 18 months ago, and told us about the positive impact the trip has had on her. Meeting other people with Parkinson's along the way and visiting China was a life changing experience.

Karen said she hoped the money raised would help improve the lives of people like her, living with Parkinson’s. And it is because of people like Karen that we can continue our work supporting everyone affected by Parkinson's.

You can see photos of our team in China on our Flickr site and if you want to join in the fun, take a look at other challenges coming up.

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