Reflections: Our achievements in 2009

It's the end of our 40th Anniversary year and I'm snowed in at home with seemingly no trains running out of Kent! So it's a good opportunity to reflect on the past 12 months.

It's really been a fantastic year in so many ways. We've had record number of new Parkinson's nurses appointed in all parts of the UK. Our new national network of Information and Support Workers is now supporting people with Parkinson's across the whole of the UK.

In campaigning, we've pushed our message through the Fair Care for Parkinson's campaign across to decision makers in all 4 UK countries, and have a review of neurology services on the agenda for England in 2010.

We launched the Parkinson's Brain Donor Appeal in April during our Awareness Week, to encourage more people to pledge to donate their brains to Parkinson's research. 2,332 people have signed up to the register this year, more than doubling the original number of people on the list.

And the success of the appeal hit the headlines today, with Dr Kieran Breen, our Director of Research and Development, appearing on BBC Breakfast, Sky News and the Today Programme. I’d like to thank everyone who has signed up so far but we still need more people to sign up to the register. This has been our most successful media campaign to date, with over 700 pieces of coverage and 2 communications awards

But looking back, what has really encouraged me has been the way that the voice of people living with Parkinson's has had a much stronger influence than ever before. It's this voice that gives us the passion and determination to build on our achievements in 2010.

Merry Christmas and a Happy New Year!

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

2009: A breakthrough year

It's been a fantastic year for research at the Parkinson's Disease Society, and a fitting celebration of our 40th Anniversary and four decades of discovery

This year we have invested more than £4million in 24 cutting edge research projects, exploring everything from what causes Parkinson's, to better treatments and a cure

Parkinson's Awareness Week in April saw the public respond in their thousands to our Brain Donor Appeal. We smashed our target to double the number of people on our brain donor register by the end of 2009 - which will boost Parkinson's research all over the world.

In August, research we funded at the University of Sheffield uncovered a major new lead for Parkinson's. Researchers found that stimulating a pathway inside nerve cells may be the key to developing new drugs that could slow or halt the progression of the condition.

But perhaps the thing I'm most excited about is The Monument Discovery Award. This groundbreaking project will be the largest we've ever funded at £5million over 5 years. It brings together a world-class team of researchers at the University of Oxford to accelerate progress towards a cure for Parkinson's.

Thanks to you we are making a difference and building momentum towards our ultimate goal – a cure.

I don't know about you but I can't wait for 2010.

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

New treatments: thinking outside the box

Last week I joined almost 600 medical research executives, scientists, policy makers, and funders for the Partnering for Cures meeting in New York.

The first meeting of its kind, it aimed to bridge the gap between charitable and medical research organisations like the Parkinson’s Disease Society, and the biotechnology and pharmaceutical industries.

Partnering for Cures is the brainchild of FasterCures - an organisation whose goal is to accelerate the pace of discovery and development of new therapies.

The diverse programme explored innovative ways of working which will help us speed up the development of new treatments.

It was interesting to hear Michael Milken the Chairman of FasterCures, and Jeffrey Kindler CEO and Chairman of the Board at Pfizer discuss the challenges facing medical research.

It got me thinking about what we can do. I want to:

• inspire young scientists to choose Parkinson’s research through our career development funding scheme
• encourage groundbreaking research through our innovation grants scheme
• join forces with companies to explore exciting research prospects together
• collaborate with organisations like DeNDRoN to speed up and coordinate effective clinical trials for new treatments

By thinking ‘outside the box’ when it comes to research, we can open more doors to finding a cure for Parkinson’s faster. It’s a message I’ll be passing on to my charitable and research colleagues.

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

Giving a voice to carers

I was talking to a carer recently who mentioned how easy it is for her to neglect her own needs, and how lonely and isolating life can be at times.

Today we celebrate the tenth Carers Rights Day, set up by the charity Carers UK. The day aims to shout about the great work that carers do, and make sure that carers are aware of the benefits and support they are entitled to.

Dave Clark from our Policy and Campaigns team used to work at Carers UK and helped organise that first Carers Rights Day. He has been telling me this week about how much the day has grown in importance. On that first day ten years ago, just over 100 groups ran events.

This year around 1500 local groups are taking part, from carers' centres, GPs' surgeries, councils, libraries, charities, hospices and many other community groups - reflecting the large numbers of carers who struggle to find out what support is available to them.

We are committed to supporting carers of people with Parkinson’s, and this year we have held our own carers' information events in every region of the UK. It’s shocking that despite increased awareness of the true cost of caring, carers still get the lowest income replacement benefit, at just £53.10 per week.

We support the Carers Poverty Charter to reform carers' benefits, and you can add your support to this campaign.

Our own free publication, The Carer's Guide, offers help and advice on all aspects of living with someone with Parkinson’s, and and our online discussion forum has a space where carers can share experiences and support each other through the changing circumstances that Parkinson’s can bring.

Let’s hear it for all carers in the UK.

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

The challenges of devolution

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

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

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 campaigns@parkinsons.org.uk 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

£5million to help find a cure for Parkinson's

This week a large grant-making trust has donated £5million to fund truly groundbreaking research into Parkinson’s. It's the biggest donation we have ever received.

When the trust initially approached us, it gave us an opportunity to step back and reflect on how far we have progressed in our goal to find a cure for the condition.

It’s true to say that while there have been great leaps forward in our understanding of how Parkinson’s develops, and how we can better treat the symptoms, we still don’t know exactly what causes Parkinson’s in the first place.

The Monument Discovery Award is different because it brings together different strands of leading scientists and clinicians involved in Parkinson’s research, who are passionate about a single goal – to discover what causes Parkinson’s.

By understanding the fundamental reasons why people develop Parkinson’s, we can accelerate our search for a cure and make our aim of ending Parkinson’s a reality.

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

Compulsive behaviour in Parkinson's

An article in the Daily Telegraph this week illustrated the huge impact that compulsive behaviour can have on the lives of some people with Parkinson's.

Compulsions like binge eating, gambling and irresistible sexual urges have been associated with some Parkinson’s medication, particularly dopamine agonists.

For most people who take them, these drugs are very helpful, but research suggests that for around 14% they may be associated with behaviours that can lead to considerable distress, both for those affected and the people close to them.

Earlier this year I came across a man whose wife watched his personality change from within months of taking the drugs. He became violent, angry and bitter, with an increasing libido and interest in 'inappropriate' sex. He eventually moved out, had an affair and was arrested for a violent attack on his new girlfriend.

Eventually, a new consultant nurse adjusted the medication. His personality has now returned to normal - and he's back with his wife.

This man was unaware of changes in his personality, so it's crucial that both people with Parkinson's and their family and friends are alert to what can happen and tell the specialist nurse, GP or consultant as soon as possible. Medication can then be altered professionally.

For anyone affected, confidential advice and support is available from the Parkinson's Disease Society's freephone Helpline 0808 800 0303

It’s really important for us to raise awareness of this issue, so if you have a story you would like to share, please email us at pr@parkinsons.org.uk

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

Working together to improve clinical research

This week, the Dementias and Neurodegenerative Diseases Research Network (DeNDRoN) – who work to coordinate clinical trials – held their annual conference in Southampton.

DeNDRoN was set up in 2005 to support clinical research into neurodegenerative conditions like Parkinson’s. Clinical trials are essential for testing new treatments and they will play a vital role in finding a cure for the condition.

People living with Parkinson’s have a crucial role to play. Not only in taking part in trials, but also in shaping the design of clinical research studies. Involving real people helps make research more relevant and more efficient.

A packed programme explored how healthcare professionals, researchers and people affected by neurodegenerative conditions could work together to improve the quality and speed of clinical research.

Claire Bale and Michelle Bendix from the Parkinson’s Disease Society (PDS) research team along with researchers currently funded by the PDS and people with Parkinson’s, spoke with representatives from DeNDRoN about how to make Parkinson's research more effective.

We want there to be easier ways for people with Parkinson's to get involved in research and working closely with organisations like DeNDRoN will help this happen. We can't do it all by ourselves.

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

Campaigning at Tory Conference

At the Conservative Party Conference in Manchester this week, representatives of our Policy and Campaigns team, along with Richard Brown who has Parkinson's, met with MPs and Shadow Ministers to discuss issues affecting people with Parkinson's. They also talked to other charities about the work we can do together to influence policies.

Anjuli Veall, Social Policy and Campaigns Manager (left) and Clare Moonan, Health Policy and Campaigns Manager (above right) spoke to Andrew Lansley MP, Shadow Secretary of State for Health (centre) about the Fair Care for Parkinson's Campaign.

Richard Brown (above right) talked to Rt Hon Ken Clarke MP, Shadow Secretary of State for Business (above left).

Anjuli Veall tried out the MS Society's 'MS Simulator'.

Richard Brown spoke at our fringe event about his experiences living with Parkinson's, and was joined by Mike Penning MP, Shadow Minister for Health (left) who talked about his plans to eradicate the postcode lottery for health and social services.

Emily Cogbill, Parliamentary Officer (above left) and Clare Moonan talked to Mark Simmonds MP, Shadow Minister for Health (centre) about research into finding a cure for Parkinson's. They also spoke with Anne Milton MP and Stephen O'Brien MP, Shadow Ministers for Health.

The Conservative Party conference ended yesterday, but the media is still debating the Party's announcements on incapacity benefits and NICE guidelines. If the Conservatives were to win the general election, these policies could have a huge impact for people with Parkinson's.

Tina tackles MPs in Brighton

Tina Walker, Parkinson's Disease Society member and Chair of the Younger Parkinson’s Network brought the voice of people affected by Parkinson’s right to the heart of the Labour Party Conference this week.

Tina, who has Parkinson's, spoke powerfully at our packed fringe event, telling MPs and Party members about the difficulties people with Parkinson’s can face getting the services they need.

During the conference Tina managed to talk to every single member of the Labour health team about Parkinson’s issues. She shared a platform with Minister of State Mike O’Brian, raised research funding with Public Health Minister, Gillian Merron, and discussed the importance of good social care with Care Minister Phil Hope.

She extracted assurances about taking forward our Fair Care for Parkinson’s goals from Ann Keen, Under Secretary of State, and even got the ear of Andy Burnham, the Secretary of State himself (pictured with Tina above).

Tina also tackled Work and Pensions Minister Jonathan Shaw (pictured left) about problems with Employment and Support Allowance.

The warm and positive response Tina got from Ministers showed how crucial people’s first-hand experiences are in getting our message across.

That’s why it’s so important that as many people as possible sign up to our National Campaigns Network –so we can really make sure that people with Parkinson’s get heard and can change things for the better.

Lib Dem party conference: can localised health systems work?

This week I’ve been at the Liberal Democrat Party Conference where the word on every party spokesperson’s lips has been ‘localism’. “There’s been too much central control and not enough local freedom,” they tell us.

In the health system, the Lib Dem party spokespeople want to slash central targets and give local health professionals more say. But what does this mean for people affected by Parkinson’s?

We already see huge variations in the service people get, depending on where they live - so with no central drive to get national quality standards for Parkinson’s and other neurological services implemented, won’t inequalities get even worse?

That was the hot topic for our fringe event at the conference called “From Whitehall to the town hall – no longer a national health service?”

PDS member Trevor Martin (pictured right) told the audience about the difficulties people with Parkinson’s already face getting key services like specialist nursing and therapy, depending on where they live. The message was clear that everyone must be guaranteed access to health and social care that meets their needs, regardless of where decisions are made.

This is a message we’ll be taking to the Labour and Conservative conferences, running events and meetings with ministers and spokespeople, trying to make sure that whoever forms the next government, has Fair Care for Parkinson’s high on their agenda.

Val Buxton is Director of Policy, Campaigns and Information at the Parkinson’s Disease Society

Listen to end discrimination

We've been following – and contributing to – news today about a woman with Parkinson's disease in Gloucester who was asked not to attend her table tennis club on doubles day, due to fears she might injure other players.

This case is typical of the misperceptions people with Parkinson's may face. As Parkinson's is such an individual and fluctuating condition, it's really important that service providers talk to people affected to find out more about how the condition affects them.

We do hear about situations that could be interpreted as acts of disability discrimination. But it's often a lack of understanding that lies behind them.

The Parkinson's Disease Society aims to raise awareness of Parkinson's among the general public, Government, health and social care professionals and other organisations.

We also campaign to make sure that service providers are aware of anti-discrimination laws and implement them properly - including the requirement to make 'reasonable adjustments' to the way services are offered so that people with disabilities can access them.

We hope that all service providers will take the time to listen to their users - and take an inclusive approach - regardless of whether they are required to by law.

Our free Helpline offers support and advice. If you have experienced any form of discrimination phone 0808 800 0303.

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

Inspiration for the future

This weekend I met Trevor Martin at our 2009 Annual Conference in Stratford-upon-Avon. Trevor, from the Weymouth and Dorchester Branch, is here with his wife Katherine. He told me about the great work they are doing by going into care homes in their local area to speak about their experience of living with Parkinson's.

Here at the conference, our members have also been getting involved by sharing their experiences and delivering our messages about our vision for the future - both up on the stage and in workshops.

This year's conference is a really important event for the organisation as we work together with members to build our ambitious plans for the next five years. I am making the most of the opportunity to listen to people with Parkinson’s and carers about the issues that are most important to them, to make sure we are on the right track.

I have heard so many great examples of how local groups and branches are reaching out to people with Parkinson's of all ages, attracting new supporters and influencing health professionals. In Wales, one of our very active members persuaded a local GP practice to give him a slot in their training day. Other branches around the UK have been holding breakfast and lunchtime meetings, to fit around the GPs' busy schedules and help them understand what it's like living with the condition.

What I find so encouraging about events like this conference is the shared determination to make our vision a reality - that we will find a cure, and improve life for everyone affected by Parkinson's.

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

The Annual Conference kicks off

The Parkinson's Disease Society's Annual Conference starts today in Stratford-upon-Avon. There is a great atmosphere here as branch members, volunteers and staff meet and talk.

It's a popular event, and although places are limited - and completely filled - we make sure representatives can be here from as many branches and support groups as possible. It is a rare chance to share ideas, tips and advice, which is a really valuable part of the conference.

This year delegates can take part in workshops on research, campaigning and branch standards - and there's even a laughter workshop and Pilates class. There will be presentations on where the PDS is headed - and this year being our 40th Anniversary we'll be looking back on our successes too.

But it's not all work - I'm looking forward to Saturday night's karaoke session after the Gala dinner and dance, often an event to remember!

Updates from the conference will be posted on Twitter, Facebook and on our website

Rachel Raymond is Director of Community Services at the Parkinson's Disease Society

Volunteering benefits everyone

News continues to focus on the lack of job opportunities available, with new graduates amongst the latest to suffer the effects of the recession.

If you are looking for work, volunteering can be a positive and constructive way to spend your free time. The right opportunity can also help develop your communication skills, provide experience of working in a team and demonstrate your motivation to prospective employers. Even if you aren't looking for work, volunteering is a great way to meet new people and get involved in your local community.

At the Parkinson's Disease Society (PDS) we rely on volunteers to run our network of branches and support groups, take part in fundraising events and help raise awareness of the condition. There are a number of ways you can get involved

In the lead up to Christmas, we’re trying to find volunteers to donate their time to sell PDS Christmas cards as part of the Cards for Good Causes initiative. Cards for Good Causes is a non-profit organisation that sells Christmas cards on behalf of more than 320 charities including the PDS in temporary shops across the UK.

As well as gaining valuable work experience, you could also help thousands of people affected by Parkinson’s, as we’ll receive a minimum of 81p for every £1 sold. You can find out more about how to get involved by visiting the Cards for Good Causes page on our website.

For information on other volunteering opportunities where you live, contact the PDS Branch and Volunteer Support Officer in your region

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

A letter from the PM

It was a surprise to come back from holiday and find a letter from the Prime Minister waiting for me!

Gordon Brown was responding to more than 250 letters from people supporting our Fair Care for Parkinson's campaign.

Campaigning for change can take many forms, but letter writing from people who are actually affected by the issues can have a real impact, as the PM's response shows.

If you haven't written yet, it's not too late! If you're in England you can email Gordon Brown, or in Northern Ireland, email the Office of the First Minister and Deputy First Minister. Our quick and easy email templates will help you, and you’ll have a chance to customise the text if you wish.

If you live in Scotland or Wales, sign up to our National Campaigns Network and we’ll let you know as soon as there’s an action for you to take.

Please help us keep up the pressure - it will be key for us in getting recognition of the need for action to improve neurological services.

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

Tweeting about a neurological 'tsar'

The BBC reported this week that Labour has appointed a 'Twitter tsar' to improve the party's use of 'social media' before the general election.

In itself, I think it's a good idea to get more in touch with new media. The Parkinson's Disease Society reaches new people through Facebook and Twitter and other social networking sites. And our latest campaign - Fair Care for Parkinson's, allows people to email Gordon Brown as well as write to him.

But even though Labour's new post isn't publicly funded - the appointment of another 'tsar' is frustrating given there still isn't an equivalent post to advise on neurological services.

While the exact number of Twitter users is not known, estimates indicate that there are around 1 million users of the service in the UK. In contrast there are 10 million people with neurological conditions living in the UK, 120,000 of those with Parkinson's.

A tsar can provide leadership on key areas of policy, and tsars for other health conditions like cancer and stroke have lead to huge improvements in the way the conditions are treated.

It's important to stay ahead of the game with communications – but I wish the Government would also acknowledge the ways that 10 million people with neurological conditions could benefit from the same leadership that Twitter will.

Nicola Brian is Director of Communications at the Parkinson's Disease Society

Using appropriate animal models

This week, I was excited to see new research, in Neurobiology of Disease, showing that gene therapy can improve the condition of mature monkeys with Parkinson's-like symptoms.

This study is groundbreaking because the researchers used older monkeys, the equivalent of 55 year old humans, instead of the 'teenage' animals that are usually used.

Younger animals tend to be used in science because they are more easily available. But, for age-related conditions like Parkinson's, where the vast majority of people are over 50, this simply doesn’t make sense.

Using inappropriate animal models means new treatments can look promising but do not work for real people with Parkinson's. This is not only an irresponsible use of animals, and a waste of time and money, but also means we may be missing out on drugs that could work to more effectively treat people with Parkinson's.

Coming up with models that reflect the real condition is crucial to finding a cure for Parkinson's. The Parkinson's Disease Society is funding projects exploring new animal models, while recent breakthroughs have created yeast models of nerve cells and even fruit flies with Parkinson's-associated dementia

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

Running for people with Parkinson's

In the current economic climate, we have to think of new, innovative ways to raise money for people with Parkinson's. At the moment, many charities are struggling to fill places in major races, such as the Great North Run

But running events are still a popular way of fundraising for the Parkinson's Disease Society. Last year, around 1,300 runners took part in events across the UK and their combined efforts raised an incredible £580,000.

In recognition of this, and to celebrate our 40th Anniversary, we decided to organise an exclusive Parkinson's Disease Society running event this year. The first ever PDS10K will be held at the National Water Sports Centre, Nottingham on Sunday 22 November 2009 and you can register to take part online right now.

Fundraising events like these are fantastic to be a part of because everyone is coming together for the same reason, to show their support for people with Parkinson's and to help us continue our work.

But events like these are not the only way you can help and every contribution is valued. If you're looking for inspiration on how you can get involved with the Parkinson's Disease Society and show your support, why not take a look at the support us page on our website?

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

A call to the world from Glasgow

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

This 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

It 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

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

Carers - the UK's 'secret service'

Today is the start of Carers Week 2009 (8-14 June). Every year the week is held to raise awareness of the six million carers in the UK - including those who care for the 120,000 people with Parkinson’s – each of them an unsung hero.

We speak to carers all the time who continue to work under extreme pressure. In Northern Ireland, Myrtle looks after her husband who has Parkinson’s. She told us that while people may understand the physical side of things, they don’t acknowledge the extra every-day workload that falls to her. Since her husband became ill Myrtle’s household responsibilities have doubled, and she even has to work part time as she is ineligible for Carer’s Allowance.

We at the PDS agree that carers are the UK’s ‘secret service' and a Carers Week survey by YouGov of over 2,000 people shows that we're not alone. Six out of seven people surveyed(86%) believe that carers make a valuable contribution to society, behind only nurses (91%) and firefighters (90%).

We want to hear from people who think their carer is an unsung hero, or who are carers themselves working under pressure. Leave a comment below or join in the discussion on our carers' forum.

Thanks to all the UK’s carers for your hard work – we can’t imagine what would happen without you all.

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

Why glowing monkeys offer hope for Parkinson's

Last week you may have seen news about ‘glow-in-the-dark’ monkeys that may help lead towards a cure for Parkinson’s. It sounds like science-fiction, but the news stories refer to a major scientific breakthrough.

Japanese scientists have inserted a jellyfish gene - that glows under fluorescent light- into the DNA of marmosets. The monkeys are special because the jellyfish gene, easily visible in the cells where it is present, remains within the cells from one generation of monkeys to the next- the first time this has been successful in non-human primates.

So why is this exciting for Parkinson's? Well, this new milestone could lead us one step closer to a cure because marmosets have such a close genetic relationship to humans.

We know that genes play a large role in why people develop Parkinson's and for years, scientists have been studying the genes implicated in the condition in mice, worms and fruit flies. But there is a big difference between mice and men, and this might be the reason why we still haven’t found a cure.

So now scientists will be able to study genes as they are passed on in the marmosets, study what may cause Parkinson’s to develop, and search for new drugs and other treatments. But instead of using the fluorescent genes, we can use genes that are responsible for certain forms of inherited Parkinson’s.

Research into a cure for Parkinson's is constantly developing. If you are interested in keeping up to date about current research, subscribe to or download a copy of Progress, the quarterly research magazine of the PDS.


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

Making Parkinson's research a priority

Members of the Parkinson's Disease Society (PDS) make research a real priority, especially those who are members of the Special Parkinson’s Research Interest Group (SPRING). The group holds an annual conference to bring together leading international researchers to maintain the focus on finding a cure for Parkinson’s disease.

On Thursday SPRING hosted their 6th biennial conference in London for researchers. The one day event, based on the theme ‘Parkinson’s disease: the Pieces of the Puzzle,’ attracted over 100 international researchers. Some of the topics included: genes; Lewy bodies in nerve cells; why certain nerve cells are vulnerable in Parkinson’s, and what might stop or slow the progression of Parkinson's.

The conference has been a great success. This type of meeting complements others organised by the PDS, as it brings together researchers from different backgrounds to provide valuable discussions into Parkinson’s and where the gaps in knowledge reside.

PDS is determined that we find a cure for Parkinson's - and by that we mean that people with Parkinson's are able to live a life free of the symptoms. You can read about the type of research PDS funds in our research pages.

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

Younger Parkinson's Network

Yesterday, the Younger Parkinson’s Network (YPN) of the Parkinson's Disease Society elected its new committee for 2009. Congratulations to new Chair Tina Walker, who is committed to raising awareness of Parkinson’s and is already an active member of the YPN.

The YPN gives support and information to people of working age affected by Parkinson’s. Members benefit from support groups and social activities and the newly relaunched UP magazine

A YPN conference was held in March to discuss issues affecting younger people - such as work, children, prescription charges, or appearing 'drunk' and getting reported to the police!

One in 20 people diagnosed with Parkinson's is under 40, which is something a lot of people don't realise- including healthcare professionals. This is one reason many younger people are incorrectly diagnosed as having frozen shoulder or essential tremor.

Younger people with Parkinson's are heavy users of the main Parkinson's Disease Society website and represent the majority of people taking part in our discussion forum

To find out more about joining the Younger Parkinson's Network or finding support groups local to you, please visit our Younger Parkinson's Network page.


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

Making benefits fairer

Last week our campaigning team convinced Fra McCann, Member of the Legislative Assembly in Northern Ireland, to speak out for the 12,000 people with Parkinson’s who claim Employment and Support Allowance.

The Allowance, which replaced Incapacity Benefit last year for new claimants, is currently being discussed as part of the new Welfare Reform Bill, and it looks likely to get harder to claim.

At the moment, medical assessments for the Allowance are not carried out by people with training or knowledge of Parkinson’s. Parkinson’s is a fluctuating condition so claimants may be having a 'good day'when they are assessed, and appear to be capable of returning to work. They may then have to go through a series of Work Focused Interviews. If someone with Parkinson's misses an interview because they are having a 'bad day' - when even getting out of bed is difficult - their payments could be reduced or stopped.

We have heard from people through emails and on our discussion forum who have been refused the Allowance because the medical assessments didn’t give them enough time to explain symptoms, or relied on an inflexible tick box system.

We think this is unfair. With help from parliamentarians like Fra McCann, who has recommended that training be provided for medical assessments, we can avoid these mistakes occuring.

If you'd like to share your experiences of claiming Employment and Support Allowance please fill in our short questionnaire. And why not sign up to our National Campaigns Network and join others who are campaigning for fairer services for people with Parkinson's?

Huge response to Brain Donor Appeal

Our brain donor appeal launched in Parkinson's Awareness Week has really taken off. Our priority was to raise the profile of the Parkinson's Brain Bank, encourage people to sign up to the brain donor register and raise the profile of the Parkinson's Disease Society (PDS) in Parkinson's research.

Getting Jeremy Paxman and other celebrities to support the campaign was brilliant and meant that we had a story that was picked up by the media in a big way.

On Monday 20 April, the first day of Parkinson's Awareness Week, the story was covered by the national press, and Jane Asher, our President, was in great demand across the broadcast media as the story grew.

On Friday I took part in a live webchat, with Jane Asher and Dr Lubna Arif, Research Liaison Manager (pictured right), to discuss brain donation and Parkinson's research and answer questions people had sent in on the subject.

You can view the webchat here.

So what have we learnt during the past week?

1. There is massive interest in Parkinson's research - and so many people want to do their bit to support finding a cure.
   


2. We need to make people more aware that as well as brains with Parkinson's, we also need brains of people without Parkinson's. This is so scientists can compare the brains and study the differences.
   


3. There's a lot of confusion around donor cards. The NHS organ donor card applies for transplants only - not research, and doesn't cover the brain. To donate your brain for research into Parkinson's you need to sign up directly with the Parkinson's Brain Donor Register and then you will get a Brain Donor card.

By the end of the week we had over 4000 requests for information packs on how to donate your brain, and our website and helpline had also received record numbers of visitors and calls.

All this is fantastic. Now we need everyone who receives an information pack to complete and return their forms, in order to be added to our Brain Donor Register. This will help us achieve our target of doubling the number of people registered by the end of 2009.

Let's build on this campaign and use it to raise the profile of Parkinson's and the search for a cure.

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