Parkinson's UK in 2011

As 2011 draws to a close, it's a good time to reflect on the successes from the year and look forward to 2012 - the year of the London Olympics, the Queen's Diamond Jubilee and, of course, Parkinson's Awareness Week 2012.

Not only did we win a prestigious Charity of the Year award at the Charity Times Awards in October, but it's been a great year for our fundraisers.

Our London Marathon team raised more than £326,000 - the highest ever amount raised for the charity from this event.

An intrepid team of cyclists travelled across Cuba to raise £40,000 for us, and our London to Paris bikers (including Josie, pictured right) raised over £13,500 from their trip across the Channel.

Parkinson's research continued to hit the headlines and our research team commented in the media on topics including gene therapy, stem cells, exercise and Parkinson's medication. We've also funded 26 research projects, worth over £4million, and our new Research Support Network now has more than 500 members.

2011 has seen our helpline answer more than 21,000 calls from people affected by Parkinson's and the launch of our peer support service - where trained volunteers share their personal experiences and understanding with others over the phone. The service has already had great feedback from users.

From the rallies and marches of the Hardest Hit campaign (thanks to Roy, pictured left, and many others), to delivering your messages to the Prime Minister in a Christmas card, we have been making a stand against cuts to disability benefits.

And we've been working hard to keep Parkinson's at the top of the Government's agenda throughout 2011. By speaking to leading decision-makers, we made sure politicians were listening to the voices of people affected by Parkinson's.

There are now 310 Parkinson's nurses in the UK, providing vital support and expertise for people affected by Parkinson's. Thanks to continued campaigning, this is up from 289 in 2009 and means 6,300 more people now have access to a nurse.

These are just a few of the highlights from a really successful year for the charity. But we couldn't make any of this happen with the dedicated support of our volunteers, supporters and staff.

More than 1,900 new members have joined us in the past year, and we now have around 6,000 followers on both Facebook and Twitter. But we want even more people to join us in 2012.

Tell us your highlights from 2011 or ideas for 2012. Add them below or email pr@parkinsons.org.uk

We wish everyone a very merry Christmas and a happy new year.

Setback for gene therapy

Reuters has reported the results of a clinical trial of the drug ProSavin, which is manufactured by the biotechnology company Oxford Biomedica. While there was some improvement in the people with Parkinson's who were administered the drug, this was small. And it was difficult to assess the result as there was no control group who would have been given a placebo.

ProSavin is actually a gene therapy product. Essentially, a gene is inserted into nerve cells in the area of the brain that is affected by Parkinson's. These are cells that are still alive, although a lot of the surrounding nerve cells have already died. The gene that is put into the nerve cells helps them to work more efficiently.

The outcomes of gene therapy trials have been mixed. The results of a US gene therapy trial published earlier in 2011 reported a benefit for people who were treated.

However, another trial last year showed some small benefits but these were no better than existing treatments (PDF file).

We have no doubt that gene therapy remains a viable option for the treatment of Parkinson's in the future. And it can be difficult to directly compare the different trials as they all used specific genes which are given for diverse time periods.

But in the longer term, the success or failure of the trials will help to tell us which genes may be best to use. Then we can concentrate on how best to give them so that they will have the maximum benefit.

New government plans to bring research into the NHS

This week, in his first keynote speech on science, David Cameron announced the Government's plans to stimulate health research by harnessing NHS patients and data.

Integrating research into the healthcare system aims to 'make every NHS patient a research patient' and attract commercial investment in UK science. This could provide huge opportunities to people with Parkinson's and researchers alike.

The Government has proposed 2 key changes:

1. Faster access to new treatments

Under the new plans, patients may no longer have to wait until a drug has been through the entire clinical trial process, which can take 20 years, to access new treatments.

This is good news for people with Parkinson's as it could mean that treatments become available sooner, and also for the pharmaceutical industry as it should make clinical research easier, faster and more efficient.

2. Opening up patient data

Another proposed change would allow information from patients' medical records to be shared anonymously with researchers and drug companies.

Clearly it's vital that access to patient data is very strictly controlled and that people who wish to can opt out. But sharing patient data in a responsible way offers huge opportunities for research into Parkinson's and other conditions.

We're excited to see the Government putting research at the heart of the NHS. And the steps they suggest could bring new and better treatments for Parkinson's to the people who need them much more quickly.

What do you think about the proposed changes?

Tell us your views on the future of social care in England - 2 weeks to go

The Department of Health wants to hear your opinions about the future of social care in England. The consultation Caring for our future: shared ambitions for care and support ends on Friday 2 December 2011.

Then in April 2012, the Department of Health will publish a report with their recommendations for the future of social care in England.

We know how important social care can be for people affected by Parkinson's, be it at home, or in a community setting such as residential care. But people are often going without the support they need or facing catastrophic care bills because the system is means tested.

So whether you're a person with Parkinson's, a carer, a health or social care professional or anyone else affected by social care it's crucial you have your say now.

We're seeking opinions from our staff, members and supporters to make sure the views of people affected by Parkinson's are represented. If you want us to include your views, contact Donna O'Brien, Social Policy and Campaigns Officer, on dobrien@parkinsons.org.uk

You can also give your views directly to the Department of Health.

We also want to hear your stories about social care. Tell us about your experiences below or email pr@parkinsons.org.uk

Raising awareness of impulsive and compulsive behaviour

We are committed to raising awareness of impulsive and compulsive behaviour, as part of our ongoing campaign.

This week 4 people with Parkinson's have settled their claims against GlaxoSmithKline – who manufacture several types of Parkinson's drugs – following them developing impulsive or compulsive behaviour after taking the dopamine agonist, ReQuip.

As their behaviour went unchecked, it escalated to very serious and life-changing levels. Solicitors, Leigh Day & Co – who attended our first impulsive and compulsive behaviour steering group in January 2011 – argued that due to warnings not being included with the drugs until March 2007, no link could be made between their behaviour and the drug. Therefore, the manufacturer, GlaxoSmithKline, was liable.

This recognition of the severity and, in many cases, devastating nature of impulsive and compulsive behaviour is a huge step forward.

Dopamine agonists help many thousands of people with the condition across the world but this case serves to highlight the huge importance of having accurate information about the potential risks they carry.

We are committed to making sure everyone affected by impulsive and compulsive behaviour has the information they need to make an informed choice, before the consequences become too serious.

Do you have experience of impulsive and compulsive behaviour? Would you like to join our campaign? Tell us your views on pr@parkinsons.org.uk

Pharmacists learn how to 'Get it on time'

Our 'Get it on time' campaign has been a great success across the UK and has even been used abroad in Canada and the USA.

While people with Parkinson's are at the heart of the campaign, those healthcare professionals working with people with the condition are integral to its success, such as GPs, hospital and community nurses and community pharmacists.

We recently met with the Department of Health's Chief Pharmacist Martin Stephens and Jonathan Mason, to talk about the campaign reinforcing how important it is for people with Parkinson's to get their medication on time and what part pharmacists can play in this.

After the meeting, Martin Stephens wrote a fantastic blog and Jonathan Mason appeared in an online film for Chemist and Druggist (C+D) magazine's website.

Both highlighted C+D's 41,000 unique users – of which the majority are community pharmacists – about the importance of supporting people with Parkinson's to get their medication on time and some of the great work already taking place in hospitals and pharmacies across the country.

In particular, the pieces focus on the vital importance of listening to people with Parkinson's, their families and carers and finding out what support they need to get their medication on time.

How supportive is your pharmacist? Do they know enough about Parkinson's? Tell us your experiences by emailing pr@parkinsons.org.uk

Feel inspired? Come and join us on the overseas trip of a lifetime

Congratulations to our victorious 15-strong team of trekkers reached the summit of Mount Kilimanjaro in Tanzania at the weekend.

Our team climbed 5,895 metres to reach the peak of Africa’s highest mountain. They've raised £60,000 so far with money still pouring in.

Have you ever dreamed of cycling through Vietnam and Cambodia, trekking through Jordan or exploring The Lost City of Machu Picchu? Come and join us next year on an overseas trip of a lifetime.

We will be going to Trek Jordan 7-15 April 2012; Trek Peru 21-30 September 2012; and Cycle Vietnam to Cambodia 14-25 November 2012.

If you're interested in finding out about what to expect on an overseas trip or have any questions, come along to our next Overseas Events Information Day on Saturday 11 February 2012 at our head office in London.

Fundraiser Roddy Lee, age 56, from Letchworth in Hertfordshire was diagnosed with Parkinson's in 2007. He has trekked both in the Sahara and Nepal for us.

Watch a short film of Trek Nepal made by Roddy.

If you can’t make it to the open day but would like to find out more, give our Events team a call on 020 7932 1328 or email events@parkinsons.org.uk

Do you feel inspired? Come and join us!

Many nurses 'expecting to lose job'

Findings from an employment poll released last week by the Royal College of Nursing (RCN) worryingly state that some 15,000 nurses and healthcare assistants expect to be made redundant in the next 12 months.

The survey of around 8,000 staff included more than 6,000 nurses and healthcare assistants working in the NHS, and demonstrates the growing impact the current financial squeeze is having on the healthcare service.

In addition to recruitment freezes, unfilled posts and ward closures, more than half of nurses (52%) said they were now too busy to provide the level of care they would like, with 32% saying the quality of patient care is going down.

Nurses are also working extra hours. 57% say they do so each shift, or at least several times a week.

We welcome the news that the RCN has tabled an amendment calling for guaranteed safe staffing levels in advance of the decision on the Health and Social Care Bill, which is being made today in the House of Lords, and we anticipate the outcome.

Our Protect Parkinson's nurses campaign which launched in July is designed to protect and grow the vital front line work that specialist Parkinson's nurses carry out across the UK. These statistics are therefore concerning when considering the impact that cuts or reduced staffing would have for people with Parkinson's.

Despite the Government wanting to protect services, should future cuts be implemented, we are likely to see patients experiencing longer waiting times, poor care and a worse NHS system. This will have a devastating impact on anyone affected by Parkinson's.

You can support our ongoing campaign to protect the vital frontline services of Parkinson's nurses by visiting parkinsons.org.uk/faircare

What do you think about the threat to nurse positions? Share your views with us.

The future of care and support - share your views

What priorities do you think the Government needs to focus on to improve the current care and support system?

The Department of Health is calling for views on the future of care and support, on its website Caring for the future: shared ambitions for care and support.

Feedback will help inform a Government White Paper on social care reform, and a progress report on funding reform that will be published in spring 2012.

This is part of the 'next steps' discussion – building on the Dilnot report and the Law Commission report on reform – not just of funding and law, but on how to get quality, prevention and personalisation embedded in a newly reformed English care system.

The consultation is scheduled to end on 2 December, and we're really keen to hear from people affected by Parkinson's across the UK to get your views on what we should be telling the Government.

Similarly, an inquiry into social care by the influential Health and Social Care Committee in England is looking at the 'postcode lottery' for care. The deadline for this is 26 October.

We're campaigning to end the care crisis, calling on the Government for urgent reform of the care and support system.

Older and disabled people, and their families, are going without essential care and often face catastrophic care bills. This is why we're working with 50 other charities as part of the Care and Support Alliance, to call for reform of adult social care.

If you live in England, you can use our simple online form to contact your MP and tell them why we need urgent changes to the care system in England and why action must be taken now.

Share your views on social care reform below.

Parkinson's UK at the Lib Dem conference last week

Last week was a busy time for members of our Policy and Campaigns team, who found themselves bustling around Birmingham for the annual Liberal Democrat party conference.

As well as providing the opportunity for people with Parkinson's and charity representatives to meet with key politicians, policy makers and opinion formers, the conference enabled us to increase awareness of Parkinson's through our unique 'rigidity machine' at our exhibition stand.

The machine emulates the rigidity experienced by people with Parkinson's. This allowed visitors to engage with a key physical aspect of the condition and helped them experience just one of the associated symptoms of Parkinson's.

A highlight of the conference came when an Early Day Motion on Employment and Support Allowance (ESA) and Work Capability Assessments was passed. This puts the onus on Lib Dem ministers to oppose an arbitrary time of a year for some claimants to receive ESA. And it helps to maintain pressure on the Government in regards to current concerns surrounding people with genuine medical conditions being denied access to vital benefits.

As well as attending various fringe events, we also hosted our own, in collaboration with Arthritis UK and The Stroke Association.

At our fringe event - called 'Mind the gap - How can we bring health and social care together in the new NHS' - senior panel members discussed issues such as current social care needs, gaps that exist in accessing care, and barriers with funding and integration between health and social care professionals.

A final key development was Minister of State for Care Services, Paul Burstow MP acknowledging the need for clinical neurology networks and clinical advice for neurology within the NHS Commissioning Board.

We're expecting just as gruelling a schedule at the Labour Party conference in Liverpool this week. And we can only hope for equally positive outcomes.

Tell us what you think about the passing of the Employment and Support Allowance motion below, or email us at pr@parkinsons.org.uk

The cost of caring

A new report out this week reveals that 70% of over 60s looking after loved ones said being a carer had damaged their health.

The UK's 6 million carers are made up of around half aged over 50 and 1.5 million over the age of 60. Of the 639 60-94 year-old carers surveyed, 68.8% said being a carer had damaged their psychological well being and two-thirds had a disability themselves.

This raises huge concerns about the issue of older carers battling their own deteriorating health without enough support from the NHS.

The Princess Royal Trust for Carers, who published the report, now wants GPs to give health checks and depression screening to carers once a year along with home visits, dependent on their responsibilities.

While this report focuses on older carers, it does raise awareness of some of the challenges faced by carers generally in accessing the help, support and information they need.

Despite this, many carers remain unaware of benefits and social care services available to them. Support and information and access to respite for carers is a key theme of our campaigning work, including our Fair Care for Parkinson's campaign.

As part of the Care and Support Alliance, we're currently working with 50 other charities to call for urgent reform of adult social care - which would provide more rights for carers.

Our e-action campaign has begun. We're calling for the public to write to their MP to tell them why we need urgent changes to the care system in England and end the care crisis.

Carers save the economy billions, and it is vital that they are sufficiently supported.

Are you a carer? Share your views with us here or email pr@parkinsons.org.uk

'Get it on time' across the Atlantic

Our 'Get it on time' campaign, first launched in April 2006, has helped thousands of people with Parkinson's get their medication on time when in hospital in the UK. And now it's helping people with Parkinson's across the USA and Canada too.

The Parkinson Society Central and Northern Ontario has taken our campaign model and adapted it for people with Parkinson's and professionals working with people with Parkinson's in Canada.

To date, more than 50 information sessions have been given at long-term care facilities, retirement homes and Parkinson's support groups in Ontario, and the campaign has plans to expand to Ontario hospitals later in 2011.

As well as in Canada, The National Parkinson's Foundation in the USA is currently designing materials to launch its new campaign 'Aware in Care' - which was also inspired by 'Get it on time'.

We're delighted that our campaign has been so inspirational and is helping to make sure that as many people with Parkinson's as possible get their medication on time, every time.

Our own campaign has helped educate hundreds of professionals about the importance of good medicines management. And it supports people with Parkinson's to get their medication on time, every time when in hospital, care homes or in their own homes.

Have you had a positive 'Get it on time' experience in hospital? Or were your needs not catered for? Tell us your stories below or email us at pr@parkinsons.org.uk

The One Show - iPhone app helps Parkinson's stammer

BBC1 programme The One Show will tonight (2 September) feature Mark Wilson, 53, from Somerset, who was diagnosed with Parkinson's 14 months ago.

The recent discovery of a phone app, DAF Assistant, is helping him manage speech problems as a symptom of his condition.

Mark's daughter got married in August. He feared that, as father-of-the-bride, his stammer would hamper his speech on his daughter's big day, so he sought help from Weston General Hospital in Somerset.

Speech therapist Mike Richards was already aware of electronic technology called Delayed Auditory Feedback - which can help Parkinson's patients improve their speech patterns.

But with DAF devices costing around £2,000, continued online research resulted in Mike discovering the inexpensive app.

It's thought that DAF devices help by relaying what is being said with a millisecond's delay. This tiny delay then interrupts the feedback and tricks the brain into thinking it's speaking in unison with the machine.

Mark describes the discovery "like flicking a switch", and said it had restored his confidence.

This BBC News video shows Mark using the app.

DAF techniques could only help about a third of people who stammer, but if effective, the change is 'instant'. Mike Richards has since been recognised in a letter from the Prime Minister.

Kieran Breen, our Director of Research and Development, welcomes news of this innovative and inexpensive app: "The current research project into assistive technologies we're funding with King's College London will no doubt benefit from this news.

"We're sure that developments in these emerging technologies will make a huge difference to some people living with the condition."

Do you use assistive technology to help manage your Parkinson's symptoms? Share your story here or email pr@parkinsons.org.uk

The One Show is on tonight, at 7pm on BBC 1.

Participate to put Parkinson's at the heart of European research

Help us shape a major new European research programme by completing a short 30-minute online survey.

Joint Programmes have been set up by The European Union to tackle some of the 'big challenges' that face us today, such as healthcare and environmental topics like climate change and energy security.

Neurodegenerative diseases has been selected as the first joint programme initiative, and an EU Joint Programme on Neurodegenerative Disease (JPND) has been created to improve the understanding of neurodegenerative disorders.

Neurodegenerative conditions such as Parkinson's and Alzheimer's have been identified as 2 of the biggest health challenges for Europe today.

It's hoped that this programme will help generate new medical approaches for prevention, diagnosis and treatment for neurodegenerative conditions, with the ultimate goal being to find a cure.

This is in addition to ensuring the provision of health, social care and support so that individuals can receive optimum care at all stages of their illness.

They now need researchers, healthcare professionals and people living with these conditions to help identify common research goals like alleviating symptoms and lessening the impact for patients, families and health care systems.

We hope this new programme will boost research into Parkinson's across Europe by encouraging more collaborative projects and crucially attracting more funding.

As the biggest Parkinson's research charity in Europe, we've been involved in shaping this programme from its earliest stages.

Our diverse and innovative UK research projects aim to tackle every aspect of Parkinson's - but we cannot do it alone.

Please take the time to complete the survey and make sure the views of people affected by Parkinson's are at the heart of European research.

New insights into key protein could help us crack the Parkinson's code

Now and again a piece of research emerges that turns an accepted idea on its head - and a new study published this week in top scientific journal Nature has done just that.

It shows that the protein alpha-synuclein - a key player in Parkinson's - may behave very differently than researchers previously thought.

Alpha-synuclein is the main component of protein that forms sticky clumps called Lewy bodies in the nerve cells that die when people develop Parkinson's.

People who have changes in the alpha-synuclein gene have an increased risk of Parkinson's.

Until now, researchers had believed this protein existed by itself as single units. However this new research suggests that in healthy cells, the protein actually forms very stable 4-unit blocks, which crucially seem to be less likely to form Lewy bodies.

This research may hold the key to understanding what causes Parkinson's, and what goes wrong inside the cells that die in Parkinson's.

It may also hopefully lead to the development of new treatments that can stop Lewy bodies forming and slow or stop the development of Parkinson's entirely.

We're currently funding almost £1million of research projects investigating alpha-synuclein, and these new findings could be the catalyst for more breakthroughs that bring us closer to a cure.

Find out more about our exciting current research projects and let us know what you think about this new discovery in the comments section below.

Welfare reform revisited

A BBC article this week stated that the Lib Dems plan to call for changes to the current 'stressful' Employment and Support Allowance (ESA) testing during their party conference in Birmingham next month.

This follows recent protests by many who are unhappy with the controversial Work Capability Assessment (WCA) computerised testing system introduced to ascertain disability claims.

There are serious concerns that assessments are inaccurate and unfair, which echoes our support of the recent Hardest Hit campaign and the 'Making it work for fluctuating conditions' report we collaborated on in May to make benefits assessments fairer.

Despite incorporation of recommendations from Professor Harrington for a fairer system, following 2 previous reviews of the process, questions remain about whether a tick-box computer-led assessment is the best way to analyse suitability to work.

Over the next 3 years, 1.5 million people will undergo this more stringent procedure.

With any assessments for disability allowance, the complex and fluctuating nature of a condition such as Parkinson's is not being taken into account.

A staggering 40% of claimants denied support appeal, a process which is costly for the state.

Another worry is that the Government proposes to limit contributory ESA to just 1 year for those deemed about to undertake 'work-related activity. This means people with Parkinson's who've worked all their lives and paid national insurance could have support withdrawn because they can't find work after 12 months.

The Government must ensure its proposals do not punish those in society who need the most support.

We'll be contributing to a second Independent Review of the WCA currently being carried out by Professor Harrington. Read more about how to influence our response.

Share your views or experience of ESA below or email campaigns@parkinsons.org.uk

Help us protect front-line Parkinson's nurses

This week the Royal College of Nursing (RCN) published a report to demonstrate how almost 100,000 nurses could be lost from the NHS in the next 10 years through changes in policy and local cuts.

The RCN has already identified almost 40,000 posts that are earmarked to be lost over the next 3 years across the NHS in the UK.

And we're deeply concerned that specialist Parkinson's nurses - who can save the NHS in England more than £42million a year - are at risk of being cut.

The RCN's report is part of their Frontline First campaign to highlight the importance of nurses as front-line staff. This coincided with the launch of our Protect Parkinson's Nurses campaign on Monday this week.

We've had a great response to our campaign action so far. 60% of chief executives of Primary Care Trusts (PCTs) in England have been emailed by the public about the value of Parkinson's nurses. And 64 people affected by Parkinson's have added their comments about Parkinson's nurses to our UK map.

This includes Ken in Edinburgh, who says: "My Parkinson's nurse is great because she provides an invaluable source of support and information on medication and lifestyle issues. She is accessible in a way that my consultant is not."

Our campaign's got off to a great start, but there's still a long way to go. We want as many people as possible to join our campaign. If you're in England use our simple template to send a message to your local PCT to protect Parkinson's nurses in your area.

If you're in the rest of the UK, add your comments to our map or see how you can get involved at a local level.

Please take action now.

2011 Mervyn Peake Awards

The 10th annual Mervyn Peake Awards take place today in London.

The 4 category winners – in art, photography, digital art and poetry – along with 12 commended entrants and the winners of the People's Choice award are gathering together at the IET Savoy Place, London to celebrate their achievements.

The winners of the 4 main categories are:

Art: Marjorie Abbott, for her painting, Enchanted Forest (image right)
Poetry: Ali Finlayson, for his poem, The Unstrung Violin
Photography: John Horwood, for his photograph, Alley Palley
Digital art: Eric Popplewell, for his film, Be Loud

This year's commended entries are:

Art: Liesl Silverstone, Sylvia Hogg and Peter Bagley
Poetry: Terry Matthews, Michael Bernard and Mo Browne
Photography: Havovy Fernandes, Andrew Fraser and Pauline McNulty
Digital art: Kenneth Smith-Simmons, Julie Clark and Jon Stamford

View the Mervyn Peake Awards 2011 winners.

Presented by Chocolat author Joanne Harris, the awards are organised by Parkinson's UK and judged by the Peake family, in memory of the late illustrator, writer and poet Mervyn Peake (1911–1968), who had Parkinson's.

The awards celebrate the creativity of people with Parkinson's. 2011 is a special year as it's the 10th anniversary of the awards and centenary of Mervyn Peake's birth. The celebrated illustrator and author of Gormenghast would have celebrated his 100th birthday this week.

Many people with Parkinson's find that having a creative outlet, like painting or photography, helps them deal with their condition. How do you express yourself? What do you do to unwind?

Tell us your stories here or email pr@parkinsons.org.uk

Dementia and Parkinson's research

Up to 40% of people with Parkinson's have some form of dementia and we are currently funding a study to understand the best treatments for the condition.

Earlier this week, the Ministerial Advisory Group for Dementia Research (MAGDR) produced a report looking to identify ways in which we can improve dementia research in the UK. Our chief executive Steve Ford and our research director Kieran Breen were part of this group.

The group recognised that funders and researchers need to work more closely together to share experience.

Another recommendation was to get people with dementia and their carers involved in research, including setting up registers of people who want to take part in clinical trials, getting people's input on proposed studies, and also encouraging people to promote the research.

Our new Research Support Network is one way in which people affected by Parkinson's can do just that.

Also crucial is the development of the next generation of researchers. We already fund career development awards and postgraduate studentships to ensure that we provide every opportunity to nurture future talent. However, although the report identifies some really key areas for research development, there will be very little additional money available to fund these.

So it will be left to charities such as Parkinson's UK to continue to fund research into neurodegenerative conditions for the foreseeable future.

If you're interested in Parkinson's research, why not join our new Research Support Network? To find out more contact Emily Hughes, our Research Support Network Manager, on rsn@parkinsons.org.uk or 020 7963 9376.

Or take a look at other ways to get involved in our research.

More support for carers? Yes, Prime Minister

The theme of this year's Carers Week has been the 'true face of carers'. And we've have had an exciting week of campaigning to raise awareness of the often unrecognised challenges that carers face and the support they need.

Yesterday, carers of people with Parkinson's were among attendees at a Carers Week reception at Downing Street, where they had the opportunity to raise awareness of the issues that carers of people with the condition face - with the Prime Minister, no less.

They spoke directly with David Cameron about the value of Parkinson's nurses for carers as a point of contact, support and advice - and the fact that they can save the Government money.

It was a particularly topical discussion, with unequal access to Parkinson's nurses still a major issue throughout the UK and some nurse posts currently under threat.

And the message obviously hit home when Mr Cameron later addressed the Carers Week reception, specifically mentioning Parkinson's nurses and recognising the need for the Government to work in partnership with carers and charities to get the right support in place.

It was great to get this issue on his radar at the reception - and even better to hear it directly from the mouth of the Prime Minister!

A huge thank you to the carers that attended. Pictured above are (left to right), Valerie Rossiter, Frank Price, David Barnes, Nadra Ahmed (also a Parkinson's UK trustee) and Pauline Wharton.

And thank you too to carer Barbara Lee from Worthing, who did a sterling job speaking to 10 MPs on a one to one basis at a 'speed networking' event earlier in the week. See some photos of Barbara in action on Flickr.

Carers face many issues, and the cuts aren't helping matters. Take action by contacting your MP to help us build momentum in our campaign for better support for carers.

New report condemns state of neurology services

This week, the Royal College of Physicians and the Association of British Neurologists published a report saying that overall services for patients with neurological conditions such as Parkinson's are poorly organised and don't meet patients' needs.

People with a neurological condition need a range of neurology services at different stages of their illness - including acute admission, outpatient care and long-term care. However, the report finds that these services are badly integrated, leaving many patients unable to access the right specialist at the right time.

Key proposals put forward in the report include an expansion and improvement of local services, organised care for patients with long-term neurological conditions, managed by enhanced roles such as specialist nurses, and better local planning of services with increased clinical involvement.

With our chief executive, Steve Ford, this week announced as the chair of the Neurological Alliance, we're more committed than ever to trying to improve all services and treatments for people with Parkinson's.

Our ongoing Fair Care for Parkinson's campaign seeks to make sure that all people affected by Parkinson's are given the care they deserve - wherever they live in the UK. This includes consistent access to high-quality neurology services for people with the condition.

So we strongly welcome this latest report and hope that the Government listens and places neurology at the top of its agenda.

Does this report reflect your experiences of neurological services? Share your thoughts here.

Crunch time for care

Social care reform has seen plenty of false dawns, but in the coming weeks could we see some agreement on a way forward for our crumbling care system in England?

This week Age UK reported that 800,000 people who need care are now not getting the correct levels of support - and this could rise to 1 million within 4 years. Elsewhere it's reported that spending on social care is still shrinking despite our ageing society.

Councils across the UK will be closely monitoring the situation in Birmingham, where the council was forced into a retreat over proposals to only provide care to those in the direst need.

These examples demonstrate the failings of a system which is desperately underfunded and unfair. It's unfair that people might be eligible for care in one area, but not another. And it's unfair on those who are forced to pay for all their care needs, despite having at best only modest savings.

We've told the Commission on Funding of Care and Support - which is due to publish its recommendations on the future of social care funding in the next few weeks - what people with Parkinson's want and need from the care system.

Those in power have heard loud and clear of the desperate need for greater funding. They have heard that people want national standards, not a lottery, and that they want closer working between health and social care.

Change will mean more than recommendations - it will need new laws and political will.

Do you think that politicians will put aside politics to change our social care system for the better? Share your views here or get in touch with our Campaigns team at campaigns@parkinsons.org.uk

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 pr@parkinsons.org.uk 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:

• Dr Oliver Bandmann from Sheffield University, who described how his work using zebrafish (PDF file) is helping us understand early onset Parkinson's


• Dr Anton Gartner from the University of Dundee, who explained why tiny worms called C-elegans have a lot to tell us about how our brains work (PDF file)
  


• Dr Alex Whitworth from the University of Sheffield who discussed how studying fruit fly models is helping identify new drug targets for Parkinson's
  

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 eurostemcell.org

London Marathon 2011: An inspiring day

Last Sunday 177 inspirational runners from all over the UK took part in the Virgin London Marathon to raise money for Parkinson's UK.

As our photos of the event show, each of our incredible fundraisers had their own personal reasons for tackling the 26.2 mile route through the spectacular scenery of London. But they were all united by a collective will and determination to help us find a cure and improve the life of everyone affected by Parkinson's.

Our teams of friends and family, volunteers and staff turned up in mass at our cheering points throughout the course to support and encourage our runners across the finish line. With the sun shining down, the atmosphere on the course was phenomenal and visibly spurred our runners on as legs and minds began to tire.

Among our runners were stand up comic Rob Deering, Ed Timpson MP and John Watkins - our oldest runner this year at 73 years young. We've already raised £188,000 – towards our £285,000 target - so everyone involved can be extremely proud of themselves.

Take a look at our 2011 London Marathon video, which captures Sunday's atmosphere of determination, emotion and enthusiastic support.

Enough to make you feel inspired for next year? The official ballot opens on 26 April. See our London Marathon webpage for details on how to run for us in 2012.

Or if you're not quite ready to do a marathon, we have a whole range of other events you can take part in.

Together, our voice is louder

During Parkinson's Awareness Week, local groups around the country invited their local MP to meet people with Parkinson's, their families and carers.

We believe that everyone affected by Parkinson's should have access to quality care and the financial support they need. MPs are currently considering fundamental changes to the NHS in England and the welfare system across the UK.

And we're campaigning to make sure that when the changes come, people with Parkinson's get the services they need and the benefits they rely on. Please help us keep Parkinson's on the political agenda:

• Invite your local MP to meet people affected by Parkinson's. This gives them to opportunity to hear first-hand what it's like to live with the condition and the help they need to maximise their quality of life and independence.


• Join our National Campaigns Network. Over 3,000 people have signed up in the last year. Taking part helps us improve life for everyone affected by Parkinson's.

Together, our voice is louder.

Steve Brine, MP for Winchester and vice chair of the All-Party Parliamentary Group for Parkinson's (front row, third from left). Michael and Ann Hone of our Winchester Branch said: "We feel very privileged to have Steve's support. He listens to our concerns and represents us whenever he can."

Jessica Morden MP for Newport East (front centre) attended a photo opportunity at the Riverside Theatre in Newport with the Newport Branch. Ms Morden said they were "a wonderful local support group and very keen fundraisers'.

Edward Timpson MP for Crewe and Nantwich (third from left) with members of the Crewe and District Branch outside St Michaels Church Hall ahead of running the London Marathon to raise money for Parkinson's UK.

Benefits 'handouts': A different perspective

A worrying trend in 'benefits figures published today' media stories would have you believe there are millions living the high life on the welfare state. According to the Telegraph on Monday, there are 2 million people who have unquestioningly received 'handouts for decades'. This figure is the number of disabled people who have an indefinite award of Disability Living Allowance (DLA).

Over 18,000 people with Parkinson's receive DLA. This is far from a 'handout' - it's a lifeline, a modest but essential payment to support the added cost of a serious disability. And most people with Parkinson's quite rightly receive an indefinite award. For what sense is there – especially in cost to valuable public funds - in constantly reassessing someone whose condition is certain to only progress?

But that's just what the Government is proposing to do.

Meanwhile, work to reassess 1.5 million people on Incapacity Benefit began this week, with claims that 500,000 people 'on sick' are really fit to work. The implication: that half a million are playing the system.

But 'fitness to work' is being assessed by a test so blunt and inadequate that people with some of the severest forms of Parkinson's are being told to get a job. This sort of reporting is not just inaccurate but causes great anxiety for people with Parkinson's.

Join us and others to give the media and Government a reality check. Visit The Hardest Hit website to register for the London protest on 11 May or find out how to protest online.

If you need advice on benefits, contact our helpline for confidential advice and support on 0808 800 0303 or email hello@parkinsons.org.uk

NHS reforms: have your say

Many of us will have seen and heard a lot in the news recently about the Health and Social Care Bill - a new piece of legislation currently being discussed by MPs, proposing major changes to the NHS in England.

One of the main proposals will see GPs take control of major decisions on what health care their patients need. GP practices will group together to form consortia, which will take on the role of commissioning most health services for their area.

The Government is giving very little guidance on how big these consortia should be and how they should be run. Because Parkinson’s is not very common, we’re worried that smaller consortia might decide not to commission the full range of specialist therapists and nurses necessary for people with Parkinson’s.

We’ve been asking MPs and Ministers to change the Bill so that GP consortia have to work together when they arrange health care for Parkinson’s. We're also working with other neurological charities that will be affected, to tell Government how important it is to make changes to the Bill (PDF).

And we need your help. If you live in England, we want you to email your MP and ask them to write to Andrew Lansley the Secretary of State for Health, supporting these changes.

You can send a message to your MP on our website now.

Join us in The Hardest Hit campaign

The Government's Budget announcement today continues to drive forward with its plans to reduce the number of people claiming benefits.

We're concerned that people affected by Parkinson's may no longer be able to receive the financial support they're entitled to if they incur extra costs due to their condition. Many people affected by Parkinson's have told us about their experiences, which have been included in a Disability Benefits Consortium (DBC) report (PDF file) published today - so thank you to all of those who responded.

We're a member of the Disability Benefits Consortium which is a national coalition of over 40 different charities and other organisations. Today's report highlights the issues faced by disabled people and those with long-term conditions such as Parkinson's, their experiences of the benefits system and the impact of proposed reforms.

We've also joined The Hardest Hit campaign, aimed at raising awareness of the impact cuts to benefits will have on disabled people. People affected by Parkinson's can get involved in a number of ways:

• Write to your MP
• Come to the campaign march and lobby on 11 May.
• Like The Hardest Hit page on Facebook and tweet your support with the #hardesthit hashtag on Twitter (and invite your friends to do so as well!).
  

To find out more about other ways that we're lobbying on this issue, visit our disability benefits campaign page.

If you'd like to share your experiences of the benefits system with us, get in touch on 020 7963 9307 or email campaigns@parkinsons.org.uk

Parkinson's UK Together events

Last week over 300 members and staff from all over the UK came together in a series of events to share successes and discuss our plans for the future.

The Parkinson's UK Together events provided an excellent forum for members of our local groups to feed back to staff what they think has worked well and help us identify new ways of working together toward our ambitious 5-year strategy.

Members picked out our presence at the World Parkinson Congress, our work with Nintendo Wii and our rebranded information resources as some of our most impressive achievements in recent months.

They also stressed the importance of our educational work with GPs and other health professionals as well as our 'Get it on time' campaign.

Members felt that current work to improve communication between staff and local groups needed to continue. And they welcomed further events to increase interaction and shared understanding between staff and people affected by Parkinson's.

One person at the Glasgow event said: "It's nice to hear what other branches are doing and to share ideas with staff. Sometimes as a branch you can get stuck in a rut. The event has been really very informative and useful for that".

So staff returned to the office this week with a strong sense of what we are doing well and areas for improvement - as we move towards our ultimate goal of finding a cure.

From genes to treatments

This week, researchers in the US discovered that a drug currently used to treat a rare genetic childhood condition can stop the development of Parkinson's in mice. The drug, phenylbutyrate, is now being tested in people with Parkinson's.

The drug works by turning on a gene, called DJ-1, which helps the dopamine-producing nerve cells usually lost in Parkinson's to survive.

But what's exciting about this breakthrough - aside from the promise of a new treatment that could slow or stop Parkinson's - is that the foundations were laid by the discovery of problems in the DJ-1 gene in people with Parkinson's back in 2003.

Now, understanding why the DJ-1 gene is important for the nerve cells lost in Parkinson's has led to this potentially neuroprotective treatment. We funded a lot of the early work around this and discovered 2 key genes that are involved in Parkinson's.

And there's more to come.

Researchers at the John Hopkins Institute for Cell Engineering in the US have unravelled how another crucial gene causes nerve cells to die in Parkinson's.

And just last month 5 new genes linked to Parkinson's were identified in the largest genetic study of the condition to date. This brings us up to 11 genes that we now believe play a part in Parkinson's.

We are now beginning to see the pieces of this complex puzzle of genes fitting together. And this is leading to the first tantalising glimpses of treatments that tackle the root causes of Parkinson's by targeting the genes involved in the condition.

No one has to face Parkinson's alone

For many people, a diagnosis of Parkinson's can be a frightening and isolating experience, and it can be difficult to know where to go for help and support.

We have 350 local groups across the UK, offering friendship and support and a chance to talk face to face with others going through the same experience. The groups are not just for people with Parkinson's but for carers and families too. There are new groups forming all the time - recent additions include Orkney and Porthcawl.

We've just redesigned our local group finder on our website, so it's now a lot easier for you to find the group that's nearest to you.

If you feel this isn't for you, there are also 'virtual groups' that meet online. Our Facebook page, our discussion forum and also Twitter offer places for people affected by Parkinson's to interact with others in the same situation and get support.

The theme for next month's Parkinson's Awareness Week - 11-17 April - is 'Join us'. There are so many ways that you can get involved with us - over the coming weeks we'll be letting you know more about what's planned. In the meantime, why not locate your nearest local group - or take a a look at our forum, Twitter or Facebook pages - and take that first step?

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.

Can music help people with Parkinson's?

Recent research carried out in Montreal has revealed a fascinating link between the experience of listening to music and the release of the chemical dopamine in the brain.

Dopamine has long been established as one of the brains key 'feel-good' chemicals - but this is the first study to look specifically at dopamine levels in response to listening to music. The study confirms that levels of the chemical in particular areas of the brain were up to 9% higher when volunteers were listening to music they particularly liked.

Researchers carefully chose a small sample of people to analyse based on their high emotional sensitivity to music. The study measured the release of dopamine at peak levels of enjoyment, marked by the moment when participants reported to feel a 'shiver' down the spine as a result of their listening experience.

Dopamine is also of great interest for Parkinson's. Although we don't yet know the exact causes of the condition, we do know that Parkinson's occurs as a result of a decrease in the brain's production of the chemical due to the death of nerve cells. This is essential for movement and co-ordination.

Many people with Parkinson's do report that music really benefits their symptoms and helps to manage the condition.

If you're affected by Parkinson's and have a passion for music or any other creative arts, we would love to hear from you on the ways in which it helps living with the condition.

Looking to the future of UK research

This week the Academy of Medical Sciences launched a report, A new pathway for the regulation and governance of health research, commissioned early last year to look at the future of health research in the UK.

As part of the report, we were asked to give our opinion on how we thought research should develop in the future - and most of what we said was taken on board.

One of the key recommendations is for a lot of the Government's research 'quangos' to merge and form a single Health Research Agency. This will make it much easier to implement changes and get rid of the red tape that's currently slowing down medical research.

Another suggestion that will help to speed up clinical research is having each NHS Trust give details of the research that they are supporting, making it more accountable to the public.

If the Government decides to adopt this report, it would help make sure there are fewer barriers to carrying out clinical trials - and organisations such as ours will have a bigger say in how they develop. This will help us make real progress with our research strategy and move closer to our aim of a cure for Parkinson's.

The report emphasises the need for the public having a greater say in medical research. There are many ways in which you can get involved in Parkinson's research. And in 2011 we'll be developing our Research Support Network, which will give people even more opportunities to play their role in all parts of research.

As always, we'll keep you updated on how this is progressing.

Looking ahead, growing stronger

After a couple of weeks of seasonal festivities, it's back to work for all, feeling full of optimism for the coming months. And we begin 2011 by looking ahead to another action-packed year.

Whether you've been involved with Parkinson's UK before or you're just on the lookout for a new challenge to kick-start the new year, 2011 sees another fantastic line-up of events and ways to get involved and join us.

Parkinson's Awareness Week runs from 11-17 April this year. And we'll be encouraging as many people as possible to join us, to help raise funds and spread the word about Parkinson's and the work we do.

We have places available in a variety of running events - from the iconic Great North Run to our own Parkinson's 10k in Berkshire.

For more adventurous spirits, we have a great line-up of overseas treks and cycling challenges taking place throughout the year. Or for those who dare, we are even hosting a Parkinson's UK skydive in April!

2011 is the centenary year of Mervyn Peake's birth and this summer our Mervyn Peake Awards will also mark its 10th anniversary. So it's sure to be an extra special celebration of the creative talents of people with Parkinson's.

We're also really looking forward to pushing ahead with our innovative research and campaigning, to make sure that we continue to make a difference to the lives of people with Parkinson's and move a step closer to finding a cure. If you'd like to make a real difference, join our National Campaigns Network or Research Network.

And there are lots of other ways you can get involved too. What are you going to do in 2011?