Talk Parkinson's

Parkinson's awakens hidden creative talents

noreply@blogger.com (Parkinson's UK) — Fri, 24 Feb 2012 09:50:00 +0000

Research published this week in the European Journal of Neurology has shed new light on the relationship between Parkinson's and creativity.

We hear from many people with Parkinson's who suddenly discover new creative hobbies after being diagnosed – including everything from drawing and creative writing, to sculpture and photography.

Our annual Mervyn Peake Awards celebrate the creative talents of people with Parkinson's and we receive hundreds of art, poetry and photography entries every year.

And the 'creative corner' on our forum is a popular place for people with Parkinson's to meet to share their poetry and stories.

The key to this new-found creativity may be a chemical messenger in the brain called dopamine.

People with Parkinson's don't have enough dopamine because nerve cells in their brain have died. And Parkinson's drugs, like levodopa and dopamine agonists, work by replacing or mimicking the action of dopamine. This helps to manage the movement symptoms of Parkinson's. But dopamine also plays other roles inside the brain, including creativity.

In this new research study, Italian researchers studied 36 people with Parkinson's - half had taken up new artistic hobbies since being diagnosed and the other half hadn't - and compared them to people without the condition.

The findings suggest that for some people, taking Parkinson's drugs can trigger the discovery of a new artistic interest but the 'ability' was probably there all along.

Have you discovered a new creative interest since being diagnosed with Parkinson's? Share your thoughts below or email us at pr@parkinsons.org.uk.

'In sickness and in health' Carers Week 2012 survey

noreply@blogger.com (Parkinson's UK) — Thu, 16 Feb 2012 16:40:00 +0000

The Carers Week survey for 2012 is out now. We need your help to make sure carers of people with Parkinson's are represented.

Please complete the Carers Week survey by 16 March.

The theme of Carers Week is 'In sickness and in health' and it's taking place 18-24 June.

The results from this national survey will help highlight the impact of social care cuts on the 6 million unpaid carers across the UK, particularly on carers' health and wellbeing.

Carers of people with Parkinson's have been telling us how much tougher they've been finding their caring role recently because of cuts to services. But we need an accurate picture of caring in the UK.

If you need a paper copy of the survey please email rebecca.couper@carersuk.org or call Donna, our social policy and campaigns officer, on 020 7963 9307 . Don't forget to tell other carers about the survey too.

Carers Week is a UK-wide awareness week to help bring the public's attention on carers and the issues they face. Parkinson's UK is one of 7 national partners this year.

Recent research showed that unpaid carers save the Government £119billion pounds a year, yet receive little support themselves. We think carers need more support and the replies to the survey will help build further evidence to present to politicians. The survey results will be released in Carers Week.

Carers Week is also a great opportunity for our local groups to organise events for carers or join in with other events happening locally.

Register any Parkinson's events you're planning on the Carers Week website and they will send you the materials to help you plan and promote your event. Carers Week events across the UK will be listed on the Carers Week website nearer the time.

We know that time is precious when you're a carer. But please do take time to complete the Carers Week survey if you can, to make sure people affected by Parkinson's are represented.

If you'd like to tell us your experiences of being a carer, email us at campaigns@parkinsons.org.uk

Exciting times for Parkinson's research in Europe

noreply@blogger.com (Parkinson's UK) — Thu, 09 Feb 2012 10:53:00 +0000

Our latest blog entry is from our director of research and innovation, Dr Kieran Breen, who has just returned from the launch of a European research strategy for neurology.

Earlier this week, I attended the launch of the Joint Programme for Neurodegenerative Disorders research (JPND) strategy.

This is an initiative, partly funded by the European Union (EU), to make sure research into neurodegenerative conditions, such as Parkinson's, is better integrated within Europe.

Parkinson's UK has been a key player in shaping this strategy and I represented the charity - as well as the European Parkinson's Disease Association (EPDA) - at 2 of the steering group meetings last year.

They also asked for details of the research that we are supporting, as Parkinson's UK is a major funder of Parkinson's research in Europe. In fact, we aim to spend at least £25million over the 5 year period 2010-2014.

The JPND research strategy highlights a number of priority research areas. These are the same as the Parkinson's UK research strategy launched in 2010 – disease pathology, animal models, drug screening and biomarkers. Maybe they 'stole' our ideas!

The JPND research programme aims to streamline research within Europe. While the EU will cover the administrative costs, the majority of the funding will come from the individual countries. So Parkinson's UK will have a great opportunity to be involved in some exciting new research. And, as a major funder of this type of research, we can help to shape the agenda.

I see this as a real step forward. It shows that the EU has a definite commitment to the study of neurodegenerative conditions, including Parkinson's.

And I think that this will be reflected in the 'piece of the pie' that will be available to us from the upcoming research strategy Horizon 2020. This will fund all areas of scientific research and is estimated to be worth up to €80billion in 2014-2020.

Over the coming months, you can be sure that we will be working hard to make sure that Parkinson's UK remains at the heart of research in Europe. This will bring us closer to our goal - to find a cure for Parkinson's.

Find out more about our research plans by emailing research@parkinsons.org.uk

Sad day for democracy

noreply@blogger.com (Parkinson's UK) — Thu, 02 Feb 2012 14:35:00 +0000

Yesterday the House of Commons voted to balance the deficit on the backs of people with Parkinson's, and other disabilities and long-term conditions, and voted to support the Welfare Reform Bill's cuts to the sickness benefit Employment and Support Allowance (ESA).

Worse still, the Government is using an archaic parliamentary rule to ensure that the Bill cannot return to Lords for any further votes, undermining the usual democratic process.

The main effect of the Bill is to limit contributory ESA for people in the Work Related Activity Group (WRAG) to 1 year. When the Bill was in the Lords they had voted to increase this to a more reasonable 2 years.

We think time-limiting a sickness benefit to one year is unfair to people with Parkinson's.

During the debate, when Dame Anne Begg was interrupted by noise from other MPs, she countered: "I'm sorry that you find all this very funny. The people with Parkinson's disease, the people with MS do not find this funny. It's their lives that are being undermined. It's them that will lack an independent income."

We couldn't have said it better ourselves, Dame Begg.

What does this mean for people with Parkinson's?

The year limit does not affect people who are in the Support Group (those who are not expected to work).

But many people with Parkinson's are in the Work Related Activity Group, where they are deemed capable of re-entering work subject to receiving a lot of support because of their condition. Only 6% of people in this group find work within a year.

The Bill also means that on the day of the introduction of this rule, in April 2012, contributory ESA will stop for many people who have received it for a year or more.

It may be that there are alternative benefits for people affected by this change. But entitlement to income-related ESA, or any other benefits, will depend on the circumstances of the claimants, and of their partners or spouses.

So anyone who thinks that this may affect them should seek advice now, from a Citizens Advice Bureau, or from our confidential helpline 0808 800 0303.

This time limit means that it's even more essential that everyone living with Parkinson's is correctly assessed for ESA, so they are in the right group for them.

We need evidence from people affected by the inaccurate ESA assessments – tell us your stories by emailing campaigns@parkinsons.org.uk

Exciting times for stem cell research

noreply@blogger.com (Parkinson's UK) — Fri, 27 Jan 2012 15:15:00 +0000

This week, early results from the world's first clinical trial using embryonic stem cells to treat eye conditions suggest the method is safe. This is an important step towards developing stem cells as a treatment, and offers hope for many conditions for which there isn't a cure at the moment – including Parkinson's.

Stem cells have great potential to grow new nerve cells that could one day be used to replace those lost in Parkinson's. And research around the world is making massive strides towards this goal.

In November last year, we reported on research in the US which used nerve cells grown from human embryonic stem cells to repair the brain in 3 animal models of Parkinson's.

While this early research is promising, more work is needed before stem cells can be tested in people with Parkinson's.

It's impossible to predict how long it will take for stem cell therapies to become a reality for people with Parkinson's. But we're funding some of the best and brightest UK stem cell scientists to move this vital research forward as quickly as possible.

Parkinson's UK-funded researcher Dr Rosemary Fricker answered some questions about stem cell research in our stem cell Q&A.

If you have any thoughts or questions about stem cell research, please add a comment below or email us on research@parkinsons.org.uk

How does your protein fold?

noreply@blogger.com (Parkinson's UK) — Fri, 13 Jan 2012 12:33:00 +0000

To do their jobs properly inside cells, proteins must first fold themselves into the correct shape. If they don't, trouble can result.

Hundreds of conditions, including Parkinson's, involve proteins that misfold and stick together which means cells can't work properly and eventually die.

In Parkinson's, the main culprit seems to be a protein called alpha-synuclein which misfolds and forms sticky clumps called Lewy bodies in the nerve cells that die. And research that we've funded has shown that alpha-synuclein may be responsible for the spread of the condition throughout the brain.

So finding ways to stop key proteins - like alpha-synuclein - misfolding holds great promise for developing new and better treatments.

Now, 2 exciting new research studies from a US research team may bring the hunt for new treatments closer.

In the first, published in PLoS Genetics, they pinpointed 9 genes that seem to play a vital role in keeping proteins inside cells healthy. And in the second, published in Nature Genetics, they identified 30 small molecules that help cells make sure their proteins are properly folded - which may have potential for treating conditions like Parkinson's.

These studies suggest that the key to folding may be 'chaperones' - proteins whose job is to help other proteins fold correctly and to help dismantle and remove damaged or misfolded proteins from our cells.

One of our current research projects, led by Professor Chris Moody at the University of Nottingham, aims to develop new drugs for Parkinson's that work by targeting chaperones (PDF file).

Parkinson's UK members recently visited Chris Moody's lab to hear more about his project.

There are lots of ways that people living with Parkinson's can get involved in our research. What would you like to do? Email us on research@parkinsons.org.uk

Looking ahead - hopes and plans for 2012

noreply@blogger.com (Parkinson's UK) — Mon, 09 Jan 2012 13:16:00 +0000

Now the tinsel is packed away, there is a lot to look forward to in 2012 - the year of the London Olympics, the Queen's Diamond Jubilee and, of course, Parkinson's Awareness Week 2012.

This year, Parkinson's Awareness Week runs from 16-22 April. Plans are underway to encourage as many people as possible to join us and to help raise funds to find a cure for Parkinson's.

With exciting research plans coming up this year, there are many ways to help us find a cure and improve the lives of everyone affected by Parkinson's. You can get involved in whatever way suits you, whether that's taking part in a research study or joining our Research Support Network.

With overseas adventures, running events like Run Highclere at Highclere Castle (the home of ITV1's 'Downton Abbey') and Party for Parkinson's, there are many way to help fundraise too, to help us in our vital work.

We'll continue to campaign to make sure that people affected by Parkinson's have the services and support they need. To help us make politicians and decision-makers listen, you can write to your MP, join our Campaigns Network or tell us your experiences about the NHS, benefit system or social care.

Let's build on the momentum of 2011. There's still work to do and we need you.

What are your hopes and plans for 2012? Add your thoughts below.

Parkinson's UK in 2011

noreply@blogger.com (Parkinson's UK) — Thu, 22 Dec 2011 14:30:00 +0000

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 res earch 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 car d, 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

noreply@blogger.com (Parkinson's UK) — Fri, 16 Dec 2011 17:34:00 +0000

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

noreply@blogger.com (Parkinson's UK) — Wed, 07 Dec 2011 10:33:00 +0000

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

noreply@blogger.com (Parkinson's UK) — Thu, 17 Nov 2011 11:00:00 +0000

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

noreply@blogger.com (Parkinson's UK) — Thu, 10 Nov 2011 15:20:00 +0000

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'

noreply@blogger.com (Parkinson's UK) — Fri, 04 Nov 2011 16:20:00 +0000

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

noreply@blogger.com (Parkinson's web manager) — Fri, 28 Oct 2011 14:45:00 +0000

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'

noreply@blogger.com (Parkinson's UK) — Wed, 12 Oct 2011 11:30:00 +0000

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

noreply@blogger.com (Parkinson's UK) — Mon, 03 Oct 2011 12:00:00 +0000

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

noreply@blogger.com (Parkinson's UK) — Mon, 26 Sep 2011 12:11:00 +0000

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

noreply@blogger.com (Parkinson's UK) — Thu, 15 Sep 2011 09:50:00 +0000

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

noreply@blogger.com (Parkinson's UK) — Fri, 09 Sep 2011 15:27:00 +0000

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

noreply@blogger.com (Parkinson's UK) — Fri, 02 Sep 2011 10:00:00 +0000

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

noreply@blogger.com (Parkinson's UK) — Fri, 26 Aug 2011 14:00:00 +0000

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

noreply@blogger.com (Parkinson's UK) — Fri, 19 Aug 2011 09:30:00 +0000

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

noreply@blogger.com (Parkinson's UK) — Fri, 12 Aug 2011 13:10:00 +0000

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

noreply@blogger.com (Parkinson's web manager) — Fri, 22 Jul 2011 13:10:00 +0000

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

noreply@blogger.com (Parkinson's UK) — Fri, 08 Jul 2011 09:09:00 +0000

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