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

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

'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

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

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