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."