A recent report from the Care Quality Commission (CQC) has shown more than a quarter of NHS and social services in England are failing to meet essential standards. John Bains, our Education Delivery Manager, talks about the impact of this report and what Parkinson's UK is doing to help.
The report by the CQC – established in 2009 to inspect and regulate health and social care services – is fairly damning. After inspecting 14,000 sites, including hospitals and care homes, they found many of them had problems with staff shortages and poor medicines management. At its worst, one nursing home was banned from admitting new residents because of concerns over how drugs were handed out.
Poor medicines management is something that people with Parkinson's experience far more often than they should and we have a whole campaign dedicated to it: Get It On Time.
Get It On Time forms a major part of the work that our national network of Education and Training Officers undertake. They go into hospitals, care homes and other organisations to help them understand more about Parkinson's and what their patients or residents need to make sure they are as well looked after as possible.
Last year our Education and Training Officers educated more than 19,000 health and social care professionals about Parkinson's. But, as the CQC's report makes clear, there's still plenty of work to be done.
Tell us your experiences so we can continue our work to make sure that people with Parkinson's get the best care possible.
Let us know if you, or the person you care for, have experienced any problems with care, and our Education and Training Officers can offer their expert advice and training. Contact us on professionals@parkinsons.org.uk
Together we can make a real difference.
Opening up European research
Every day new and important research discoveries are made and scientists publish their findings.
The research will probably have been publicly funded either through taxpayers’ money or charities and the researchers who wrote the paper don’t make any money from publishing it.
But unless you (or your workplace) pay a large fee, you won’t be able to access the research in full.
It’s a frustrating (and many believe) morally wrong system. And we firmly believe the results of publicly-funded research should be fully and freely available to all - take a look at our open-access publishing policy.
And now research funders are joining together to take a stand. This weekend, reports were circulating in The Guardian, that this could become a reality within 2 years.
What's more, on Friday the European Research Council announced that it is joining UK PubMed Central – an online biomedical research library that is leading the open-access revolution.
UK PubMed Central already has some heavyweight funders involved – including the Wellcome Trust, Medical Research Council, and of course Parkinson’s UK.
But getting the European Research Council on board, which has annual research funding budget of billions, is a major step forward for the open access movement.
Later this year the library will be re-christened ‘Europe PubMed Central’ encouraging other European funders to get involved.
And across the pond over 28,000 people recently signed a petition urging President Obama to make all federally funded research open-access.
But it’s not all about funders. Researchers have a massive part to play in the debate too.
We’ll be talking to UK researchers about open-access publishing at our research conference later this year and we’d like to tell them what you think about open-access publishing – so please tell us in the comments section below!
The research will probably have been publicly funded either through taxpayers’ money or charities and the researchers who wrote the paper don’t make any money from publishing it.
But unless you (or your workplace) pay a large fee, you won’t be able to access the research in full.
It’s a frustrating (and many believe) morally wrong system. And we firmly believe the results of publicly-funded research should be fully and freely available to all - take a look at our open-access publishing policy.
And now research funders are joining together to take a stand. This weekend, reports were circulating in The Guardian, that this could become a reality within 2 years.
What's more, on Friday the European Research Council announced that it is joining UK PubMed Central – an online biomedical research library that is leading the open-access revolution.
UK PubMed Central already has some heavyweight funders involved – including the Wellcome Trust, Medical Research Council, and of course Parkinson’s UK.
But getting the European Research Council on board, which has annual research funding budget of billions, is a major step forward for the open access movement.
Later this year the library will be re-christened ‘Europe PubMed Central’ encouraging other European funders to get involved.
And across the pond over 28,000 people recently signed a petition urging President Obama to make all federally funded research open-access.
But it’s not all about funders. Researchers have a massive part to play in the debate too.
We’ll be talking to UK researchers about open-access publishing at our research conference later this year and we’d like to tell them what you think about open-access publishing – so please tell us in the comments section below!
Heads in sand on social care
Yesterday saw the coalition government publish its plans for a 21st century care system for England.
The social care system is something none of us hope to encounter but millions of us will - either because you'll need care yourself or you have someone close to you who does.
At present, you couldn't design a worse system and it's been crying out for reform.
To some extent the Government has listened to concerns. The new social care White Paper means that if you're a person with Parkinson's in need of care, or a carer of someone with Parkinson's, your council won't be able to ignore you. There will be a basic national threshold of need over which anyone can expect some help, rather than 150 different councils each deciding what their own thresholds are.
There will be more national information and advice, as well as letting people share their views and recommendations on services, something which will help people with Parkinson's who have to fund their own care.
A Care and Support Bill will put more of this into practice. However most of this won't happen for 3 more years.
It all comes back to money.
The delay is down to the fact there's no real money to make these changes happen.
As always with social care it comes back to money: a system that's been starved of it for many years will just have to struggle on. The message from yesterday was it's not an economic priority - despite the costs to the NHS of having to pick up the pieces, and to people giving up work to care for others.
Similarly, there's no priority for the Dilnot report and its recommendation to cap the worst costs of care for people who have to sell their homes or bear years of funding their own care. Again the message from the Treasury is we can't afford to do anything to help - yet.
The Dilnot model helps people with modest assets and middle incomes, who stand to lose the most when faced with costs upwards of £35K for their care. Many people with Parkinson's fall into this category having faced years of covering their care costs.
Instead, 'pay when you die' screamed the headlines yesterday. The Government shifted attention to a planned nationwide scheme to help people defer paying care costs until after they die. The council would fund that person's care in return for recouping their costs when the person's home is sold. But in some areas councils already let people do this anyway.
The bottom line is that this isn't an answer to the politics of people having to sell their home to pay for their care.
What do you think?
We'll be digesting and responding to the Government's plans. We'd really welcome your views on this debate.
Do you agree or disagree with what the Government has done? What do you feel about people having to sell their homes to pay for their care? Is this an issue that's important to you? Add your comments below or email us on campaigns@parkinsons.org.uk
And while we consider our next moves to end the care crisis, sign up to our Campaigns Network - we'll keep you updated on our social care campaigning work.
The social care system is something none of us hope to encounter but millions of us will - either because you'll need care yourself or you have someone close to you who does.
At present, you couldn't design a worse system and it's been crying out for reform.
To some extent the Government has listened to concerns. The new social care White Paper means that if you're a person with Parkinson's in need of care, or a carer of someone with Parkinson's, your council won't be able to ignore you. There will be a basic national threshold of need over which anyone can expect some help, rather than 150 different councils each deciding what their own thresholds are.
There will be more national information and advice, as well as letting people share their views and recommendations on services, something which will help people with Parkinson's who have to fund their own care.
A Care and Support Bill will put more of this into practice. However most of this won't happen for 3 more years.
It all comes back to money.
The delay is down to the fact there's no real money to make these changes happen.
As always with social care it comes back to money: a system that's been starved of it for many years will just have to struggle on. The message from yesterday was it's not an economic priority - despite the costs to the NHS of having to pick up the pieces, and to people giving up work to care for others.
Similarly, there's no priority for the Dilnot report and its recommendation to cap the worst costs of care for people who have to sell their homes or bear years of funding their own care. Again the message from the Treasury is we can't afford to do anything to help - yet.
The Dilnot model helps people with modest assets and middle incomes, who stand to lose the most when faced with costs upwards of £35K for their care. Many people with Parkinson's fall into this category having faced years of covering their care costs.
Instead, 'pay when you die' screamed the headlines yesterday. The Government shifted attention to a planned nationwide scheme to help people defer paying care costs until after they die. The council would fund that person's care in return for recouping their costs when the person's home is sold. But in some areas councils already let people do this anyway.
The bottom line is that this isn't an answer to the politics of people having to sell their home to pay for their care.
What do you think?
We'll be digesting and responding to the Government's plans. We'd really welcome your views on this debate.
Do you agree or disagree with what the Government has done? What do you feel about people having to sell their homes to pay for their care? Is this an issue that's important to you? Add your comments below or email us on campaigns@parkinsons.org.uk
And while we consider our next moves to end the care crisis, sign up to our Campaigns Network - we'll keep you updated on our social care campaigning work.
A really good call for people with Parkinson's
Last week, we launched a first in the charity world - pay-monthly mobile phones that donate money to Parkinson's UK. Here, Rachel Backshall, our Head of Business Development, explains how the project came about.
"It seemed like a very simple idea; develop a mobile phone that lets people donate to the charity when they use it. 2 years later, it is fantastic to see the project finally come to fruition.
"Phones for Parkinson's started out as the brainchild of one of our supporters, Charles Easterman, who had started to have trouble using his mobile phone after being diagnosed with Parkinson's. Charles set us the challenge of developing an app that would make phones easier for people with Parkinson's to use. While developing this app, it dawned on us that our foray into phones could go one step further.
"Mobile phones were increasingly being used by charities through various 'text to donate' schemes, but we wanted to turn the simple act of using your mobile phone into a way to raise funds - and Phones for Parkinson's was born.
"Having already worked with Talking Telecoms to look at how people with Parkinson's were able to use a smartphone - we decided to team up to see if we could make this project a reality.
"Using Talking Telecoms' existing relationship with Orange, we were able to strike a deal where four tariffs and four popular handsets could be offered to customers, with 45 per cent of the profits from the cost of the handset and ongoing monthly bills being donated to us. We hope to raise £50,000 from this partnership in the first year.
"Although the project is still in its infancy, the reaction to the idea has been fantastic and we are already looking into how we can develop the project further, expanding into pay-as-you-go sims and other apps and accessories.
"We are really excited to see how Phones for Parkinson's will grow and with the number of active mobile phones in the UK now outnumbering those who live here, we can finally say that it really is 'good to talk'."
To find out more about Phones for Parkinson's, visit the dedicated pages on our website or call 020 3476 2626.
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| Paul Jackson-Clark, Charles Easterman and Rachel Backshall at the launch of Phones for Parkinson's |
Duplication in Parkinson's research? Not on our watch
A prime example of this is stem cell research.
In August last year Parkinson's UK-funded scientists succeeded in growing new nerve cells with a rare inherited form of Parkinson's.
This was followed swiftly in February this year by a research team in the US who announced that they too had made skin cells from nerve cells with genetic Parkinson's.
On the surface, these 2 achievements look identical. But dig a little deeper and you'll find a subtle but crucial difference.
Our researchers grew nerve cells with a mutation in alpha-synuclein, whereas the US team were studying cells with a change in the Parkin gene – 2 very different genetic mutations that have vastly different impacts on the nerve cells.
At Parkinson's UK we work hard to make sure every penny raised for research works as hard as possible.
Our rigorous research funding process involves international experts and people affected by Parkinson's which helps us to avoid duplication and make sure the projects we fund are meaningful to people living with condition.
We talk to other key players in the research community - including pharmaceutical companies, researchers, other funders and government bodies - to keep us right at the heart of international Parkinson's research.
And we're helping researchers to share their knowledge and work together.
Our research conference brings the UK Parkinson's research community together to share and discuss all the latest research.
And we provide funding to researchers for themed research workshops to bring people in their field together and develop new ideas.
So next time you see a familiar piece of research news, look a little closer – it's probably more exciting than you think.
Tell us your thoughts on Parkinson's research by visiting our forum, emailing research@parkinsons.org.uk or adding your comments below.
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