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Improving support for carers is a key policy priority for the
Parkinson's Disease Society (PDS), as voted for by the Society's
AGM for several successive years.
Carers of people with Parkinson's can face significant
challenges getting the support and information they need. The PDS
members' survey found that less than a third of carers were aware
of their right to a carer's assessment and only 11% were getting
help from their local social services. The PDS continues to lobby
government around support provided for carers.
Advice and information
For information about the support currently available to carers
please visit the advice section of this
website, or download a copy of our
Carer's Guide in PDF (3.9MB).
Life with Parkinson's today – room for improvement
The results of the PDS's membership survey, Life with
Parkinson's today - room for improvement, highlighted a number
of issues facing carers of people with Parkinson's. Carers were
caring for longer than when the membership was last surveyed in
1997, but receiving less support, with just 11% getting help
through their local social services. Over half of carers reported a
health problem themselves.
View the survey findings and download a
copy of the report
Carers hit by economic crisis
On 5 December 2008 Carers UK published research showing that
carers are facing extreme hardship during the recent economic
downturn and that the number of carers struggling to make ends meet
has risen dramatically since 2007. Two-thirds of carers are in fuel
poverty; over half in debt; and over half cutting back on
essentials like food or heating to make ends meet.
A copy of Carers in crisis: a survey of carers' finances in
2008, is available from the
Carers UK website
Carers poverty protest group
A group of carers have started the 'Carers Poverty Protest'
group, and are organising a nationwide protest on 22 April 2009, to
highlight concerns about the benefits and support available for
carers, including the low level of Carer's Allowance. Further
information about the campaign is available from the Carers Poverty Protest
discussion forum
National Carers' Strategy
The government has published its new National Carers' Strategy,
Carers at the heart of 21st century families and
communities.
View the strategy and a summary document on the Department of
Health website. The Department of Health has also
published
reports from the four taskforces established to advise
ministers on the Carers' Strategy.
The Strategy includes £255 million of addition support to carers
in England over the next 3 years, including commitments to increase
the availability of respite services. There are no immediate
measures, however, to address the low level of carers' benefits.
Download a
detailed briefing on the new strategy and what it means for carers
of people with Parkinson's (PDF, 63KB)
Recent submissions
The PDS responds to government and other consultations likely to
affect carers.
View the
PDS response to the government consultation on the future of care
services in England – November 2008
View
the PDS response to the Welfare Reform Green Paper 'No one written
off' in PDF - October 2008 (86KB)
View the PDS response to the Work and Pensions Select
Committee Inquiry into carers – April 2008
Download the PDS response to
the Scottish Government consultation on respite care in PDF -
January 2008 (60KB)
Download the PDS
response to the Work and Families Bill in PDF - December 2005
(23KB)
Have your say
The PDS website forum includes a
Carers, friends and family forum, a chance for you to talk to
other carers about your experiences and share your views about the
issues that matter to you.
Contact us
If you are a carer and would like to make your views known,
please email campaigns@parkinsons.org.uk
or write to:
Social Policy and Campaigns team
Parkinson's Disease Society
215 Vauxhall Bridge Road
London SW1V 1EJ
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