Memorandum by the Parkinson's Disease
Society (SC 19)
FUTURE OF SOCIAL CARE SERVICES
1. SUMMARY
We would like to highlight the following areas
for particular attention:
— The PDS would like to highlight the flexibility
provided to people with Parkinson's by Attendance Allowance and
other disability benefits. It is important that these benefits
are not lost in seeking ways to fund social care in the long-term
— There is a clear need for better information
and signposting to social care services
— Long waits for aids and equipment needs
to be addressed as a priority
— There is a need for ongoing support for
all people with a long-term condition, with an identified point
of contact.
2. ABOUT THE
PARKINSON'S
DISEASE SOCIETY
2.1 Parkinson's Disease Society (PDS) was
established in 1969 and now has 30,000 members and over
330 local branches and support groups throughout the UK.
It provides support, advice and information to people with Parkinson's,
their carers, families and friends. It also provides information
and professional development opportunities to health and social
services professionals involved in their management and care.
2.2 This year, the Society is expected to
spend £4 million on research into Parkinson's Disease.
The Society also develops models of good practice in service provision,
such as Parkinson's Disease Nurse Specialists, community support,
and campaigns for changes that will improve the lives of people
affected by Parkinson's.
ABOUT PARKINSON'S
DISEASE
2.3 It is estimated that 120,000 people
in the UK have Parkinson's. Parkinson's is a progressive, fluctuating
neurological disorder, which affects all aspects of daily living
including talking, walking, swallowing and writing. The severity
of symptoms can fluctuate, both from day to day and with rapid
changes in functionality during the course of the day, including
sudden "freezing".
2.4 Parkinson's affects people from all
social and ethnic backgrounds and age groups. The average age
of onset of Parkinson's is between 50-60 years of age, though
one in seven will be diagnosed before the age of 50 and one
in 20 will be diagnosed before the age of 40.
ISSUES AND
EVIDENCE
3. Future funding of long-term residential
and domiciliary care for older people and people with physical
or learning disabilities
3.1 The PDS recognises that in order secure
an acceptable level of social care services in the long-term future,
additional sustainable funding must be identified. We do not have
a preference as to how this additional funding should be achieved,
though we are currently surveying members about their views of
the options put forward by the government in the social care Green
Paper and would be pleased to submit the results of this consultation
to the Committee as additional evidence later this year.
3.2 However, the PDS is extremely concerned
at proposals in the Green Paper to abolish Attendance Allowance
to help pay for care. We know how important this benefit is to
maintaining the independence of people with Parkinson's, giving
people the flexibility they need to meet the additional costs
of their disability. In effect, Attendance Allowance is the perfect
direct payment, and is one of the strongest elements of the existing
care and support system.
3.3 Attendance Allowance is also clear and
transparent—if the claimant can demonstrate sufficient incapacity
they will get benefit and be paid at the same rate wherever they
live in the UK, avoiding the local inconsistencies that people
experience in social care. Because it is non means tested, people
know the exact amount they will qualify for if they meet criteria.
3.4 It is essential that the future care
system builds on the positive benefits of Attendance Allowance
and incorporates these advantages into any new system.
4. More effective, consistent and user-friendly
social care services
4.1 The All Party Parliamentary Group for
Parkinson's disease recent Inquiry report[68]
highlighted inconsistencies in access to health and social care
services across England, Wales and Northern Ireland.
4.2 We welcome the commitment by the current
Government to introduce a National Care Service, that would deliver
a system of care and support across England "which is not
subject to a post code lottery.[69]"
Addressing the post code lottery in social care is an important
commitment that we would like to see taken up by all political
parties and we look forward to scrutinising the detail of the
Government's proposals in the forthcoming White Paper.
5. Provision of information
5.1 The APPG for Parkinson's disease Inquiry
identified poor information provision and signposting to services,
especially with regard to signposting to social care support.
The Inquiry Report[70]
highlighted the need for health professionals working with people
Parkinson's to provide information about relevant social care
services and how to access these. It recommended that commissioners
of health and care services must be required to provide information
and signposting, with effective monitoring to ensure that this
is delivered.
5.2 The PDS members' survey[71]
highlighted the impact of this poor information on people with
Parkinson's and their carers. For example, over half (52%) of
carers identified "getting expert advice on health and social
services"; as "very important", but only a fifth
(20%) were actually receiving this, and only a third of carers
were aware of their right to a carers' assessment.
5.3 There is a clear need for an improved
structure for ensuring that people know where to go to receive
information and signposting to services, including support for
those organising their own care, with a clear point of contact
for every client.
6. Equipment and aids to daily living
6.1 The APPG for Parkinson's disease Inquiry
report highlighted the benefits of aids and adaptations in enabling
individuals to maintain independence and continue living in their
own homes.
6.2 Long waits for aids and equipment has
been identified by people with Parkinson's as a major problem
in many parts of the UK, which can result in deterioration in
the health of the person with Parkinson's. We also frequently
hear from carers who have developed back problems through having
to manage whilst waiting for hoists to be fitted.
6.3 The PDS members' survey found more than
one in ten (11%) respondents felt that their home was not suitable
for them, 7% reported that stairs or steps were a problem and
4% needing other adaptations. The survey also found that many
people with Parkinson's are purchasing their own equipment, and
many of these were doing so without advice. For example, of the
41% of respondents who had purchased bathroom aids, over half
had done so without professional advice.
6.4 Quality Requirement 7 of the NSF
for long-term neurological conditions relates specifically to
providing equipment:
6.5 "People with long-term neurological
conditions are to receive timely, appropriate assistive technology/equipment
and adaptations to accommodation to support them to live independently;
help them with their care; maintain their health and improve their
quality of life."
6.6 However, the evidence from our members'
survey and the APPG Inquiry report demonstrates that this is not
being delivered in many areas. Proper implementation of existing
policy drivers, such as the NSF, is essential. The PDS supports
the APPG for Parkinson's disease's call for a review of the NSF
for Long-term (Neurological) Conditions to measure progress made
towards implementation at its half-way point, against its 11 quality
requirements for health and social care.
7. Need for ongoing support for people
7.1 We would also like to see ongoing support
and regular review of all people with an identified long-term
condition. People with Parkinson's tell the PDS that they lose
all contact from their social services after a one-off intervention,
such as a respite break or the provision of a piece of equipment,
and in many cases they are not given a named contact and phone
number to call in emergency.
October 2009
68 Please mind the gap: Parkinson's disease services
today, All Party Parliamentary Group for Parkinson's Disease,
2009. Back
69
Prime Minister and Leader of the Labour Party Gordon Brown; speech
to the Labour Party conference, 29 September 2009. Back
70
Please mind the gap, op cit Back
71
Life with Parkinson's today-room for improvement, Parkinson's
Disease Society, 2008. Back
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