APPENDIX 15
Memorandum by the Parkinson's Disease
Society of the United Kingdom (CC 24)
1. THE PARKINSONS
DISEASE SOCIETY
1.1 Parkinson's Disease Society was established
in 1969 and now has 30,000 members, 19,000 supporters and over
300 local branches and support groups throughout the UK.
1.2 The Society provides support, advice
and information to people with Parkinson's, their carers, families
and friends, and information and professional development opportunities
to health and social services professionals involved in their
management and care.
1.3 Each year the Society spends more than
£2 million on funding research into the cause, cure and prevention
of Parkinson's, and improvements in available treatments. 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.
2. ABOUT PARKINSON'S
DISEASE
2.1 Parkinson's Disease is a progressive
neurological disorder. It affects all activities of daily living
including talking, walking, communication, swallowing and writing.
It is estimated that 120,000 people in the UK have idiopathic
Parkinson's. That is one in 500 of the general population. Approximately
10,000 people are newly diagnosed with Parkinson's each year in
the UK.
2.2 Parkinson's occurs as a result of a
loss of cells that produce the neuro transmitter dopamine. Dopamine
is one the chemical messengers that we have in the brain which
enables people to perform coordinated movements. As yet it is
not known why these cells die.
2.3 The three main symptoms are tremor,
muscle rigidity and slowness of movement. However not everyone
will experience all three. Other symptoms include a lack of facial
expression, difficulties with balance, problems with an altered
posture, tiredness, speech difficulties, pain and depression.
Parkinson's affects people from any ethnic background and any
age group. Most people are diagnosed over the age of 60, however
younger people can also develop Parkinson's. It is estimated that
one in 20 people are diagnosed Parkinson's under the age of 40.
3. SUMMARY
3.1 The Parkinson's Disease Society welcomes
the inquiry into NHS continuing care as this area causes considerable
concern for people with Parkinson's disease and their families
and carers. Too often we receive calls and letters outlining situations
where through a lack of understanding about the impact of the
disease people have been denied NHS funding for their long-term
care. Historically it was difficult to understand who was entitled
to continuing NHS health care and the local eligibility criteria
resulted in actual and potential injustice to some people with
Parkinson's disease and their carers who had to pay for their
own care when the NHS should have paid for it. Applying for continuing
care funding was on occasions a lottery.
3.2 In December 2004 the Health Service
Ombudsman published a report on the problems experienced by disabled
and elderly people in accessing NHS funding for long term care.
This revealed persistent problems at the heart of the continuing
care framework and in the absence of clear and consistent national
criteria for continuing care funding resulted in confusion and
inequity in the way decisions were made about patients continuing
health care needs.
4. INTRODUCTION
4.1 NHS continuing care is a package of
care arranged and funded solely by the NHS for people who need
it because of a disability, accident or illness, to address both
physical and mental health needs. To be eligible for continuing
NHS healthcare a person must have a complex medical condition
that requires regular care and support, and/or a very specialised
nursing support.
4.2 For people with Parkinson's disease, the
quality and quantity of health and social care services is of
paramount importance. Parkinson's disease is a chronic progressive
neurological disease affecting all aspects of daily living. There
is as yet no cure. Treatment is predominately pharmacological
and as such is associated with many misunderstood side effects.
5. DR STEPHEN
LADYMAN'S
MINISTERIAL STATEMENT
5.1 The Society welcomes Dr. Stephen Ladyman's
statement on NHS continuing care. In the absence of revised national
guidelines, however, the difficulties in interpretation and confusion
over the distinction between continuing care and "free"
nursing care remain.
5.2 The policy on who is entitled to continuing
NHS healthcare is explained in local eligibility criteria. If
someone is assessed as needing continuing NHS healthcare they
do not have to pay any of the costs, instead the NHS pays the
whole cost. The problem is that the decision on who qualifies
for this funding varies across the country resulting in a postcode
lottery because each strategic health authority (SHA) has its
own local eligibility criteria.
5.3 The Parkinson's Disease Society endorses
the six recommendations from the Health Service Ombudsman report
in December 2004, in particular urging the establishment of clear,
national minimum eligibility criteria which are understood by
health professionals, patients and carers alike, to end the postcode
lottery for people with long-term conditions.
6. CRITERIA FOR
NHS CONTINUING CARE
AND DEVELOPING
SHA-WIDE POLICIES
6.1 The fundamental problem with the NHS
continuing framework as it currently stands is that in most cases
people in later stages of progressive neurological conditions
are not recognised as entitled to full NHS continuing care. Consequently
many of their support and care services which are provided by
Social Services are chargeable via means testing. Similarly people
going into residential or nursing home care on a respite or permanent
basis will also pay for this via a means test. The inequality
experienced by people with Parkinson's disease is apparent when
compared to someone with a "recognised" illness.
6.2 It appears that the care path that people
enter, either primarily NHS, or through social care, heavily influences
their access/eligibility to NHS provision including palliative
care. In order to ensure equality, it is crucial that continuing
health care is provided according to need and not disease label,
age of the patient or their history of NHS involvement. Care for
people with Parkinson's disease should clearly be a continuing
health care responsibility. We are delighted that the existing
95 health authority criteria have been condensed into the 28 Strategic
Health Authority criteria. We urge that it is essential that the
Strategic Health Authorities review their existing criteria to
ensure that it is applied consistently and that the implementation
guidance builds upon good practice.
7. REVIEW OF
PAST FUNDING
DECISIONS TO
READDRESS THE
CONSEQUENCES WHERE
PATIENTS WERE
WRONGLY DENIED
FUNDING
7.1 We welcome that the Department of Health
have provided restitution to individuals who were wrongfully denied
funding for their long-term care, however we have heard of situations
where individuals incurred delays from NHS bodies in paying money
owed to them, and where some havebeen re-assessed as being incorrectly
denied money.
7.2 We would urge that the new framework
is explicitly clear and that the supporting guidance leaves no
room for error in the implementation of the criteria. Individuals
must not be unfairly denied funding for an essential service that
they require.
7.3 The Society welcomes that Strategic
Health Authorities must review their eligibility criteria to ensure
that they are lawful and consistent, and both current and past
cases must be reviewed to ensure that individuals are reimbursed
when they have been unfairly denied continuing care.
8. FURTHER DEVELOPMENTS
TO SUPPORT
THE IMPLEMENTATION
OF A
NATIONAL FRAMEWORK
8.1 We welcome the development of a national
framework for assessing continuing care, but there still remains
the challenge of implementation and interpretation of the criteria.
We would recommend the development of assessment tools and good
practice guidance to support the implementation of the criteria.
8.2 It is essential that the assessments
consider the issues of stability or complexity or intensity of
need from all the perspectives and over the full period, and not
at a single point in time.
8.3 NHS bodies need further support, guidance
and development from the DOH to expand local capacity and to ensure
all new requests for continuing care are decided promptly and
properly and according to a national framework.
February 2005
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