Memorandum submitted by The Parkinson's
Disease Society (CP 22)
1. THE PARKINSON'S
1.1 Parkinson's Disease Society was established
in 1969 and now has 30,000 members, 25,000 supporters and over
300 local branches and support groups throughout the UK.
The Society provides support, advice and information
to people with Parkinson's, their families and their carers; information
and professional development opportunities to health and social
services professionals involved in their management and care,
and raises funds for research into the nature, cause and impact
of the disease.
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 Specialist's community support,
and campaigns for changes that will improve the lives of people
affected by Parkinson's.
2. ABOUT PARKINSON'S
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,
which is one in 500 of the general population. Approximately 10,000
people are newly diagnosed with Parkinson's each year in the UK.
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.
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.
Most people are diagnosed over the age of 60,
however younger people can also develop Parkinson's. One in seven
people are estimated to be under the age of 50 when first diagnosed
with Parkinson's disease and one in 20 are under the age of 40
when first diagnosed. 
3.1 The Parkinson's Disease Society is most
concerned about the charges levied on prescription items. The
Society believes that the current system of prescription charges
perpetuates health inequalities by discriminating against millions
of people with long term illnesses deterring many of those on
low incomes from getting the medication they require. They are
a disproportionate levy on a limited section of the population
and are in effect a regressive tax on those with long term conditions.
3.2 It is widely acknowledged that the current
system is illogical, unfair and discriminatory as regulations
only provide an exemption for a small number of health conditions.
Millions with long term conditions aged between 18 and 60 may
have to pay charges including more than 17,000 people with Parkinson's.
In 2001 the National Association of Citizens Advice Bureaux surveyed
1,062 of their clients UK-wide and found that 28% did not get
their prescriptions dispensed because they could not afford them.
Half of those surveyed said they found the charge difficult to
afford and one third of those who reported difficulty affording
prescription charges said they could not afford the cost of the
3.3 According to the British Medical Association
all GPs have anecdotal evidence of patients asking which of two
or more items on a prescription form are the most important as
they cannot afford to pay for more than one at a time.
4.1 In a Parliamentary Answer on 5 May 1998
the then Secretary of State for Health stated: "The list
of medical conditions exempt from prescription charges was agreed
in 1968 following extensive discussions with the medical profession.
These resulted in a limited list of readily identifiable, permanent,
life-long conditions all of which require regular medication".
4.2 Parkinson's disease is a chronic progressive
neurological condition for which there is no cure and it is one
of the few neurological conditions for which specific drug treatments
are available. Although they do not cure the condition or halt
its underlying progression they can make a huge difference to
the symptoms and greatly improve people's quality of life. For
the individual with younger onset Parkinson's particularly, sustained
and consistent daily medication is essential to management of
4.3 The most frequently used drug to treat
Parkinson's is Levadopa, a compound one step removed from dopamine,
the chemical messenger which is in short supply in Parkinson's.
Once the Levadopa reaches the brain it is changed into dopamine,
so making up for the shortage. These drugs are therefore a form
of replacement threrapy like insulin in diabetes. However, there
are people who are initially given dopamine agonist drugs which
stimulate the area of the brain where the dopamine works. These
"agonist" drugs may not be as immediately effective
against symptoms but they also do not produce as strong side effects
as Levadopa and so are often given to newly diagnosed people to
treat their Parkinson's and to delay using Levadopa until the
symptoms have become more severe.
4.4 People with Parkinson's depend on medication
to help control their symptoms and maintain their quality of life.
As the condition progresses people with Parkinson's often move
on to more medications to control their symptoms many of which
can have powerful side effects that need to be managed with other
drugs. They may also develop co-morbidities such as incontinence,
sleep disturbance, depression and pain so their drug regime may
increase. This can mean some people may have to pay for multiple
prescriptions to treat their conditions.
4.5 An audit of drug treatment in people
with Parkinson's showed that on average they take at least five
different medicines and some are prescribed up to 15 medicines
to be taken three or four times a day. This places an enormous
financial burden on many people with Parkinsons below the age
of 60. This may be particularly so in younger families with substantial
financial commitments for whom the loss of regular income can
lead to severe hardship.
4.6 Under current arrangements all older
people with Parkinson's over 60 years of age do qualify for free
prescriptions. However, one in seven of those diagnosed with Pd
are under 50 years of age.
4.7 As people with Parkinson's are not exempt
from charges this can present particular difficulties for people
because the income frequently provided by (employed) partners
combined with benefits paid to the person with Parkinson's can
result in a gross income which is superficially high (and thus
prevent any entitlement to free prescriptions) yet when financial
commitments are fully accounted for, actually result in an available
family income well below the perimeters by which "low income"
4.8 If people do not take their medication
as prescribed their clinical condition is likely to deteriorate
possibly leading to the onset of severe disability or to hospitalisation
and acute care. This can have significant cost and resource implications
for the NHS and society. Ensuring that people receive their medication
on time to control their symptoms is critical for the effective
management of Parkinson's. If a prescribed drug regime is not
strictly followed symptoms will become difficult to control which
may result in them requiring additional care and in a decline
in the person's condition that they may be irreversible.
5.1 Exemption from prescription charge for
those with long term medical conditions is the only option that
will ensure those in need get the medication they require based
on clinical need rather than age or ability to pay.
5.2 The exemption from prescription charges
for people with long term conditions has both clinical and savings
implications. Significant savings could be realised through reduced
administrative costs and avoidable admissions to hospital. Abolition
of charges for people with long term medical conditions would
also be consistent with the Government's commitment to reducing
5.3 The existing list of exemptions for
chronic conditions dates back to 1968 when few medicines were
available; some conditions which are now treated extensively with
medicines were rarely diagnosed then. Hence the continuation of
these exemptions creates an arbitrary division between those who
pay and those who do not.
5.4 With medical advances in the last 30
years resulting in the ability to manage long-term conditions
such as Parkinson's much more effectively and long term, there
is a clear basis for exempting those with Parkinson's from charges.
The Society believes that including Parkinson's disease with those
conditions which are exempt from prescription charges will ensure
that the exemption list is equitable, consistent with coherent
medical practice and fully reflects patient's clinical needs.
Person with Parkinson's Disease Case Study
"I was diagnosed with Parkinson's disease
at the age of 45. I was told `There is no cure for this illness,
but medication will alleviate the symptoms.' I was prescribed
1 drug which alleviated the symptoms for a short time.
Within two years, my drug regime had increased
to three different drugs on a daily basis. I now need seven different
drugs on a daily basis and, because of other Parkinson related
health problems, I have a total of 13 items on my prescription
At the age of 49, I retired on health grounds,
resulting in a drastic decrease in income. Reduced income or not,
I required continuous medication.
Although I was aware that a Prepayment Certificate
would save money, this is not always possible to someone with
a young family. Other bills are paid, new uniforms are bought
and the Prepayment Certificate tends to be put off till `next
month.' False economy, but a fact of life.
At this stage of my Parkinson's, had I not had
regular medication, I would probably need 24 hour care. I would
not be able to function. I would need to be washed, to be dressed,
to be fed, to be moved. I would probably be a burden to the `Care
In The Community Team.
Parkinson's is for life. My daily drug regime
makes that life possible. Medication gives me a degree of independence".
Parkinson's Disease Society of the United Kingdom.
58 Quinn N, Parkinsonism, Balliere's Clinical Neurology,