Select Committee on Health Written Evidence

Memorandum submitted by The Parkinson's Disease Society (CP 22)


  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.


  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. [58]


  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 pre-payment certificate

  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 the disease.

  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" is defined.

  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 health inequalities.

  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 request list.

    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".

Robert Meadowcroft,

Parkinson's Disease Society of the United Kingdom.

December 2005

58   Quinn N, Parkinsonism, Balliere's Clinical Neurology, 1997. Back

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