The Pharmaceutical Journal
Vol 270 No 7250 p724
24 May 2003

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Clear and accurate information needed in order to keep patients informed — the Parkinson's Disease Society view

By Tom Thorpe

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Medicines are the primary treatment that the majority of people with Parkinson's disease use to control their symptoms. Crucial to helping people getting their medicines and making the right decisions about them are the pharmacist, patient information leaflets and the way that medicines are packaged and distributed.

People with Parkinson's disease are often heavily reliant upon a complex cocktail of drugs to improve their daily living. As the symptoms of the disease are unique to the individual so, too, are the dosage, timing and types of medicines that people take to control their symptoms.

Patients' problems

Some prescribed courses of medicines for Parkinson's disease are distributed in patient packs but evidence from our members suggests that sometimes:

• Packs of medicines are split for no apparent reason and people are then uncertain if they should take the tablets for a limited time only

• Many patients are started on branded medicines and switched to generic medicine; they can become confused between branded and generic names

• Patients find that when they are given parallel-imported medicines their colour, size and shape appear different from their usual medicines; in some cases the patient information leaflets appear to have been written in the country of origin

For these reasons, and because people with Parkinson's disease are so dependent on many different medicines, accurate and good quality written information on drugs is important. Many people confuse Parkinson's disease with apathy, slowness and dementia. Many are thought to be rude or stupid because of the lack of spontaneity in their face and gestures. This can cause isolation and loneliness and a heavy reliance upon written advice and support.

Government policies, such as the NHS plan and the expert patient programme, put patient empowerment at the heart of policy and aim to ensure that patients are informed about their medicines and able to discuss their treatment with health care professionals. If patients' with long-term conditions like Parkinson's disease are to be informed, they need clear and accurate information to advise them. Combined with this, clear and accurate information may increase compliance with treatments.

Key elements that should be considered for patient information in drug packages arethat language is written in a patient-friendly style, and that things such as side effects are discussed in a way that demonstrates an understanding of the disease and of the effects that can arise with the medicines

Other things to be taken into account are the way medicines are packaged and distributed. It would be helpful if the information sheets or local pharmacists could emphasise that differing methods of dispensing are available as often people with Parkinson's disease have mobility problems or rely on carers to collect their medicines. Often, tablets or capsules come in blister packs or childproof bottles or containers and the person with Parkinson's has considerable difficulty releasing the medicines.

Patient information leaflets are important but the role of the pharmacist is critical. Pharmacists provide valuable advice on all aspects of taking medicines. For instance, if someone presents with swallowing difficulties, which can be common in Parkinson's disease patients, pharmacists can advise on liquid or dispersible formulations that may be available.

It is important that people understand the progressive nature of Parkinson's disease, the main symptoms and those additional problems, such as hallucinations, pain and constipation, that may occur and the side affects of the drugs that they are prescribed.

Joint programme

Realising these and other issues the Parkinson's Disease Society has joined with the National Pharmaceutical Association to produce a CD-ROM that highlights issues and ways of helping people with Parkinson's disease. It might be possible for the pharmaceutical industry to work with the society to produce a generic leaflet that can go in each medicine pack offering advice and information about the services available from the society, such as local support, information and professional advice from its helpline.

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