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Frequently asked questions - What patients and carers most often want to know

 

“As a lay person you don’t always know if your question is a sensible question or indeed what questions to ask?”

 

  • §When the diagnosis of Parkinson’s disease (PD) is first made, patients and their carers often have lots of questions.

  • §Answering these questions is the responsibility of all those involved with care, not just that of doctors. The information provided should be accurate and consistent. When uncertain of the answer to a question, it is the professional’s responsibility to seek the relevant information and to ensure that this is passed on.

  • §Some patients and carers may be intimidated by professionals and find it difficult to ask the questions that concern them, or to admit that they may not understand your answers. Anticipating common questions (“A lot of people ask about …”) and presenting the same information in different ways may help.

  • §Questions most commonly asked by patients with PD and their carers include:

    • §How certain is the diagnosis? Are there any tests or investigations that would make a difference? Would a brain scan help? Is there any point in me getting a second opinion?

    • §Are my problems typical of the condition? How do I compare with other patients?

    • §What is the cause of my Parkinson’s disease? Is it inherited? Are my children at risk?


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  • §What other symptoms might I expect to develop? Will my current symptoms get worse? How long will this take? Will I die from Parkinson’s disease?

  • §What are the different treatment options? What are the possible benefits of each and what are the risks? How likely are they to help and how likely are side effects? How long before I notice any benefit and how long will it last?

  • §Do I have to take drugs? What about complementary therapies? What about exercise?

  • §Is there anything I can do myself to help my symptoms, or prevent them getting worse? Is there anything that I should avoid doing? What about driving?

  • §What should I tell my family and friends?

  • §Where can I get more information about Parkinson’s disease and its treatment?§
  • §It is important that people are not overloaded with information when they first present. Questions can be addressed gradually over the weeks after diagnosis, prioritising the issues that are most important.

  • §Information usually needs to be repeated several times to ensure full understanding. Giving patients and carers relevant written information to back up what is said, should be part of routine care. 
FURTHER INFORMATION

The Parkinson’s Disease Society (tel 020 7931 8080)  can provide information about all aspects of PD and its management http://www.parkinsons.org.uk

Useful books include:

‘Parkinson’s At Your Finger Tips’, by Marie Oxtoby and Adrian Williams, published in 2002 by Class Publications, London. ISBN 1 872362 96 6
 
 

This site has been established for the dissemination of information. While every effort is made to ensure that information on this site is accurate and current we accept no liability for any omissions or inaccuracies that may have crept in. If in any doubt please contact your doctor for further advice.

Last Modified 13 August 2004
Maintained by Matthew Harris