Treatments and therapies Talking to your GP, specialist or Parkinson s nurse about Parkinson s Making the most of the time you spend with the professionals involved in your care is a good way to stay informed, prepared and in control. This information sheet gives some helpful tips on how you can prepare for your appointments with your GP, specialist or Parkinson s nurse (if you have one). Who do I need to see? Before you make an appointment, you may find it helpful to think about which healthcare professional will be able to provide the best support for you. GP It s natural to assume any health problems you have are related to your Parkinson s, but there may be other, more common causes. In these instances, an appointment with your GP may be all you need. For many people, their GP is their first point of contact and the easiest to access. In some areas, your GP will need to refer you to your specialist. Specialist or Parkinson s nurse If you know the issue is about Parkinson s, or you need to discuss Parkinson s medication, you should see your specialist or Parkinson s nurse.
Parkinson s specialists are hospital doctors, usually neurologists or specialists in the care of older people (geriatricians), with a particular interest in Parkinson s. Parkinson s nurses are registered general nurses, with specialist experience, knowledge and skills in Parkinson s. They provide a vital role in the care of people with Parkinson s, including offering guidance on managing medication. Currently, not all areas of the UK have Parkinson s nurses. If you want to find out more about the healthcare services available in your area, your local Parkinson s UK information and support worker can help you. See page 10 for more information. Other healthcare professionals Your GP, specialist or Parkinson s nurse may also be able to refer you to other healthcare professionals, such as physiotherapists, occupational therapists or speech and language therapists. Find out more: see our information sheets Physiotherapy and Parkinson s, Occupational therapy and Parkinson s and Speech and language therapy and Parkinson s. Preparing for your appointment You may find it helpful to prepare yourself for your appointment and think about what you want to get from it. The more information your GP, specialist or Parkinson s nurse has about your condition, the more they will be able to help. Here are a few tips to help you with whichever healthcare professional you are seeing. Be aware of the services that may be available You may find it helpful to read published guidelines that recommend the standard of care people with Parkinson s should receive from the NHS. In England and Wales, the National Institute for Health and Clinical Excellence (NICE) has a guideline that advises on the most effective treatment and care. This guideline has also been adopted for use in Northern Ireland. In Scotland, NHS Quality Improvement Scotland has produced Clinical Standards for Neurological Health Services and the Scottish Intercollegiate Guidelines Network (SIGN) has produced an evidence-based guideline about the most effective treatments for Parkinson s. (These mainly relate to the diagnosis and drug treatment of Parkinson s). The range of services available and how you access them will vary from area to area. Ask your healthcare professional for more information. National Institute for Health and Clinical Excellence (NICE) www.nice.org.uk NHS Quality Improvement Scotland www.scottishneurological.org.uk Scottish Intercollegiate Guidelines Network (SIGN) www.sign.ac.uk You may be ill for reasons other than Parkinson s. Ask your doctor to consider options that aren t to do with your condition it s very easy to assume everything is related to Parkinsons. Garth, diagnosed in 2009 2
Make a list Making a list of the questions you want to ask before your appointment will help you feel more prepared. For example: yare there symptoms you want to discuss? ydo you think you need a review of your medication? ywould you like a referral to a service such as physiotherapy or speech and language therapy? Try to make your questions as concise as possible. You may want to give your GP, specialist or Parkinson s nurse the list to read at the beginning of the appointment. Ask for more time Remember that many healthcare appointments can be quite short. If you have several things you want to talk about, tell the receptionist when you call to make an appointment. They may be able to offer a double appointment it s always worth asking. Check they have the right information If you have had appointments with any other healthcare professionals involved in your care, you may find it helpful to make sure that any information or letters from each person has been received before your appointment. For example, if you ve had an appointment with your specialist or Parkinson s nurse and they changed your medication regimen, it may be useful to check your GP has this information before making an appointment. You can ask for copies of any letters your specialist or Parkinson s nurse has sent to your GP. Keep a diary How Parkinson s affects someone can vary from day to day, so you may find it difficult to remember exact details about any symptoms, side effects or feelings you may be having. To help you and the healthcare professional you re seeing to understand how your condition affects you on a daily basis, it may be helpful to keep a diary. If you re taking Parkinson s medication, it may help to record the dose, the time you took the drug and what happens to your movement symptoms in a diary. It may also be helpful to fill in the non-motor questionnaire on page 8 so that your healthcare professional understands what symptoms you are experiencing that aren t related to movement. These may include pain, sleep problems and constipation. Find out more: see our information sheets Keeping a diary: people with Parkinson s and Keeping a diary: for carers. At the appointment Take someone with you You may find it helpful to take someone with you to your appointment for moral support perhaps your partner, a family member or friend. Let whoever comes with you know what you want to talk about before your appointment, so that they can 3
remind you if anything slips your mind. If you have problems speaking or writing, the person with you may also help by speaking on your behalf or taking notes. Sometimes, you may feel more comfortable going to appointments alone. This may be the case if you re concerned about talking about your condition in front of the people closest to you, or find it difficult to ask about sensitive issues when someone else is with you. Remember your medication Generally, any changes to your Parkinson s medication should only be made in consultation with your specialist or Parkinson s nurse, but you can still speak to your GP about your medication. When you talk to any healthcare professional about medication, make sure they know about any other drugs, vitamins or supplements you take. Just after my diagnosis, my GP retired. My new GP s approach came across as, I m the doctor, what I say goes! I felt belittled and unable to discuss anything. Three years ago I changed GP and what a difference my new doctor encourages me to maintain a positive attitude and advises me on issues that may affect my treatment. He has recognised my need to be independent and does his best to help me with this. Josie, diagnosed in 2007 You may find it helpful to take your medication with you to your appointments, including the bottles or packaging. Or you could just take a list of what you are taking, how much and when. It can be hard to remember the names of each drug, particularly if you take a number of different medicines. Find out more: see our Parkinson's medication card, which you can use to record all your drug treatments, your details and your doctor's details. See page 12 for how to order our resources. If you re prescribed new medication at your appointment, make sure you understand what it s for and how you're supposed to take it. If you re confused by some of the instructions, ask for an explanation. Also make sure you know about any side effects and what you need to do if you experience them. Make a note of the time and dose of each medication and the length of time it takes for them to start working. If you are reporting back on how well a recent change to your medication is working, write down any side effects or improvements you have noticed. Give this to your GP, specialist or Parkinson s nurse on arrival, so they have this information to hand during your appointment. If you feel unsure after your appointment, don t worry. You can contact your healthcare professional or speak to your local pharmacist. Your pharmacist should be able to provide you with information about the medication you are taking. They often have more time than doctors to talk to you about the drugs you have been prescribed and how potential side effects may affect you. Take your medication as prescribed and don t stop the treatment without speaking to your specialist or Parkinson s nurse even if you feel the medication isn t working or you are finding the regimen difficult to follow. Complications don t necessarily mean the drugs aren t effective. Your regimen may just need adjusting. Some people with Parkinson s and their carers have suggested it may be a good idea to see your specialist or Parkinson s nurse both at times when your tablets are working well and when they re wearing off. This way, your specialist or Parkinson s nurse can see how your medication affects you generally. 4
Take everything you need If you use glasses or hearing aids, make sure you take these with you to the appointment. If you have communication problems make sure your GP, specialist or Parkinson s nurse is aware of these and any methods or equipment you use to make it easier for you to communicate. You may also find it useful to take a leaflet or information with you about the problem you want to talk about. Parkinson s UK has information sheets and booklets about all aspects of living with Parkinson s. See page 12 for details on how to order our resources. If you re seeing a healthcare professional who doesn t specialise in Parkinson s, you may want to take them a copy of our booklet, The professional s guide to Parkinson s, which includes sections for GPs, general nurses, physiotherapists, occupational therapists and speech and language therapists. Be honest Everyone has a different approach in their attitude to living with Parkinson s. Some people may feel comfortable talking about their condition, whereas others may be reluctant to talk about their difficulties even to a healthcare professional. This is completely natural, but try to be as honest as you can. Don t be afraid to talk about your Parkinson s when it is at its worst, even if you re feeling better on the day of your appointment. Your GP, specialist or Parkinson s nurse can only give you the best treatment if they know what is really happening. Don t feel you have to talk in medical jargon either. Just use the words you feel comfortable with. Don t be afraid to ask questions If a healthcare professional says things you don t understand, ask them to explain. It is much better to admit you don t understand than to pretend you do, and then find you don t know what you need to do when you get home. Take notes You may find it helpful to write down the answers to the questions and any instructions you are given, to help you remember when you have left the appointment. If you have trouble writing, ask the healthcare professional to write it down for you. Try not to feel self-conscious Most people have felt a bit embarrassed or nervous about visiting a healthcare professional at some point. But try to remember that whatever your worry is, you won t be the first to ask. They are used to dealing with all kinds of problems. They can t help you if they don t know what is really concerning you, so it s important to be completely open about what s on your mind. Parkinson s and the medication used to treat it can cause changes in behaviour, mental health, mood and, in turn, your relationships. It s important you feel comfortable bringing up these issues with your healthcare professional, so they can adjust your medication if necessary and offer you the support you need. If you are feeling very self-conscious about talking to your GP, specialist or Parkinson s nurse, you could try giving them a letter explaining your concerns. Find out more: see our booklet Drug treatments for Parkinson s. 5
I find it hard to talk to my GP. Can I change to another doctor? If you re not happy with your GP for whatever reason, for example you find them unsympathetic, you might want to change your GP. You can do this at any time and you don't need to give a reason. You could change to another GP in the same surgery or go to another GP practice in your area and ask to register. You can get advice about changing your GP from your local NHS trust or NHS Foundation Trust Patient Advice and Liaison Service (PALS) in England, your local Community Health Council (CHC) in Wales, the Patient Advice and Support Service (PASS) in Scotland and the Patient and Client Council in Northern Ireland. Can I choose my specialist if I want to? If you are referred for an appointment with a specialist in England, you are able to choose where you are treated. Where appropriate you may also be able to choose which named specialist-led team you would like to be treated by. A named specialist-led team is when a specialist has overall clinical responsibility for the service, team or treatment. The specialist may not necessarily be present for each of your appointments, but will still have overall clinical responsibility for your care. If you live in Northern Ireland, Scotland or Wales and you re not happy with the specialist you re referred to, tell your GP. They may be able to make an appointment for you with another specialist, either at the same hospital, or elsewhere. But it s important to keep in mind that this may delay your treatment. More information and support Patients Association Offers advice to patients across the UK on a range of issues involving health services. The Patients Association s booklet You and Your Doctor is available to download from its website. 0845 608 4455 helpline@patients-association.com www.patients-association.com Embarrassing Problems This website has information and advice on embarrassing health problems you might find hard to talk about. www.embarrassingproblems.com Patient Advice and Liaison Services (PALS England) For details of your nearest service, contact your local NHS trust or NHS Foundation Trust or visit the NHS choices website. www.nhs.uk Community Health Council (CHC) in Wales You can find details of your local CHC by contacting the Wales Board. www.wales.nhs.uk Patient Advice and Support Service (PASS Scotland) The PASS is part of the Scottish Citizens Advice Bureau Service and is funded by local NHS Boards. It supports patients, their carers and relatives in their dealings with the NHS and in other matters affecting their health. www.cas.org.uk/patientadvice 6
Patient and Client Council (Northern Ireland) Provides advice, information and supports those who want to complain about health and social care services. 0800 917 0222 info.pcc@hscni.net www.patientclientcouncil.hscni.net Parkinson s nurses Parkinson s nurses provide expert advice and support to people with Parkinson s and those who care for them. They can also make contact with other health and social care professionals to make sure your needs are met. The role of the Parkinson s nurse varies. Each will offer different services, aiming to meet local needs. Some nurses are based in the community, whereas others are based in hospital settings. Many Parkinson s nurses are independent prescribers. This means they can prescribe and make adjustments to medication, so someone with Parkinson s doesn t always need to see their specialist for changes to or queries about their Parkinson s drugs. Parkinson s nurses may not be available in every area, but your GP or specialist can give you more details on local services. You can find out more at parkinsons.org.uk/nurses Information and support from Parkinson s UK You can call our free confidential helpline for general support and information. Call 0808 800 0303 (calls are free from UK landlines and most mobile networks) or email hello@parkinsons.org.uk. We run a peer support service if you d like to talk on the phone with someone affected by Parkinson s who has faced similar issues to you. The service is free and confidential ring the helpline to talk to someone about being matched with a volunteer. Our helpline can also put you in touch with one of our local information and support workers, who give one-to-one information and support to anyone affected by Parkinson s. They can also provide links to local groups and services. We also have a self-management programme for people with Parkinson s, partners and carers. It is an opportunity to reflect on life with the condition, learn about self-management and think about the future. To find out if there is a group near you visit parkinsons.org.uk/selfmanagement Our website parkinsons.org.uk has a lot of information about Parkinson s and everyday life with the condition. You can also find details of your local support team and your nearest local group meeting at parkinsons.org.uk/localtoyou You can also visit parkinsons.org.uk/forum to speak with other people in a similar situation on our online discussion forum. 7
Non-motor symptoms questionnaire Name:...Date:... Age:... Centre ID: Male Female Have you experienced any of the following in the last month? All the information you supply through this form will be treated with confidence and will only be used for the purpose for which it has been collected. Information supplied will be used for monitoring purposes. Your personal data will be processed and held in accordance with the Data Protection Act 1998. Developed and validated by the International PD Non Motor Group. Non-movement problems in Parkinson s The movement symptoms of Parkinson s are well known. However, other problems can sometimes occur as part of the condition or its treatment. It is important that the doctor knows about these, particularly if they are troublesome for you. A range of problems is listed below. Please tick the box Yes if you have experienced it during the past month. The doctor or nurse may ask you some questions to help decide. If you have not experienced the problem in the past month tick the No box. You should answer No even if you have had the problem in the past but not in the past month. 1 Dribbling of saliva during the daytime. 2 Loss or change in your ability to taste or smell. 3 Difficulty swallowing food or drink or problems with choking. 4 Vomiting or feelings of sickness (nausea). 5 Constipation (less than three bowel movements a week) or having to strain to pass a stool. 6 Bowel (faecal) incontinence. 7 Feeling that your bowel emptying is incomplete after having been to the toilet. 8 A sense of urgency to pass urine makes you rush to the toilet. 9 Getting up regularly at night to pass urine. 10 Unexplained pains (not due to known conditions such as arthritis). 11 Unexplained change in weight (not due to change in diet). 12 Problems remembering things that have happened recently or forgetting to do things. 13 Loss of interest in what is happening around you or in doing things Yes No 8
14 Seeing or hearing things that you know or are told are not there. 15 Difficulty concentrating or staying focused. 16 Feeling sad, low or blue. 17 Feeling anxious, frightened or panicky. 18 Feeling less interested in sex or more interested in sex. 19 Finding it difficult to have sex when you try. 20 Feeling light-headed, dizzy or weak standing from sitting or lying. 21 Falling. 22 Finding it difficult to stay awake during activities such as working, driving or eating. 23 Difficulty getting to sleep at night or staying asleep at night. 24 Intense, vivid or frightening dreams. 25 Talking or moving about in your sleep, as if you are acting out a dream. 26 Unpleasant sensations in your legs at night or while resting, and a feeling that you need to move. 27 Swelling of the legs. 28 Excessive sweating. 29 Double vision. 30 Believing things are happening to you that other people say are not. Yes No Chaudhuri KR, Martinez-Martin P, Schapira AHV, Stocchi F, Sethi K, Odin P et al (2006) An international multicentre pilot study of the the first comprehensive self-completed non motor symptoms questionnaire for Parkinson s disease: The NMSQuest study Mov Disord; 21(7):916-923. This questionnaire should be cmpleted and given to your GP or specialist at your next appointment. Please do not return it to Parkinson s UK. Thank you. All the information you supply through this form will be treated with confidence and will only be used for the purpose for which it has been collected. Information supplied will be used for monitoring purposes. Your personal data will be processed and held in accordance with the Data Protection Act 1998. Developed and validated by the International PD Non Motor Group. 9
Thank you Thank you very much to everyone who contributed to or reviewed this information sheet: Alistair Church, Associate Specialist in Neurology and GP Principal, Royal Gwent Hospital Vicky Travers, Parkinson s Nurse, Royal Lancaster Infirmary and Westmorland General Hospital (Kendal) Thanks also to our information review group and other people affected by Parkinson s who provided feedback. Talking to your GP, specialist or Parkinson s nurse about Parkinson s (2014) If you have comments or suggestions about this information sheet, we d love to hear from you. This will help us ensure that we are providing as good a service as possible. We d be very grateful if you could complete this form and return it to Resources and Diversity, Parkinson s UK, 215 Vauxhall Bridge Road, London SW1V 1EJ. Or you can email us at publications@parkinsons.org.uk. Thanks! Please tick... I have Parkinson s. When were you diagnosed?... I m family/a friend/a carer of someone with Parkinson s I m a professional working with people with Parkinson s Where did you get this information sheet from? GP, specialist or Parkinson s nurse Information and support worker Parkinson s UK local group or event Ordered from us directly Our website Other... How useful have you found the information sheet? (1 is not useful, 4 is very useful) 1 2 3 4 Have you found the publication easy to read/use? Yes No Has this resource given you information that might help you manage your condition better? NA It hasn t helped It has helped a little It has helped a lot What aspects did you find most helpful?...... Were you looking for any information that wasn t covered?...... Do you have any other comments?...... If you would like to become a member of Parkinson s UK, or are interested in joining our information review group, please complete the details below and we ll be in touch. Membership Information review group (who give us feedback on new and updated resources) Name... Address... Telephone...Email... What is your ethnic background? Asian or Asian British Black or Black British Chinese Mixed White British White other Other (please specify)... 10
We re the Parkinson s support and research charity. Help us find a cure and improve life for everyone affected by Parkinson s. Can you help? At Parkinson's UK, we are totally dependent on donations from individuals and organisations to fund the work that we do. There are many ways that you can help us to support people with Parkinson's. If you would like to get involved, please contact our Supporter Services team on 020 7932 1303 or visit our website at parkinsons.org.uk/support. Thank you. Parkinson s UK Free* confidential helpline 0808 800 0303 Monday to Friday 9am 8pm, Saturday 10am 2pm. Interpreting available. Text Relay 18001 0808 800 0303 (for textphone users only) hello@parkinsons.org.uk parkinsons.org.uk *calls are free from UK landlines and most mobile networks. How to order our resources 0845 121 2354 resources@parkinsons.org.uk Download them from our website at parkinsons.org.uk/publications We make every effort to make sure that our services provide up-to-date, unbiased and accurate information. We hope that this will add to any professional advice you receive and will help you to make any decisions you may face. Please do continue to talk to your health and social care team if you are worried about any aspect of living with Parkinson s. References for this information sheet can be found in the Microsoft Word version at parkinsons.org.uk/ publications Last updated May 2014 Next update available May 2017. FS71 Parkinson s UK, May 2014. Parkinson s UK is the operating name of the Parkinson s Disease Society of the United Kingdom. A charity registered in England and Wales (258197) and in Scotland (SC037554).