Sharing information with your healthcare team
Understanding exactly what information your healthcare team needs to know and remembering everything you need to tell them in the time available isn’t always easy. But without adequate and appropriate information they cannot get a full picture of what help you need. This can make it difficult for them to suggest the best treatment options. It is important to remember that each case of Parkinson’s is individual and doctors cannot just prescribe a standard treatment; providing accurate information about your own experiences is vital.
Make a note of everything that is troubling you so as to build up an accurate picture and take the list with you to your appointment. Think about what you want to prioritise for initial focus and discussion. Here are some of the areas you might like to think about:
Daily routine and activities
Note activities that are becoming more difficult, such as eating, swallowing, turning in bed or bladder and bowel problems. Also note what help family or carers now provide with daily activities. If you think you would benefit from help with certain aspects of life, for example getting dressed or eating, then let your doctor know.
You may also find it helpful to look back on how you were at your last appointment and compare then and now. There are many trained professionals who can help but your doctor needs to understand your needs in order to put you in touch with the right person.
Mood and mind – non-motor symptoms
A diary can also be useful to record how you feel. Being able to tell your doctor if and when you feel down, anxious or stressed for example can again provide them with the information they need to be able to improve your quality of life.
You might also notice alterations in your behaviour, such as a lack of interest in pursuing activities you have previously enjoyed, or changes to your sex drive. These may be related to Parkinson’s and your medication, so it is important to make your doctor aware of them so that your medication can be adjusted if necessary.
It is easy to brush awkward problems aside but if ignored and untreated they are likely to get worse. Try not to feel embarrassed if you have something you feel uncomfortable discussing, for example sexual difficulties or incontinence. It might be helpful to make a list that you hand to the doctor, explaining that you find these issues difficult to discuss. This approach may allow the doctor to ask questions, thereby breaking the ice, and encouraging you to talk about what is troubling you. It is very important to talk about worries and concerns, rather than bottle them up.
Your doctor will also be keen to know how your carer is coping so do say if you think that your carer is struggling or has health problems of their own. Your care team may be able to help both of you.
Appointments may be shorter than you would like. Planning for them is very important to make the most of every minute you have. You will need to provide clear and concise information about your symptoms and how you are coping. The following tips may be helpful.
Making your appointment
- Make your appointment at a time of day to suit you and your carer.
- Whilst it may be tempting to try to see your doctor when you are “on”, it is also good for them to see you when you are “off”. You could book one appointment for when you are “on” and the next for when you are “off” so your doctor sees the variation in your symptoms.
- If you are seeing your doctor following an appointment with your neurologist, make sure that any related paperwork will have had time to reach your doctor.
- Think in advance what you want to gain from the appointment, for example do you think your medication needs to be reviewed, would you like to see a therapist, would you like advice on different types of treatment or alternative/complementary therapies?
- If you have a lot to discuss you may want to request a double appointment.
Before your appointment
- Take time to plan: develop a list of questions, concerns and any changes that have occurred since your last appointment. Put the most important at the top of the list in case you don't have time to ask everything.
- Leave space on your list to make brief notes about information your doctor provides.
- Think about how best to describe any difficulties you experience or changes in symptoms – it’s easy to get tongue-tied when you have only a limited amount of time so planning in advance how to express yourself can help you to communicate effectively.
- See the Non-motor symptoms (NMS) questionnaire for a list of non-motor symptoms you may want to discuss as well as more obvious motor symptoms.
On the day
- Arrive in plenty of time and remember to take any hearing aid, glasses or communication aid you may need.
- Be honest. It is not wise to put on a brave face if you are struggling to cope – healthcare professionals can only act on the information you give them so if you need help, don’t pretend that you can manage.
- If you are seen by someone new, remember to provide a full overview of how your Parkinson's has progressed.
- State what you hope to gain from the visit and highlight your key concerns.
- If you don’t fully understand something, ask the person to explain again. Most professionals would rather spend a little extra time explaining clearly than have you come back soon after because you don’t understand andhave not been able to follow their advice.
- At the end of the appointment, summarise key points and agree the next steps to ensure there are no misunderstandings.
Talking about your medications
- Take a concise list of all your medications with you as it can be difficult to remember all the names and dosages. Alternatively, if you have a medication card or record then take this with you as this provides your doctor with a quick overview - the Parkinson’s Passport [LINK] can help with this. You could even take your medications in their packaging with the prescribing information clearly marked on it.
- Make sure your doctor knows about any other medications you take, including over the counter medications obtained without a prescription, supplements and herbal or complementary medicines.
- Tell your doctor if you experience ‘wearing off’ (your medication no longer works as effectively until the next dose is due).
- Tell your doctor if you think you may be experiencing side effects of your medication.
- If your doctor alters medication or introduces a new one, make sure you know how to take this, what it aims to treat and any side effects to be aware of. Always follow the instructions you are given and discuss any alteration in regime with your doctor or pharmacist before making any change.
Taking someone with you
- Consider taking a friend or carer with you who can help take notes, prompt you on questions to raise or explain things if you find it difficult.
- Make sure they aware of your queries or concerns so that they can help to explain if you find it difficult.
- Sometimes you may prefer to have some time alone with the doctor to discuss sensitive issues. Alternating between going alone and with someone may be helpful.
After the appointment
- Review notes taken during the appointment and make sure they are kept safe in chronological order with other appointment notes or in an appointments log book. This can be used to discuss the consultation with other members of your healthcare team if you need to or at your next appointment.
- Make a table of the names of the different professionals you see, their contact numbers and the support they provide.
- Keep a log book of all appointments so that you have a record of what was discussed and with whom.
- Keep all of the above information in one place.
Our thanks to Parkinson's UK for permission to use the following source(s) in compiling this information:
- Questions to ask my doctor or nurse.
- VIDEO – CNS Academy: What should I say to my Doctor during a Medical Appointment?
- Are you in a patient-style ‘rut’? How to talk so your doctor listens