Information and support

Information for the public

Your healthcare professional should give you written information and talk with you in a way that suits your needs at every stage of your care. If your needs change because your symptoms change or get worse, the way that you're given information should also reflect this. The information you are given should help you to be involved with decisions about your care.

Healthcare professionals should be honest and realistic about the future. They should also explain that although there is no treatment to cure Parkinson's disease, the symptoms can be treated, and there is a lot of research going on to find new treatments and a cure.

A plan for your care should be discussed and agreed with you, your family or carers and your healthcare professionals. You should also be given the name of someone in specialist services who you can contact if you have any questions or concerns, for example, your Parkinson's disease nurse specialist.

Your family members or carers should also be given information about Parkinson's disease and the support that's available to them, for example, their entitlement to a Carer's Assessment.

People with Parkinson's disease who drive should tell the Driver and Vehicle Licensing Agency (DVLA) and their insurer when they are diagnosed. Ask your healthcare professional if you're not sure how to do this.

You should be part of all decisions about your care so you can agree which treatments and care are likely to suit you best. Your healthcare professional should involve you by:

talking and listening with you so that they understand what matters to you
giving you all the information you need so that you can make your mind up
explaining if they think something that is mentioned here won't work for you and why, and discussing other options you could try instead.

There is more information about how you should be involved in your care on the NICE website.