You are entitled to the right care from health professionals. But accessing it sometimes isn't that straightforward, or happen in the way you would expect.
How you access a service or get an appointment can look different everywhere. And everyone’s experiences will vary for all sorts of reasons.
Get this information in other formats
If you prefer to have something printed to read or want to download a PDF, choose an option below:
Accessing a health professional
Typically your GP will refer you to a Parkinson’s specialist if you have symptoms. If you are diagnosed, you should then have access to a Parkinson’s nurse or an initial appointment with one.
Your GP, specialist, or Parkinson's nurse can refer you to see other health professionals and explain how they can help. In some areas, you might be able to self-refer and make an appointment yourself. If you’re unsure, ask about this at your next appointment.
In some areas, Parkinson’s services are accessed through patient-initiated follow-up (PIFU). This means that you need to contact the team and organise an appointment, rather than the healthcare team organising one automatically.
It's important to be aware that how you access a service or get an appointment can look different everywhere. This depends on things like your Parkinson's symptoms, and where you live. Your experience might be very different to someone else's Our helpline can give you more information on your specific situation.
Private care
Everyone is entitled to NHS care. But we know that people with Parkinson’s sometimes choose to pay for some services privately.
Using the NHS is usually best for people with Parkinson’s as care can be joined up and your health professionals can talk and refer to each other. Some treatments or medication may also only be available on the NHS.
You may choose to get a diagnosis privately. You can then choose to access and be referred to NHS services after a private diagnosis, but you will still have to go through the same NHS processes as someone who has not received a private diagnosis. Or you can opt to continue with private care if that option is possible for you.
Some people access private healthcare like physiotherapists or occupational therapists if they are struggling to access certain NHS services. This could be due to long waiting times for appointments or lack of services in their area.
Accessing private healthcare
You can ask your GP, specialist or nurse about private care options, and they may be able to point you in the right direction.
You can also search online yourself. You must make sure any health professional is accredited and registered with the relevant body or organisation.
For example, you should check that a physiotherapist is chartered, and registered with the Health and Care Professions Council (HCPC).
Our information on specific health professionals tells you how to find them in more detail.
You may still need a referral or referral letter, for example from your GP, to see a private health professional.
Paying for private care
You will need to pay for any private care and it can be expensive. You may have to pay for any further medication or treatment. Some providers may offer payment plans to help you.
You may be able to get a diagnosis through private health insurance but usually it doesn’t cover ongoing care for long term health conditions like Parkinson’s. It’s always best to check with your provider.
Problems with Parkinson's services and accessing healthcare
You are entitled to the right care from health professionals. But getting access to this can be frustrating or difficult, and everyone’s experiences will vary. Some people may access healthcare in a hospital, and some people may access it in community settings. Accessing care might not be straightforward, or happen in the way you would expect.
There may be long NHS waiting lists, or you might live somewhere where services aren’t available. The health professionals you see may change due to staff turnover. Sometimes it can be tricky to know what help you should be getting in the first place.
What to do if you're unhappy with your care
If you're unhappy with the level of care you are receiving, there are things you can do to try and improve the situation. This includes raising your concerns informally with the NHS or making a complaint.
We can talk you through the processes involved which can be different across the UK. Get in touch with our helpline for any help or advice about raising concerns with the NHS.
The Patient Advice and Liaison Service (PALS) offers confidential advice, support and information on health-related matters. They can help you resolve concerns or problem when you're using the NHS.
Our helpline and local advisers
Our friendly expert advisers can talk to you about which health professionals can help, the type of care and support you should be getting and what to do if you’re having problems in your area.
This includes our team of 90 local advisers, who can give you more in depth and personal support. You can do the same if you’re a partner, friend or family member of someone with Parkinson’s.
Phone: 0808 800 0303
Email: [email protected]
Read more about accessing healthcare
Meet some of the health professionals you might see on your Parkinson’s journey.
When you have an appointment with a health professional, you might find it useful to have some notes, prompts or questions to take with you.