Patient initiated follow-up

This policy statement has been developed with advice and guidance from people with Parkinson's, those who love and care for them and health and social care professionals.

What is patient initiated follow-up?

Rather than follow-up appointments being set up in advance, patient initiated follow-up/review (PIFU/R) pathways allow people with long or short-term conditions to request an appointment when they need one, based on their symptoms. 

PIFU/R is not a new concept but has been heavily promoted to help the NHS address the long waiting times for appointments as a result of the coronavirus (COVID-19) pandemic.

What we believe

People with Parkinson’s should have more control over their health appointments. And they should have access to care and support between appointments so they can raise concerns about their symptoms as they progress.

PIFU/R can help people with Parkinson’s have more control over how their condition is managed, but our Policy Panel believes a number of principles should be met before this pathway is considered. These include:

• Patients and carers should decide whether they are moved onto this pathway. 
• Parkinson’s must be recognised as a condition which affects everyone differently.
• Services should reach out to patients if they have not heard from them in 12 months.
• Patients must receive clear communication about what to expect if they are moved onto this pathway. 
• Fixed appointments should still be set for every 6 months preferably (12 months maximum).

Why we believe this

While we know that some people with Parkinson’s would prefer to contact their service when needed, others may not be able to track their symptoms or know when they need a review.  

There are lots of reasons why some people may feel uncomfortable reaching out to healthcare professionals. We’re also concerned that PIFU/R could be misused to discharge patients who need a regular review of their care to stay well.

What's the evidence?

Current NICE guidelines state that "people diagnosed with Parkinson's disease should be seen at regular intervals of 6–12 months to review their diagnosis". 

Parkinson’s professionals have shared that PIFU/R are not suitable for all of their patients.

Full policy statement

Parkinson's UK policy statement: Patient initiated follow up review (PDF, 580KB).