First Steps - for people recently diagnosed with Parkinson's

First Steps is Parkinson's UK's online programme for people recently diagnosed with Parkinson's and their family, friends and carers. 

About First Steps 

In 3 sessions, people are given the information and support they need to start to make sense of their diagnosis and to start living well with Parkinson’s.

Online First Steps programme overview

Feedback from people who have taken part, tells us that the programme is suitable for people who: 

  • are looking for ways to make sense of their diagnosis
  • don't yet know about the information and support available to them
  • feel ready to meet other people with Parkinson's and their family, friends and carers 

People take part from the comfort of their own home, joining a small group of 8-10 other people who have been recently diagnosed with Parkinson’s. Some people attend a First Steps course with a member of their family or a friend, other people attend on their own. People have the opportunity to ask questions, share experiences and connect with people who are at a similar stage in their Parkinson’s journey. 

Hosted by volunteers who have Parkinson's, the programme spans 3 2.5-hour sessions on Zoom. Sessions 1 and 2 take place over 1 week or weekend, and session 3 takes place 4 weeks later. There are regular breaks throughout each session. 

To take part, your patient will need access to a device with a webcam and a reliable internet connection. If they’re not feeling confident using Zoom, we offer support in how to get started and use the key features.

Session 1:

  • making sense of diagnosis
  • facts about Parkinson’s
  • the healthcare professionals that can help people to manage their Parkinson's

Session 2:

  • the information and support that's available to people
  • the practical things that people need to know, such as employment, driving and prescriptions
  • the importance of physical activity in managing Parkinson's

Session 3, which follows up 4 weeks later:

  • check in and catch up
  • 2 separate group discussions: one for people living with Parkinson's and another for family, friends and carers 
  • tips for coping on difficult days, and the support options available for family, friends and carers

People tell us that after they take part they feel: 

  • less alone as a result of meeting other people in a similar situation
  • more positive, motivated and confident in moving forward
  • informed and knowledgeable of the information and support available to them 

Here's what some people have told us about their experience: 

"I feel more optimistic about my diagnosis now. It's really helped me to accept that I have Parkinson's."
"I feel more informed and not so alone"

 

Telling your patients about First Steps

It's important that people who are newly diagnosed with Parkinson's know about the support and information available to them. You can help by telling your patients what is on offer. Please refer them to the First Steps webpage so that they can decide whether the programme would benefit them.

If people have any questions about the First Steps programme they can contact the First Steps team on 020 7963 9381 or email [email protected]org.uk.  

First Steps programme flyer

Download our promotional First Steps programme flyer (PDF 3.9MB) to hand out to your patients 

Michele Hu, Consultant Neurologist with the Oxford Parkinson's Disease Centre, was involved in getting the initial First Steps programme up and running. Find out more about her involvement and the experience of her patients by reading her blog.

"I have absolutely loved this group. It has really helped me to feel positive and to understand Parkinson's which has taken away the fear and anxieties I felt after diagnosis."

First Steps participant