About First Steps
First Steps is a free online programme designed for people recently diagnosed with Parkinson's. It has been developed with people affected by Parkinson’s and is delivered by volunteer hosts who live with the condition. The programme is designed to help people take the first steps in processing their diagnosis and finding out about the information and support available to them to help them live well with Parkinson’s. We hope that at the end of the programme people will feel more knowledgeable, supported and positive in facing the future.
Online First Steps programme overview
First Steps is designed for people who are in the early stages of processing their diagnosis and don't yet know how Parkinson's UK and healthcare professionals can support them to live well with Parkinson's. People may also benefit from First Steps if they don't know where to start with getting active, or are wondering how to incorporate more physical activity into their daily routine and stay motivated. The programme provides people with the opportunity to meet other people who have been affected by a new diagnosis of Parkinson's, and is suitable for people who feel comfortable discussing experiences in a group setting.
Some people attend First Steps with a member of their family or a friend, other people attend on their own.
First Steps is a structured group programme where people with Parkinson’s are joined by 8-10 other people living with Parkinson’s and their family and friends. Within the groups, people will have the opportunity to ask questions, share experiences, take part in group discussions and hear from other people in a similar situation.
Each online session lasts a maximum of 3 hours long. Sessions 1 and 2 will take place within one week or weekend, and sessions 3 and 4 will take place six weeks later. The friendly volunteer hosts who deliver the programmes will ensure that people have regular breaks throughout each session.
To join a programme your patient will need access to a device with a webcam and a reliable internet connection. If they’re not feeling confident with using Zoom, we can offer support in how to use Zoom and its key features.
Sessions 1 and 2:
- The impact of diagnosis.
- Facts about Parkinson’s.
- Accessing the right healthcare professionals to help people manage their condition and their symptoms.
- The support that Parkinson’s UK can offer.
- The importance of physical activity and staying active in managing Parkinson’s.
Sessions 3 and 4 - follow up 6-weeks later:
- A review of how people have been getting on since the first two sessions, the activities people have taken up and an opportunity to share any successes or challenges.
- A separate group discussion for those living with Parkinson’s and a separate group discussion for family members and friends.
- The rights and practicalities around living with Parkinson’s, for example employment, driving and prescriptions.
- Living positively with Parkinson’s, tips for coping on difficult days and the support options available to people and their family member or friend.
Because the programmes are online and not location dependent, we won’t be keeping a waiting list as people will be able to choose from a variety of start dates and times to suit their needs. Programme dates will be gradually added to the First Steps webpage throughout the year.
The in person programmes were suspended in March 2020 due to the COVID-19 pandemic. We will continue to review the situation and will make a decision about when we can restart these courses by the end of June 2021.
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]
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