Help for folk self-managing PCOS

Hope For The Community has partnered with @veritypcos to help those living with Polycystic Ovary Syndrome (PCOS) to manage their condition. The self-management courses launched in November 2022 and will be available until 2024.

This has been made possible with a grant from The Waterloo Foundation @Waterloo_TWF.

PCOS affects 1 in every 10 women, and those assigned female at birth, in the UK. There is no known cause or cure. The courses will help over 500 women in 2022, 2023 and 2024.

To sign up, please visit the Hope For The Community website http://h4c.org.uk/courses.

We hope to make more more spaces available as soon as our funding allows.

We co-developed and co-evaluated this course in partnership – with PCOS patients at the heart of the process throughout.

Psychologist Dr Carol Percy (a PCOS patient herself) led the co-creation of the course, which began with interviews with women who have PCOS, then input from Verity trustees and UK health professionals who specialise in treating PCOS. You can find out more about the co-creation process in this poster presented at the European Health Psychology Society conference in 2019. (Please click the image to access a pdf file copy from Open Science Framework).

The new course was evaluated by a group of volunteers all of whom had PCOS and participated in the pilot version of the course in 2019/20.

We collected quantitative data on a range of outcomes, including anxiety, depression, gratitude, hope and mental wellbeing, as well as interviewing course participants about their experiences of taking part. The results were very promising and we hope to conduct a feasibility randomised controlled trial in the near future.

You can see the quantitative results from the pilot study in this poster presented to the British Psychological Society Division of Health Psychology conference in 2021. (Please click the image to access a pdf file copy from Open Science Framework).

Participants’ experiences of the pilot course are described in this poster presented to the European Health Psychology Society conference in 2021. (Please click the image to access a pdf file copy from Open Science Framework).

There is a brief video explanation of this poster available if you click here.

iHOPE PCOS programme

“Learning to you know respect and love myself and put myself first is not a selfish thing”

Quote from a participant in the pilot iHOPE PCOS programme

What is the HOPE programme?

We developed an evidence-based self-management programme tailored for PCOS, and tested it with promising results, including improvements in depression, anxiety and mental well-being. @HOPE4TC

HOPE is an evidence-based self-management programme that supports people with long term health conditions to cope more effectively. That includes eating well, staying physically active, and following any necessary medical treatments, as well as managing stress, dealing with the emotional impact of their condition and planning for their future health. There is a suite of HOPE programmes tailored for different populations, run by Hope for the Community, a community interest spin-off company at Coventry University.

What is special about the new PCOS iHOPE programme?

We developed a version of the HOPE programme tailored for PCOS, by doing qualitative research with PCOS patients, the PCOS advocacy organisation Verity and NHS health professionals, to find out why patients with PCOS might find self-management a challenge. We then asked patients and health professionals at a PCOS conference to vote on priorities to include in the new programme. We adapted the tried and tested HOPE course framework to include PCOS specific topics and activities. Verity helped us recruit women with PCOS to take part in a pilot study evaluating the impact of the new programme.

Want to know more?

Find out more in Carol Percy’s post on https://blog.verity-pcos.org.uk/2021/09/18/ihope-pcos-programme/ September 18 2021, including answers to the following questions:

The iHOPE PCOS programme is described as being co-created – what does this mean?

How is the programme delivered?

What do you think makes the programme effective?

What were the results of the pilot testing done on the iHOPE PCOS programme?

Would you recommend the programme to everyone with PCOS?

Why was this a passion project for you?

Biography: Dr Carol Percy is an Assistant Professor in psychology who works with the team at Hope for the Community to support patients with PCOS. To find out more about the HOPE programme, please visit www.h4c.org.uk/

Photo by CARL HUNLEY JR on Unsplash

Thanks to all the women with PCOS who volunteered.

A few months ago we asked for volunteers to take part in Charys Orr’s MSc Dissertation project.  I am very pleased to say that Charys has now recruited enough participants for her study and will go on to write up her findings.  I  will be conducting interviews with health professionals later this summer and the findings from both patients and health professionals will be drawn together in the autumn.

For now we’d both like to thank you all very much for helping by sharing your views.  If you’d like to keep up with the progress of this work, please keep an eye on this blog, and on my Twitter feed @DrCarolPercy.

Starting out with hope

Thanks for visiting.

This blog has just begun.  We hope to develop it over time.  We aim to share insights from health psychology and related disciplines, with the goal of helping women and girls with PCOS self manage and cope more effectively.

The blog will be managed by Dr Carol Percy, an academic at Coventry University, with research interests in the psychological impact of PCOS and the support needs of patients.  Carol is working with Charys Orr, a student on the MSc Health Psychology at Coventry University, to identify the self-management support needs of PCOS patients.

More information on self-management will follow.

You can follow Carol on Twitter @DrCarolPercy