Advisory group for people with personal experience of major lower limb amputation
Information from the University of Hull…
What is the advisory group about?
We (the University of Hull) are running a research study to compare a flexible prosthetic foot with a usual care rigid prosthetic foot. This study aims to explore quality of life and health outcomes for people with below-knee amputation.
We’re inviting people with a lower limb amputation who use a prosthesis, and carers of people who use a prosthesis, to join our Patient and Carer Advisory Group to help shape and guide this important study.
What is the role of the patient advisory group?
We want the group to give people a voice in the decisions that we make during this study.
Your role as a member of the group will be to share your feedback, insights and views. This will help us to:
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check that what we are doing makes sense
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resolve any problems
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understand the findings of our study better
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make sure that our study makes a difference to people with a lower limb amputation.
What is our study about?
We want to know how an artificial leg with a flexible foot improves quality of life and health outcomes for patients with a below-knee amputation who have limited mobility, and whether it presents value for money for the NHS. This study is being funded by the National Institute for Health and Care Research (NIHR).
We want to:
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compare a “flexible” self-adjusting hydraulic foot with a usual care “rigid” foot
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see if the flexible foot improves quality of life, clinical outcomes, reduces falls and improves socket comfort for patients
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understand the value for money of the flexible foot compared to the rigid foot.
When does the study begin and end?
The study will begin on 1 January 2026 and will last for 4 years, ending in December 2029.
Who is funding this study?
We have received funding from the NIHR.
Who will you be working with?
You will work alongside a dedicated research team and other people who have personal experience of lower limb amputation. We are seeking eight members of the group.
The advisory group will be run by Hayley Gordon and Natalie Vanicek. Hayley and Natalie are members of the research team based at the University of Hull.
How often will the group meet and for how long?
We will have a welcome meeting in early 2026 and approximately 3–4 meetings every year at key points in the study.
You do not have to attend every meeting. As an alternative, you can share your views by email or telephone, or by having a one-to-one meeting with Hayley.
Where or how will meetings be held?
Our regular meetings will be held online (via Zoom). We will share simple instructions for joining each meeting and ground rules for taking part. This means that you will need access to a mobile phone or a computer with internet access.
We would like to meet face-to-face on some occasions. We will have a north and a south patient advisory group. You can join the one that is closest to you geographically. You will be reimbursed for your travel expenses.
What topics will the advisory group meetings discuss?
Some of the topics we will discuss include:
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who we want to take part in the study and how we recruit them
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our research methods and minimising the burden on those who take part
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the findings from each stage of our research and how to share these with the public.
What other activities will the group take part in?
You will also help us to:
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create clear information for patients to invite them to take part in the trial (people with a below-knee amputation who use a prosthesis)
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develop the interview questions we will ask patients who are taking part in the trial
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create publicity materials about our findings and engage with amputee charities and support groups
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evaluate the findings of the study and help share these with a large audience including other amputees, clinicians, charities and prosthetic commissioners.
What experience are we looking for?
We are looking for people with lived experience of lower limb amputation who use a prosthesis, or people caring for someone who uses a prosthesis.
What benefits are we offering?
We will reimburse your expenses for taking part in advisory group meetings and other activities. This will include a remote working allowance to cover your broadband/wifi costs of £5 per meeting, travel expenses if we meet in person, and the cost of arranging a replacement carer or childcare to enable you to attend meetings. Information about the expenses covered will be explained to you.
We will offer you a fee of £25 per hour to thank you for your time and contribution to the study. This will include time spent preparing for, attending and following up meetings, and time spent on separate activities.
Expenses and fees will be paid as soon as possible after each meeting or activity. Invoices or receipts will be required to claim expenses (with the exception of the remote working allowance, which is a fixed payment).
What support will you be offered?
Hayley Gordon will be the main point of contact and support for members of the group, with support from Natalie Vanicek. Hayley will be available to offer one-to-one support outside of meetings if you need this.
We hope that members of the group will get to know each other over the course of the study and that your shared experiences will help you to support each other.
Any questions?
If you have any questions or are interested in volunteering for this role, please get in touch with:
Hayley Gordon
Senior Research Fellow, Institute for Clinical and Applied Health Research, University of Hull
Email: [email protected]
Tel: 01482 462349