“Taking control and living life to the fullest” – the TIPTOE study supporting people living with osteoarthritis

A study supported by Health and Care Research Wales is investigating a personalised support programme that aims to improve the lives of people living with knee and hip pain, helping them to ‘take control and live life to the fullest’.

The TIPTOE study, is looking at how a personalised support programme could help people over 65 who live with osteoarthritis and at least one other long-term health condition.

Participants will be randomised to two groups: one will receive NHS care as usual, while the other group will take part in up to six one-to-one sessions with a trained healthcare practitioner over six months, in addition to any usual care they are already receiving.

Val Hill, 79, from Cardiff, has lived with knee pain and osteoarthritis for nearly 50 years. Her lived experience has led to her becoming a strong advocate for research in this area.

She said: “The TIPTOE study helps people to understand their bodies and not just be prisoners of their pain, but to still participate in life, to do things with their children and grandchildren.”

Val is working with the research team to ensure that the information provided is clear and accessible. She said: “I’m involved in looking through documents before they go public to make sure they don’t contain too much jargon and the information is understandable to ordinary people.”

Val’s journey began almost 50 ago with an injury to her knee while she was leaning over to retrieve shopping from the back of a van. She toppled into the van, wrenching her knee badly. She said: “I injured my knee probably close to 50 years ago. But over the years, osteoarthritis has crept up.

“For the last 20 years, I’ve regularly visited the GP and specialist clinics undergoing X-rays, which showed my knee collapsing, with the lower part of my leg eventually facing outwards, causing increasing pain and difficulty in walking.”  

By 2020, the situation had worsened to the point where Val could hardly move. Val said: “During the COVID-19 pandemic, around August 2020, my knee collapsed completely.

“It was impossible for me to get up and down stairs. I could barely get across the road and was using a stick all the time. It was incredibly sore and painful.”

The pandemic added another layer of complexity. As her regular exercise classes were paused, Val also faced obstacles in accessing the medical help she needed.

In desperation Val sought private knee replacement surgery in December 2020. Val said: “I knew I couldn’t be that disabled and in that much pain.” She underwent the procedure, which brought some relief after years of suffering.

Despite her personal victory, Val knows that many others are not in a position to access private healthcare or even see a specialist in time, which led her to getting involved in the TIPTOE study.

She added: “The more we know, the more we won’t just be helplessly at the mercy of our bodies. We can start to take control ourselves.”

Val hopes to ensure that others have the tools, knowledge and support they need to live their lives to the fullest, despite the challenges of this chronic condition. She added: “It’s about talking, understanding and knowing others are going through the same thing.”

Ffion Davies, Research Nurse at the Centre for Trials Research, funded by Health and Care Research Wales, said TIPTOE is a support package aimed at helping people living with their knee and/or hip joint pain. She added: “We hope to help people living with osteoarthritis to build confidence, skills and knowledge to better manage the pain that is for many a constant in their lives.

“Through coaching sessions and a book filled with strategies, tips and stories, participants could learn to better manage their pain. It’s about empowering individuals with osteoarthritis to self-manage with a view to improving both their physical and mental wellbeing.”

What will the study involve?

Patients aged 65 or over who experience knee and/or hip pain which is impacting their daily lives are invited to take part.

Participants need to be living in the community independently, with carer support or in assisted living and have another long-term physical or mental condition.

As part of the study, members will be randomised – with half receiving NHS care as usual and half taking part in up to six one-to-one sessions with a trained healthcare practitioner over six months.

The sessions can last up to an hour and held in person or online. They aim to make people more independent and active.

Participants will record their progress over the course of 18 months. To find out more or to register take part visit www.TIPTOE.org.uk or email the team.