Our Glass Box talks - pain is personal

Susan and her partner stood at the kitchen sink washing pots.

Chronic pain affects 28 million people in the UK, and this is growing exponentially. Unfortunately, current treatment options are limited, and how pain works is not well understood. This is where our research comes in; by investing in pain research as a priority, we hope we can address these problems and ultimately take the pain away.

At this Glass Box talk, we heard from our patient insight partners and three researchers who're working on pain challenge projects funded by Versus Arthritis.

Every speaker gave a snapshot of their involvement with our charity which really brought to life the breadth of our research, why patient insight is so important and how this knowledge will enable us to develop more effective treatments for arthritis.

Read the highlights below.

Our Patient Insight Partners - Robin Brittain and Lynn Laidlaw

Robin and Lynn shared more about their work as a Patient Insight Partner (PIP) and how their own experiences of living with arthritis enables them to provide valuable insight when reviewing and shortlisting research applications.

Science can be complicated and there can be a lot of technical language to decipher. Therefore, having feedback from PIPs is very helpful to translate research proposals for the various audiences involved in these projects.

Robin was diagnosed with iritis in 1982 at the age of 14, and then ankylosing spondylitis in 1990 at the age of 23, additionally with developing osteoarthritis as well as other related issues including joint and podiatry conditions.

‘I have attended over 100+ rheumatology appointments…I have seen it all…everyday I have pain, I don’t know what it is like to live without it.’

Robin

Robin is currently a Patient Insight Partner and a committee member with the England Volunteer Council at Versus Arthritis.

Being a PIP has been a life-changing journey for Robin. A specific milestone for him was being involved in the anti-TNF therapy trials, as the drugs have made a real difference to his day to day life.

Lynn was a nurse for over 20 years before becoming unwell 7 years ago with Behçet's syndrome, a rare condition which causes inflammation of the blood vessels. As a result, Lynn was forced to take ill health retirement. That, and a desire to help improve treatment and the diagnostic process, ignited her interest in research.

‘What I had was rare and complex. People couldn’t work out what was wrong with me…I felt tortured by the pain, it was so bad in my face, jaw and I had migraine headaches. I was lucky to get prescribed infliximab, my hero which helped make my pain manageable. It’s made such a difference to my quality of life.’

Lynn

Lynn has been a Patient Insight Partner for nearly 3 years as well as a lay reviewer for NIHR and involved in PPI groups locally in Scotland and UK wide.

For her, diagnosis was very important to get the right treatment and access to the right drugs. When she’s reviewing applications, she keeps in mind the patient and the fact that pain is so individual.

‘It’s really important to understand that pain is individual, I want to see research considering areas of unmet needs and rare conditions. This is driven from my own experiences as it took me longer to be diagnosed.’

Lynn

Improving the quality of life of people with joint pain by targeting other stress symptoms - Dr Sandrine Géranton 

Dr Sandrine Géranton is a lecturer at University College London (UCL) with the London Pain Consortium in the department of Cell and Developmental Biology.

She’s worked for 15 years looking at the molecular biology of pain and her team has recently uncovered an important role for the stress regulator FKBP51 in the control of persistent pain. FKBP51 is a protein that’s very important as it controls pain and stress in your central nervous system and brain.

‘Pain often goes hand in hand with other symptoms such as low mood, anxiety, fatigue and memory impairment, conditions that altogether significantly impact on quality of life, because of this, people are unable to live life in the way they want to.’

Sandrine

Sandrine is looking into whether a treatment can not only reduce physical pain, but also other symptoms, for example, improve sleep, fatigue and low mood associated with pain. People living with joint pain often experience these other symptoms, conditions that altogether significantly impact well-being. The aim of this study is to investigate a new treatment designed to reduce pain, and improve sleep, fatigue and mood-related disorders in mice with arthritis.

Her team are working with Enfield Arthritis social group to help identify which issues and symptoms are most important to people with arthritis to make sure they are selecting the right models to study potential treatments. They are also collaborating with leading international experts in Germany Technische Universitat Darmstadt and LMU, as well as at Oxford University to work collectively on this innovative research.

Read more on our website about this research.

Multimorbidity in Arthritis and persistent musculoskeletal Pain (MAP) Study - Professor Frances Mair

Frances works as the professor of General Practice and Head of General Practice and Primary Care for the Institute of Health and Wellbeing at the University of Glasgow. The ambitions of her research are to look at promoting person-centred care, considering all the conditions someone may be living with. Often people have more than one chronic medical condition e.g arthritis and diabetes, this is known as multimorbidity.

‘We need to think about what’s important, how to talk about it and what language works. Having multiple conditions is not just something which impacts on the elderly. We need to look at social factors and the impact on health conditions, as well as the developing minimally disruptive treatments.’

Frances

Frances talked about the workload of getting to appointments and the balancing act of coping with this if you have other health conditions. For example, you might need to arrange childcare, have transport costs or take time off work.  All these things need to be considered to identify how services can be made more accessible, as well as looking at someone’s capacity to cope.

‘…we want to look at people’s resilience, can they interact with others, do they have good social support, are there barriers to resources…capacity to cope can mean lots of different things and we want to research the gaps in knowledge around this...’

Frances

Her team are looking at persistent musculoskeletal (MSK) pain conditions and rheumatoid arthritis using mixed methods and data sets e.g. the UK Biobank. They’ll also conduct interviews with people living with MSK conditions and healthcare professionals. These interviews will be with GPs, nurses, district nurses, physiotherapists to rheumatologists to gain insight on how they treat people with long-term conditions.

‘Together, we want to discover more about patterns of pain and look at what needs to change in the way we care and help patients better manage their conditions.’

Frances

Read more on our website about this research.

Aches and pains and feeling better - Professor Joanne Protheroe and Dr Emma Healey

Joanne currently leads the Academic Primary Care team at Keele Medical school. She continues to practice as a GP in an inner-city practice, a role which fuels her interest in health literacy and patient participation in their health, especially those in disadvantaged groups.

She talked about health literacy, which is the way people access, understand and use healthcare information and services. Studies show that high health literacy can improve a person’s ability to manage their pain. However, nearly half of the English population has low health literacy, impacting on their ability to manage their pain.

Joanne’s team are working with patients and healthcare professionals to increase the independence of people living with pain, by better supporting people to manage their pain. The hope is that this will improve the quality of life and independence for people living with musculoskeletal pain.

The world of healthcare, drugs and treatments is not easy to understand. As Joanne explained, we need a clear language to explain treatments and help people to manage their health in the best way possible.

Her research team will run focus groups, look at published studies and analyse existing data to better understand how low health literacy can impact on managing aches and pains and how better support can be developed for people.

Read more on our website about this research.

What did I learn?

I came away from the talks with a deeper understanding of how pain is unique to every person and how explaining it to others can be difficult, whether that’s a healthcare professional or your loved ones.

My mum had Multiple Sclerosis and she talked about her pain using many descriptive words like burning and pins and needles. Although different to arthritis, pain is a key symptom that needs to be better understood. There’s no denying that it’s complex and for that reason our research is so important to enable the development of better treatments for people with arthritis and MSK conditions.

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