Our guests for episode 5 are Clive McIntyre and Dr Yeliz Prior who both share their powerful perspectives living with chronic inflammatory conditions and helping others like themselves.
Dr Yeliz Prior is a registered occupational therapist with a special interest in alternative therapies such as cognitive behavioural therapy and mindfulness based therapies. Her research is based on rehabilitation for patients with rheumatic and musculoskeletal conditions, focusing mostly on behaviour change, equipping people with the strategies to self-manage their conditions and behavior change. Dr Prior has lived with inflammatory conditions since childhood, being diagnosed with juvenile idiopathic arthritis at the age of seven. At 24 years old, as a mother of two, she then received the diagnosis of ankylosing spondylitis. Her personal experiences have motivated her to pursue a career dedicated to improving the lives of those living with inflammatory conditions.
Clive McIntyre has lived with rheumatoid arthritis for over 30 years and is a hugely active member of the Ampersand patient panel. An incredibly optimistic and proactive individual who grew up witnessing his mother suffer with rheumatoid arthritis, he was determined to not be a victim of his condition. Clive is 67 years old and when his mother was the same age, she was in a wheelchair struggling to hold everyday items. Major advances in research, understanding of inflammatory conditions and therapeutics have allowed for individuals like Clive to better manage their condition and live very different lives. Clive talks about his approach to life and how it has helped him to adapt to the uncertainties of living with an inflammatory condition.
How has Clive managed his condition for over 30 years?
Clive’s career has spanned across many different industries (law, management and sales, to name a few). He has had to adapt to the demands of each career by picking up new skills. Being multiskilled has helped Clive to adapt not only to different jobs but also to adapt to the challenges of living with a chronic inflammatory condition. For example, he uses SMART goals which he learnt about during his management training to also provide him with an approach to frame his health goals.
Clive is a very motivated and proactive individual. How do we help others to also feel empowered to take charge of their own health?
Clive and Dr Prior share their tips for living with inflammatory conditions:
- Change in mindset – Dr Prior describes how living with inflammatory conditions from a young age has made her the person that she is today, and is the reason she became a therapist and researcher. It provides her with the opportunity to connect with others like Clive and support patients to better manage their condition. For Clive, rheumatoid arthritis was an integral part of his character and he accepted it wholeheartedly, comparing it to being “left or right handed”. He was not going to allow this debilitating condition to have any more control over his life than it already had.
- Be receptive to different options and cherry pick your own personal suite of tools. The more options that you try, the more likely you are to find things that work for you. Then create your own personal suite of tools to help manage different aspects of your health, at different times of your life.
- Ask questions if something does not make sense. The more patients are able to verbalise what’s important to them and what’s bothering them, the more personalised therapies/interventions can be to the individual. This results in better quality of care and better outcomes for patients.
- Be mindful of your condition and your mood, but also be kind to yourself.
- Apply the management theory of marginal gains to your health by making small improvements which can add up to make a big difference.
- Pay it forward, volunteering is a powerful tool. Clive is an active member of the RA community as an NRAS (National Rheumatoid Arthritis Society) ambassador and member of the Ampersand patient panel. People living with chronic conditions can share their lived experiences with others and learn about how others manage their condition.
- Take charge and don’t become a passive participant in your own health. You do not have to suffer in silence with your condition, speak to your healthcare team as there may be something that can be done to help.
Have you heard about the Right Start scheme?
Healthcare professionals can refer newly diagnosed patients with rheumatoid arthritis to NRAS. NRAS will arrange a phone call with patients to discuss any questions that they may have following their diagnosis, signpost them to further information based on their needs and if the person chooses, connect them with trained peer support volunteers. For more information, visit https://nras.org.uk/resource/rightstart/
What therapies are available for patients?
Often the conversations around management of inflammatory conditions are centred around medications with less emphasis placed on alternative therapies. Dr Prior is an expert in many different types of therapy including cognitive behavioural therapy (CBT), acceptance and commitment therapy (ACT), mindfulness, goal setting and motivational interviewing. Dr Prior spoke briefly about ACT, a type of psychotherapy that encourages people to accept their thoughts and feelings, rather than dwelling or feeling guilty about them, and then commit to actions that face the problem head-on.
How does Dr Prior decide which type of therapy to recommend for a patient?
Using clinical reasoning, Dr Prior is able to suggest different approaches but the success of any type of therapy lies with the level of patient buy-in, engagement and involvement. In the initial assessment, Dr Prior spends time getting to know the patients, their thought patterns, behaviours and actions. She then identifies the areas of concern and discusses with them several different approaches that can be taken. It is very difficult to choose a route without understanding the patient’s goals, as there are many different approaches that can help them reach their goals. Dr Prior helped co-create the programme for the MyArthritis app and incorporated many different approaches to help patients find ways that work best for them to achieve their goals. She uses the MyArthritis application with her patients to support them on their self-management journey and receives incredibly positive feedback.
Get in touch with Dr Yeliz Prior on Twitter @YelizPrior and Clive McIntyre via the Ampersand Patient Voices panel (email email@example.com if you would like to be connected to Clive).