Welcome to Patient Voices by Ampersand Health. We want to champion the experiences and opinions of the most important members of the healthcare ecosystem, patients.
Here, patients share their experiences with inflammatory conditions, alongside clinicians and other experts from the healthcare industry. The conversations are hosted by our Chief Commercial Officer, Aahuti Rai. Through both her personal and professional experiences, Aahuti has a genuine interest for a patient’s lived experience of their condition, their care and how they manage these impacts on the quality of their life.
Our second guest is Katy Pieris; a mum, wife, exercise-fanatic and marketing professional. Ten years ago, at the age of 28, Katy was diagnosed with rheumatoid arthritis (RA). She has been openly sharing her experiences with RA on Instagram (@joint.adventure). On this podcast, she talks about her journey from realising that something was not right, trying to find a diagnosis, navigating treatment options to prematurely facing one of life’s biggest decisions.
Journey to Diagnosis:
The journey to diagnosis is often long and difficult for patients with inflammatory conditions. It took Katy a year and for some patients it can take even longer. Katy initially noticed that she was struggling with everyday activities like walking in the morning and waking up with stiffness and pain in her legs and hands. Looking back, we are able to appreciate that Katy presents with a fairly typical presentation of inflammatory arthritis. Katy believed her symptoms were due to a sports injury. Like many patients, she recalls how difficult it was to articulate her symptoms to the General Practitioner (GP). For an active and young Katy, her normal commute to the station took twice as long, and she recalls losing at tennis to players who she would normally beat. She had moved in with her boyfriend, her now husband, and felt embarrassed that at 27 years old she was struggling with activities such as getting in and out of the shower or lifting a kettle to make a cup of tea. Her symptoms usually resolved themselves by the time of her doctor appointments after work in the afternoon. Despite numerous trips to the GP and several tests, Katy felt immense frustration that her GP was not truly listening to her.
GP appointments are short and unfortunately time is a luxury that can seldom be afforded.
Katy shared some suggestions for healthcare professionals from her experiences:
- If a patient is attending several appointments about the same problem, ask more questions to better understand the patient’s problem and the impact on their life which is causing them to repeatedly seek help.
- Try to understand what factors are most important to the patient (e.g. being able to exercise, play with children, go to work etc), and then build a specific care plan that helps them to manage those important aspects of their life.
- Do not belittle patients or make them feel like they are making up symptoms. Give patients the time to speak, their symptoms are very real for them.
Diagnosis and the associated challenges
Everyone’s experience is unique and everyone responds differently to diagnosis. Knowing what was wrong was a huge relief for Katy as it allowed her to focus on getting better and to regain some control. It’s normal to feel overwhelmed as you get your head around the potentially life-long implications of your diagnosis. Being diagnosed with an inflammatory condition presents many challenges but Katy recalls an additional challenge that she was not expecting. Katy was forced to prematurely face one of life’s biggest decisions by her rheumatologist, the decision about whether she wanted to have children. Katy and her partner had been living together for a year and suddenly they had to face a huge life decision. Katy wanted to get herself better before she could even consider having children. She realised that her pregnancy experience, one day in the future, would likely involve a lot more planning and support than usual. Katy is now a mum and lives a full, active life, but there were many challenges associated with pregnancy. Katy had to weigh up the benefits of treatment options against the risks whilst also navigating the complexities associated with trying to conceive. She had incredible support from her specialist nurse and sought additional support from charities such as Versus Arthritis.
Katy is a highly engaged individual, who is very proactive about her health but the question remains around how do we support and engage others to better look after their own health?
Often, healthcare focuses on treatment and eliminating symptoms, the biomedical model of care. As Katy highlights, patients with long term conditions such as rheumatoid arthritis, should receive robust mental health support to help them manage their emotions.
Most care happens outside of clinics, therefore the more that can be done to support a patient’s quality of life, the more likely they are to follow medical advice, treatment regimens and, ultimately, better manage their condition.
Many different solutions exist to help patients track symptoms and manage relapses, including Ampersand’s My Arthritis app. Technology is playing a growing role in helping patients to make sense of what is going on with their health. However, as illustrated by Katy’s experiences, it is important that healthcare professionals are aware of and able to actively recommend the different tools that are available. When a patient initially presents, healthcare workers should signpost patients to appropriate tools. These tools can help healthcare professionals to form a better clinical picture of the patient’s symptoms and therefore result in faster and more accurate diagnoses.
Katy had a few tips on how we can empower others:
- Patients can be empowered and inspired by other patients openly sharing their lived experiences, stories and insights.
- Showing examples of people living with conditions from all walks of life provides accessible role models for patients, and they can begin to relate based on the factors that are most important to them.