Patient Voices Podcast Episode 2

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At Ampersand, we want to champion the experiences and opinions of the most important members of the healthcare ecosystem, patients.

As part of our podcast series, we spoke to Heather Savage and Anisha Gangotra. The conversation is captured in this blog. By day, Anisha works within the NHS and by night as an inclusive dancing and Zumba instructor. Anisha openly shares her experiences living with a long-term inflammatory condition, ulcerative colitis and how the condition impacted her life. Heather is a dual certified health and life coach, and former clinical nurse specialist supporting patients with inflammatory bowel disease (IBD), inflammatory arthritis (IA) and inflammatory skin conditions. Drawing on her clinical and mentoring experiences, Heather discusses the importance of personalising care to the individual and the downfalls of a one-size-fits-all approach. 

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The term ‘holistic care’ is one that you have probably heard many times. It describes the philosophy where people are recognised and treated as individuals. According to Patient.info, holistic medicine refers to the ‘consideration of the complete person, physically, psychologically, socially, and spiritually, in the management and prevention of disease’.

But what does holistic care mean to Anisha and Heather? 

For Anisha, holistic care attempts to uncover more about the person behind the condition. The term ‘person-centred care’ may also be used. Both terms place emphasis on a holistic approach to care where the whole person is taken into account, not a sole focus on their symptoms and condition but also their preferences, wellbeing and wider social and cultural background. Anisha speaks about her own experiences and how she, like many others, felt overwhelmed and inadequately supported after receiving her diagnosis of ulcerative colitis. She was going to have to learn to live with her condition for the rest of her life. It would have a toll on her physically but also emotionally, with a knock-on impact on her relationships. A more person-centred approach, where Anisah would have the right level of support at the right time, would have enabled her to support herself better and quicker.

“I am not the illness – I am the person first.” Shanali Perera

As a former clinical nurse specialist…

Heather understands the merit of traditional drug therapy. However as a certified health and life coach, she appreciates that there is more to treating individuals with inflammatory conditions than medications alone. Combining her unique set of experiences, Heather can understand the holistic needs of patients like Anisha with chronic conditions. 

What is a clinical nurse specialist? 

Clinical nurse specialist (CNS) is a nurse with specialist skills, knowledge and experience in a particular aspect of nursing. As a CNS, Heather was able to spend more time with patients compared to the doctors. She provided patients with access to information and advice about their diagnosis and treatment. 

What is a health coach?

Health coaching is a partnership between health and care practitioners and people. By building rapport with people and providing non-judgmental support, a health coach helps people to focus on what matters to them, giving them time to tell their stories. The role is more common in other countries and is slowly being introduced into the NHS. A health coach is able to think about health as more than just physical health, realising that emotional and mental health play a huge part. Looking at a person as an individual and based on their particular circumstances, Heather can suggest more appropriate, suitable and achievable lifestyle changes for the person. In a clinical setting, it is not always possible to take all these factors into consideration. 

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Anisha’s patient journey

In 2008, at the age of 24 years old, Anisha was diagnosed with ulcerative colitis. Ulcerative colitis is a chronic, auto-immune condition where the immune system attacks the large bowels. People suffer with symptoms including diarrhoea, bloody stools, bowel urgency, pain and fatigue. For Anisha, she was suffering with debilitating fatigue which resulted in low energy levels and subsequently was unable to work, eat and socialise. A very active individual, she was also unable to take part in activities such as hockey which formed a big part of her identity. “In my family, a hockey stick is like an extension of my arm, ” describes Anisha. As a result of her symptoms, Anisha had to give up hockey, a sport that she had been playing competitively since childhood and an important source of stress relief for her.  

Three years after she first started to experience symptoms, Anisha was involved in a high speed car accident sustaining significant physical injuries. She needed a lot of support, struggled to get out of bed by herself and had to take one step at a time. She openly describes the toll that the accident took on her mental health, and how she went on to suffer with post traumatic stress disorder, anxiety and depression. Following the car accident, Anisha was in pain and her ability to exercise was taken away from her. Her sister recommended Anisha to try Zumba and she immediately fell in love with the program. She formed a new identity around movement and activity with Zumba. She slowly started to rebuild strength and flexibility at her own pace. She reaped the mental health benefits of being part of a community of people who loved dancing. Anisha wanted to share her passion for Zumba with other people which led her to becoming a Zumba instructor, on top of full time work and multitude of patient advocacy jobs. Anisha wanted to provide a safe space for all, including those with disabilities, long-term conditions and mental health issues to enjoy the physical and mental benefits of dance. This led her to become an inclusive dance instructor. 

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What is an inclusive dance instructor?

Inclusive dance instructor – A dance instructor who supports people from all walks of life and abilities get involved in dance.

What motivated Anisha to be proactive with her health? 

Anisha is a very self-aware and driven individual who was not willing to let her condition and symptoms take away from her character. But what motivated her through those difficult times?

  1. Hope – Anisha remained hopeful despite the circumstances, even when she didn’t know what way was forward. 
  2. Self-awareness – She understood that ultimately responsibility for her own body lies with herself. This awareness was coupled with determination to try and find support from wherever she could. She was able to take control of her body with the expertise and guidance of the appropriate people and holistic support from family, friends and healthcare professionals.

Access to services

There are many barriers that can make it more difficult for people to take control of their own health. Anisha acknowledges the challenges that exist for some people to access support. As a woman of South Asian descent, she talks about the cultural barriers that exist and may stop individuals from accessing both mental health and physical health support. It’s essential that these cultural barriers to accessing services are considered to ensure that services truly meet the needs of the entire population.

The future of healthcare

With the Covid-19 pandemic, healthcare systems around the world have had to adapt quickly and safely. The adoption of digital health solutions have been accelerated to support provision of services, with increased demand from patients. However, as Anisha explains, we must not forget that healthcare is about people. Digital solutions are merely another tool in the toolbox enabling more equitable and accessible healthcare for all. 

Heather wants to move away from the paternalistic, ‘nanny’ approach of healthcare and is excited to see how digital solutions enable people to take charge of their own health. With greater understanding and knowledge about their condition and circumstances, patients will be able to make more informed decisions that are right for themselves. 


 

Get in touch with Heather Savage HERE and connect with Anisha on Instagram, Facebook and Twitter at @zumbawithanisha

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