Creating Change in the Acute Healthcare Sector
by Magda Bannister
As a respiratory physiotherapist , I have always prided myself on providing non-judgemental, empathetic and reassuring care to my patients when they are at their most vulnerable. It makes the patients less scared and more able to engage with the therapy I provide for them. It helps them to believe in themselves. It makes their recovery and progress quicker and their outcomes better.
I am the eldest of 3 children with a younger brother, George, and a younger sister, Eva. Our childhood was noisy and loving. Eva was a gorgeous, curly haired, cheeky child who grew up to become a gorgeous, curly haired, cheeky adult. She was intelligent, wickedly funny, loyal, self deprecating and very well loved. She was quite softly spoken, but you listened when she spoke because you didn’t want to miss what she was saying. She could always make you feel better if you went to her with a problem. She enjoyed singing and she loved fashion. Our parents are incredible people - intelligent, open, incredibly supportive, loving, interested in things that interest us.
When she was in her teens, Eva developed an eating disorder, which developed over time into Alcohol Use Disorder (AUD). Whilst she was unwell, she had 2 residential rehabilitation stays, but in 2010 aged 23, Eva died from AUD.
As a family, our world collapsed. Time stopped.
None of us functioned very well for a while. But as time passed, we slowly adapted to life without her. Nowadays, we talk about her often, have photos of her everywhere and I’ve told my daughters all about her. Despite the sadness Eva remains a big part of our lives and stories.
In 2018, I decided to run the London Marathon in Eva’s memory. I gained a charity place with Addaction (now We Are With You) and started planning how to raise the £2,500 I needed to take up the charity place.
This felt like a difficult challenge - stigma means addiction is not a cause that tends to elicit much societal empathy.
I approached the marathon as an awareness raising challenge as well as a fundraising one - I settled on writing a blog focused on my experience of Eva’s AUD and published monthly articles highlighting different aspects of my learning journey. The topics included the causes of addiction, recovery and the importance of community, as well as my personal experience of Eva’s death. I also researched the barriers and impact of stigma. It was an incredible and heartbreaking experience. I learnt so much. I thought I knew and understood addiction after having lived with it, but as I researched, I slowly realised I didn’t understand at all. Despite being proud of providing what I thought was non-judgemental and empathetic care to my patients at work, I had not been able to give that to Eva. I had not understood addiction,how to support her and I had been neither non-judgemental nor empathetic. I had not given her what she needed. In my complete ignorance and emotional turmoil, I had stigmatised her. As I continued to write and learn and research, the blog and the marathon became my biggest apology.
By the end of the marathon, the blog had raised £7,500. I received many messages from friends and acquaintances that had experience of addiction. I knew the statistics at the time - that 1 in 5 people were affected by addiction either directly or indirectly - but I hadn’t believed it until I wrote the blog and heard from them.
We were all experiencing it quietly, privately, in isolation, to protect ourselves and our loved ones from the stigma that we implicitly understood to be so damaging.
A little while after the marathon, my colleague and friend, Ruth Wakefield, (and Clinical Lead for Allied Health Professionals Education) asked me whether I would like to be involved in developing an anti-stigma training package for the newly qualified Allied Health Professionals across the trust, as part of their EDI training. I was on board straight away.
I knew that stigma existed in healthcare - I was an example of it, and it wasn’t hard to find evidence that there was a problem.
One systematic review and a scoping review gave us the evidence we needed that stigma towards those with Substance Use Disorder (SUD) by healthcare professionals continues to exist.
Through the research we knew that stigma towards people with SUD also stops patients accessing care, not just support for the SUD itself but also for other aspects of their physical health. Stigma impacts clinicians’ approach to patients and impacts care, impacts patients ability to engage with treatment, impacts levels of self-stigma, negatively impacts outcomes and, as the NHS Addictions Providers Alliance highlight in their campaign, stigma kills. As well as providing clinically effective care, every member of the multidisciplinary team in clinical practice has the power to minimise the negative impacts of illness and healthcare, and maximise holistic recovery by providing genuine empathy and non-judgemental care. We can create change.
With evidence of a problem and an identified gap in training, we gained approval to start to work. We settled on an interview style recording with Ruth as the interviewer and myself as the interviewee. My answers included a mix of evidence based and lived experience. The resulting video would be used in a group, with a facilitator who didn’t need to be a subject expert. The video would pose questions to the group, and the facilitator would support discussion, allowing for open, honest and rich discussion and self-reflection. Our pilot was used with newly qualified Allied Health Professionals and feedback was wonderful. The clinicians gave it an overall rating of 9.2/10.
Our overall aim was to disseminate the training more widely.
Local support was provided from our Team Leads, Managers and the AHP Education Team and Ruth got lots of internal teams involved in the development of the project to ensure we were making a quality training session. Externally, I contacted the Anti-Stigma Network to ensure our proposed content was appropriate and current - they were wonderfully supportive and took time to feedback constructive information.
And after months and months… it was done. We are incredibly happy with results and the feedback so far. We’re right at the beginning of disseminating within our trust and further afield but it remains part of our AHP Preceptorship Programme, and there has been interest from the nursing education teams as well. We’ve presented to education leads in Sussex, via NHS Sussex Integrated Care Board (ICB) and are promoting wherever opportunities arise, including a national education conference in March. We give permission for anyone to use the training package to help spread the message.
There is so much more to do, learn, and change socially, and within healthcare to ensure people feel able to access healthcare and to be cared for without stigma. As clinicians, our approach to supporting patients can significantly impact their experience. We have the power and ability to make people feel valued and deserving of the care they receive, so they are more likely to seek it when they need it.
We have the power to significantly improve and save people’s lives.
Our voice, within this training, and this network has the power to bring about real, lasting, positive change in attitudes. For us in our corner of Sussex, this feels like a wonderful start to our anti-stigma journey and we’re proud of our project. And importantly, I think Eva would be proud of us too.
For free access to the training package please email: uhsussex.ahpeducation@nhs.net
References:
Van Boekel et al, 2013: Stigma among health professionals towards patients with substance use disorders and its consequences for healthcare delivery
Cazalis et al, 2023: Stigmatization of people with addiction by health professionals: current knowledge