Summary

A Call for Change addresses the urgent need to integrate stigma awareness programs into healthcare settings within the UK. This post concludes this recent series on discrimination, which I believe has been a factor in the 11-year delay, that I have faced getting a diagnosis and treatment for my facial pain. What I have experienced has been horrific. It concerns me how many other patients experience similar barriers to receiving healthcare. I draw on two articles about stigma reduction in healthcare, that give me hope that change is possible. This is a call out to end stigmatization within our healthcare system, to ensure equal access for all.

‘Stigma in health facilities undermines diagnosis, treatment and successful health outcomes. Addressing stigma is fundamental to delivering quality healthcare and achieving optimal health.’[1]

What Is Stigma?

Nyblade et al define stigma as ‘a powerful social process that is characterized by labelling, stereotyping, and separation, leading to status loss and discrimination, all occurring in the context of power.’[2] In their article; Stigma in Health Facilities: Why it Matters and Why we Can change it, Nyblade et al explain that stigma in healthcare facilities manifests in ‘outright’ denial of care, (which I have experienced) provision of sub-standard care, (I have faced this too) and verbal abuse. It also manifests in making people wait longer, or passing their care off to junior colleagues. I have also experienced the latter, at a salivary gland unit in London.

A Consultant referred me to the unit in 2016 for a sialendoscopy procedure. This was to treat obstruction in my left parotid gland. There were three female dental radiologists in the department. They all have a notable reputation for carrying out these minimally invasive procedures. They knew me. At the time of my appointment, the three of them were sitting, eating their lunch in the procedure room. They passed me onto a registrar, who really struggled. She spent an hour trying to get the micro-endoscope into my papilla with a needle and thread. It was grim.

Global Stigma Reduction programs

Nyblade et al identify that ‘common stigma drivers’ in health facilities include negative attitudes, fear, lack of awareness, and lack of knowledge about the condition and the stigma. Their article is a fascinating read. It highlights effective approaches that have been used to reduce health condition stigma in health settings, in countries across the globe. (The UK is not one of the participating countries.) The health condition stigmas include; HIV, Tuberculosis, Mental Illness, Diabetes, Substance Abuse, Leprosy and Cancer. The approaches used were;

• Provision of information; teaching participants about the condition itself and about its stigma and manifestations.
• Skills-building activities, which created opportunities for healthcare providers to develop skills to work with the stigmatized group.
• Contact between healthcare workers and members of the stigmatized group, to humanize the individual and break down stereotypes.
• Structural change looking at changing policies.

They used different methods to deliver these approaches, including; video streaming, lectures, educational materials, interactive learning activities, group work, role playing, discussion, and testimonials. Nyblade et al state that across all of the approaches, staff attitudes and behavioural intent towards stigmatized groups improved.

It is a heartening scenario to hear about the bringing together of health workers with patients who have experienced stigmatisation, into a workshop setting, to share information and increase contact. When I read about these developments, I reflect on my own experiences of stigmatization within a healthcare facility, and I would truly welcome an approach like this within primary and secondary care settings in the UK.

‘Keeping those who are burdened by stigmatization at the centre of any response to stigma has been identified as best practice.’[3]

Future Investment

Nyblade et al conclude that there needs to be future investment in health facility stigma reduction, which should;

• Tackle multiple stigmas at once.
• Focus on empowerment as an approach for health workers to cope with or challenge stigma.
• Target all levels of health facility staff, both clinical and non-clinical.

Mental Health-Related Stigma

‘False beliefs about mental illness can cause significant problems.’ [4]

Knaack et al explain in Mental Illness-Related Stigma: Barriers to Access and Care, that lack of awareness and lack of skills contribute to mental illness stigma-related behaviour. Their article focuses on practical solutions that can be implemented to address ‘embedded’ stigma, in healthcare structures, in relation to mental health. ‘Stigma is a barrier to patient safety through factors such as staff attitudes and institutional culture and the accepted marginalization of mental health patients.’[5]

A survey conducted shows that 53% of medical providers discriminated against a patient from psychiatry. Studies also demonstrate that persons with mental health histories receive poorer quality care for their physical health problems. People with experience of mental health problems, also commonly report that their symptoms are not taken seriously, when they seek care for non-mental health concerns.

Social Contact

Knaack et al argue that culture change is necessary to reduce stigma in healthcare. They state that teaching skills are an effective way to tackle it, as well as hearing first-voice testimonies of peoples lived experiences of both mental illness and experience within the healthcare system. This is referred to as ‘social contact.’ In this case, this is when people with experience of mental illness are seen not as patients but as educators. This contact ‘disconfirms stereotypes, heightens empathy, makes personal connections and improves understanding.’[6] I absolutely love this approach to breaking down barriers between medical professionals and patients.

Myth Busting

The other factor involved in stigma reduction is myth busting, to ‘correct false beliefs that may be negatively impacting care.’[7] Knaack et al state that workshop-based and skills-based interventions and intensive social contact are effective models for myth busting. They describe a 2-hour face-to-face educational program, called Understanding Stigma, which was developed by the Ontario Health Integration Network. It was designed to increase knowledge, skills and awareness, with the aim to change behaviour. Following this workshop, there were ‘Significant improvements,’ re attitudes and behaviour change.

Personal Insight

These stigma reduction programs in Canada, and around the world are inspiring. However, my research has found no equivalent schemes in the UK. Having experienced first-hand, very real barriers to healthcare as a result of stigmatization, I would welcome initiatives like these in the UK. There is no point in having guidance for doctors in Good Medical Practice, stating that a doctor ‘must treat a patient fairly, and not discriminate against them,’ (19) if doctors ignore it, or are simply not given the correct skills and tools to monitor their attitudes and behaviour. There is not enough dialogue about stigma reduction in healthcare. Awareness and skills training would open the door for an inclusive healthcare system, where everyone has equal access to care.

I do not believe that my patient experience is in isolation. I was speaking with a lady recently, who is a full-time carer for a man, who has Down’s Syndrome. The man was complaining of a bad back. The lady took him to the doctor eight times. Each time, the doctor dismissed his problem as ‘cognitive.’ The man ended up collapsing. He is now crippled in a wheelchair. I read similar horror stories on my X, (formerly Twitter) feed daily.

‘Stigma does not only affect those living with stigmatized conditions. Its ramifications reverberate outward through communities. Reducing stigma has the potential to improve the health workplace environment, the quality of care provided by staff, and the clinical outcomes of individuals living with health conditions.’[8]

I Have A Dream

This series concludes with a vision that I have had for many years. The preceding blog series to this one, chronicled an incident with a psychiatrist in Fife, who wrote a discriminatory letter about me, without having met me or speaking to me, which was the precursor to the mental health discrimination that I faced by a surgeon at an NHS Trust in Scotland. In A Psychiatrist in Fife #2, I explain that I heavily researched to see if there were any laws in place, re psychiatrists speculating about patients without meeting them. I found nothing in the UK. I did, however, find The Goldwater Rule, which is observed in the USA. ‘The Goldwater Rule is a statement of ethics issued by The American Psychiatric Association in 1973 It asks psychiatrists to refrain from speculating about the mental state of public figures, without formally evaluating them.’[9]

This incident with the psychiatrist in Fife was horrific. It was traumatising. A surgeon both victimised and ghosted me, as a result of it. I do not want another patient to ever experience such a violation. My dream is to see The Goldwater Rule observed in the UK. My dream is to see it applied, not only to public figures, but to everyday people, like me and you.

Change Must Come

The updated edition of Good Medical Practice comes into effect on January 30, 2024. I was glad to see that it has an addition to Domain 3: Colleagues, Culture and Safety, which states that a doctor ‘must not present opinion as established fact,’ (89 d.) This is encouraging! If this had been GMC guidance, in 2020, when this incident with the psychiatrist occurred, I could have proven a breach of GMC guidance by the psychiatrist, and there may have been a different outcome to my GMC complaint. Change must come. There needs to be stringent reform to ensure that everybody has equal access to care. Stigma must no longer present as ‘a barrier to care for people seeking services for ‘disease prevention and treatment of acute and chronic conditions.’[10]

Foot Notes

[1] Nyblade,L at al; Stigma in health facilities: why it matters and how we can change it, BMC Medicine, 2019.

[2] Nyblade, L et al; Stigma in health facilities: why it matters and how we can change it, BMC Medicine, 2019

[3] Same source as footnote 1 & 2

[4] The Mayo Clinic: Mental Health: Overcoming the Stigma of Mental Illness.

[5] Knaack S et al: Mental Illness-Related Stigma in Healthcare: Barriers to Access and Care and Evidence-Based Solutions.

[6] Knaack S et al: : Mental Illness-Related Stigma in Healthcare: Barriers to Access and Care and Evidence-Based Solutions.

[7] Same Source as Footnote 5 & 6

[8] Same Source as Footnote 5,6 &7

[9] The Goldwater Rule. Psychology Today.

[10] Nyblade L et al: Stigma in Health Facilities: Why it Matters and How We Can Change It, BMC Medicine, 2019

Photo Credits; Clem Onojegkwo, Jason Rosewell, Topshere Media, National Cancer Institute, Ehimetalor Akhere Unuabona, Nathan Anderson, Jason Goodman, Morgan Basham, Florida Memory and Chris Barbalis on Unsplash. Pixabay, Matheus Bartelli, Henri Mathieu Saint Laurent, Karolina Grabowska, Mart Production and Demeter Attila on Pexels.