Top Picks: Women campaigning for patient safety

Summary

Over the years, we have worked with many amazing women who share our aim of reducing avoidable harm in health and social care. In this blog, to mark International Women’s Day, we are celebrating women who campaign for patient safety. 

Content

These articles, interviews and resources from the hub shine a light on just some of the women who are working hard to prevent avoidable harm and strengthen patient safety. Often informed by lived experience, their insights, expertise and tenacity have helped shape conversation and change. Click on the titles to read each one in full. 

Interview with Kath Sansom, Founder of Sling the Mesh 

Kath talks to us about why she set up Sling the Mesh and the significant impact that campaigning has on her life. She also highlights the need to establish systems that will identify and prevent avoidable harm, including long term tracking to investigate trends of harm, reporting of industry payments to clinicians and making logging side effects mandatory for healthcare professionals.

Patient Safety Spotlight interview with Rosi Reed, Development and Training Coordinator at Making Families Count

Making Families Count is an organisation that offers practical training based on lived experience to healthcare professionals. Rosi Reed became involved in Making Families Count after the death of her son Nico. In this Patient Safety Spotlight interview, Rosi outlines the vital importance of seeing patient and family voices as equal to those of people working for healthcare organisations. Rosi talks to us about how MFC training benefits patient safety and improves the way in which patients and families are involved in incident investigations. 

Campaigning for safety as a patient, family member or advocate

In this video we hear from campaigners Sandra Igwe, CEO of the Motherhood Group, and Soojin Jun, co-founder of Patients for Patient Safety US. They talk about their experiences of engaging with the system, the challenges they have faced and offer advice for others seeking to campaign for change in healthcare.

Interview with Charlet Crichton, founder of UKCVFamily

UKCVFamily was set up in November 2021 to support patients in the UK who have had an adverse reaction to a Covid-19 vaccination. The group provides help and advocacy as well as raising awareness amongst healthcare professionals, the media and the Government. In this video, founder of UKCVFamily Charlet Crichton talks to us about the side effects she experienced after having the AstraZeneca Covid vaccine. She outlines why she established the group and describes the support it offers to patients. 

People with eating disorders should not face stigma in the health system and barriers to accessing support

In this blog, Hope Virgo, an eating disorder survivor and mental health campaigner, looks at the barriers people face when they try to access support, and talks about her own experience of being told she was ‘not thin enough for support’. She calls for long-overdue action on funding, training and awareness of eating disorders within the NHS.

Interview with Isabela Castro, patient advocate

Isabela shares how her experience of losing her baby daughter to avoidable harm in 2006 led to her involvement in patient safety advocacy. She talks to us about the vital role of patient campaigners in driving the movement to reduce avoidable harm, and why we need to shift from patient inclusion to belonging in order to improve patient safety.

When will the Government take responsibility and meet the needs of all mesh patients? A blog by Paula Goss

Paula Goss had surgery to implant rectopexy and vaginal meshes which left her with severe pain and other serious complications. In this blog, Paula talks about why she set up Rectopexy Mesh Victims and Support to campaign for adequate treatment, redress and justice for people injured by surgical mesh. She outlines the need for greater awareness of mesh injuries amongst both healthcare professionals and the public and talks about what still needs to be done to enable people to access the treatment and support they need.

Leading for safety: A conversation with Jane Plumb, Founder of Group B Strep Support

Jane Plumb is the Co-Founder of Group B Strep Support and the Women's Voices Lead for the Royal College of Obstetricians & Gynaecologists. In this interview, she emphasises the importance of actively involving patients and families in patient safety discussions so that improvements can be informed by their insights and experiences.

Interview with Marie Lyon, chair of the Association for Children Damaged by Hormone Pregnancy Tests

In this interview, Marie Lyon talks about her campaign for justice for families affected by hormone pregnancy tests, why she is passionate about reforming medicines regulation and the important role patient campaigners play in improving patient safety.

The question that will save lives: Interview with Katinka Blackford Newman, founder of Antidepressant Risks

Antidepressant medications are taken by millions of people globally. A small percentage of people who take them will experience rare but dangerous adverse reactions. In this interview, Katinka Blackford Newman tells us about her personal experience of antidepressant-induced psychosis and how this led her to campaign for increased awareness about side effects. She highlights a widespread lack of education and awareness about the risks associated with antidepressants and outlines why she is asking suicide prevention charities to ask callers one simple question about their medication.

Women’s heart health - a patient safety priority

hub Topic lead Risa Mallory is a retired psychotherapist from Canada. After a serious cardiovascular event in 2018 she became a patient advocate, collaborating with organisations across the globe.  In this blog Risa talks about her experience and the patient safety issues she's observed as a woman with a heart condition. 

House of Lords roundtable on Independent National Maternity and Neonatal Investigation: reflections from The Motherhood Group

Sandra Igwe MBE is the Founder and CEO of The Motherhood Group and a Topic leader for the hub. In this blog, she talks about The Motherhood Group’s involvement in a recent roundtable event to discuss the Independent National Maternity and Neonatal Investigation. 

Thrush and vulval nerve damage: lack of information and knowledge puts patients at risk

Philly Baines is a patient advocate and Founder of Thrush Support. She is living with chronic pain following recurrent thrush infections and vulval nerve damage. In this opinion piece, Philly shares her experience and calls for action to make sure patients and healthcare professionals are more aware of the risk of thrush-associated nerve damage. She highlights the devastating impact chronic vulval pain has on people’s lives and why prevention is key. 

Enhancing patient safety through effective communication in clinical trials and cancer care: a blog by Tambre Leighn

In this blog, patient advocate and healthcare communications consultant, Tambre Leighn, discusses how effective communication is essential for ensuring patient safety in clinical trials and cancer care, and why poor communication can lead to negative outcomes. She shares her strategies to improve patient safety through communication.

Do you campaign for patient safety?

Are you involved in a campaign that has patient safety at its heart? Would you like to tell us more about your work and the changes you’d like to see?

Perhaps you are a patient or relative with lived experience that you would like to share? Or a healthcare professional with insights around the patient safety challenges and potential solutions?

Get in touch with us at [email protected]