Patient-Safety-Learning

This is part of our series of Patient Safety Spotlight interviews, where we talk to people working for patient safety about their role and what motivates them. Making Families Count is an organisation that offers practical training based on lived experience to healthcare professionals.  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. She explains how she came to be involved in MFC after the death of her son Nico and outlines the vital importance of seeing patient and family voices as equal to those of people working for healthcare organisations. Transcript I'm Rosi Reed and I’m the development and training coordinator for Making Families Count. I develop new ideas for MFC which are mostly about raising our profile generally and coming up with different ideas for the training we run. I also liaise with the various organisations who contact us to ask about our training and I work with them to ensure we deliver what they need. How did you first become interested in patient safety? I didn’t see it as patient safety when I first got involved. I just saw a problem that needed addressing. In 2014 Julie Kerry was then working for NHS England as the Assistant Director of nursing, patient experience and south of England mental health homicide lead. She was working with Julian Hendy, a bereaved family member who had founded the advocacy charity Hundred Families, to set up a new type of training organisation in which the trainers would all be bereaved family members, who had lost loved ones in the care of the NHS. Their idea was that the organisation would use the stories of their members as training tools for healthcare professionals. They had been successful in obtaining funding from NHS England, who were going to fund this as a pilot project, and they were looking for suitable members. Julie heard me being interviewed on the radio where I was talking about the experience I’d had around my son’s death and then she was present when I was addressing a meeting, also talking about my experience. Based on what she heard me say then, she thought I’d be suitable to join the fledgling MFC. At this point I’d never heard the expression “patient safety”, and to be honest, initially I was just coming to terms with delivering presentations to large rooms of strangers, talking about what had happened to me and getting to grips with all of that. But I quickly saw how and why positive engagement with patients and their families could be a real game changer for patient safety. How is the training offered by Making Families Count different to other courses on patient and family engagement? We are now a far larger organisation than when we began. We currently have 15 members, some of whom are directors, some are paid, and some are voluntary. Some of our members are current, or ex senior NHS professionals, but most of our members are still—just as we were at the beginning, family members who have lost loved ones in traumatic circumstances, while they were in the care of the NHS, or the are family members and the people who killed their loved ones were being cared for by the NHS. Some of our members lives have been touched by suicide, by domestic homicide, by mental health homicide and some by poor, substandard or negligent care. It's important to understand that—because that’s very much what still is the heart of our training. We continue to make family members sharing their own stories absolutely central to our training. I think of it as lifting the curtain and letting delegates peep behind. Even the most senior staff member doesn’t often have the opportunity to listen to a family’s story, directly from them and there’s enormous power in hearing someone’s real experience directly from them. At least for the time they are speaking, they take you on a journey and you step into their shoes. As I often say, there really is no them and us. Every healthcare professional will at some point be a patient or the family member of a patient and every professional is some type of family member. Some of the most traumatised family members I’ve met are also healthcare professionals. For example, two weeks ago, we had a guest speaker for one of our webinars, and she’s a senior matron who has had to deal with knowing that she couldn’t get the staff at her own hospital to listen and engage with her when her father deteriorated quite suddenly in their care. She did her absolute best, but they gaslighted and side-lined her and then her father died. Only later did it become clear that he had probably had some type of fall which had not been recorded on his medical notes. The aim of our training is to help staff deliver healthcare in the best way possible and to feel confident and capable of empathy and support when dealing with patients and their families. Yes, we share stories which illustrate what poor care looks like, and what good care looks like, but all our training gives you the tools you need to engage with families well, it’s all about the what, the why and the how, so people leave our training feeling empowered and positive. Which part of your role do you find most fulfilling? There’s so much about my role which is deeply fulfilling. First and foremost, though, it’s the people I get to meet and work with—amazing people, both family members and also the many healthcare professionals who I meet through my work. The most amazing, dedicated, caring and insightful people. I love that no working day is like another and when I sit down at my desk in the morning I have no idea what email will come pinging through and set me off on the road to work with a new organisation in a new way. I also think I’m incredibly lucky. Bereaved people often talk about wanting to make a legacy for the person they’ve lost and there’s no doubt that the death of your child is a particularly painful and awful thing. I don’t see my work as Nico’s legacy—I think he would much rather I brought out a banging dance track which was played all over the world as his legacy, but I do see how simply breath taking it is that I’ve had the opportunity to turn my family’s pain and horrible experience into something worthwhile which helps others. It’s now my job and that’s a gift that I’m ever thankful for. What are the most significant patient safety challenges you see at the moment? There’s no doubt that the ever-pressing pressures of lack of time, money and resources are massive challenges. The NHS are bleeding out highly experienced staff who simply can’t take the pressure anymore and are leaving in high numbers which has been made worse by the number of staff who returned to their countries of origin after Brexit. The NHS is struggling to recruit because the wages aren’t good enough and the pressure is ever mounting and this combo of lack of time, lack of money, lack of resources means that the coat is having to be cut to fit and cloth and the amount of cloth is steadily shrinking. Positive family engagement and working well with the families of patients is starting to be seen as a luxury add on, which can be managed without. The truth is of course that, so much additional trauma and lengthy, drawn-out legal battles could be avoided if the family was engaged with really well and supported from day one. So it’s not a luxury, it’s a way of adding to the amount of cloth you have to cut the daily coat from. The other big challenge I think is what I call “The two Rs”: Reputation and Regulation. The fear of reputational damage and of getting into trouble with the regulators causes organisations and senior management to make some terrible decisions. As soon as you put the two Rs ahead of positive patient and family engagement it’s going to have a profoundly negative effect on patient safety. It also causes patients and their families to lose trust in their services. What do you think the next few years hold for Making Families Count? For MFC I can see us delivering more and more training to not only different types of NHS Trusts, but to private healthcare providers too. I think we’re going to spend more time speaking about our work and giving presentations to different organisations. I can already see that some of the things we were talking about and recommending back in 2014, are happening now. FLOs, family engagement, patient safety having a higher profile, family experts being seen as actual experts. "Life beyond the cubicle” is a project co-funded by NHS England and in co-production with Oxfordshire Health NHS Foundation Trust. This project aims to educate and update staff on the importance of involving families wherever possible during mental health crises to improve patient care, avoid harm and reduce deaths. We have also recently produced a handbook to family engagement called “Compassionate Communication, Meaningful Engagement” which is proving very popular. In addition, we’re planning our very first MFC conference for 2025. If you could change just one thing in the healthcare system right now to improve patient safety, what would it be? I would ask healthcare investigators to stop talking about the fact that they are careful to take down the professional’s evidence and also the family’s stories. There’s way too many organisations who seem to say that statement with pride. When you completely undermine the idea of parity between professionals, their patients and their patient’s families by deciding that one has evidence—but the other only stories, then there’s no way that the system is a level playing field where families are seen as experts in the subject of their loved ones. Truthfully, it’s not enough to stop using the word “story” when they mean evidence, it’s also about them understanding why that’s not acceptable and they opposite of useful. Can I change two things? Could I also ask that the healthcare system starts to get better at sharing learning and then embedding it to bring about permanent change after a serious incident, or a serious complaint? Are there things that you do outside of your role which make you think differently about patient safety? When I’m not doing my job I spend a lot of time either as a patient or as a family member! At the end of 2022 I had a heart attack. My partner took me to our local A&E where they kept me in for observation. Good job they did – because 2 hours later I had a heart arrest and died! It’s been a long journey back to health and I’ve spent a lot of that journey as a patient and thinking about what patient safety is like when you’re a very, very poorly patient with drips and wires coming in and out all over the place and unable to do the things you take for granted. You’re suddenly incredibly vulnerable and without the ability to speak for yourself or someone to speak for you, it can be very frightening. For the last two years I’ve also been my husband’s assistant. He refuses to call me his carer, so I’m his “assistant” and it’s a great job, but sometimes we go through more trying times. His illness and his medication means that sometimes he finds it hard to remember things and to say exactly what he wants to, so I go with him to all his appointments, and I act as his advocate. Again, spending so much time in hospitals and with various healthcare professionals makes me see very clearly what patient safety means for them, their patients and their families on a day-by-day basis. Tell us one thing about yourself that might surprise us! I think there’s probably so much about me that would surprise you, but I’ve tried to keep it to just one thing. When I was a teenager I lived on the streets and found all kinds of unusual ways of surviving, including singing on night buses for tips and offering my services to tourists as a tour guide around London’s street markets!

This June marks nine years of Sling The Mesh, the campaign group set up by Kath Sansom after she was harmed by pelvic mesh surgery. In this blog, Kath reflects on the valuable support the group has offered thousands of people harmed by surgical mesh. She highlights the successes the group has achieved by coming together to raise public awareness and advocate for better regulation and support for patients. She also outlines the many issues still faced by people harmed by mesh surgery and describes how Sling The Mesh will continue to press for better informed consent, greater transparency and an effective redress system for harmed patients. The value of patient-led movements in healthcare activism is hard to overstate. These movements often emerge from personal experiences of harm—they are driven by people who never planned to become agents of change, but their own experiences have made them determined to advocate for improvement and raise awareness for others. June 2024 marks the ninth anniversary of Sling The Mesh—the campaign group I set up after I was harmed by pelvic mesh surgery. What began as an ember of anger at what had happened to me has now become a global support movement with more than 10,400 members. The group began as a campaign for women affected by transvaginal mesh, but we quickly realised there was a need to advocate for people harmed by all types of surgical mesh, including rectopexy mesh, hernia mesh and for men with mesh slings. For nearly a decade, members have offered each other information, advice and signposting via our private Facebook group. We have successfully advocated for regulatory reform and continue to press for better informed consent, greater transparency and an effective redress system for harmed patients. What sets Sling The Mesh apart is our commitment to our grassroots origins—we refuse to set up as a charity and remain as a pro bono patient advocacy group. We don’t want to be influenced by anything other than our first-hand experiences of life-changing harm. The campaign needs to remain free from corporate interests and political agendas. From small beginnings, Sling The Mesh has grown into a formidable force for change. As a former journalist and photographer, I understood from the outset that we would have a struggle to get media recognition because of the taboo nature of the topic. But it was important to humanise this health scandal. We repeatedly told our members’ stories and media outlets gradually began to realise that mesh was a serious women’s health issue. It began small but snowballed, with the media covering many of our accounts of harm. Our personal experiences meant we were able to raise awareness of the devastating and life-changing consequences of mesh surgery complications. As a result, politicians began to get involved and helped highlight the issues we were raising in Parliament and amongst policymakers. It has been incredibly hard work, but I’m proud of what Sling The Mesh has achieved so far. For me, our key achievements are: Raising public awareness and shining a spotlight on the issue of surgical mesh complications, ensuring that the individual stories are heard and acknowledged. Influencing policy by advocating for changes to the regulation of medical devices, pushing for greater scrutiny and more stringent safety standards. Providing support and solidarity to people affected by mesh, giving them a safe space to share their experiences, seek advice and access resources. Bringing together individuals from diverse backgrounds to campaign for a common goal. The sense of community we have fostered has been a source of strength and resilience to so many. Pushing successfully for funding for a new outcome measure for pelvic surgeries. However, the fight is far from over—while we have made significant progress, there is still much to be done to ensure that the voices of patients are prioritised, and their rights protected within the healthcare system. Sling The Mesh will continue to advocate for meaningful change and support anyone harmed by surgical mesh. One of our top priorities going forward is pushing for a Sunshine Payment Act in the UK, like the law that has been in place in America since 2013. This Act would legally require all manufacturers and pharma companies to report any money given to doctors, hospitals, health charities, parliamentary groups, researchers and Royal Colleges to an open database. It would be a huge step for patient safety as this database would help healthcare leaders start assessing the effects of industry money on bias in prescribing and treatment options, and how it affects research integrity. Related reading The difficulty of medical negligence cases and why financial redress from the Government is so important for mesh victims “There’s no problem with the mesh”: A personal account of the struggle to get vaginal mesh removal surgery Specialist mesh centres are failing to offer adequate support to women harmed by mesh (Patient Safety Learning and Sling the Mesh)

In 1990, 10-year-old Robbie Powell died due to undiagnosed Addison’s disease. Tragically, his death was preventable. Concerns that Robbie may have had Addison’s disease had been raised following a previous hospital admission and a diagnostic test requested, but this was not followed up or shared with his parents, Will and Diane. In the two weeks before Robbie died, Robbie was seen by five GPs on seven occasions, but his parents were consistently told that there was nothing seriously wrong with their son. Robbie’s father Will has worked for decades to uncover why his son died and how the doctors and organisations involved responded following Robbie’s death. In this long-read interview, Will describes the events that led to Robbie’s death and his subsequent fight for justice, including his role in the successful campaign which resulted in organisational legal duty of candour. He talks about the devastating impact that having the truth withheld continues to have on his family and other families. Will then outlines what needs to be done to better protect families and ensure they get the full truth when a child dies due to avoidable harm. Please note: readers may find the following content distressing.