In celebration of our decade-long journey, members of the Making Families Count community have contributed their personal stories and unique perspectives, shedding light on our evolution and the vital significance of our mission.
Dorit Braun: A Legacy for Mariana
After my daughter-in-law died I got involved in various patient safety and learning from deaths initiatives. It felt to me that a lot of opportunities for learning ended up as guidance – and busy practitioners don’t often read guidance or even follow it. Indeed, I had discovered that not following statutory guidance is not negligent. There is a lot of guidance about the importance of involving families when someone is in a mental health crisis or being assessed. My family’s experience was that our involvement entailed being there, but not being heard, seen separately, or having anything explained to us about what we’d need to do to care for Mariana, should her psychosis rebound.
I had a background in adult and community education and a lot of experience of family support in my professional life. I thought I could make use of this expertise to produce some sort of learning resources for clinicians, in the hope that reflective learning might help to change practice. The co-creation process that we used to develop the Life Beyond the Cubicle resources meant that clinicians were actively engaged in developing and learning as an integral part of the process. And there is some evidence from the evaluation, and from the feedback we have been getting, that the reflective and engaging nature of the resources does really engage clinicians in developing their practice and understanding just why it is so vital to involve families in a meaningful way to enhance care and increase safety.
I feel I have left a legacy for Mariana. And that’s what I set out to do.
Frank Mullane: Through a Clearer Lens
You know that day? You’re raring to tell someone what you know, actually loads of people and then an invitation comes in which gives you a cracking opportunity to do this.
My sister and nephew were murdered in domestic abuse and my brother had taken his own life two years previous. I then took up every chance to say my bit including being asked to join Making Families Count.
Our work together is both emotionally restorative and like the solution that cleans otherwise dusty spectacle lenses. What looks like a comprehensive, ordered and well-resourced list of services to the professionals may actually be a confusing array of jumbled, unclear and inadequately resourced offers if seen though our eyes.
Hearing our stories helps professionals to see through clearer lens. Without this perspective, professionals may design services that they think provide the right help, but they may not be the services that others need.
Jan Sunman: Initial Impressions
I was invited to a meeting by Julie Kerry, who was then lead investigator in the NHS England in the South East into the deaths of people with learning disabilities in NHS services and people affected by mental health homicides or suicides.
I was accompanied by Frances Steepe, another parent. I was working for Oxfordshire Family Support Network at the time. We were a user-led group who had relatives with learning disabilities. Julie had contacted us, following the death of Connor Sparrowhawk, a young man, aged 18, who had learning disabilities and was autistic. Connor’s family and friends were reeling with the shock that Connor had died because of a seizure, by drowning in a bath. Frances knew Connor very well as he had gone to the same school as her son.
The subsequent investigation the family experienced was challenging, with many obstacles and huge stress for the family. At the time, the initial investigations had only just begun when we went to the meeting, and the feelings were raw for all who knew the family.
The Trust’s response was characterized by a refusal to be open and transparent and there was no meaningful apology for what had happened to Connor. They refused to listen to the family and to take seriously the concerns they had flagged up about Connor’s treatment before his death. All of this compounded the damage to the family’s wellbeing.
We did not know what to expect from that meeting, but we were introduced to family members who had formed charities, following the traumatic deaths of loved ones. That day, we heard about families bereaved by suicide, mental health homicide, and deaths after fatal domestic abuse. Julian Hendy, an investigative journalist, the founder of Hundred Families, supported families who had been affected by mental health homicide, Len Hodkin also worked with him. Stephen Habgood was Chair of Papyrus, a suicide prevention charity for young people and their families, and Frank Mullane, the CEO of AAFDA- Advocacy after Fatal Domestic Abuse, whose sister and nephew were killed.
As we heard of others’ often brutal experiences, we were all struck by the overwhelming similarity in responses from the NHS. It was shocking to hear that far from helping, so many families had to fight hard with Trusts to get answers, if indeed they got answers, and were re-traumatised by the process. Everyone at that meeting was determined to effect change, enabling Trusts to offer compassionate and effective support to families faced by these tragic experiences.
We all decided to collaborate with Julie and Julian to create hard-hitting training that would expose staff to the real experiences of families. We aimed to change how Trusts work with families and drive cultural changes in the NHS. We did not expect that we would still be working with Trusts a decade later, as a Community Interest Company called Making Families Count, but the work is as relevant today as it was then.
A comment from one Trust:
… “there was a stunned silence at the end of the training. Looking at all your faces when you are re-counting your stories – the disbelief at what had happened, how harrowing it was – we needed to hear that…. You don’t want someone to have to fight to get the answers. You don’t want to be that nurse that they remember because you didn’t care.”
Julian Hendy: MFC – Some recollections of the early days
I think it was around 2013/14 that I was working with Julie Kerry and Will Smith on improving family engagement in the NHS after mental health related patient homicides in the South of England. I’d given talks to various NHS agencies and Julie told me she was in touch with various other similarly affected people that might provide the focus for a wider improvement and campaigning group.
I think the initial idea was to call it something like ‘Patient Safety and Quality Improvement Through Family Engagement in Mental Health Services,’ which I thought was a bit unwieldly (and probably rather forgettable), so suggested something shorter and snappier – Making Families Count.
At the time I was a professional documentary film-maker, and with Julie’s and Jan Fowler’s help we managed to get some NHS funding for a series of short films about families’ actual experiences.
By telling stories of our own lived experiences in a constructive way, we thought we might be able to influence change and support better services for patients and their families to prevent further avoidable incidents.
The idea was to hold a series of meetings with NHS staff where we could show the films but then have the actual interviewees there in person to speak and answer any questions. This, we thought, would hopefully make for different and powerful learning tools,
In that way I met Rosi Reed who spoke so movingly not only about the loss of her beloved son Nico, but also the truly awful way she and her family had been dismissed and mistreated by the mental health trust involved in her son’s care. I’ll always remember her saying that the lack of information for bereaved families is like a poison – one that festers as they try to imagine what must have happened to their loved ones.
I remember meeting and filming with Stephen Habgood and the terrible loss of his son to suicide – and the way he had been treated in the aftermath. Stephen was a former prison governor, very used to rigorous investigations after things had gone wrong, who told me disbelievingly that the NHS investigation report had found there was no learning to be had from his son’s death. He knew from bitter experience there was always something that could have been done differently that might help prevent future deaths.
And I filmed with Len Hodkin, whose mother had been killed by a mentally ill woman who had previously killed her own mother, was convicted, and then released after just three and a half years before killing Len’s mum, a complete stranger. We deliberately used the actual 999 call reporting the incident to make people sit up and listen and hopefully realise this would be not the usual NHS learning event.
Then we invited Frank Mullane from AAFDA and Jan Sunman from the Oxford Family Support Network to join us and speak of their own experiences.
I think we all wanted to make the deaths of our loved ones count for something.
We all wanted to make something good come out of a terrible and traumatic experience.
But most of all we wanted services to learn and improve effectively so that no other family would have to go through what we have endured ever again.
Julie Kerry: Celebrating a Decade of Compassion and Connection: Making Families Count Turns 10!
I brought together families bereaved whilst their loved ones were in receipt of NHS care during my time at NHS England where I had responsibility for commissioning independent investigations. Although families had been bereaved in very different circumstances, their experiences of not being treated with kindness and compassion and not being supported to be involved in the any investigations were very similar.
We gathered in an office in 2015 so small we couldn’t all fit in – we only heard half the families’ stories but it was clear there was an incredible power and connection in the room.
Despite the vastly different circumstances surrounding their losses, a common thread emerged: the yearning for kindness, compassion, and a genuine voice in the investigations that followed. From that powerful connection, a movement was born, and we made a commitment to raise the profile of secondary trauma caused to families, and to work towards families being central to patient safety investigations.
MFC was established with a bold vision: to ensure that families are not just participants but central figures in patient safety investigations. Recognizing the secondary trauma inflicted on families when their voices are sidelined, we made a commitment to amplify their experiences and advocate for their rightful place in the conversation.
The group went on to provide face to face conferences to a large number of NHS Trusts and system leaders.
Making Families Count made a significant contribution to ensuring family engagement is now front and centre of the new NHS Patient Safety strategy. We now celebrate the countless stories shared, and the impact created. Making Families Count is now a thriving community interest company, dedicated to empowering organizations to better engage families in their processes, ensuring they feel heard, valued, and supported.
Here’s to the next decade of Making Families Count! Together, we will continue to champion compassion, promote transparency, and strengthen the bonds between families and healthcare providers. We invite you to join us on this journey—because together, we can make a difference and ensure that every family’s voice counts!
Now 10 years on MFC is a thriving community interest company continuing to support organisations to better engage families.
Kay Holmes: A Privileged Role: My Journey with MFC
Back in 2015 I was working for NHS England, for Julie Kerry, Deputy Director of Nursing. Julie said to me one day we are going be organising training days working with families.
What felt a huge overwhelming task. I had to book venues, arrange tech equipment, take bookings, organise refreshments for places all over the county.
Firstly, I had to be in communication with families, bereaved families, I was worried I would say something wrong. I soon got into the swing of organising these events and liaising with the families, gathering their availability, arranging travel and accommodation across the country.
As the Business coordinator, I developed a profound sense of purpose and responsibility, as I built a deep understanding of the emotional impact these families carried. While the work was often challenging and filled with moments of sorrow and sadness, I am proud to have played a role in creating a space where families voices can be heard.
The families resilience and willingness to share with humility and kindness has taught me a lot.
After the first year of holding the presentations, we then called them webinars and MFC and the uptake for the training went from strength to strength and in 2019 went out as a CIC.
In 2023 I was approached to be Admin Coordinator for MFC and I jumped at the chance to become back involved. Working with MFC is one of my proudest meaningful jobs that is a privilege to be involved with.
I feel privileged to have been involved in the shaping and development of this organisation.
I look forward to see what the next 10 years holds.
Stephen Habgood: For Christopher: Ensuring Families Are Heard
We had all experienced the loss of a family member in circumstances that we were sure could have been prevented. The group of us felt the NHS could have conducted a timely and honest investigation, to learn from what happened, and certainly could have offered a meaningful apology. In all our stories they failed to do so.
With my colleagues I stood before NHS managers and their staff and presented my story about my son Christopher in the hope that they might learn from my experience to keep other children, who were struggling as Chris was, alive.
It was about more than just conducting a proper investigation, but about the care and treatment of young people, like my son, and the proper engagement of family members, just like me.
Yes, we see that family engagement in now a part of NHS systems and processes, but I still think Trusts would rather move on from a patient safety failure to the next patient.
Making Families Count still has an important role to make sure that the lives of those lost family members that first brought us together, are honoured by us continuing to ensure that the voice of family members, the voices of people like us, are heard.
Rosi Reed: Nico’s Legacy: A Parent’s Quest for Truth & Change
You would think that the worst possible thing that could happen was my son’s death. But actually, what came after, in many ways was so much worse. It left us utterly changed, but we didn’t feel anger until we realised that no one wanted the truth to come out, except us. The trust involved actually wanted to conceal as much as possible. And so, the long, drawn-out battle to find out what had happened and WHY it had happened began.
I found myself in a weird, upside-down world where lies were accepted as truth and it seemed no-one was interested in anything we had to say. My insisting that I wrote the Terms of Reference seemed to bewilder those responsible for commissioning the investigation into my son’s death. In meetings they kept asking “What does Rosi want?”
What I wanted was
- The Truth about my son’s death
- Information
- Candour
- Accountability
- Compassion
- Kindness
And above all – CHANGE, so that I would know, what had happened to us, wouldn’t happen to another family in the future.
But everyone around me acted as if I was asking for something extraordinary, when I wanted these things. They made me feel as if I was ridiculously naïve, asking for ridiculous things that everyone who understood healthcare would have ridiculed. Was a just a joke? Or worse than a joke?
Towards the end of 2014 I was asked to join a meeting of Verita and the Oxfordshire Safeguarding Adults board. Although the meeting was in Oxford, which I can get to fairly easily, I couldn’t face the thought of attending in person and instead I dialled in. A friendly sounding woman called Julie asked me to share my story with the room and then asked me questions. At the time I thought I’d done very badly and embarrassed myself, because during the question section, I was asked one simple question “Tell us what Nico was really like?” And because no-one else had ever asked me that, I cried.
A couple of months later, this same friendly sounding woman rang me. Her name was Julie Kerry, and she explained to me that she was looking for family members who would be happy to share their stories as part of a training project. I was interested, mainly because the idea of actually getting people to listen to what had happened to us appealed to me hugely. Someone from their team, a filmmaker called Julian Hendy, came to my house with his cameraman. It took them several hours but finally they decided they had my film, and I remember Julian said to me “I think you’re going to be pleased with the result”.
The first Making Families Count event was held on 5 March 2015 at the Hilton Reading, Berkshire. I didn’t speak, in fact I sat somewhere near the back of the room and barely spoke to anyone. As part of this event, my film was shown for the first time. Gradually, I realised that everyone around me was quite literally sobbing, and I sat there surrounded by sobbing NHS professionals who didn’t even realise that I was the woman talking in the film. It took my breath away and left me in shock.
I still have the programme from that initial MFC outing and I think it’s important to read and review what we said in this programme:
PURPOSE OF THE WORKSHOPS:
- To share families’ current experiences of NHS investigation process
- To learn from these experiences and start to understand the barriers
- To understand what the benefits are of involving families
- To start to scope what a culture of humility and openness might look like
OUTCOMES:
- To have improved understanding and awareness
- To understand best practice and be able to describe it
- To raise the status of families in investigations
- To come away with practical tools of how to put families at the centre of this work
At that point, early 2015, these were brand new, pretty out-there, ideas. We met hostility in the room, we frequently had push back from senior staff with delegates walking out of the room. Those that stayed described our training as “the most powerful training session I have attended”, “this training has made me think differently about working with families”.
Looking back now I realise that I was so lucky to have this opportunity. Joining MFC was to shape my future and my current life. It was only 3 years into the fight for some answers and accountability around my son Nico’s death and I was asked to join Making Families Count – and that was such a game changer for me. Suddenly I was surrounded by people who really understood what I was going through, because they either had been on the same journey, or were still going through it themselves. The strength, resilience and knowledge that they gave me has made me the person I am now.
“Thank you MFC” just doesn’t even begin to cover it. But I’ll say it anyway…
Lucien Champion: Ensuring Families Are Heard
Making Families Count was created in 2015 to highlight the occurrence of secondary trauma experienced by families following the death of a loved one who had been under the care of the NHS. The stories of families across the NHS services were deeply troubling for me as it seemed that more often review processes became an adversarial process rather than one that would offer support and learning.
I had the opportunity to join the group in 2016 and was immediately impressed with the members commitment to delivering transformative change in the way the NHS treats families using their own, moving personal stories. I have always been impressed by the generosity of the members in sharing their most difficult experiences in the pursuit of improvement, promoting compassionate and inclusive family engagement in both organisational policy and individual practice MFC’s dedication to enhancing patient safety and family involvement through innovative educational tools (e.g. Life Beyond the Cubicle), emphasising the transformational potential of inclusive approaches to patient care has helped me reflect on my own practice when engaging with bereaved and traumatised relatives. In the last 10 years MFC has established itself as a pivotal organisation in advocating for compassionate family engagement across all areas of the NHS.
Family engagement and support remains a challenge within most NHSE services and work still needs to be done. MFC can play a key role in challenging the NHS reflect and improve it practices.