Our people

Patient and Family Advisory Group

In their own words, members of our patient and family advisory group were each invited to share the reasons behind their passion and commitment to the project. Together, the group chose to dedicate this page to the loved ones they have so sadly lost and to the remarkable legacies they have left behind. Their hope is that others will not have to walk the same path they have had to.

Deb Hazeldine

After witnessing the heart-breaking unnecessary suffering and death of my Mum in 2006 at Mid Staffs Hospital, it took far too many years to uncover the full extent of the catastrophic failings in a system that had, in parts, lost sight of the patient. I took a very public, central role successfully campaigning over many years for the Public Inquiry into the Mid Staffs Disaster. I gave evidence to the Health Care Commission, on oath to the Robert Francis Mid Staffs Public Inquiry. In December 2018 I was awarded an MBE for my services to patient safety in Staffordshire. Having witnessed the investigation process, I am to this day very passionate about patients and families having a voice and being heard in all aspects of NHS care and investigations.

Ellen Linstead (Gone Too Soon)

We all have a book of our life and the chapters that include my Mum are my happiest. How do I adequately put into words joy?

Ellen Linstead, daughter, sister, wife, grandmother, and most importantly to me, my Mum. My best friend and soul mate, a ‘feeling of home.’

A dinner lady, she loved cooking, baking, always with a play on the radio in our family kitchen growing up. Always a hive of activity, much love, and laughter.

I never knew a day without her love. She simply put the sunshine into our lives. A cup of tea for all, reading a book, hugging my little girl – her granddaughter- a smile that lit up the room.

Again how do you describe the joy of just being with your Mum?

We were always so much more than our final heartbreaking memories together.

One day I will again hug my Mum and say: I am so sorry I couldn’t keep you safe, and I am never letting go again.

For then, and only then I shall truly be home.

(Deb Hazeldine, Ellen’s daughter)

Faye Waddams

Faye was with the Metropolitan Police for seven and a half years until she had her son, Noah, when she retrained as a swim teacher to fit around family life.

She has been an advocate and blogger for epilepsy for seven years at Fairy Faye, due to living with the condition, as well as working as a patient representative for the Medicines and Healthcare products Regulatory Agency (MHRA), NHS England and the MICE study at the General Ormond Street Hospital for Children and University College London Hospitals.

Following the death of her Mum, Faye has returned to University to undertake her master’s and train as a Solicitor. She is now a Paralegal for the Crown Prosecution Service.  She describes herself as a tea addict and keen runner.

My Mum was one of those people who believed in second (and third) chances. She had a heart of gold, and she always saw the best in everyone and would always give them the benefit of the doubt. I think this inspired me when things went wrong in her care and investigation, to try and make changes, to make the system better for others. Her patience and understanding underpinned my need to change the system. She taught us well.

What is important to us is that Mum is remembered for who she is and not what happened. My Mum would always be seen with a book in hand, she loved her bingo and trips out with her sisters. She had the driest wicked sense of humour and you would often have to check if she was being serious or not, it is one of the things I miss most.

Family was everything to her, none more so than her three grandchildren, Freddie, Maisie, and Noah, who are her world. She is a much-loved wife to Steve and mother to myself and my sister Steph. She loved nothing more than having us all together, normally for a big roast. There is a hole in our lives that will never be filled. She is missed every day.

(Faye Waddams, Sue’s daughter)

James Titcombe

James became involved in patent safety following the loss of his baby son Joshua due to failures in his care at the Morecambe Bay Trust in 2008.

Formerly a project manager in the nuclear industry, James has since worked as the National Advisor on Patient Safety for the Care Quality Commission and was a member of the advisory group established to set up the Healthcare Safety Investigation Branch. James’s current roles include Policy and Patient Safety consultant for the charity Baby Lifeline, Specialist Advisor to the Independent Investigation in to East Kent Maternity Services, member of the Parliamentary and Health Service Ombudsman (PHSO) Expert Advisory Panel and Associate Editor for the Journal of Patient Safety and Risk Management.

James was awarded an OBE for service to Patient Safety in 2015 and in 2018, completed a PGCert in Patient Safety at Imperial College, London. James’s book, Joshua’s Story was published in 2015.

Joanne Hughes

I become involved in patient safety following the loss of my daughter Jasmine due to failures in her care in 2011.

In 2012 I set up Mother’s Instinct with the aim of providing peer support to parents bereaved from medical error and a platform to share their children’s stories for learning by both parents and the NHS. Since 2019 I have provided both peer support and 1:1 practical support (serious incidents, inquest etc.) to families local to me. In 2020 I co-founded the Harmed Patients Alliance, to promote Restorative Responses to Healthcare Harm.

I have partnered on NHS England projects aimed at improving Patient Engagement in Patient Safety and responses to Healthcare Harm to support both healing and learning. I have also been an advisor on a number of research projects looking at paediatric patient safety and responses to harm events.

I am trained in both Restorative Practice Facilitation and Mediation and use these skills, as well as my lived and learned experience, to support my training / advisory work on Restorative Responses to Healthcare Harm.

Jasmine Hughes was a funny, feisty, full of life twenty-month-old toddler. She loved her dogs, the outdoors, swimming, reading books with her Mum and Dad, Pesto Pasta, and In the Night Garden!

She was adored by all who knew her, and her loss is felt by her family every single day.
She was let down by communication failures, lack of situational awareness and a system that did not listen to her parents’ concerns effectively. When she died, the truth about what happened had to be fought for.

Jasmine’s Mum works across the system to improve paediatric patient safety and to promote restorative responses to healthcare harm, to continue to be the best Mum she can to the daughter she loves so fiercely, and to ensure her little life holds great meaning.

(Joanne Hughes, Jasmine’s Mum)

Mary Gould

My name is Mary Gould. I have worked in healthcare for thirty-seven years, thirty-one have been as a Midwife; but first and foremost, I am a Mother to six beautiful children, a son and five daughters. We live in Northern Ireland having left Birmingham in 1998, two children in tow and another on the way, the rest arrived later and much to our delight.

I was honoured to be invited onto the Learn Together study, following the serious adverse incident investigation into our only son Conall’s untimely death. As a family we wanted the truth, but this was denied of us when we failed to be included in the investigation. My hope for the future is that this study is rolled out across the UK and that it opens the door for family involvement, transparency and candour, and for a factual account of events, to prevent occurring inaccuracies that are often presented to Coroners at inquest and truly does allow lessons to be learned.

In February 2017, our lives would change forever following the traumatic death of our eldest child and only son Conall at the tender age of twenty-one. His death occurred two weeks following discharge from a local Mental Health facility. He died far away from home in Birmingham.

Conall was a beautiful boy -he had many friends- a keen sportsman, a bit of a comedian; he was and is loved so dearly by so many. I was blessed to have him as a son. As an older brother to five sisters, he would tell you he had it tough, but being an only Son, Grandson and Nephew had its perks. To lose such an integral part of our family in devastating circumstances will live with us forever; thoughts of him remain in everything we do. I just hope for the girls their memory does not fade of their most precious brother, that he remains enshrined in their hearts and that they can recount stories of their happy childhoods, when he was here beside us.

(Mary Gould, Conall’s mum)

Sarah Seddon

Sarah is a mum of five children, three fabulous girls and two much-missed boys. Her second son was stillborn in May 2017. The lack of candour following his death and the conduct of the Serious Incident Investigation impacted significantly on Sarah and her family.

With a desire to make current systems for managing Serious Incidents and Fitness to Practice concerns more compassionate, Sarah has worked voluntarily with several of the UK healthcare regulators. Over recent years, she has been involved in many projects to promote the importance of person-centred regulation both for harmed families and for the healthcare professionals involved. She has given talks about her experiences to encourage learning, reflection, and compassion for everyone involved when things go wrong in healthcare and has also produced a number of blogs and a film (#ManagingAdverseEvents) which have been used locally and nationally for training purposes.

Sarah works as a specialist clinical pharmacist and has twenty-year experience in NHS Clinical Pharmacy services. She is particularly interested in training, mentoring, professional ethics and patient safety, and enjoys teaching on the safe use of medicines across multidisciplinary teams. She also works part-time as a ‘Maternity Parents’ Voice Champion’ at one of her local NHS Trusts. When she is not at work, Sarah enjoys kickboxing, dancing and spending time with her family and friends.

I would like to dedicate my involvement in the ‘Learn Together’ study to my son Thomas Seddon who was born on 2nd May 2017.

Dear Thomas,

Your life was so short and so precious and I miss you every day. Through this piece of work, I’ve been able to move through all the fear, distress and broken trust of the investigations after your death and I can now remember you and your brother Ben with simple love. Your legacy will help ensure that learning occurs and that other families are treated with care and compassion when the worst happens. You have taught me so much and I see you in your amazing sisters every day – I really hope that I can make you all proud.

Thank you so much for choosing me to be your mummy xxxxx

(Sarah Seddon, Thomas’ mum)

Penny Phillips

This project has restored my sense of hope. Learning together, we have used our different perspectives to create solutions to complex problems. We can prevent harm together.

My daughter, Anna, died while in the care of Early Intervention in Psychosis services. She had just turned twenty years old. Anna was in her second year of studying medicine and had returned home for care.

At six years old, Anna announced that she would like to be a mermaid or a doctor when she grew up. We encouraged both paths, purchasing flippers and a toy doctor’s set for her birthday. Mum was often spotted, from the beaches in Cornwall, trying desperately to keep up with the mermaid, or at home with the doctor, undergoing surgery or at the end of a stethoscope. Invariably, the diagnosis was “you need a chocolate biscuit”, to be shared, of course. There was a sense of ‘déjà vu’ when Anna’s real stethoscope arrived many years later, and a ‘test’ subject was needed.

To her friends, Anna became the ‘go-to’ person for everything; soulmate, counsellor, comedienne, library. She was full of fun and a deeply loving and caring friend. To her family, Anna was simply our World.

Penny Phillips (Anna’s mum)

Scott Morrish
Honorary member

Scott Morrish is a photographer and the father of three… Ben (thirteen), Ollie (six) and Sam… who should be eleven but — weakened by flu and overwhelmed by sepsis — died suddenly and unexpectedly aged just three in Torbay Hospital (Devon, UK). Sam’s death was immediately described as ‘explained’ but ‘unavoidable’. Years later, however, successive investigations determined that Sam’s death was ‘avoidable’ and the result of ‘a catalogue of errors’. He campaigns for a ‘Just and Restorative Culture’ to deliver psychological safety — for patients and staff — to break the cycle of avoidable harm. Scott was a member of the Expert Advisory Group that helped shape the UK’s pioneering Healthcare Safety Investigation Branch.

The research team collaborated with a co-design community of over 60 people, to learn from the experiences of everyone involved in investigations – patients, families, staff, investigators, policy makers, legal staff and other key stakeholders – to find out their needs during, and experiences of, the investigation process. An experienced design team at Lab4Living, organised and delivered the co-design workshops and developed the resulting guidance and processes.

The research team worked closely with two acute Trusts, and two mental health Trusts to test the guidance. The project team also worked closely with the National Healthcare Safety Investigation Branch (HSIB) on their maternity investigation programme.

Findings from the Learn Together programme of work, including the investigation resources, are used as part of a national guidance document that sits alongside the Patient Safety Incident Response Framework (PSIRF) from NHS England.