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Meet Helena, Director of Service Development and Improvement

News and comment

I have been at Together for Short Lives for six weeks now, how the time has flown. I wanted to take this opportunity to introduce myself and give you a little of my background.

I qualified in Children’s and Adult Nursing in Belfast in 1991 and soon after took up my first Staff Nurse position on the children’s high dependency unit at Leicester Royal Infirmary. Looking back now I think this was my first proper introduction to looking after children who were seriously ill. I remember my first long-term patient, let’s call her Molly. Molly was one of triplets, her sister and brother were at home. She had a tracheostomy, was on CPAP ventilation and so ‘lived’ on the unit. I loved my shifts with Molly and like many staff soon became very attached to her and her family. Sadly, Molly died at the age of 18 months on the unit and I attended my first funeral.

Over the years I worked in many different clinical and advisory positions both in tertiary and community settings, in roles from Specialist Nurse, Advanced Paediatric Nurse Practitioner and eventually advancing to the role of Consultant Nurse. Alongside this went the academic study and many CPD achievements. I studied at Oxford Brooks University, completing my master’s degree, non-medical prescribing, leadership and management diploma, a certificate in education, and lastly my doctorate.

Looking after Molly in the early days birthed a passion in me for respiratory conditions so I developed in this field and began running asthma clinics and allergy clinics. I looked after pre-term babies at home on oxygen and children with tracheostomies which led me to take interest in continuing care and long-term ventilation. I enjoyed the flexibility of working across acute care, community care and the home environment. Over the years I have had several consultancy positions, met and worked with some wonderful people and successfully represented children’s nursing at many national and international levels.

After 21 years in clinical practice I moved into education and for the last nine years, I worked at De Montfort University where I undertook my doctorate study, supported by the local children’s hospice. For three years I had the privilege of talking to staff, volunteers and families both at the hospice and across seven community care teams in the East Midlands, exploring the factors that affect parents’ decisions to access a hospice or not. I have been actively involved in the East Midlands Regional Children and Young People Palliative Care Network and have represented the Council of Deans at the recent All Parliamentary Review on children’s palliative care services.

As an Associate Professor and Strategic Lead for Children’s Nursing at De Montfort University I integrated palliative care teaching and education into pre and post-registration nursing, midwifery and paramedicine curriculums. I passionately believe that students are the vehicles for change and that helping them understand more about death, dying and palliative care would have a positive impact on children, their families, peers and colleagues, across the NHS and beyond.

In 2020, I was awarded a Churchill Fellowship by the Winston Churchill Memorial Trust to travel to the Canadian provinces of Quebec, Ontario, Alberta and British Columbia. I am to visit children’s hospitals, children’s hospices and universities and explore how education and practice are linked and continue my work in understanding attachment theory in palliative care settings. Unfortunately, the pandemic has meant that travel plans have been postponed but hopefully later this year or next year I will be able to see that realised. I continue to hold an honorary contract as a senior research fellow at the university and am currently PI in a participation study with siblings of seriously ill children.

So that brings me to my current position at Together for Short Lives. I am passionate about working with families, children and young people with palliative care needs, to champion strategies that empower them, improve their quality of life and make a real difference. With your help, I want to ensure that Together for Short Lives supports services for families and professionals and delivers programmes that improve the quality and access to children’s palliative care across the UK.

As I settle into this post, I would love to connect with many of you who are working in this area. Please drop me a line and share your thoughts and ideas. I am particularly interested in education, training and quality and how Together for Short Lives could support this agenda in children’s palliative care. Hopefully, as Covid 19 restrictions lift I will be able to come and meet many of you in person.

Thank you

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