My career within the NHS – as a clinician, service manager, commissioner and policy advisor – has always had a focus on how important it is for people to be cared for at home, surrounded by their families. My work with Children and Young People has shown me that being at home, being able to maintain friendships, and being able to simply be a child are all even more vital when children are affected by long-term illness or disability. This is what Jessie May supports families to achieve.
I am proud to be the Chair of Trustees of Jessie May. I am able to use my skills and experience to support the Trust to grow, develop and strengthen, so that more families, in more places, can be supported to care for their children where they want to be. At home.
It was a privilege to be asked to serve as a Trustee for Jessie May. I have worked as a Trustee for other charities involved in work with sick and terminally ill children so I felt I had some experience to bring to the Board. However, as I learned how the work of the Jessie May Nurses transforms the lives of the families for whom they care, I came to realise that I was involved in something very special. One of the best things is that whether you are a volunteer, a nurse, the CEO or a Trustee you know that you are part of a ‘family’ and everyone is inspired to work for the common good. When I am out and about I am always looking for an opportunity to talk about the work we do – it is so special.
Everyone on the Board brings a special skill, mine is finance. I own a financial services business, so not only do I understand accounts, cash flow etc. but have hands on experience of running a business on a day to day basis. Running a charity has certain legislative restraints but in essence is a business and I feel I can bring my experience to help in this particular way.
I am the Chief Executive of fly2help, a charity that aims to improve the emotional wellbeing of people, young and old, living in difficult circumstances and inspiration to young people considering their futures. While it does very different work from Jessie May, both charities share similar objectives; that happiness, confidence and social opportunities are important for our quality of life.
My first connection with Jessie May was as a fundraising and business development consultant, when I was asked to review the charity’s fundraising programme and how it could support an organisational strategy for growth. When I worked at Save the Children, one of my team had a little girl who was born with complex and profound physical disabilities and she died aged four. Her mother set up a charity to train staff in Russian orphanages how to interact with very disabled children and I am moved to see this same kindness in Jessie May’s nurses. I joined the Board of Trustees in 2013 and serve on the Finance and Fundraising Committees and chair our Outcomes Measurement Working Group.
Over twenty years spent as a senior manager or fundraising consultant has enabled me to advise a wide variety of charities in social welfare, justice, mental health, education, healthcare, the Arts and heritage. The voluntary sector is driven and creative and it has been a privilege to work with many inspiring leaders, committed Trustees, enthusiastic staff and thoughtful donors.
My first introduction to Jessie May was in 1998 when my twin daughters, Francesca and Josephine, were referred to the service shortly after being diagnosed with a progressive life-limiting condition. Our Girls made firm friends with their Jessie May Nurses, enjoying the play, singing, stories and laughter the home visits offered and giving me a much appreciated break from my caring role. At that time my husband and I had no concept of how much Jessie May would mean to our family in helping us to cope with Fran and Jo’s decline and in connecting us with other families. The Nurses brought a wealth of knowledge and a calm, friendly professionalism to our sometimes chaotic home as our beautiful daughters changed from lively, boisterous children into teenagers with profound and complex needs, requiring highly specialised nursing and palliative care. Francesca died aged fifteen and Josephine aged eighteen leaving an enormous void in our lives. Our busy home fell silent and we turned to Jessie May for the bereavement support they offer families for the first five years after a child’s death.
I am proud to be a Jessie May trustee and my knowledge of this charity in the context of caring for my own children and as a bereaved mother gives me a valuable and unusual set of skills. In 2010 I founded ‘The Purple Group’, a bereavement group for parents and carers on the Jessie May caseload and I run the group as a volunteer alongside Jessie May Bereavement Nurses. I also work closely with the Fundraising Team, sometimes giving presentations to support funding bids.
In 2014 I contributed to a publication called ‘Lives Worth Living’, a collection of true stories written by the families of life-limited children. Following on from this project, I am currently co-facilitating workshops for Health Professionals about caring for children with life-limiting conditions from the perspective of the child, their parents and the family.
I am a Community Paediatrician specialising in Neurodisability and have worked in Bristol since 2006 where I quickly became aware of the fantastic service offered through Jessie May. When having difficult discussions with families about their child’s life limiting illness, I was able to immediately offer a referral to Jessie May for help and support. I have seen first hand the contributions Jessie May Nurses make to families through practical support, advocacy and compassion. So I welcomed the opportunity to become a Trustee and be involved in the skilled operation that goes on behind the scenes.
I am also a hospice doctor and sit on some strategic bodies responsible for children’s palliative care in the Avon area, where JM is clearly held in high regard.
I am always hearing from families how they value their Jessie May nurses who contribute to providing the best care for children and families.
I have just started as a Trustee for Jessie May, in February 2016. I work as a general practitioner in Bristol and wanted to use my skills in a different forum.
I am pleased to be given the opportunity to work with a charity able to provide such high quality support for vulnerable children at home. I enjoy being able to provide longer term continuity for patients and am impressed with the way the Jessie May nurses are able to support the child, parents and siblings over time. With recent successful fund raising, it is possible to provide care for more children than ever before.
It is an exciting time to join Jessie May and I look forward to making my contribution.
Sarah has enjoyed a long career in the National Health Service as a Registered Nurse and Midwife holding clinical and management posts across both community and acute healthcare. For ten years Sarah specialised in governance and risk management and attained her MSc in the subject. Most recently Sarah was Divisional Director of Nursing at Great Western Hospital in Swindon and currently is Head of Nursing and Midwifery in Bath. Sarah has held a number of voluntary roles over the years including Chair of Governors of Hawkesbury C of E Primary School. Sarah has three children, and is a keen horse rider, snowboarder and with her husband and friends, is currently walking the South West coast path.
Sarah said: “I am delighted to have joined the Jessie May Board of Trustees and will support the Trust using my health care knowledge, skills and experience to support families to care for their children at home.”
I am a trainee solicitor, currently undertaking my training contract in law firm based in Bristol.
It was whilst volunteering pro bono that I first became aware of Jessie May Trust and the amazing work it does. When the opportunity arose to become a trustee, I was delighted to be accepted to the Board.
Subject to statutory restrictions, running a charity is much the same as running a business. It was whilst undertaking my Master’s Degree in Law and Business I further developed my interest in business and in particular, business strategy.
Now, working in a corporate law firm where the majority of our clients are businesses, I am very aware of the importance of commercial considerations in running a successful business. I look forward to implementing the skills I have learned, this time from a trustee perspective.
I am proud to be able to contribute to Jessie May, having experienced first-hand how profoundly important it is that people are able to be cared for at home, with their loved ones around. The work that Jessie May does and the invaluable support, guidance and reassurance nurses provide can make such a significant difference to not only the person in need of care, but their friends and families. I look forward to being part of the wonderful team of trustees, staff and nurses that help Jessie May to continue to provide laughter and light for families in what can be some of their darkest times.