For the last seven years I have worked closely with a local disabled sports team. Understanding their needs and building many friendships with the team members has stood me in very good stead for my involvement with Jessie May. Engaging with people with disabilities not with disabled people. Understanding the enormous difference between those two descriptions.
I was privileged to be asked to be the Chair of Trustees just over three years ago. It is a role which I love. Everyday I proudly wear my purple Jessie May wristband and Jessie May lapel badge. It is amazing how many people ask me about those two items and their enquiry is my opportunity to “spread the word” about how great the Jessie May charity is. I recently ran the Bath Half Marathon to raise funds for Jessie May. I try as hard as I can to take part in as many of the Jessie May events as possible. The events are always inspiring. Everyone involved or associated with the charity are extraordinary people achieving extraordinary things. The wonderful unsolicited testimonials received by the charity make all the hard and committed work so worthwhile.
I have always lived in the Bristol area. I am married and have two adult children who are both married and one grandchild aged 7. I was previously a solicitor and then a barrister. As a legal practitioner I advised mainly on child law and also employment law. I continue working in the legal field in Bristol. I have have held a number of work place managerial roles and been President or Chairman of a large number of local organisations. I joined Jessie May at a very exciting time and I very much hope that I will continue to have a long and happy association with it.
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 retired palliative medicine physician. I worked for 10 years in paediatric oncology, which included running the palliative care team until 1994.
My passion for Jessie May began when, following Jessica May’s death, I worked with her parents and others to set up the Trust to the vision they had of an holistic, home based children’s palliative care service. I remained on the board as it grew from a team of 3 nurses and an administrator to where we are now. I took a four year break in 2006, returning to the Board in 2010, and my duties have included chairing the Jessie May Clinical Governance meeting.
I am proud of the service it provides; always putting the child and family at the heart of what it does; for its professionalism, the transparency of its offer to the children and their families, and all the while maintaining that important presence alongside them through their journey while responding to need
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 a Trustee 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.
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.