Started by a family, for families, and now shaped by families - learn more about how and why Jessie May was established
Jessie May is a Bristol-based charity providing nursing care at home for children and young people with life limiting conditions who are not expected to live beyond the age of 19.
Jessie May was established in September 1994 by Chris and Philippa Purrington, following the death of their baby daughter Jessica May. She died from a genetic condition known as severe Spinal Muscular Atrophy when she was only 4½ months old.
Whilst the family were visiting relatives in Bristol, Jessica was admitted to the local hospital. It was here that the family learnt that the support they had received back at home in High Wycombe was not available to families caring for their child at home in the Bristol area.
Jessica was cared for by her family at home throughout her illness. She died peacefully at home in her father’s arms, in privacy, with dignity and surrounded by all those who loved her.
Jessica’s parents were determined to do what they could to enable other children with conditions like Jessica’s and their families to have support in their own homes and the choice to die at home when that time comes. After a lot of hard work and perseverance initial funding was secured, and Jessie May was officially launched in 1996.
For reasons of safety and security, all Jessie May Care Team personnel are employed throughUniversity Hospitals Bristol NHS Foundation Trust (UHBristol), and these posts are fully funded by Jessie May. All administrative personnel are employed directly by the charity.
The Trust is almost entirely reliant upon voluntary funding, and encourages donations from individuals, corporate organisations, community groups and grant-making or charitable trusts. No charge is made to families using the services of the charity.
Since Jessie May was founded in 1996 we have supported over 175 children and their families in the Bristol, South Gloucestershire and North Somerset area.
In this section you will find useful information relating to the care that is provided by Jessie May - whether you are a parent, health professional or someone who is able to help support our work by fundraising
To be told that your child will die before you is every parent’s worst nightmare. For many families in the local area, this is a reality. Some of these children will die when they’re very young; others will deteriorate slowly over a number of years, and their full-time care usually falls to parents who have to cope – 24 hours a day, 7 days a week, 365 days a year.
Jessie May recognises that the whole family is under huge emotional and physical strain. Through our team of dedicated Children’s Nurses and Nursery Nurses we provide specialist care and support to help alleviate some of this pressure. This support is provided in the comfort of the family’s own home whenever possible from the time of diagnosis onwards.
Each child is central to the service we provide and we believe in helping our children reach their potential and to make the most of the precious time they have.
The care we provide is holistic and family-centred, working closely with other professionals involved in supporting the family to ensure continuity of care and that all needs are met, whether physical, emotional, social or spiritual.
As the conditions or illnesses that the children have are all life-limiting and have no reasonable hope of cure, the service provided by Jessie May is described as children's palliative care which is defined as:
"an active and total approach to care, embracing physical, emotional, social and spiritual elements. It focuses on enhancement of quality of life for the child and support for the family and includes the management of distressing symptoms, provision of respite and care through death and bereavement." ACT and the Royal College of Paediatrics and Child Health 1993
For further information about our work please look through The Way We Work section, or to find out about referring to Jessie May please visit the Make A Referral section.
Registered charity number 108604