Project information

Addressing the postcode lottery of palliative care

Jessie May offers terminally ill children and their families regular respite and palliative care throughout a child’s illness and bereavement support for up to 5 years after a child’s death. Our professional nurses are a lifeline giving families a vital break from their caring responsibilities.

12 months

Charity information: The Jessie May Trust

The Jessie May Trust logo
  • Need

    Need

    There are families caring for a terminally ill child in our operating area not receiving our respite and bereavement care; families who administer medical treatments, sleep in shifts to make sure their child continues to breathe, rarely leave the house and survive on limited income as they give up work to care for their child. By 2023 we want to reach all families in our operating areas not currently supported. To achieve this we need to expand our caseload capacity to meet this need.

    Solution

    Our first step towards this goal is to increase our number of referrals this year by an additional 11 children. Eleven more families that we can offer a lifeline to the outside world and afford them the opportunity to take a much-needed break. Our professional nurses provide free regular respite care, support family days out, long-term bereavement support, and highly intensive, specialist end of life care. Eleven additional families no longer housebound, isolated and exhausted.

  • Aims

    Aim 1

    Continue to operate a no waiting list policy so new families can receive our support immediately


    Activities

    » Increase our caseload capacity so we can accept new families currently unsupported in our operating areas
    » Conduct the 7 set-up visits needed to create care agreements, meet our nurses etc for each additional child predicted to join our caseload in 2019

    What success will look like

    All families referred are accepted onto our caseload immediately and we are able to conduct the set up visits needed to allow regular respite care to begin.


    Aim 2

    Provide respite and palliative care support to improve the whole family’s health and well-being


    Activities

    » Provide regular respite visits to the families of terminally ill children, giving them an uninterrupted break from their caring responsibilities
    » Provide care from professionally trained nurses who can respond to any medical situation within the family home so parents can leave the family home
    » Ensure parents’ feel part of a supportive community of others caring for a terminally ill child through family events and activities

    What success will look like

    Through our annual survey families report Jessie May’s support has improved the family’s health and well-being and they feel part of the wider Jessie May community.


  • Impact

    Impact

    Our long-term impact is to improve the health and well-being of families caring for a terminally ill child - families who are usually socially isolated and struggle to take part in everyday activities. By providing regular respite they can maintain their social networks and enjoy the same opportunities as other families. We will measure our impact through our annual family survey. This assesses a family’s perceptions of social isolation, well-being and time spend during a respite visit.

    Risk

    The biggest risk to this project is matching the current need for our services versus the predicted future demand. We regularly asses the needs of our current families and ability to accept new referrals to ensure we maintain a robust and viable level of care. Our trustees have expert knowledge in the landscape of palliative care and use this to continually monitor our current care capacity, set realistic targets for our service, and take appropriate action to modify our service when needed.

    Reporting

    Jessie May will produce a full report including the project’s impact and case studies to be shared with pledgers and individual donors via e-mail or in the post. A copy of the project report will be made available on our website and promoted through social media.

  • Budget

    Budget - Project Cost: £23,100

    Loading graph....
      Amount Heading Description
      £20,790 Nursing costs salaries, national insurance, nurse pension contribution, travel expenses
      £2,310 Administration costs associated with making every visit possible
  • Background

    Location

    We support families throughout Bristol, South Gloucestershire, North Somerset, Bath & North East Somerset, Swindon and Wiltshire.

    Beneficiaries

    Our project will support terminally ill children aged 0-19 years and their families. None of the children and young people currently in our care are expected to reach adulthood. They have all been born with rare genetic, metabolic and neurological conditions or have experienced complications at birth.

  • Why Us?

    Why Us?

    Jessie May was created 22 years ago by a family, for families. We remain the only charity in the South West to deliver palliative care within the family home and provide bereavement support for up to 5 years after a child’s death. All our nurses are highly trained professionals who can meet the complex medical needs of every child they care for and respond to any emergency within the home. It is our consistency of care throughout a child’s illness that sets us apart.

    Read more about the Charity running this project.

    People

    Chris Roys

    Chris is CEO of Jessie May and a trustee of Together for Short Lives. A qualified social worker, he has worked overseas in international development.

    Tracie Steer

    Tracie is a nursery nurse with a background in health and education. She has worked with children with special educational need for over 20 years.

    Steve Wiltshire

    Steve is a Jessie May nurse in our Bristol North team. He has always wanted to work in the community supporting terminally ill children.

    Ruth Butcher

    Ruth is Bristol North care team leader. She plans respite, support and end of life care for families by a small team of specialist nurses.

The Snow's story

“It was good to learn that my emotions I had been having were completely normal and I could see things in perspective. I’m at the stage where I’m having to think of myself a bit more as a mum and as a Carer. The respite visits make my ability to care better in the long term.”

Jessie May parent