Who is part of the team?
Specialist Palliative Care Nurses
Specialist Children’s Palliative Care Nurses will work across Lancashire and South Cumbria. Each nurse, employed by a different NHS trust within the region, will use their knowledge and expertise in the care and management of a defined caseload of children with palliative care needs.
Family Support Workers
Family Support Workers will work across Lancashire and South Cumbria. They will provide emotional, social and practical support to children and their families such as driving families to medical appointments and organising activities for siblings. They will be supported by a project lead who may also take on a small caseload to ensure geographical coverage.
Family Service Coordinators
Family Service Coordinators will cover the Lancashire and South Cumbria region. Their role is to reach out into their community, linking families with children’s palliative care and other services in the region as well as with the national services.
Day to day operational support for the programme will be delivered by a clinical lead and a project lead employed by Together for Short Lives and Rainbow Trust Childrens Charity, respectively. A key aspect of their role will be to bring the programme team together regularly to share good practice and learning. They will also ensure that all data collection requirements are met to inform the evaluation.
Family Service Coordinator Team
Family Support Workers
Angela started working for Rainbow Trust as a Kentown Family Support Worker in January 2023. She has over 25 years’ worth of experience and knowledge of working with children and families in a wide range of settings including both mainstream and special needs children supporting children who have autism, ADHD, and challenging behaviour. In her role she aspires to help others, learn new skills, and develop her knowledge in various ways. She has a keen interest in Counselling and hopes to complete a course to enhance her knowledge to help others. She offers compassion, support and an understanding of the challenges that life shows.
Justine joined Rainbow Trust in June 2023, having worked with children and families in various capacities for the last 25 years. She has worked in a variety of support roles across Postnatal Wellbeing and both mainstream and special needs children, supporting people with a range of issues, including postnatal depression, Down Syndrome, Non-verbal Autism, Sensory Processing Disorder, ADHD, Profound and Multiple Learning Disability and severe physical disabilities. Justine has completed various counselling courses and believes in a holistic approach to supporting families, offering help to every member of the family.
Louise joined Rainbow Trust as a Kentown Family Support Worker in September 2023. She has experience in a care background which includes looking after families with children who have complex health needs. Louise is passionate about sharing her experience with the Kentown programme team and upskilling herself through continued professional development. The families supported as part of the Kentown programme will be at the centre of everything Louise does, and she is very excited to support them in the home, hospital, and local community. Louise is a compassionate member of the team who strives to gain an understanding of the difficulties our families face.
Katie is the Kentown Childrens Palliative Care Community Nurse Specialist for North Cumbria Integrated Care NHS FT. The geographical areas she covers are South Cumbria including Barrow, Millom, Kendal, Windermere and Sedbergh. Katie is an experienced paediatric nurse and has spent most of her career working across acute and community services, supporting families and children with life limiting and life threatening conditions in the South Cumbria area. Katie understands the challenges faced by children and families accessing palliative care in isolated areas and is keen to work collaboratively with services and teams to help to further improve the quality of care that children and families receive.
Victoria is the Kentown Childrens Palliative Care Community Nurse Specialist for Lancashire Teaching Hospitals Trust. The geographical areas she covers are Preston and Chorley/ South Ribble. The local District General Hospital for children is Royal Preston Hospital. Victoria has been qualified as a children’s nurse for 28 years and has spent the majority of her career supporting children with palliative care needs and additional health needs in community. This experience/support has been within children’s hospices and across many other community settings and in different parts of the UK.
Amanda works for Together for Short Lives as Head of Clinical and Family Services and has operational responsibility for the Kentown Support Programme. She is responsible for the day-to-day development, management and delivery of the Kentown programme and works collaboratively with stakeholders and a range of organisations (statutory and voluntary sector) that operate across the palliative care sector. Amanda is an experienced children’s nurse and has worked in hospitals and the community and as Director of Care of a children’s hospice. She has a Post Graduate Teaching Certificate and has taught palliative and end of life care, communication and medical ethics at university.
William works for Rainbow Trust Children’s Charity as Advanced Practitioner and manages the team of Family Support Workers across the Kentown programme area. He started as a Family Support Worker himself with Rainbow Trust in 2019 and still has a small caseload of families he works with, giving him and his team an insight into the day to day support we offer to families. William has previously worked in local authority and the charity sector supporting vulnerable families in a variety of situations. He has a BA in Childhood Studies and Post Graduate certificate in Early Education. He also currently delivers Youth Mental Health First Aid training to all Rainbow Trust staff and the Kentown team.
A Programme Board (“the Board”) has been set up to oversee the effective and efficient delivery of the Kentown Children’s Palliative Care Programme. The Board comprises the following:
– CEO, Together for Short Lives
– CEO, Rainbow Trust Children’s Charity
– Director of Service Development and Improvement, Together for Short Lives
– Director of Care Services, Rainbow Trust Children’s Charity
– Director of Finance and Resources, Together for Short Lives
– Independent members from across the health, social care and voluntary sector.
Edge Hill University will lead the evaluation of the Kentown Children’s Palliative Care Programme.
The aim of the evaluation is to assess and demonstrate the changes made by the Kentown Children’s Palliative Care Programme including the differences in the experiences of children with life limiting conditions and their families living in the region and professionals supporting them. The evaluation will further consider the potential for the development of the Kentown Programme throughout the UK.
We are a team of inter-disciplinary researchers based in the Faculty of Health, Social Care and Medicine and the Evaluation and Policy Analysis Unit at Edge Hill University.
The evalution team will be led by Dr Kate Knighting who is a Reader in Palliative and Supportive Care at Edge Hill University. Kate is an experienced researcher with a particular interest in the needs of children and young adults with complex healthcare needs and their families. Kate is the principal investigator for the evaluation.
Bernie Carter is a Professor of Children’s Nursing at Edge Hill University. Bernie is an experienced researcher whose work focuses on children and young people whose lives are disrupted by disadvantage, pain, illness, disability, and complex health care needs (including palliative care), and the ways in which this affects their parents, brothers and sisters and family life.
Axel Kaehne is a Professor of Health Services Research at Edge Hill University and the Director of the Evaluation and Policy Analysis Unit. His main interests are the implementation of changes in health services and evaluation approaches and theories.
Julie Feather is a Research Fellow at the Evaluation and Policy Analysis Unit at Edge Hill University. Julie’s research focuses on service transition for young adults with complex healthcare needs, programme implementation and evaluation.
How we will undertake the evaluation
The evaluation of the Kentown Children’s Palliative Care Programme will be undertaken over a 3-year period (September 2022 to August 2025). We will undertake a formative and summative evaluation using a mixed methods approach. This will involve us:
- Conducting a documentary analysis of Kentown Programme policies and documents guided by an evaluability assessment framework;
- Conducting a series of scoping interviews with Kentown Support staff, longitudinal interview sets with children, young people and parents, workshops and focus groups with key Kentown Programme stakeholders. This will be part of a process evaluation; and
- Conducting workshops and secondary analysis of routinely collected Kentown Programme service and outcome data. This will be part of an impact evaluation.