Name: Ruth Richardson
Job title: Assistant Head of Children's Nursing
Specialty: Children’s nursing
Organisation: Powys Teaching Health Board
This project is a joint engagement project with Powys Teaching Health Board (PTHB) Community Children’s Nursing Team and Ty Hafan Children’s Hospice. To overall aim is provide a good quality paediatric palliative care service within Powys ensuring that children, young people and their families receive a basic standard of care as outlined in the palliative and end of life delivery plan (2017) and supported by the PTHB Integrated Medium Term Plan (IMTP). A palliative care pathway will explore the seamless integration of care across the public (PTHB and Powys County Council) and third sector (Ty Hafan).
Within PTHB, children who have a life shortening or life threatening diagnosis are supported by the community children’s nursing team, there is no dedicated paediatric palliative care nurse specialist within the Health Board. All other HBs have a dedicated nurse specialist to provide support and advice to both families and other professionals. The Paediatric Palliative Care Nurse Specialist provides care coordination for children who are at end of life. They have a direct link to the All Wales Paediatric Palliative Care Network with 24hr access to medical support and supervision for case and symptom management. The medical cover for palliative care is provided by the palliative care network and is an all wales provision. The requirement for a specialist multi-disciplinary team including a nurse with expertise in paediatric palliative care is supported by NICE guidance (NG61).
Historically Powys has received input from the paediatric palliative care nurse specialists in adjoining health boards; this is not a formal commissioned arrangement and is dependent on capacity and identified as not being sustainable in this economic climate.
Children and young people who have palliative care needs in Powys have a right to receive equitable services to children in other areas. They and their families need to know that they can choose to die at home and that there will be the support to facilitate this. An freedom of information (FOI) request for paediatric palliative care in 2017 high-lighted the above deficit within Powys. In addition to the above it is noted that families travel large distances to access palliative care services within district general hospitals in adjoining health boards. The project aims to support the potential for “virtual” clinics to be held within Powys and facilitated by the nurse specialist.
The above base line assessment is further quantified by the following evidence:
- The Welsh Institute for Health and Social Care (WiHSC) report (2015) suggests an estimated prevalence rate for children and young people likely to require palliative care services as 15 per 10,000 population aged 0–19 (excluding neonates). This would fit with the PTHB estimation of 50 children within the Powys area.
- Nice Guidance (NG61) 2016 supports that best practice include the availability of a dedicated multi-professional team for all children and young people who require palliative care services. All health boards except Powys have a dedicated paediatric palliative care nurse specialist, therefore the service provision within Powys is not equitable. The WG Palliative and End of Life care delivery plan (2017) records that there is “ Within each health board a local team of specialist PPC nurse and paediatrician” when this is not currently the case in Powys.
- Whilst the WG (2017) report supports an “integrated management model” of care, there is a risk for Children, young people and their families in Powys of a lack of joined up palliative care. A specialist nurse within Powys would provide the link between local teams and the All Wales Network.
How did you initiate the work?
This project is a joint initiative with Ty Hafan Children’s Hospice which builds on work already commenced to improve children’s palliative care within Powys. Powys Community Children’s Nursing was invited to the All Wales Paediatric Palliative Care Implementation Group where the potential gaps in provision of palliative care within Powys were raised. Ty Hafan approached the Health Board to offer further support in the form of a community project.
Planning meetings involving senior management from the health board and Ty Hafan and the community children’s nursing team were held and a business plan agreed.
Aim and objectives set for the project with a small planning team. Prudent principles were used as a framework to ensure the objectives fit in with health strategy. Project leads from both areas were agreed.
A service operating agreement was agreed at senior level. Agreement that the project would cover a period or 2 years with an exit plan for Powys to have a paediatric palliative care nurse specialist in place within this time. To facilitate this PTHB would host a Ty Hafan community palliative care nurse to support the building of a robust palliative care pathway for end of life care in Powys. A community children’s nurse was identified to undertake specialist training in children’s palliative care.
An honorary contract was completed to allow the Ty Hafan Community Children’s Nurse work within the health board.
Families from Powys who were already involved with Ty Hafan were contacted and information on the joint project shared.
What have the challenges to implementing the service/intervention been? And what has enabled the implementation of the service/intervention?
The main challenges has been to ensure that both parties have equal benefit and a shared agenda. This has been addressed with regular meetings between the HB and Ty Hafan project leads. The service level agreement has help to clarify responsibilities for each party. Some logistical issues in progressing the Honorary contract for the Ty Hafan Community Nurse but these have not impacted on the project.
Has the initiative or project made a difference to patients/service users and or staff?
The project is in its second quarter and completed a scoping exercise of children with complex needs in Powys and face to face engagement with families commenced (12 families identified). A mapping exercise is now in progress to capture the complexities of managing end of life care in a vast rural area with a small population without a District General Hospital. Links with partner agencies have been made in particular the Integrated Disability Service and continuing care providers.
What are the long-term aims for the work?
The long term aim is for Powys children and young people to have a robust care pathway for palliative to include 24-hour access for end of life care in line with Nice Guidance. This cannot be provided by PTHB alone due to the small numbers of children and young people requiring the service and therefore there is a need to use an integrated approach with other agencies and especially the Children's Hospices in Wales.
This project links with another project due to be implemented by the paediatric palliative care implementation group for symptom support clinic inreach to Powys and is also support with EOL monies to provide training for a CCN to undertake specialist nurse training.