Within NHS Grampian, approximately 15 children die annually with palliative care needs. Historically, most children died in the children’s Hospital in Aberdeen. Primary care practices often weren’t confident in their ability to deliver end of life care and hence the families preferred their child to die in hospital. Recent local research, however, emphasised the importance for families to have the opportunity for their child to die at home or as close to home as possible.
Delivering best practice end of life care at home is challenging given the size of NHS Grampians’ catchment area (roughly 3500 sq mi). Additionally, NHS Grampian provides child health services to the neighbouring health boards of Orkney, Shetland, and to a lesser extent Tayside and Highland. Another challenge is that the paediatric hospice is 150 miles away and its outreach team does not provide end of life care in an area where most Out of Hour’s community nursing services do not provide care to children. Furthermore, with a total of only 45 miles of dual carriage way in Grampian, driving conditions can be hazardous, especially in winter.
In 2008, a multidisciplinary group of clinicians came together to try and develop paediatric palliative care in Grampian. Initial efforts concentrated on the development of a palliative care suite in the children’s hospital. The suite opened its doors in 2010 and enables families to spend the last days of their child’s life together as a family, privately if they want, but with the availability of paediatric trained nursing staff when needed.
Symptom control guidance
Next, symptom control guidance was developed. Our manual is based on ‘Basic Symptom Control in Paediatric Palliative Care’ from the Rainbows Children’s Hospice but takes into account resources available in our area. The guidance is made available via the NHS Grampian’s intranet to every primary care practice in the health board. Together with our adult palliative care specialists specific (adult and paediatric) end of life guidance was developed and introduced individually to every primary care practice combined with ‘just in case boxes’. Individual children that are planned to die at home are now discharged with an end of life care plan for the family and primary care practice, that contains
- advice on symptom control,
- 24 hour contact details for specialist advice and
- open access to the children’s hospital at all times.
The suitability of the support provided to the primary care practice is evaluated by a questionnaire send to every practice that has delivered end of life care to a child.
A recent survey amongst primary care practices in Grampian revealed a great willingness to provide end of life care to children. The main concerns of the primary care practices are a lack of nursing staff to deliver care in the community and a lack of training for their staff in paediatric palliative care. To address the concerns, plans to supplement primary care practice’s resources in case of a child dying in the practice are being developed. Part of the supplementary staff might be available from the children’s hospital once a palliative care community nursing team has been established. Once resources are in place, primary care practices will be able to concentrate on supporting the families. To address the gaps in knowledge and skills of the adult trained staff in the community, face-to-face training and online training modules are being developed.
It is very encouraging to note that primary care practices within Grampian are more confident in their ability to deliver end of life care to children than before. It is hoped that with improving the available support for primary care practices, families can be confident that wherever they decide for their child to die, their child and family will receive the best possible care.