We thought it may at this stage be useful to outline the four categories of need that means a child and their family are eligible for support through the Children’s Palliative Care Pathway (CPCP):
* Category 1:
Life threatening conditions for which curative treatment may be feasible but can fail e.g. cancer, irreversible organ failures.
* Category 2:
Conditions where premature death is inevitable e.g. cystic fibrosis, Duchenne muscular dystrophy.
* Category 3:
Progressive conditions without curative treatment options eg Battens disease, mucopolysaccharidoses.
* Category 4:
Irreversible but non-progressive conditions causing severe disability, leading to susceptibility to health complications and likelihood of premature death e.g. severe cerebral palsy
The aforementioned categories are based upon the UK best practice held within the ‘Together for Short Lives’ documentation. This documentation underpinned much of the recent on island service development in this area.
The Oscar Maclean Foundation has committed to two year funding of specialist trained parent partnership worker, whose key objective is to assist children with chronic illness in Jersey and their families. Renee de la Haye has started her post in September last year (read our earlier blog post on Renee’s day to day responsibilities). Renee is doing an excellent job of building rapport with families, liaising with partner agencies and supporting the further development of the CPCP. She continues to work extremely closely with colleagues in Family Nursing and Home Care (who are the lead agency for the CPCP) as well as other service providers.
Renee has started her undertaking Holistic Needs Assessments of several children on the CPCP with more to follow soon. This assessment considers the medical needs of the child alongside the emotional, practical and spiritual needs of the whole family. Now the assessments have started using this format it will allow us to really test the paperwork, tools and processes that people have worked hard to develop. We will learn a great deal from this but anecdotal evidence suggests that the service is going to be much needed and well placed to help.
At the time of writing Renee is working with 10 ‘active’ referrals. In addition to this there are 2 further, recent referrals waiting for Renee to commence her involvement. Whilst we are always a little hesitant in providing specific diagnoses (due to the small and therefore identifiable numbers on island) the clients all have complex health needs (e.g. Cardiac and renal conditions). These needs could be as a result of either degenerative or curative health conditions.
Overall it feels like there is now some real traction regarding the service being developed and we can honestly say that each month a definite progress is being made. We are pleased that the 40+ children on the CPCP and their families will receive a highly valuable service.