The recent headlines about the ‘’appalling end-of-life NHS care’’ highlighted in the Parliamentary and Health Ombudsman’s report took me back, yet again, to a weekend night in December 2005 when our younger son, Tim, died on a hospital ward. Tim, who had ALL and was 23, was looked after by an Agency nurse who reported to an Agency sister. The dose of diamorhine, before he lost consciousness for the last time, was administered by a locum registrar.
10 years later,
The study which is led by Professor Jeremy Whelan at UCHL is concerned with the experience of 16-40 year old cancer patients for whom palliative and end-of-life care is especially problematic. The aim of the study is to develop evidence-based new care pathways with an expectation of at least two and, possibly three pathways for different age groups and circumstances across this age range.
The study has been running for almost 12 months and significant evidence has been gathered from interviews with volunteer patients, their carers, clinicians and nominated Clinical Nurse Specialists.
The next stage is a series of workshops with family members of cancer patients (16-40) who are receiving end-of-life care or of a deceased teenager or young adult. The purpose of the facilitated workshops, is to discuss and develop new pathway options.
This is an incredibly difficult and sensitive topic but an incredibly important one in order to raise standards and make sure that patients’ wishes are met. If you meet the criteria or know someone who does, then please consider taking part.
Alternatively, reply to this blog or email me at firstname.lastname@example.org