Following the government’s announcement today of £286m for adult end-of-life care, charities representing children’s palliative care services, life-limited children and their families are asking the government why it is still refusing to spell out the funding for the children’s palliative care strategy launched in February.

At the same time, charities welcomed the government’s acknowledgment that more children with life-limiting conditions are living longer and, therefore, the transition from children’s to adult care should be carefully considered by commissioners in planning end-of-life care services.

Lizzie Chambers, Chief Executive of the Association for Children’s Palliative Care (ACT), said:

“Today’s welcome announcement complements the children’s palliative care strategy announced in February. Yet although PCTs now know what new money they are getting to improve adult services, they are still in the dark about the extra funding they have been given for children. There seems to be one rule for adults and another for children. We hope the forthcoming Child Health Strategy will clear this funding fog.”

Developed by Richard Hain, Chair, Education & Training Subgroup for the British Society for Paediatric Palliative Medicine

The establishment of a National Training Grid (NTG) of approved posts in Paediatric Palliative Medicine earlier this
year has had an impact on those currently training, or planning to train. This will be further complicated by the
anticipated introduction of a sub-specialty certificate in paediatric palliative medicine over the next few months.
One result of the changes is to ensure that there are clear requirements for training, and well-structured training
schemes. At the same time, however, the changes also mean that there is less flexibility in training than has been
the case until now.

Sub-specialty training requirements are laid out, not by individual consultants, but by the RCPCH, the Postgraduate
Medical Education and Training Board (PMETB) and, increasingly, the General Medical Council itself. There is still
some discretion, but at the time of writing the extent of this is uncertain and it is certainly less than previously.  

Children with life threatening illnesses know what helps them to heal and they have the capacity to be active participants in creating healing environments for themselves and others. “Phila Impilo! / Live Life! Children Advocate Best Practices for Healing” a 64p booklet (2008) by social anthropologist Jill Kruger, presents the experiences and recommendations of 23 children aged 6 to 13 years on illness, treatment and care.

Their insights were expressed in a participatory arts workshop in South Africa for young patients in long term hospital care for tuberculosis (TB) and HIV related illnesses. The project was carried out through Young Insights for Planning (YIP). This South African NGO works through child participation to ensure that children’s perspectives and recommendations about their daily lives are recorded, disseminated and included in official planning processes. YIP brings children directly to the advocacy process through direct presentation, print or video materials. The process described in the Phila Impilo! / Live Life! materials could be applied in paediatric wards and clinics of all kinds.

The publication project was primarily sponsored by Oxfam International, JOHAP (Joint Oxfam HIV and AIDS Program), managed by Oxfam Australia. Download it now. 

ACT has announced the winners and runners up in their Champions Awards scheme designed to recognise excellence in the delivery of services to life-limited children, young people and their families in England.

The charity asked children and young people with life-limiting or life-threatening conditions, as well as their parents, family members and carers to tell them about their ‘Champions’. ACT knows how much parents and carers value the care provided by so many individuals, teams and organisations to their children and wanted this hard work to be acknowledged.