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Response to NICE palliative care guidance

Noah’s Ark Children’s Hospice welcomes the final guidance by the National Institute for Health and Care Excellence (NICE) on palliative care for children and families.

NICE has published the guidance to improve the end of life care babies, children and young people receive – see the news article on the NICE website.

Noah’s Ark’s chief executive Ru Watkins says, “We are reassured that children and families may now expect better palliative care and support. Our charity was founded by Michael McInerney directly in response to levels of care which he and the local community considered were simply not good enough.

“Funded almost solely by the community, we have been working since 1999 to make many of the requirements set out by NICE today available to children and families. Supporting 150 families in central and north London and Hertsmere, we believe that we are currently meeting just one-tenth of the need in our service area.

“We provide clinical palliative support in family homes, augmented by volunteer support to help ease the burden. Our exceptional model of care focuses on holistic support packages tailored to each family’s needs – as they see them – and includes regular updates to care plans.

“Our support can range from simple activities such as gardening, collecting shopping, and playing with siblings to give them some one-on-one time. Sometimes an overwhelmed parent is grateful simply for someone to make a cup of tea and take time for a chat.

“We provide therapists who specialise in play, as well as music and drama. Specialist play in particular supports children if they are about to undergo a stressful procedure or are worried about their condition. For children with sensory impairment, there are ways of playing that can help with development. Help is available for brothers and sisters too and this can also be after bereavement.

“Our play specialists use sensory play as part of their sessions. Using all five senses, sensory play encourages children to explore materials, building up their fine motor skills and coordination. Children process information through their senses and learn through exploration.

“In addition, our family activities provide opportunities for all Noah’s Ark families to get together in an inclusive environment. Just last Sunday, many of our children were able to go ice-skating – even in their wheelchairs.

“Opportunities such as these help families create precious moments. Volunteer help in the home and clinical support also take the pressure off for families, providing more precious time together.

“There is a misunderstanding that the word hospice spells the end and that it’s all about sadness. However, medical advances are allowing children to live longer and at home. And in our Care environment, it’s really all about happy children, lots of laughter and lots of smiles.

“We believe that more care, structured along the lines of our model, will be required in the future. Today’s NICE guidance seems to bear this out.”

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