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Blog: Should CCGs work on kid’s palliative care?

15 August 2013

Exclusive: NHS West Leicestershire CCG child health lead Dr Satbir Jassal believes that CCGs must be the ones to tackle the complex needs of children with life-limiting conditions

Exclusive: NHS West Leicestershire CCG child health lead Dr Satbir Jassal believes that CCGs must be the ones to tackle the complex needs of children with life-limiting conditions
You might not initially think that commissioning for children with long-term life-limiting and life-threatening conditions should be high on a CCG’s to-do list. After all, the population – 40,000 children across England – is small compared to some of the numbers associated with the major public health issues which we, as commissioners, are being asked to tackle. Surely these children’s medical needs are provided for by specialist paediatricians, commissioned directly by NHS England? And aren’t their families supported by the voluntary sector – such as children’s hospices – in providing their day-to-day care?
While you might be forgiven for agreeing with any or all of the above, you would be in dangerous territory. The truth is that while small in number, children with long-term life-limiting and life-threatening conditions have very complex needs which, if not managed effectively, can reach crisis points very quickly – and on a regular basis. These are both distressing for children and families and very expensive for commissioners. A recent Government-commissioned funding review highlights that hospital admissions in the last year of life for children who need palliative care cost an estimated £18.2 million – far outweighing the cost of providing such care outside of the hospital setting. CCGs can reduce this demand on acute NHS beds by commissioning a comprehensive, 24-hour, seven-day-a-week children’s palliative care service.
'Vital care'
Palliative care for children is an active and total approach to care, from the point of diagnosis or recognition, throughout the child’s life, death and beyond. It embraces physical, emotional, social and spiritual elements and focuses on enhancing quality of life for the child and supporting their family. It includes managing distressing symptoms, providing short breaks and care through death and bereavement. It has the potential to improve a number of outcomes included in the CCG Outcomes Indicator Set and those identified by the Government-commissioned Children and Young People’s Outcomes Forum.
It is true that NHS England is now responsible for commissioning specialised children’s palliative care services which includes managing complex symptoms and prescribing unlicensed medicines. However, CCGs are responsible for the bulk of medical care for children with life-limiting conditions: in some areas, community children’s nursing teams provide the lion’s share of general children’s palliative care – supporting families to care for their children in the place of their choice – and reducing costly and unplanned emergency admissions to acute care.
Secondary care for children with complex needs should be included in a CCG’s palliative care service specification, as should care provided by children’s hospices and other voluntary sector services. Many of these providers can deliver important step-down care for children leaving hospital, medically-supported short breaks and end of life care where requested by a family – all of which reduce demand for acute NHS hospital beds. Mental health services, including emotional and psychological support for children and families pre and post-bereavement, are also vital in reducing the need for other services later on.
Given the small number of children who require this level of care, it is sensible for CCGs to work with others in their region to plan children’s palliative care jointly across a population of at least one million, while building on excellent services locally. This creates an economy of scale and promotes efficient use of CCG resources. Commissioning in partnership with local authorities is also vital: children’s palliative care spans health, education and social care services – a joint approach gives the best chance of ensuring care which is centred on the child, reducing the risk of them falling through the gaps between services and hospital becoming the only option when a crisis arises.
Together for Short Lives – the leading UK charity for all children with life-threatening and life-limiting conditions and all those who support, love and care for them – has summarised what a local children’s palliative care service should include, and advice on how to commission it in a short guide(link) for CCGs. The guide clearly sets out the actions that CCCs should take through the five steps of the commissioning cycle and includes on latest available evidence on the demand for these services.
Although small in number, the population of children who need palliative care is rising thanks to new medical technologies and increasing life expectancy. They are a group that CCGs cannot and should not ignore – and for whom CCGs should begin to commission services as soon as possible.

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