The All-Party Parliamentary Group (APPG) for Children Who Need Palliative Care is a cross-party group of MPs and peers at Westminster. It has been examining the extent to which the government is meeting its end of life care choice commitment for the growing number of babies, children and young people in England with life-limiting and life-limiting conditions.
Despite the commitment – which outlines six ways the government aims to support people approaching the end of their lives – the reality is that the quality of palliative care children and families can access is patchy and depends on where in England they live. It is unfair and represents a wholly unjustified health inequality.
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The inquiry has uncovered five areas of particular concern.
1. Access to children’s palliative care is limited out of hours and at weekends
Children with life-limiting conditions who are approaching the end of their lives – and those caring for them – should have access to advice from a children’s palliative care consultant and children’s nurses at any time, day and night. The APPG has found that this is only sometimes the case, which is restricting families’ ability to choose for their child to receive palliative care at home.
2. Access to short breaks for respite is limited
Children with life-limiting conditions and their families rely on short breaks for respite, provided by skilled professionals who can meet their often complex needs. However, the APPG has heard evidence from parents who have been unable to access short breaks when they need them most, meaning families have little alternative other than admitting their children to hospital when they reach breaking point.
3. Access to age-appropriate palliative care and smooth transitions to adult services is limited
The transition young people have to undergo from the comprehensive care offered by children’s palliative care to unfamiliar adult services can be daunting and often not joined up. Too few young people are receiving the care they need.
4. Access to specialist children’s palliative care teams led by Level 4 consultants is limited
NHS England states that specialist children’s palliative care teams should be led by medical consultants working at Paediatric Palliative Care Competency Level 4. These consultants are vital because of the level of expertise and leadership they can provide. However, the APPG has found that only some areas have access to these consultants.
5. Access to advance care planning is limited
The National Institute for Care Excellence (NICE) states that professionals should develop and record an advance care plan (ACP) to map the current and future care needed by each child with a life-limiting condition. However, this is only happening in some areas, which may be restricting families’ ability to access palliative care which meets their needs and wishes.
The APPG identified five barriers which explain why the government’s choice commitment is at serious risk of not being met. It’s not too late for the government to act – and there are a number of ways in which ministers and officials can work with partners including NHS England and Health Education England to overcome them.
1. Leadership and accountability
The way in which the NHS, CCGs and local authorities plan, commission and fund children’s palliative care in hospitals, children’s hospices and the community represents a postcode lottery.
- The APPG calls for the government’s mandate to NHS England – and the forthcoming NHS 10-year plan – to specify that the end of life care choice commitment be implemented in full for babies, children and young people.
- The government and NHS England should consider appropriate mechanisms to bridge the children’s palliative care accountability gap.
- The government should develop outcome indicators which measure the extent to which children with life-limiting conditions and their families can make choicesabout the palliative care they receive.
- The government should specify in the mandate to NHS England – and the forthcoming NHS 10-year plan – that physical and mental health services for babies, children and young people with long-term disabilities should be commissioned, resourced and provided.
Poor commissioning is often caused by CCGs and local authorities being confused about the elements of children’s palliative care they are responsible for commissioning. This is particularly problematic for the commissioning of short breaks (respite).
- The APPG calls for clarity on which parts of the health and care system in England are responsible for commissioning palliative care for children and young people aged 0-25. This should make clear who is responsible for commissioning short breaks and specialised children’s palliative care.
- NHS England should develop service specifications for children’s palliative care, which span generalist to specialised care provided in a range of settings.
The children’s palliative care provided by voluntary sector organisations, including children’s hospices, helps ease pressure on the NHS. However, the statutory funding they receive is patchy and unsustainable.
- The APPG calls for the Children’s Hospice Grant to be increased to £25million.
- The APPG calls on the government to bring about parity in the state’s percentage contribution to the charitable costs incurred by children’s and adult hospice and palliative care charities.
- The APPG urgently calls for a funded, cross-departmental children’s palliative care strategy for achieving better outcomes for children and families across the statutory and voluntary sectors
There are too few professionals with the skills, knowledge and experience needed to provide children’s palliative care. Specific skills are needed when speaking to children and families about the choices available to them and developing advance care plans with them; shortages in children’s nurses and children’s palliative care consultants are particularly acute.
- The APPG calls on the government’s mandate to Health Education England to specify the need for a health and care workforce in England which can meet the end of life care choice commitment for babies, children and young people.
- The APPG calls on Health Education England to assess the demand for nurses from voluntary sector children’s palliative care organisations and include it in their planning models – and develop a competency framework for providing children’s palliative care.
- The APPG calls on Health Education England and the Council of Deans of Health to work with the Royal College of Paediatrics and Child Health, the Royal College of General Practitioners, the Royal College of Nursing, and Together for Short Lives to develop a children’s palliative care training and education model.
- The APPG calls on the Council of Deans of Health to encourage university undergraduate nurse programmes to adopt the new Nursing and Midwifery Council (NMC) standards for nurses, including those elements which relate to providing children’s palliative care
The National Institute for Care Excellence (NICE) recommends that children’s palliative care services should be based on managed clinical networks (MCNs) and should collaborate on planning and providing care. However, East of England is the only region in England which has a children’s palliative care MCN.
- The APPG believes that the government should make sure that all 40,000 babies, children and young people in England with life-limiting or life-threatening conditions should have the right to an integrated assessment, plan and personal budget.
- The APPG calls on the government to commission a review of health and social care law, to strengthen and clarify rights and entitlements for disabled children and their families, including children with life-limiting conditions.
- The APPG urges the government and NHS England to invest in supporting work to develop of children’s palliative care MCNs across the country
- Advance Care Planning Implementation Group 28/09/2018
- Joining Together for Children’s Palliative Care 2019