Health CommitteeWritten evidence from Together for Short Lives (LTC 05)

About us

Together for Short Lives is the leading UK charity for all children with life-threatening and life-limiting conditions and all those who support, love and care for them. We support families, professionals and services, including children’s hospices. Our work helps to ensure that children can get the best possible care, wherever and whenever they need it.

Children’s palliative care (CPC) differs greatly from adult’s palliative care. Whereas the majority of adults only need palliative care at the end of their lives, children with life-limiting and life-threatening conditions require palliative care over a much longer period, often from birth. It is common for their conditions to fluctuate and, as such, it is often much more difficult to identify when a child is moving into their end of life phase. Children with life-threatening and life-limiting conditions often have complex disabilities, while the range of health conditions which results in children requiring palliative care is more diverse.

To cite the committee’s definition of a long-term condition, many children who need palliative care have conditions which “cannot, at present, be cured, but can be controlled by medication and other therapies”.

We welcome this opportunity to comment on the management of long-term conditions in England. We would be happy to provide oral evidence if requested to do so.

Summary of our Submission

When a child who has a life-threatening condition reaches the terminal phase of their illness, the preference for both the child and family is usually to die at home in familiar surroundings. However, a majority of children aged 19 and under suffering from conditions likely to have required palliative care (excluding neonates) die in hospital.

There is greater scope for treating young people who need palliative care outside of hospital settings through children’s hospices and other types of community care. These services represent a more cost-effective approach to CPC and can reduce costly, unplanned emergency admissions to hospital.

There are examples of existing good practice: in some areas, community children’s nursing teams carry out the majority of care to children and young people in the community. This includes the more day-to-day aspects of children’s palliative care. Some children’s hospices also provide a “hospice at home” community model of care.

Poorly planned transitions between children’s and adult’s services mean that many young people with life-threatening and life-limiting conditions face a “cliff-edge” when they reach adulthood; community services must be commissioned effectively to provide integrated palliative care to young people.

Together for Short Lives is working with the Department of Health and NHS England to develop guidance for Clinical Commissioning Groups (CCGs) to help them commission CPC services. This guidance will promote community-based, integrated care.

Providers of CPC, including children’s hospices, have a strong record of providing person-centred care to children, young people and their families. Approaches such as key working can help to join up care for children and young people.

The Government’s proposed reform of special educational needs and disability policy has potential to join up education, health and social care for children with life-threatening and life-limiting conditions. However, as the reforms currently stand, only children with special educational needs will benefit from the reforms. We believe that this is a wasted opportunity.

There is a strong link between CPC and mental health and social/economic wellbeing in terms of the impact on families who care for children with life-threatening and life-limiting conditions.

Our Submission

The scope for varying the current mix of service responsibilities so that more people are treated outside hospital and the consequences of such service re-design for costs and effectiveness

1. Universal, targeted and specialist CPC is provided by a web of providers. Generalised CPC services may be commissioned from the whole range of the statutory and voluntary sectors using collaborative commissioning arrangements. At all times, locally available and community-led CPC should be at the heart of provision to children and young people.

2. There is greater scope for treating young people who need palliative care outside of hospital settings through children’s hospices and other types of community care. These services represent a more cost-effective approach to CPC and can reduce unplanned admissions to hospital.

3. Effectively commissioned and provided CPC can play a cost-effective role in supporting early discharge for children and young people from acute care settings through step-down care. It can also help to reduce unplanned admissions among children and young people to acute care settings. The Government-commissioned funding review1 highlights estimates that hospital admissions in the last year of life for children who need palliative care cost £18.2 million. This far outweighs the cost of providing palliative care outside of the hospital setting. Research has also shown that short breaks provided by children’s hospices—which may include healthcare interventions—help to reduce stress on families and demand on public services.2

4. Evidence submitted by Together for Short Lives to the committee’s recent inquiry into the implementation of the Health and Social Care Act 2012 demonstrates the wide variation in the extent to which PCT clusters, clinical commissioning groups (CCGs) and local authorities commission children’s hospices to provide CPC. In order for more CPC services to provided outside of hospital, commissioning organisations must provide fair and sustainable funding to a range of providers across the statutory and voluntary sectors.

The readiness of local NHS and social care services to treat patients with long-term conditions (including multiple conditions) within the community

5. When a child who has a life-threatening condition reaches the terminal phase of their illness, the preference for both the child and family usually to be able to die at home in familiar surroundings. However, in 2007 a review found that 74% of children aged 19 and under suffering from conditions likely to have required palliative care (excluding neonates) died in hospital.3

6. The ability of community services to treat young people with life-threatening and life-limiting conditions varies between local areas. In some areas, community children’s nursing teams carry out the majority of generalised CPC with input from specialist health professionals. The Together for Short Lives care pathway4 describes the CCN services required as part of comprehensive CPC.

7. A Department of Health report of its review of community children’s nursing5 cites the example of the Diana team, which part of Newham community health and care service. The Diana team is a nurse-led multidisciplinary team established in 2006, based at Richard House children’s hospice. It works in partnership with the hospice to deliver community palliative care for 0–19-year-olds, including children with long-term ventilation needs. The team focuses on respite, symptom control management and end-of-life care. The team also includes a clinical psychologist, play specialist co-ordinator and a team of healthcare support workers.

8. During 2009–10 the Diana team had a caseload of approximately 40; 10 children received end-of-life care. The local children’s integrated commissioner invested in the service, increasing the workforce by 100%. The Diana team’s key achievements include:

(a)Keeping children with complex healthcare needs, including long-term ventilated children, out of hospital.

(b)Planning and co-ordinating end-of-life care, ensuring that choice of place of death is offered.

(c)A considerable increase in productivity year on year, especially in the area of new referrals, as clinical professionals become more confident in the expert delivery of palliative care—including end-of-life care; and

(d)Establishing a play service offering therapeutic play in the child’s home.

9. Some children’s hospices also provide a “hospice at home” community model of care, where hospice medical and care staff provide an outreach service, supporting families in caring for their children at home.

10. Poorly planned transitions between children’s and adult’s services mean that many young people with life-threatening and life-limiting conditions often face a “cliff-edge” when they reach adulthood. In some areas community children’s nurses will only care for young people up to the age of 16. Where this is the case, care should transfer to district nurses. However some district nurses will not provide palliative care to young people aged 16–19 unless commissioned to do so by their CCG. Many young people and families who find that their transition from children’s to adult services is marred by a lack of communication between local providers and a struggle to secure the care they need.

The practical assistance offered to commissioners to support the design of services which promote community-based care and provide for the integration of health and social care in the management of long-term conditions

11. Together for Short Lives is working with the Department of Health and NHS England to develop guidance for Clinical Commissioning Groups to help them commission CPC services. The guidance will advocate community-based, integrated care for children with life-limiting and life-threatening conditions.

Current examples of effective integration of services across health, social care and other services which treat and manage long-term conditions

12. There are some good examples of integrated health and social care services for children who need palliative care, as case of the Newham Diana team cited in paragraphs 9 and 10 demonstrate. Providers of CPC, including children’s hospices, have a strong record of providing person-centred care to young people and their families. In some local areas, the NHS and the local authority jointly commission children’s palliative care together.

13. More widely, however, Together for Short Lives believes that the separate health and social care commissioning systems make it difficult for providers to treat the person rather than their condition(s).

14. The Government’s proposed reform of special educational needs and disability policy—set out in the Children and Families Bill—has potential to better integrate education, health and social care for children who need palliative care. However, as the reforms currently stand, only children with special educational needs (SEN) will benefit the more joined-up services that the single assessments and Education, Health and Care Plans that the Bill proposes. 25% of young disabled people do not have SEN.

15. Local authorities will also not be duty-bound to undertake the single assessments and to put a plan in place if a young person is over the age of 16 and not in further education or training. This is a missed opportunity—Together for Short Lives calls for all young disabled people between the ages of 0 and 25 to have access to joined-up assessments and services, regardless of their educational status.

16. Key working approaches to providing services can lead to more integration for children and young people. Key worker support provides a system-navigator who aims to ensure holistic care and support to meet the individual requirements and aspirations of the child and their family. The care and support they provide is family centred, not only child-centred.

17. A recent paper from the National Children’s Bureau6 summarises the key evidence and consistent elements of a key working approach. It also analyses the implications of key working in health, social care and education. The Government is testing the key working approach as part of its special education Needs and disability (SEND) pathfinder programme. An interim report of the programme’s progress highlights some positive progress in terms of key working achieving better outcomes for disabled children.7

The interaction between mental health conditions and long-term physical health conditions

18. There is a clear link between CPC and the mental health of families who care for children with life-threatening and life-limiting conditions. Families may feel particularly vulnerable when it has been established that their child has long-term palliative care needs. Unrealistic expectations not discussed with the family on discharge from hospital following initial diagnosis and treatment can lead to increased feelings of isolation, exhaustion, stress or depression.24 Family relationships are also put under stress in caring for a child with a life-threatening and life-limiting condition. It is important that short breaks are provided for families as part of a comprehensive palliative care service.

19. It is important that bereavement services are in place for parents, siblings, grandparents, other family members and friends—all of whom will have different care needs—during the child’s illness and following their death.

The extent to which patients are being offered personalised services (including evidence of their contribution to better outcomes)

20. Providers of CPC, including children’s hospices, have a strong record of providing person-centred care to young people and their families.

21. We know from evidence that a disjointed system of care presents many challenges for families of children with life-limiting conditions. These families routinely deal with over 30 professionals from education, social care, health and other services. Communication between agencies is generally inadequate, leaving families burdened with the stress of navigating their way through an uncoordinated system.

22. This experience is common among families of disabled children. However, for families whose children’s lives are likely to be short, time wasted navigating through the system in this way can be particularly distressing.

9 May 2013