INTRODUCTION

  The Association of Children's Hospices (ACH) is a national charity and umbrella organisation working on behalf of all UK children's hospice services and the children and families for whom they care. ACH is the national voice for children's hospice services and works collaboratively and in partnership with Help the Hospices as an advocate for hospice services. ACH specifically enables children's hospice services to work together and is dedicated to developing best professional practice, improving the provision, funding and strategic development of children's hospice services and promoting the needs of children with life limiting conditions and their families.

  This submission has been compiled following consultation with our member organisations comprising 34 operational children's hospice services and eight in project stage.

  Palliative care for children and young people with life-limiting conditions is an active and total approach to care, embracing the physical, emotional, social and spiritual elements. It focuses on enhancing the quality of life for the child and support for the family and includes the management of distressing symptoms, provision of respite and care through death and bereavement. (ACT/RCPCH 2003)[22]

  Current information on the epidemiology of children with life limiting conditions suggests that 12 in every 10,000 children aged 0-19 years in the UK are affected by a life limiting condition of whom about half will require active palliative care at any one time. Meeting these needs takes place in a variety of settings in which children's hospice services play a key role. Children's hospice care includes residential provision for children with palliative care needs and their families, as well as domiciliary and day care support. Research has shown that children's hospice services are highly valued by children and their families in meeting their needs.

  In 2003, 3,400 children and their families were supported by children's hospice services. Nationally it is estimated that between 15-20,000 children have a life limiting condition and who would therefore potentially benefit from children's hospice care. Currently, the planning and development of children's hospices is ad-hoc. Conscious of this situation, the ACH has set up a working group to look at ways in which it might influence positively the planning and development of future services.

  The ACH calls on the Government to help support it in this challenge by helping to forge close collaboration with key agencies in the voluntary and statutory sectors.

  One of the goals of this collaboration would be the development of a comprehensive national strategy for children's palliative care. Such a strategy would also complement and support the work undertaken in preparation for the implementation of the National Service Framework for children.

  In addition, we endorse the proposal by Help the Hospices that the Government appoint a Minister for Palliative Care. Their role would not only be to join up policy on palliative care for children and adults, but also to co-ordinate a cross departmental cross sector strategy to support people in coping with death and loss. To be effective, the partnership between the NHS and the voluntary sector must be vibrant and strong. The voluntary sector's experience is extensive, determined and innovative, but all too often its voice is not heard, to the detriment of the care that can be provided to children and their families.

  In areas where Children's Palliative Care Networks, embracing statutory and voluntary agencies have been established, such partnerships often work very well. However, such Palliative Care Networks are not presently a statutory requirement. A national strategy could usefully set a requirement on Primary Care Trusts to ensure that such Palliative Care Networks are established.

  There are considerable workforce issues in children's palliative care. There is a dearth of adequately trained care professionals. A national strategy could tackle ways of increasing the size of the available workforce in children's palliative care and of attracting greater participation in post-qualification training.

  Statutory funding streams for children's palliative care services, and children's hospices in particular, continues to be a pressing issue. Children's hospice services in England receive on average just over 5% of their funding from statutory sources. Although the Government's message over the last couple of years has consistently been that children's hospice services should look to secure funding from local commissioners, the experience of children's hospice services has been that local commissioners have not given priority to the funding of children's hospice services.

SUMMARY OF PROPOSALS

  1.  That the Government appoints a Minister for Palliative Care to provide leadership to the wider palliative care field and in particular to enable a national palliative care strategy to be developed for children, young people and adults with life threatening and life limiting conditions.

  2.  That the proposed Minister for Palliative Care ensures that such a national palliative care strategy is developed in true and close partnership between the voluntary and statutory sector.

  3.  That the national palliative care strategy strongly reinforces the requirements as set out in the Compact for the statutory sector to closely collaborate with the voluntary sector at all levels and, for example, requires all Primary Care Trusts in England to establish Children's Palliative Care Networks to facilitate this process.

  4.  That the Government invests in a programme to address the urgent need to attract more health care professionals into the children's palliative care field.

  5.  That the Government now gives priority attention to the need to address statutory funding issues within children's hospices and urgently extends to children's hospice services the funding discussions that are taking place in relation to the adult hospice sector.

1.  Issues of Choice in the provision, location and timeliness of palliative care services, including support to people in their own homes

  At present there is inequity of palliative care services for children across the country. In effect this means that availability of palliative care services for a child with life limiting conditions and his/her family very much depends on where they live in the country.

  This has been addressed to a limited extent by the investment into children's palliative care by the New Opportunity Fund for a three-year period from 2003 to 2006. This funding is however time-limited with no indication yet that it will be renewed. Such a situation threatens the sustainability of such services beyond the life of the funding. The collapse of such services in the future due to the absence of renewed funding would be liable to render the final situation worse than before.

2.  Equity in the distribution of provision, both geographical and between different age groups

  As already stated, there is inequity of access to palliative care services for children across the country. In addition, the development of specialist services for specific disease conditions is inconsistent. For example, services for children with Cystic Fibrosis are better developed than those for say children with Spinal Muscular Atrophy and Mucopolysaccaride disease.

  Furthermore, the availability of services for young people (ie 13-24 year olds) as they make the transition from children's to adult services is very patchy. The requirements of the Care Standards Act 2000 and their local interpretation by the National Care Standard Commission's inspectors are restricting the ability of children's hospices to accept referrals of young people aged 16 and over.

  A report on "Palliative Care for Young People aged 13-24" was published in September 2001 by Rosemary Thornes on behalf of the Joint Working Party on Palliative Care for Adolescents and Young Adults, set up under the auspices of ACT (the Association of Children with Life Limiting and Life Threatening Conditions)[23]. Within this report, the number of young people aged 13-24 "living under the threat of death who require symptom management and daily care" was estimated at between 6,000 and 10,000. It is estimated that this number will increase as improved techniques, treatment and management of terminal conditions leads to life limited young people living longer.

  A summary of the current provision for this age group is included in the report, but more detailed research needs to be carried out to map the provision of palliative care services for adolescents and young adults in the UK. No such mapping exercise has been undertaken at a national level for children's palliative care services. It is, however, a mark of the sector's innovation that it is from within the children's hospice movement that proposals (for example, the setting up of dedicated services) are being developed to help achieve this smooth transition.

  A national strategy for children's palliative care would be able to address issues relating to this particular age group.

3.  Communication between Physicians and Patients: the balance between people's wishes and those of carers, families and friends; the extent to which service provision meets the needs of cultures and beliefs

  There are some excellent examples within the children's hospice movement of good practice in ensuring that services are accessible to children and families from minority ethnic groups. ACH will shortly commence a piece of work in collaboration with its membership to explore ways of facilitating best practice across all its member organisations, with a view to seeking to enable children's hospice services across the country to be accessible to low income and minority ethnic families.

4.  Support services including domiciliary support and personal care

  For the majority of their time, children with life limiting conditions are cared for by their families in their own homes. Alongside specialist back-up, parents and carers need practical help and support. Periods of respite stays in a children's hospice are valued highly. But families also need regular short periods of respite in the home, maybe even just a few hours at a time, to give them the break they desperately need to attend to other family responsibilities, or enjoy time with their other children. "Respite at home" plays a valuable role in the overall practical support provided to families.

  There is, however, a great variability in the provision of domiciliary support, in terms of what is offered and how much. For example, psychological support is available to some families, but even in teams with designated posts for children with life threatening illnesses and their families, the support is either very thinly stretched or "rationed". This experience is repeated with other key services such as physiotherapy, occupational therapy, speech & language therapy. Only rarely are complementary therapies or art, music and play therapies available, despite their considerable therapeutic value. Bereavement support is one of the areas for which New Opportunities Fund monies have been made available. This has been widely welcomed. But not all areas received such funding resulting in too little by way of support for many bereaved families.

5.  Quality of services and quality assurance

  There is close external scrutiny and regulation of children's hospice services by the National Care Standards Commission, with standards in place for both adult and children's hospice services. The Association of Children's Hospices is engaged in ongoing useful discussions with the National Care Standards Commission about issues pertaining to specific standards and these discussions will transfer to the Commission for Health and Social Audit and Inspection as of 1 April 2004.

  The Association of Children's Hospices has undertaken pioneering work to develop a quality assurance tool for use across the children's hospice sector. The tool has been piloted in a small number of children's hospice services and will imminently be adopted for use across the whole children's hospice sector. In facilitating the adoption of the tool, the Association of Children's Hospices plans to address the question of how best to motivate children's hospice services to adhere to these standards, for example through the establishment of Quality Networks.

  This quality assurance tool has universal relevance across the spectrum of children's palliative care service providers, and the Association of Children's Hospices will seek in due course to disseminate the tool to professionals working throughout the children's palliative care field in the UK.

6.  Extent to which services meet the needs of different age groups and different service users

  See Section 2.

7.  Governance of charitable providers, standards of organisation, links to the NHS and specialist services

  The governance arrangements in all children's hospice services are subject to regulation by the Charity Commission.

  In addition, many children's hospice services have in place a clinical governance framework and wherever possible, colleagues working in children's services in the local PCTs and Local Authorities are encouraged to sit on Clinical Governance Committees within children's hospice services.

8.  Workforce issues including the supply and retention of staff and the quality and adequacy of training programmes

  There is a paucity of State Registered Children's Nurses who are willing to work in the field of children's palliative care. As a consequence recruitment persistently proves to be a significant problem across the children's palliative care sector including children's hospice services. This has inevitably impacted on service delivery and indeed in several instances across England the opening of children's palliative care services, for example many of those funded by the New Opportunities Fund, has been considerably delayed due to staff recruitment difficulties.

  Government initiatives in workforce planning must urgently take account of the need for an increased workforce in children's palliative care across the statutory and voluntary sectors.

  A training needs analysis is urgently required to identify the range of training and education opportunities currently available and to identify gaps in education provision for those working in the children's palliative care field. This should include those health and social care personnel working on the periphery of this field, such as GPs, who are often ill equipped when they encounter a child with a life limiting condition, due to lack of experience in this field.

  It is proposed that the Government provides funding for such and analysis, which could usefully inform negotiations with educational institutions providing basic health and social care professional training with a view to ensuring that training programmes incorporate the fundamentals of children's palliative care as a base line for all professionally qualified staff wherever they may be working. The introduction of nationally recognised and validated core competencies for children's palliative care would greatly assist this process. Furthermore, training programmes should seek to embrace a holistic approach to children's palliative care needs with a move away from the emphasis on the more traditional medical model, which is currently often the case.

  The proposed training needs analysis could also be used to look strategically with these institutions at the recruitment of appropriate numbers of suitably qualified staff to meet the needs of children's palliative care services across England.

9.  Financing, including the adequacy of NHS and Charitable Funding and their respective contributions and boundaries

  At present children's hospice services in England receive on average just over 5% of their income from statutory funding. The Government's message over the last couple of years has consistently been that children's hospices should look to secure funding from local commissioners (such as, PCTs and Social Services Departments). The experience of children's hospices, however, is that local commissioners either do not hold children's hospices as a sufficiently high priority or do not have the resources to support children's hospices without diverting funds from other services.

  It seems that the Government is content to point to the New Opportunity Fund's funding of £48 million as the method by which it supports children's hospice services. However, as mentioned previously, this funding (which is for children's palliative care services, not just children's hospices) is time-limited. Little appears to be taking place at either national or local level to ensure the continuity of funding beyond March 2006 to sustain existing and newly developed services.

  More significantly, the same principles, responsibilities, and duties (Treasury rules on full cost recovery, use of charitable funds, etc) set out in detail in the Help the Hospices' submission apply as equally to children's hospice services as to adult services. The Government, however, has seemingly refused to apply joined-up thinking in its approach to children's hospice funding. Indeed, at Help the Hospices annual conference on 18 November 2003, Melanie Johnson, the Minister for Public Health expressed the view that because children's hospice services receive such widespread public support, they do not need Government funding. The Government needs to address this glaring anomaly as a matter of urgency. As a minimum, the Government should extend to children's hospice services the funding discussions it is having with the adult hospice sector. The Association of Children's Hospices and other organisations (such as the Association of Children with Life Threatening and Life Limiting Conditions and Their Families) working alongside Help the Hospices are eager and willing to assist in the development of appropriate funding models. This key issue would also form a core element in our proposed national strategy for children's palliative care.

  It is not only the lack of Government financial support that is of concern, but also the seemingly little regard the Government has of the impact its policies have on the voluntary sector, despite the requirements of the Compact for it to take this fully into account. The financial implication of Agenda for Change is a striking example. The Government has made considerable resources available to the NHS to implement this much needed reform. However, by ignoring its impact on the voluntary sector, it has imposed an equally considerable upward pressure on costs, which many children's hospice services will struggle to find from their own resources.

10.  Impact and effectiveness of Government policy including the National Service Frameworks, The Cancer Plan and NICE recommendations

  The Association of Children's Hospice and its member organisations welcome the development of the National Service Framework (NSF) for children. To avoid the possibility of misunderstanding, this Framework will not serve the same purpose as the national strategy for children's palliative proposed in this submission. Within the NSF for children, the needs of children with life-limiting conditions and their families can be expected to attract the briefest of mentions. This is to be accepted. But the needs of such children and their families must not be overlooked.

  The Cancer Plan and NICE recommendations are virtually exclusively directed at adult services. Within this context, ACH echoes the comments from Help the Hospices that even these initiatives are too narrow in their perspective and focus. By fixing their gaze virtually exclusively on the NHS, they overlook the wealth of experience, knowledge and expertise within the voluntary and charitable sector. Their effect of channelling resources only to these initiatives severely restricts the availability of resources. None of the Government's Cancer Plan funding has come the way of children's hospice services.

  This seeming inability to see the common ground between adult and children's hospice services, and the difficulty with working within a framework other than the NHS, are serious fault lines in the Government's thinking.

  The hospice movement—adult and children's—attracts unprecedented public support. With the availability of such widespread expertise, knowledge, and experience, there can be no stronger reason for the Government and the voluntary and charitable sector to work together in partnership than the synergy that would be released for the benefit of those who need our services. The story of the children's hospice movement demonstrates our commitment to play our part. Our call to the Government is for it to do the same.

CONCLUSION

  This submission is a summary of the key issues which the Association of Children's Hospices considers to be critical to the strategic development and delivery of children's palliative care services, and children's hospice services in particular.

  We would welcome the opportunity to meet the Committee to discuss these issues further. We would particularly like to discuss the proposal for a new Minister for Palliative Care and the development of a national palliative care strategy, and also the need for the development at a national level of clear statutory funding streams to children's hospice services.

February 2004

23   ACT et al 2001, Palliative Care for Young People aged 13-24 years, ACT, Bristol. Back