ACT - The Association for Children's Palliative Care

Following ACT's success in securing a major review of the funding of the children's palliative care sector, ACT and ACH have now submitted our joint response to the Department of Health calling for the prioritisation of children's palliative care and sustainable funding to ensure that these services continue to develop to meet the needs of life-limited or life-threatened children and their families.

The review is being led by the Department of Health, but will also include the Department for Education and Skills.  It aims to provide evidence of what works in terms of effective funding mechanisms. 

Thanks to all of our members and partners who helped inform our submission by filling the questionnaire we sent to you last autumn. Please read on to see the detailed joint ACT/ACH submission, which includes our key recommendations.  We will keep you informed of progress and associated campaigning activities as soon as we have had feedback from the Department of Health.

Independent Review of the long-term sustainability of children’s palliative care  

Joint submission from the Association of Children’s Hospices (ACH) and the Association for Children’s Palliative Care (ACT)

      December 2006

This submission has been jointly drafted by ACT (the voice for all providers of all children’s palliative care) and ACH (the voice of children’s hospice services).  We welcome the opportunity to make this joint submission.

Children's palliative care has come a long way in a short time but greater priority and sustainable funding is needed to ensure that these services continue to develop to meet the needs of life-limited or life-threatened children and families. 

1.      INTRODUCTION

1.1 The need

It is estimated that there are some 25,000 families in the UK coping with the morbidity of a child, adolescent or young adult.  A significant and growing proportion of these children have a severe disability. 

 In any one year:

·        About 3,400 children are estimated to die

·        Some 80,000–100,000 family members are affected and will require palliative care and support.
 

The needs of children, young people and their families are likely to be many, varied and complex. Many clinicians report that children and young people requiring palliative care are "sicker for longer".

Parents often carry out much of the care themselves, and  need effective, proactive support; help with practical tasks in the home; complex nursing care in the home; the opportunity for medically-supported short breaks; emotional, psychosocial, spiritual and bereavement support; assistance with information, symptom control and pain relief.

These may be provided at home from specialist children’s palliative care teams, in hospitals, via children’s hospices (in the hospice or at home) or from other voluntary sector providers. But choices are limited and availability of services is inequitable. 

1.2 Service provision

Universal and specialist support to children and families is provided by a web of service providers within the statutory and voluntary sectors. These are summarised in Appendix I to this report.

The challenge is to ensure that there is appropriate integration and availability of these services.  The ACT Care Pathway is one way to enable children and their families to be linked with community services, hospital-based services, social services, education and the voluntary sector in one joined-up planning process.

Children's hospices find that having a relationship with a PCT greatly benefits the planning and delivery of services (ACH research, November 2006). Other benefits include the sharing of best practice, better assessment and referral pathways.   However there are significant integration issues.

Services have identified numerous barriers to working with local commissioners. These included:
 

·             Paediatric palliative care targets are not a high enough priority within the PCT;

·             PCTs say they have no budget

·             PCTs are unwilling to pay for a hospice service that has been free to date;

·             Lack of continuity of senior staff, and new relationships take time to develop;

·             No lead responsibility within the SHA or PCT for children’s palliative care;

·             More than one PCT to liaise with;

·             No process or pathway to direct or inform partnership working;

·             Delays in rearranging meetings;

·             No response to invitations or correspondence; and

·             No named contact.

1.3 The Policy Framework

There have been a number of important policy initiatives (some still ongoing) that have addressed children’s palliative care issues.  A summary of recent initiatives is contained in Appendix II to this report.

The following common themes are evident:
 

·        Funding issues are rarely addressed directly or adequately

·        The need to link services – e.g. transition

·        Overlaps with other important sectors e.g. disabled children, chronic sickness

The important work done to date highlights the need to have an integrated approach covering relevant sectors and linking providers in appropriate groupings, both regionally and locally.

2. SHARED VISION

2.1 A good life and a good death

ACT and ACH share a long-term vision where every life-threatened child or young person in the UK, regardless of race, religion, age or where they live, has access to the sustainable, holistic, family-centred and high quality palliative care and support that they need. We are driven by our desire to help children and their families achieve a “good” life and a “good” death[1].  A good death not only benefits the ill child or young person, but also their loved ones and carers.

Physical, emotional and mental pain must be reduced and the obstacles removed that prevent the child and their family from leading an “ordinary life”.

2.2  The development of outcome standards

To ensure that children and families receive good quality, equitable palliative care services, it is proposed that outcome standards are developed for implementation at local and regional level.   These standards should incorporate the following:
 

·        Providing an early assessment, leading to specialist service provision;

·        Enabling families to access the right information at the right time;

·        Having a key worker to guide families through the maze;

·        Enabling children to lead as ‘normal’ lives as possible;

·        Enabling families to access childcare and short breaks with appropriate medical and nursing input;

·        Recognising that children are different from adults;

·        Ensuring that children and their families have choice about what care is provided and where (including place of death);

·        Coordination of services at home where this is the chosen place of care, including provision of specialist equipment;

·        Effective management of symptoms to reduce pain, including radiotherapy and chemotherapy;

·        Access to 24-hour specialist advice and expertise;

·        Giving all family members emotional, spiritual and practical support.

These outcome standards would mean:

·        As far as geographically possible, children’s hospices and hospice-at-home services will provide an important choice for the place of care; 

·        Children and families can call on specialist teams in their community, working in cooperation with the primary care team, social services and education;

·        For some specific diseases, such as cancer, specialist outreach services will be available;

·        GPs will be kept fully informed and supported with the specialist advice they may require to be effective, especially in relation to end-of-life care;

·        The ACT Care Pathway approach will link life-limited children and their families with community services, hospital-based services, social services, education and the voluntary sector in one joined-up planning process to ensure continuity of care and promote partnership working;

·        The additional needs of life-limited children and their families will be taken fully into account by universal services, e.g. education and health services; and

·        Bereavement support will be available to children and their families, from the time of diagnosis to end-of-life care and beyond.

2.3 Providing real choices

Our vision is one of well-coordinated services and well-informed families able to exercise true choice. This means:

- Choice of place of care

- Choice of place of death

- Choice of bereavement care and support

2.4 A proficient workforce

We believe that all children with life-limiting conditions and their families should have access to specialist medical, social and psychological support from professionals trained in children’s palliative care. 

3.     MODELS OF GOOD PRACTICE

There are a number of models of care which illustrate how a whole system of support to the child and family can be based on choice and access.  Some examples are detailed below.  A common factor is that they show the benefits of locally based voluntary and statutory bodies working in partnership.

3.1  Multi-disciplinary teams

Some areas have developed teams to deliver community-based care which include children’s community nurses, paediatricians, children’s hospices, social workers, psychologists and therapists.

Service example

• The Hamlet Centre Trust in Norwich provides an example of multi-agency collaborative working, with funding coming from the LA, PCTs, Central Government (SureStart and the Carers’ Grant) and voluntary income.  The Trust supports children and young people with disabilities and/or life-limiting conditions.  Services include a mobile toy library and sensory room, a special support group for parents and pre-school children from East Anglia’s Children’s Hospice in Quidenham, and specialist respite play schemes.  All events have a nurse in attendance, funded by Norfolk PCT.  The Centre also supports young people with basic education, independent living, personal development and social opportunities.  

3.2 Specialist nurses

Clinical Nurse Specialists based in specialised service centres supporting a particular life-limiting condition can work effectively with families through close liaison and coordinated working with local community children’s nursing teams.  Outreach nurse specialists may work from a tertiary or shared care centre.

Service examples

DebRA (the national charity working on behalf of people with Epidermolysis Bullosa) nurses work closely with NHS colleagues in specialist hospitals, in the community alongside community nurses, in patients’ homes and with the care teams at children's hospices. 

• In Brighton, a CLIC Sargent nurse works in an outreach capacity from the children's hospital in partnership with the local community children’s nursing team and with the Demelza-James community team.  [NB: this CLIC post is currently under threat due to financial cutbacks).

3.3  Medical support

Medical backup comes from a variety of services, including paediatric oncologists, general paediatricians with a special interest in palliative care, general practitioners, and sometimes adult or paediatric palliative care consultants.  It is essential to ensure that GPs are kept informed about the care of their patients and enabled to support them.

Service examples

• CHASE Hospice Care for Children has developed service level agreements with a local GP practice to ensure continuity of care and advice for children receiving care at Christopher's children’s hospice.

• Great Ormond Street Hospital offers specialist palliative care/symptom management services locally and nationally and has developed a service level agreement with Richard House Children's Hospice to provide care and specialist advice to children and young people accessing the hospice services.

3.4  Paediatricians

Paediatricians with an interest in disability and long-term conditions are increasingly involved in the local clinical management of children with life-limiting conditions, supporting the primary care team for whom the child’s condition may be rare and unfamiliar.

Service example

• The Lifetime service in Bath provides needs-led support to families in the setting of their choice and links closely to Jessie May Trust.

3.5  Siblings

Services to support the siblings of children and young people who are dying are an important part of supporting the whole family.

Service example

• Rainbow Trust and Richard House Children's Hospice are piloting working in partnership in Tower Hamlets, London to provide care to the whole family, including siblings, in a range of settings including the child's home and over a period of time which is dependent on the family's needs.
  
  

4       FUNDING ISSUES 

Children’s palliative care services have often been developed from a financial base of what is affordable rather than what is needed.  The sector is characterised by a reliance on voluntary funding.  A more strategic and long-term approach to funding is required reflecting the long-term palliative care that the majority of life limited children require.

4.1  Children’s hospice services

Current situation

It costs an average of £2.5 million to run a children’s hospice service each year.  Before the recent £27 million government cash injection, children’s hospices in England received an average of just 3.6% of their income from statutory sources.  Nearly half of all children’s hospices (16) received no statutory funding. As a result, children’s hospices are dependent on fundraising for over 80% of their day-to-day needs. This situation contrasts sharply with adult hospices, which receive, on average, about 36% from statutory funding and are less reliant on fundraising.

Many children’s hospices have benefited from lottery funding, notably BIG lottery funding for 2003-2006.  At best, this type of funding defers long-term funding issues to a later date.  At worst, it encourages the establishment of services that cannot be sustained.  For example it was anticipated that PCTs would fund services initially funded by the BIG lottery.  In practice this has not happened.  The £27 million award, whilst welcome, is only a short-term cure.

Reasons for the low level of statutory funding of children’s hospices include:

• Lack of central guidance on the level of statutory contributions. There are currently no guidelines for PCTs nor LAs on the allocation of resources for palliative care;

• No agreed basis for funding.  Research conducted by ACH in November 2006 indicated a variety of bases PCTs use for calculating funding.  These include: per night, per child basis; named-patient basis for complex care packages; cost per case basis; annual Service Level Agreements; or one off grants;
  
  
•  Difficulty in obtaining funding from other government agencies (such as the DfES);
  
  
• The large number of PCTs that any one children’s hospice service may have to negotiate with; and;
  
  
• The fact that children’s hospice service may overlap PCT boundaries and PCTs may not be prepared to negotiate with more than one hospice.

   

Why fund children’s hospices?

Children’s hospices provide a variety of services that alleviate the demand for services (and therefore reduce costs) elsewhere in the public sector.  Some of these services could be classified as direct, with the benefit to the public sector being more easily measured e.g. reducing costs for the NHS and other departments.

Examples of direct services include: medical services; end of life care, including hospice at home.

Other services could be classified as indirect, with the benefit to the public sector being harder to measure (impact on availability to work, loss of earnings, reduced time off for sickness/stress etc.).  

Examples of indirect services include respite breaks and bereavement services. Respite breaks save parents having to get time off (or give up) work, reduce illness from exhaustion and help prevent family break-up.  Bereavement counselling helps avoid further family crises.

Children’s hospices believe that they should be:

·        Reimbursed on an agreed basis for costs of direct services that they provide;

·        Receiving a contribution on an agreed basis towards the costs of indirect services that they provide.

The definition and identification of costs needs further investigation.  There is some concern that children’s hospices are expensive. Within the time constraints of this review there is not time for a comprehensive cost benefit analysis to be completed, so this is a matter of conjecture. We believe that an independent study should be completed as a matter of urgency.

4.2 Statutory and wider voluntary sector

What does it cost?

 A DH exercise in June 2006 identified children's palliative care costs in the non-hospice sector as £1m accounting for the costs of running the palliative care teams at Alder Hey and Great Ormond Street Children's Hospitals.  We consider this to be a gross underestimate of costs. 

Nursing costs alone would account for over £20m expenditure.  We know that currently there are 535 nurses working in children's palliative care and 126 Paediatric Oncology Outreach Nurses (assuming their average salary to be £30k) their salary costs alone would be £20m - this does not take into account the other nurses working in the wider NHS who provide occasional support e.g. within hospitals or school nurses supporting children in education settings.  If we assume that every child with palliative care needs has one hour's support from their school nurse and their family has just one hour's visit with a health visitor per year, this would cost a further £1m.

The costs of medical care, psycho-social and therapeutic support and the contribution from the wider voluntary sector also need to be added to this funding picture. This is difficult to quantify and beyond the scope of this submission.  New Philanthropy Capital’s report, Valuing Short Lives (2005) estimated that the total cost of providing children’s palliative care, outside children’s hospices, was £80.2 million, with only £19.3million (24%) coming from statutory sources.

The current funding situation

The greatest investment in children’s palliative care services was made through a 3-year funding stream from the Big Lottery Fund (BIG), from 2003-2006.  This provided funding for 24 children’s hospices, 64 community teams and 31 bereavement services.  However, a failure by many local PCTs to pick up the funding at the end of the three years has meant that many of these services now face closure.  The difficulty is that many of the services wholly or partly funded by BIG have no other source of income available to them.

The BIG programme led to many new developments and real improvements in children’s palliative care but these are now under serious threat. In addition, the eight Diana Children’s Community Nursing teams in England and other national providers of children’s palliative care, such as the Rainbow Trust, are facing a severe financial crisis.

In January 2006, a snapshot survey undertaken by ACT of the financial security of the BIG-funded teams revealed that of the 104 respondents less than ten per cent felt that their funding was secure.  Nine respondents were children’s hospices who were relying on their own fundraising to keep services running. 

Seven months on, in August 2006, a further ACT snapshot confirmed these fears, with cutbacks now expected across the board.  Of the 44 respondents:

·        15 were making staff redundancies;

·        27 had put in place a freeze on recruitment;

·        25 had been forced to put restrictions on the types of the services offered; and

·        13 had introduced a waiting list.

As well as in the cases cited above, major cutbacks are affecting children's palliative services in Hertfordshire, Coventry & Warwickshire, Staffordshire, Nottingham, Brighton, Bromley, North Yorkshire, Teeside and Leicestershire. 

The current situation has a major impact on families in terms of the uncertainty of provision. 

5. RECOMMENDATIONS

The sustainability of palliative care is not just a question of additional funding. We accept that the review is also about the better use and targeting of existing resources. Considerable benefits can be achieved by ensuring that public and private sector, including the voluntary sector work more closely together, both strategically and operationally.

Our recommendations are therefore grouped under the following headings:

·        Organisation and Planning

·        Workforce issues

·        Funding

5.1 Organisation and Planning

•  Development of a National Strategy for children’s palliative care

The national strategy needs to cover the palliative care needs of the entire sector, including disabled children and children with complex needs and be embodied in a Public Service Agreement (PSA) with appropriate targets. 

We urge the review to take into full consideration the report and recommendations of the parliamentary hearings on services for disabled children, and to note where the recommendations need to be enhanced to meet the additional needs of life-limited children.

•  Appointment of children’s palliative care partnership co-ordinators

Regional palliative care partnership co-ordinators are required to develop strong partnerships amongst all users, providers and commissioners of children’s hospice and palliative care services

•  Strengthened commissioning arrangements with Local Authorities and Health Services

Specific recommendations include:

A designated lead for children with palliative care needs within the SHA and Local Authority Joint strategic planning between the SHA and the Local Authority Pooled health and social services budgets for disabled children including those with palliative care needs A joint assessment process for children with palliative care needs

• Development of regional and local networks

Specific recommendations include:

Development of regional palliative care networks between service providers, users and health & social service commissioners with the outcome of informing strategic planning and commissioning of services

Development of local networks at an operational level across several PCTs with the outcome of  informing and engaging with local commissioners to assess, plan and implement local services

• Development of local targets

The development of outcome targets for inspection by the joint inspection body to ensure national delivery of Standard 8 of the National Service Framework for Children.

• Development of strategic and individual assessment frameworks

An agreed framework for joint strategic assessment between Local Authorities, SHA/PCT and local partnerships using a care pathway approach from diagnosis through to end of life care and bereavement with the outcome of facilitating robust and equitable planning and needs assessment

In line with the Common Assessment Framework develop an individual specialist needs assessment tool to ensure equitable assessment of the needs of children and families 

• Completion of a comprehensive cost benefit analysis of palliative care services

As a matter of principle we believe that the palliative care sector should be compensated for services that it delivers.  The completion of an independent review of the costs and benefits is an essential prerequisite to inform the development of services.

• Regular reviews of progress in implementing recommendations

Both ACT and ACH recognise the importance of this review to establishing equitable and appropriate long-term funding for children’s palliative care services.  We believe that progress should be reviewed regularly and the results published every three years.

5.2 Funding

• Funding to implement  the Organisation and Planning recommendations

Implementation of the Organisation and Planning recommendations is essential to ensure the long-term effective and efficient targeting of children’s palliative care resources.  Funding should also include training and development to enable service providers, users and health & social service commissioners to take maximum advantage of the new environment.

• Funding to complete ACT/ACH mapping exercise

ACT and ACH are currently working on a major joint project to determine what and where the service gaps are in children’s palliative care.  The project, which began in spring 2006, will run over five years.   The first three years of the project has been funded by the True Colours Trust.  Funding of £620k for the final two years is required to ensure an accurate national picture of gaps in service provision.

• Establishment of agreed bases for funding of Children’s Hospices, other voluntary organisations  and the wider palliative care sector

This would include the definition of services (direct and indirect) that should be funded by statutory sources.  We believe that it would also be helpful for the review team to set target sustainable funding levels (measured either in absolute or percentage terms) to which the sector might aspire over time as a way of monitoring the success or otherwise of this review.

• Funding for Disabled Children’s Short Breaks Bill

We urge the government to make time for the Disabled Children’s Short Breaks Bill to become law and for its funding to ensure that life-limited children and their families are able to get the short breaks they so desperately need.

• Funding for research

Support further research in the field of children’s palliative care and in particular the identification / development of measures to assess outcomes of effective palliative care services for children.

5.3 Workforce issues

• Address workforce issues to improve recruitment, retention and expertise of staff working in all sectors of children’s palliative care.

• It is imperative that there is development of accessible Community Children’s Nursing Teams with availability of clinical expertise in children’s palliative care

   APPENDIX I

SOURCES OF CURRENT PROVISION

There is a complex range of services within the statutory and voluntary sector, providing both universal and specialist support to children and families. In addition to hands-on clinical care, specialist, flexible emotional, psychological, practical and spiritual support needs to be provided consistently from diagnosis throughout the illness.

The challenge is to ensure that there is appropriate integration of these services.  The ACT Care Pathway is one way to enable children and their families to be linked with community services, hospital-based services, social services, education and the voluntary sector in one joined-up planning process.  

1. Statutory providers

·        Specialist services

In the statutory sector, children’s palliative care is provided through health, social services and education.  Specialist services often offer a variety of support e.g. nursing care, symptom control, practical help in the home, emotional and bereavement support.    This support is provided by community-based children’s palliative care teams as well as hospital outreach and inpatient services.  The major problems are as follows:

·             Uneven distribution of specialist children's palliative care provision.  Some areas have well developed networks with relatively well-coordinated provision, whilst other areas rely on adult service providers or generic children’s services 

·             Disparity between the services provided for children with different conditions:  For example a child with cancer will receive a very different package of care to a child with Duchenne muscular dystrophy. 

·             Universal services

All children and young people with palliative care needs are likely to be known to universal services for children.  The needs include children’s community nursing, GPs, community paediatricians and education services and are integral to the total package of care for life-limited children/young people and their families. 

Community Children's Nursing (CCN) services are the bedrock of children's palliative care provided within the community, currently these services are not universally available 24hrs per day and many are under pressure.

Problems with universal services include the following:

·             Inability to deliver the high level of specialist, flexible, accessible and joined-up support that families need. For example, short breaks provided by social services are not always available due to difficulties  providing specialist medical or nursing input;

·              Lack of accurate information to provide to  families on what specialist support is available

2. Children’s hospice services

Children’s hospices in the UK have played a major role in the development of children’s palliative care services. The first children’s hospice opened in 1982 and there are now 34 operational services in England alone. They offer “whole life care” – not just end- of- life care – involving flexible long-term provision to the whole family in partnership with statutory agencies.

Children’s hospices supported 3,908 children in 2005-6 (ACH annual survey), plus many thousands more siblings, parents, other relatives and bereaved families.

Children’s hospice services include children’s palliative care, specialist respite care, terminal and emergency care, 24-hour telephone support, practical help, advice and information and bereavement support for all family members. Services are provided in the hospice or at home, fitting in with the with the White Paper Your Health, Your Care, Your Say, which stresses patient choice.

It is also worth noting that children’s hospice services play a significant role in the training and development of nurses through student placements, physiotherapy placements and other training for professionals (including doctors and other NHS staff). These are generally provided free of charge.

Networking

Children’s hospice services work alongside and in partnership with their statutory and voluntary sector colleagues, providing a pathway of care for children and their families. ACH’s 2005-6 annual data collection survey shows that over three quarters of children’s hospice services in England are part of a children's palliative care network. The same analysis shows that all services work in partnership with some form of community partnership team. 

Service example

• In the Chilterns district of Hertfordshire and Buckinghamshire, Iain Rennie Hospice at Home works alongside a multitude of providers – from neighbouring children’s hospice services, NHS paediatric services and other community teams and professionals – to ensure the provision of individualised, seamless care and support to children and families.

   

Planning

To date, the planning and establishment of children’s hospices has tended to develop in an ad hoc way, leading a high concentration of services in some areas and lack of provision in other geographic areas. ACH has become increasingly concerned about positively influencing the planning and development of future services. The Department of Health has been supportive and sponsored a Toolkit for those thinking of setting up a new children’s hospice or extending an existing service. In order to influence the strategic planning of children’s hospices, ACH has developed – with the support of the DH - a Toolkit for those thinking setting up a children’s hospice or extending an existing service.

Outreach

Diverse communities, such as minority ethnic communities, asylum seekers and socially deprived families, may find it hard to access children’s hospices for cultural reasons.  Some, for example, have problems with the concept of a short break in which children are cared for by people outside the family. 

Childrens Palliative Care Services operating in areas with diverse communities such as those from BME backgrounds need to focus on providing culturally acceptable models of care. In particular they may have to invest in, for example, translation and interpretation services in order to provide information and build the confidence of these families in the services available.

Service examples

• Rainbows Children’s Hospice in Loughborough and Acorns in the Midlands have appointed community workers to help build the capacity of ethnic minority families to engage with the hospice services. Acorns has also published a series of booklets on enhancing the quality of care for Sikh, Hindu, Muslim and Christian families.

3. Other voluntary providers

Alongside children’s hospices sits a range of voluntary sector provision which includes:  charities that provide short breaks and a range of support in the family home (e.g. the Rainbow Trust or Jessie May Trust); charities that jointly fund posts for specific conditions, which have been instrumental in developing the expertise within the sector (e.g. CLIC Sargent); charities that provide education and rehabilitation support (e.g. the Children’s Trust); and bereavement charities (e.g. Child Death Helpline). 

Service example

• Innovative hospices and other charities work together to provide complementary services.  In a six-month pilot from January 2007, Richard House and the Rainbow Trust Children’s Charity will reach out to families in Tower Hamlets who have been referred to Richard House but have not taken up the service.  The aim is to give all children and families coordinated and equal access to the best possible care in a choice of locations (home, hospice).  This will include respite at home, whole-family breaks at Rainbow House, transport to Richard House and/or other hospital appointments, support and advocacy at hospital appointments, an end-of-life care package, sibling support and home-based bereavement care (using Rainbow Trust family support workers). Richard House aims to fund the service, including out-of-hours nursing cover, from BLF monies that remain available until Sept 2007.

APPENDIX II

RECENT POLICY INITIATIVES

The NSF For Children, Young People & Maternity Services (2004)

The National Service Framework for Children provided a real policy direction for children’s palliative care services, but this was accompanied neither by funding to develop services to achieve the standard nor by specific targets to ensure prioritisation of issues at local levels.

Our Health, Our Care, Our Say (2005)

The White Paper was welcomed by the children’s palliative care sector with its focus on enabling families to be cared for closer to home.  But with no funding attached, both generic and specialist children’s community services are struggling to secure funding from their local PCTs.

DH Guidance Document on Commissioning Children's Palliative Care Services (2004)

The Department of Health Guidance was a useful document in putting children’s palliative care on the map for commissioners. However, we have some reservations about the commissioning model being suggested as it did not take into account the fact that much specialist children’s palliative care was being provided in the community by specialist children’s palliative care teams. All of children’s palliative care should be commissioned at SHA level.

Disabled children’s review (2006)

HM Treasury and the Department for Education and Skills are currently undertaking a joint review of disabled children’s services, the outcomes of which will be very relevant to children’s palliative care services.  If the Disability Discrimination Act (1995) definition of disability is used[2], then all children with palliative care needs may be classed as having a disability.  Alongside this, ACT and ACH members report that a highly very significant and growing proportion of children they support have a severe disability. 

Children’s palliative care review (2006)

This submission to the children’s palliative care review focuses on the additional support that life-limited children and their families need to access universal services.  Over and above the needs of all disabled children and their families, children and young people with life-limiting conditions have additional medical and emotional needs, such as for example for specialist symptom management, building a good memory base, bereavement support and the development of clinical expertise to deliver appropriate services.

Interface with adult palliative care

The government is currently undertaking significant work on adult end of life care, including the Gold Standards Framework and Preferred Place of Care. We believe that a parallel but distinct and separate piece of work should be undertaken for children.   However we believe there is scope for joint consideration to be given to meet the end of life needs of young people who are in transition between children’s and adult services.  Palliative care for children and young people is distinct from adults and special in many ways. Children should always be treated by professionals trained in paediatrics.