Oct 7, 2016 - Lives' members such as children's hospices will be asked to contribute £4,000 for a. 3 www.togetherforsho
7 October 2016 Autumn Statement 2016 Representation from Together for Short Lives
About us Together for Short Lives is the UK charity that, together with our members, speaks out for children and young people who are expected to have short lives. Together with everyone who provides care and support to these children and families, we are here to help them have as fulfilling lives as possible and the very best care at the end of life. We can’t change the diagnosis, but we can help children and families make the most of their time together. Children and young people with life-shortening conditions need palliative care from the point at which their condition is diagnosed or recognised - often at birth - until the end of their lives. Families also need care and support throughout the trajectory of their child’s illness, including after they have died. A comprehensive local children’s palliative care service spans health, social care and education. It is a whole-family approach. Together for Short Lives is a membership organisation, which represents members from the voluntary, statutory and private sector children’s palliative care providers. As such, this representation is divided into two distinct sections – policies that impact on families of children with life-shortening conditions and policies that impact on children’s palliative care services. Summary of our representation In the Autumn Statement, we would like the government to: 1. Increase the value of the children’s hospice grant to reflect the fact that demand for this care is increasing and life-shortening conditions are becoming more complex. Without this support, responsibility for care would shift directly to the NHS. (See paragraphs 10-11) 2. re-examine the impact that the new regulatory fees will have on fundraising charities. It should support charities by paying the Fundraising Regulator a subsidising grant to alleviate the financial strain that the new system will cause charities. (See paragraphs 12-17) 3. commit to provide seed-funding to stimulate voluntary sector organisations to provide age and developmentally appropriate services to young people with life-shortening conditions - and which bring about smooth transitions from children’s to adults’ services – this earlier investment will help avoid a ‘cliff edge in care’ and the associated wellbeing costs. (See paragraphs 18-10) 4. Commit to funding for local authorities to enable them to meet their duties under The Regulations for Breaks for Carers of Disabled Children 2011. Furthermore, the Department for Education should monitor spending by each local authority to ensure more equitable short breaks provision for children with life-shortening conditions across England. 14% are not meeting these duties resulting in increased financial and social costs and family breakdown. (See paragraphs 20-25) 5. Extend mobility payment for families of babies and young children under the age of three who depend on bulky medical equipment or who need to stay close to their
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vehicle in case of a medical emergency. Such payments, unfairly, only begin aged 4. (See paragraphs 26-32) 6. Exempt child deaths from the new fees structure. Though this would have minimal financial impact on the new death certification scheme, it would prevent the new fees structure from adding to the enormous financial pressures that families face when their child dies. (See paragraphs 33-37) 7. Allocate funds to make sure that bereaved parents have a right to a period of statutory paid leave following the death of their child. (See paragraphs 38-39) 8. Make sure that there is a sustainable children’s palliative care workforce. To do so, we call on the government to reverse its decision to remove student nursing bursaries and to properly reimburse voluntary sector organisations which deliver placements for nursing students during their training. (See paragraphs 40-42)
Our representation Section A: Investing in children’s palliative care services Saving NHS funding by ensuring equitable, consistent and sustainable statutory funding for charities providing children’s palliative care 1. In 2011, a government-commissioned review of funding arrangements for palliative care found that the lack of a clearly defined funding model has led to a wide variation in the level of state funding provided to services, including children’s hospices.1 The only income that children’s hospices receive which is committed to by NHS England is an annual £11 million grant, which is split between 38 children’s hospices. 2. The number of children and young people with life-shortening conditions is increasing. For example, a 2015 report showed a 50% increase over a ten-year period in the number of children and young people with life-shortening conditions in Scotland; their numbers have risen from 4,334 in 2004 to 6,661 in 2014.2 This is a dramatic rise; if it has been replicated across the UK as a whole, the number of children and young people with life-shortening conditions could be much more than the current estimate of 49,000. 3. Together for Short Lives’ survey of voluntary sector children’s palliative care providers shows that their average charitable expenditure increased by 9.7% in real terms between 2014/15 and 2015/16. This increased spend reflects the growing complexity and demand for children’s palliative care. 4. As the children’s hospice grant remains static at £11 million and children’s hospices face increasing costs in order to support children with life-shortening conditions, the grant is gradually diminishing as a proportion of children’s hospices’ charitable expenditure. 5. Together for Short Lives’ survey of voluntary sector children’s palliative care providers shows that, overall, the state’s contribution to the cost of providing children’s palliative 1
Hughes-Hallett T, Craft A and Davies C (2011). Palliative care funding review - creating a fair and transparent funding system; the final report of the palliative care funding review. Available to download from: bit.ly/XQBIE7. 2 Fraser et al. (2015). Children in Scotland requiring Palliative Care: identifying needs and numbers. Available to download from: http://bit.ly/1Krn2EU
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care in the voluntary sector fell. It was 22% in 2015/16 compared to 23% in 2014/15 and 27% in 2013/14. We believe that funding for VCS children’s palliative care providers is becoming less equitable. 6. The contribution that VCS organisations can expect towards the cost of providing children’s palliative care increasingly reflects a postcode lottery. When taking the NHS children’s hospice grant and funding from CCGs and local authorities into account, the standard deviation in local authorities’ contributions to the cost of providing children’s palliative care in the voluntary sector has risen to 12% in 2015/16 from 10% in 2014/15. The maximum contribution received by a VCS children’s palliative care provider in 2015/16 was over half (53%). The lowest was 2%. 7. Our survey found that over half (59%) of VCS children’s palliative care providers would be forced to reduce their services if the children’s hospice grant was no longer available. Over two thirds (70%) said that they would be most likely to cut short breaks, followed by bereavement support (41%), family support services, complementary therapies and day services/outpatient clinics (all 37%). The proportion stating that short breaks would be the most likely service to be cut has risen from 58% in 2015. 8. Together for Short Lives made a series of freedom of information (FOIs) requests of local authorities and clinical commissioning groups (CCGs) in England during April 2016. The FOIs sought to establish how well these organisations are planning, funding and monitoring care for children with life-shortening and life-limiting conditions3. It was disappointing that, through these requests, we were unable to accurately understand how much local authorities and CCGs spend on children with life-shortening conditions across the country. Although we asked each CCG and local authority how much they spend on short breaks, step-down care, end of life care and transition, very few were able to determine this spending. We call on government to hold CCGs and local authorities to greater account by requiring them to report on the way they plan and fund children’s palliative care. 9. If children’s hospices did not exist, then the cost of care for these children would fall directly to the NHS with additional costs relating to 24/7 support and care and bed use. 10. We ask that the government and NHS England increase the value of the children’s hospice grant to reflect the fact that demand for this care is increasing and lifeshortening conditions are becoming more complex. Without this support, responsibility for care would shift directly to the NHS. Regulatory fees 11. As set out above, voluntary sector children’s palliative care providers face a challenging funding environment. The establishment of the new Fundraising Regulator will lead to increased regulatory fees for each of these charities, which will add to their financial pressures. 12. The new regulatory system will introduce two costs for charities who conduct fundraising activity; the Fundraising Regulator levy and the Fundraising Preference Service subscription fee. As children’s hospices are individual charities, they will each be liable to pay these fees. 13. Under the proposed fundraising Regulator levy bandings, many of Together for Short Lives’ members such as children’s hospices will be asked to contribute £4,000 for a 3
www.togetherforshortlives.org.uk/datamap
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fundraising expenditure of between £2m-5m. This is a large increase for organisations that previously paid a much lower fee to the Fundraising Standards Board. Most children’s palliative care services, including children’s hospice services, are run by individual charities; this means that the total amount contributed to the Fundraising Regulator by voluntary children’s palliative care providers will be far greater than the amount contributed by many of the largest charities - whose overall spend on fundraising far exceeds that of the voluntary children’s palliative care sector. This feels like an unfair settlement. 14. The proposed Fundraising Preference Service subscription cost of £3,000-£4,000 per annum is significant for small to medium sized charities, especially as these charities also face increased regulatory fees following the establishment of the Fundraising Regulator. 15. Given that not all children’s hospices will fall into the £2m-£5m bracket and may pay a lower levy to the regulator, we can conservatively estimate that each charity will pay approximate total of £5,000 in fees. If these are extrapolated out to Together for Short Lives’ more than 60 voluntary sector members who provide children’s palliative care in the UK, they will potentially reduce the amount which they can collectively spend on these key services by over £300,000. The only income that children’s hospices receive which is committed to by NHS England is an annual £11 million grant (see paragraph 1). It is alarming, therefore, that these new fees could account for approximately 3% of this funding. 16. We would like the government to re-examine the impact that the new regulatory fees will have on fundraising charities. It should support charities by paying the Fundraising Regulator a subsidising grant to alleviate the financial strain that the new system will cause charities. Seed-funding to set up age-appropriate services for young people transitioning from children’s to adult’s services – avoiding a cliff edge in care and support 17. Medical advances mean more young people with a range of life-shortening conditions are living into adulthood. There are 56,000 young adults aged between 18 and 40 with life-shortening conditions and this figure continues to grow.4 The transition from the comprehensive care offered by children’s services to unfamiliar adults’ services can be daunting as they have to forge relationships with new agencies and professionals. Furthermore, for many young people with life-shortening conditions, this transition coincides with a rapid decline of their condition and eventual death. As such, they have specific needs which differ from both younger children and older adults, yet there is a lack of age and developmentally-appropriate palliative care services for these young adults. 18. There is a lack of age and developmentally-appropriate palliative care services for young adults with life-limiting conditions; specifically, there is a dearth of services which can offer short breaks to young people with the most complex health needs. This is a market failure, whereby the services available to not match the needs of these young people. The government should intervene to correct this failure and step in where the market cannot deliver, by providing seed funding to stimulate voluntary sector services to provide age and developmentally-appropriate services to this group of young people.
4
Fraser LFK, Miller M, Aldridge J, PA, Parslow RC (2013). Prevalence of life-shortening conditions in young adults in England 2000-2010; final report for Together for Short Lives. Available to download from: http://bit.ly/1z24VQQ
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19. We would like the government to commit to provide seed-funding to stimulate voluntary sector organisations to provide age and developmentally appropriate services to young people with life-shortening conditions - and which bring about smooth transitions from children’s to adults’ services – this earlier investment will help avoid a ‘cliff edge in care’ and the associated wellbeing costs. Section B: Investing in support for families who have a child with a life-shortening condition Building transparency and accountability: Ensuring local authorities meet their legal duties and can increase investment in short breaks for disabled children 20. We were disappointed that the government’s new 2% Council Tax precept that local authorities can levy is to be limited to adult social care. The needs of children with lifeshortening conditions are ignored in this formulation as the extra funding will not be extended to children’s services. With local authorities struggling to cope with rising demand, social care services that families rely on to keep going, including short breaks, will become much more scarce. 21. Research by Together for Short Lives shows that nearly a quarter (23%) of clinical commissioning groups (CCGs) and one in seven (14%) of local authorities do not commission short breaks for children and young people aged 0-25 who have lifeshortening conditions.5 While we are encouraged by the high proportion of local authorities that do, this still means that many local authorities are failing to provide vital short breaks to children and families - potentially contravening their legal duty to provide short breaks for disabled children. 22. Our survey of VCS children’s palliative care providers in England found that local authorities’ contribution to the cost of providing children’s palliative care in the voluntary sector fell significantly by 61% between 2014/15 and 2015/16. This means that local authorities contribute just 1% to the charitable costs incurred by VCS children’s palliative care organisations. This reflects reductions in local government funding; it also makes it all the more disappointing that government has not given councils the power to raise extra funding for children’s social care through council tax as it has done for adults’ care. 23. In December 2010 the government committed £800m in funding for short breaks to make sure local authorities could meet their legal duties under The Regulations for Breaks for Carers of Disabled Children 2011 over the course of the parliament. However, Every Disabled Matters (EDCM) partnership found that 58% of local authorities who responded to their freedom of information requests had cut their short breaks spending during this period, by an average of 15%. This has a direct impact on families - the same survey found that only 9% of respondents to the survey of parent carers agreed or strongly agreed that families with disabled children can access the short breaks they need. We would like the government to repeat the £800m funding and to provide guidance to local authorities on how this funding should be used and ensure that they transparently share how that funding is used. 24. The inequity of support for children with life-shortening conditions in England results in unfairness, whereby a family in one part of the country may be unable to access the short breaks that they need, while others are able to. The government should intervene Together for Short Lives. (2016). Commissioning children’s palliative care in England. Available from: http://www.togetherforshortlives.org.uk/assets/0001/5669/Commissioning_children_s_palliative_care_ in_England_FINAL.pdf 5
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to make sure that local authorities are fulfilling their short breaks duties in order to restore fairness. 25. We ask that the government commits to additional funding to local authorities to fund children’s social care and to enable them to meet their duties under The Regulations for Breaks for Carers of Disabled Children 2011. Furthermore, the Department for Education should monitor spending by each local authority to ensure more equitable short breaks provision for children with life-shortening conditions across England. 14% are not meeting these duties resulting in increased financial and social costs and family breakdown. Addressing unfair discrimination by introducing a new mobility payment for families of babies and young children under the age of three who depend on bulky medical equipment or who need to stay close to their vehicle in case of a medical emergency. 26. The government’s disability living allowance (DLA) benefit recognises that families of disabled children over the age of three may need financial support to access appropriate transport. Families can apply for the DLA ‘mobility component’, available at a higher and lower rate. The principle underpinning DLA is that payments are made to families who incur extra costs as a result of meeting the additional care and/or mobility needs of a disabled child. 27. In setting the lower age limit for entitlement, DWP considered views of medical advisors and independent research that the majority of children could walk at the age of 2½. By the age of 3 it was realistically possible in the majority of cases to make an informed decision as to whether an inability to walk was the result of disability. 28. However, babies and young children under the age of three with life-limiting conditions often depend on ventilators, large equipment or other types of technology to stay alive. This equipment is big and heavy. Some babies and young children have permanent wheelchairs and are not able to use buggies suitable for well children of the same age. These wheelchairs are heavy because of the equipment and they need to be fixed into a vehicle. 29. These additional mobility needs are already recognised in other areas of government policy: children under the age of three who depend upon bulky medical equipment, or need to be near their vehicle in case they need emergency medical treatment are eligible for a blue parking badge. Giving this group of children access to the mobility component would enable their families to access an adapted car. Using a blue badge, families could park their car close by, meaning that they could get their child to a place of safety and care quickly and without delay in an emergency. 30. We therefore call on the government to Extend mobility payment for families of babies and young children under the age of three who depend on bulky medical equipment or who need to stay close to their vehicle in case of a medical emergency. Such payments, unfairly, only begin aged 4. The cost of providing the benefit 31. We propose that the criteria for accessing financial support should be exactly the same as those for children aged 0-3 who can access blue parking badges. Therefore, we calculate the number of children under the age of three who would be eligible for the support to be the same number who currently have a blue parking badge (see table below). We have obtained the number of children aged 0-3 who currently have a blue badge from freedom of information requests from the Department of Transport and the Page 6 of 13
Welsh Government. We made a similar request of the Scottish Government but were advised that this figure was not held centrally and that this would need to be requested from individual local authorities. We have not been able to do this yet. 32. We propose that the value of the grant to Motability is equivalent to the cost of providing the DLA higher rate mobility component to all children under the age of three in England, Scotland and Wales who eligible for a blue parking badge on the basis that are dependent upon bulky medical equipment, or need to be near their vehicle in case they need emergency medical treatment. In England and Wales this would be a cost to DWP of £6.64million per year. We acknowledge that this figure omits the cost of providing access to the scheme in Scotland; we estimate that providing the scheme in England, Scotland and Wales would not exceed £8million per year. Table 1: The number of children that a new scheme would need to apply to and the cost of introducing it Number of children/ cost
Description
2119
Number of children in England under the age of three who are dependent upon bulky medical equipment, or need to be near their vehicle in case they need emergency medical treatment’
104
Number of children in Wales under the age of three who are dependent upon bulky medical equipment, or need to be near their vehicle in case they need emergency medical treatment’
2223
England and Wales total
£
57.45
127,711
Per week cost of extending mobility component to children under the age of three in England and Wales who are dependent upon bulky medical equipment, or need to be near their vehicle in case they need emergency medical treatment’
6,640,990
Per year cost of extending mobility component to children under the age of three in England and Wales who are dependent upon bulky medical equipment, or need to be near their vehicle in case they need emergency medical treatment’
£
£
Higher rate DLA mobility component for children
Case study “Cooper has just turned two and he is 89cm tall and weighs 14kg – he is unable to support himself. He has a tracheostomy and is peg fed so requires equipment to be with him at all times. This includes his suction machine, feed machine, tracheostomy bag and Ambu bag. He also has a specialist wheelchair, which takes up the whole of the boot space of Kelly’s Kia Ceed estate car. Until recently, Kelly had to sedate Cooper with diazepam to enable him to get through a journey as he has scoliosis. Kelly has now managed to get a supportive car seat for Cooper through the charity Newlife but this, in Page 7 of 13
addition to the equipment, means that there is no space in the car for them to take luggage for a trip away from home, or to take their dogs out for a walk with their children. Cooper has a compromised respiratory system and Kelly is concerned about ‘squashing’ him into such a tight space in the vehicle. Kelly is unable to purchase a new, or even second hand wheelchair access vehicle as she has had to give up work to care for Cooper. Cooper is not entitled to the mobility component of the disability living allowance because he is under three years’ old, so the family cannot access financial assistance to get the vehicle that they need to do the things that other families can do, such as short trips away from home.”
Reducing the likelihood of funeral poverty 33. Together for Short Lives supports the principles behind the proposed death certification reforms.6 We are pleased that the new system supports urgent death certification for expected deaths of children in hospitals, so that families can move them home or closer to home – i.e. a children’s hospice. We are pleased that feedback from the pilot sites shows that this urgent certification process is manageable and we urge the Department of Health to maintain this concession. 34. However, we are concerned that the new system as proposed will result in an additional cost for families whose child has died, as they will be liable to pay the medical examiner fee, regardless of whether their child is buried or cremated. 35. Families who provide long-term care for their child suffer enormous financial pressures while their child is alive, including: a lack of opportunity to work; increased household bills; purchasing new equipment.7 36. In addition to this, they face further loss of income when their child has died due to the cessation of benefits, debt repayment, and funeral costs. We believe that the proposed new fee will unfairly add to these pressures. Furthermore, there are fewer than 4,000 child deaths in England8 each year and approximately 200 in Wales9 and this exemption would therefore represent less than 1% of the approximately 500,000 deaths that are registered in England and Wales each year.10 6
Department of Health (2016). Introduction of Medical Examiners and Reforms to Death Certification in England and Wales. Available from: https://www.gov.uk/government/uploads/system/uploads/attachment_data/file/517184/DCR_Consultio n_Document.pdf 7 Together for Short Lives (2016). Introduction of Medical Examiners and Reforms to Death Certification consultation: submission from Together for Short Lives. Available from: http://www.togetherforshortlives.org.uk/assets/0001/5736/Death_certification_reforms_consultation__Together_for_Short_Lives.pdf 8 Department for Education (2016). Child death reviews: year ending 31 March 2016. Available from: https://www.gov.uk/government/statistics/child-death-reviews-year-ending-31-march-2016 9 Reilly, R., Heatman, B. (2015). Child death review programme: Annual report July 2015. Available from: https://www.childdeathreview.org/wpcontent/uploads/Publications/WalesCDRAnnualReportJuly2015.pdf 10 ONS (2015). Deaths Registered in England and Wales: 2014. Available from: http://www.ons.gov.uk/peoplepopulationandcommunity/birthsdeathsandmarriages/deaths/bulletins/de athsregistrationsummarytables/2015-07-15
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37. We urge the government to exempt child deaths from the new fees structure. Though this would have minimal financial impact on the new death certification scheme, it would prevent the new fees structure from adding to the enormous financial pressures that families face when their child dies. Supporting parental bereavement leave 38. The Parental Bereavement Leave (Statutory Entitlement) Bill 2016-17 was introduced by Will Quince MP on 9 September 2016 and is due to receive its second reading on 28 October 2016. This Bill would provide bereaved parents with two weeks’ statutory paid leave following the death of their child. There is currently no statutory paid leave provision for bereaved parents. 39. Together for Short Lives supports the Parental Bereavement Leave (Statutory Entitlement) Bill 2016-17. We would like government to allocate funds to make sure that bereaved parents have a right to a period of statutory paid leave following the death of their child. Ensuring a sustainable children’s palliative care nursing workforce 40. We are concerned that the removal of student bursaries for nurses, midwives and allied health professionals could have an adverse effect on the number of students choosing to study these courses. Although under the current UK government proposals students would still have access to funding through student loans, we share the concern of the Royal College of Nursing that potential students may be put off by the prospect of accruing more long-term debt. We call on the government to reverse the decision to remove student bursaries. 41. Our research shows that the voluntary children’s palliative care sector provided placements for over 600 nursing students during 2014-15. Most of the students were in the second or third year of their training – but one third of organisations said they supported first year students too. The proposed increase in nurse training places offers an opportunity to further develop the links between universities that provide nurse training and voluntary organisations that deliver children’s palliative care. However, currently 40% of voluntary sector children’s palliative care providers receive no funding for providing these placements, while others receive approximately £80 per week. These organisations provide valuable experience to trainee nurses. 42. We would like the government to make sure that there is a sustainable children’s palliative care workforce. To do so, we call on the government to reverse its decision to remove student nursing bursaries and to properly reimburse voluntary sector organisations which deliver placements for nursing students during their training.
For more information, please contact:
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Shaun Walsh External Director of External Affairs 07506 211 765
[email protected]
Patrick McKenna Public Affairs and Policy Officer 0117 989 7820 07964 470 879
[email protected]
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Appendix one: life-shortening conditions in children and young people
Life-shortening conditions are those for which there is no reasonable hope of cure and from which people are expected to die.
Life-shortening conditions or episodes are those for which curative treatment may be feasible but can fail.
People with life-shortening conditions need continuing palliative care throughout the trajectory of their illness.
Life-shortening conditions in children and young people can be defined by the following four categories11: 1. Life-shortening conditions for which curative treatment may be feasible but can fail such as cancer or congenital heart disease. 2. Conditions where premature death is inevitable but where there may be prolonged periods where the child is well - such as Duchenne muscular dystrophy. 3. Progressive conditions without curative treatment options, such as Batten disease. 4. Irreversible but non-progressive conditions causing severe disability, leading to susceptibility to health complications and likelihood of premature death - such as severe brain injury.
11
Together for Short Lives (2013). A Core Care Pathway for Children with Life-shortening Conditions. Available to download from: bit.ly/18Vd3JV.
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Appendix two: what is children’s palliative care? Children and young people with life-shortening conditions need palliative care from the point at which their condition is diagnosed or recognised - often at birth - until the end of their lives. Families also need care and support throughout the trajectory of their child’s illness, including after they have died. Children’s palliative care is different to palliative care for adults. Whereas the majority of adults only need palliative care at the end of their lives, children with life-shortening conditions require palliative care over a much longer period, often from birth as they live with the instability of their condition. 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-shortening conditions often have complex disabilities, while the range of health conditions which results in children requiring children’s palliative care is more diverse. Children’s palliative care is an approach to care in conjunction with curative treatments. Demand is increasing for children’s palliative care. It is estimated that more than 40,000 children (0–19 years) were living with a life-shortening or life-shortening condition in England in 2009/10 – compared to 30,000 in 2000/01. The highest rate of increase during this period was among those aged 16-19 years, who now account for 4,000, or one in ten, of 0-19-yearolds who need palliative care12. This is due to increasing life expectancy and improving quality of life resulting from advances in treatment and support. Children’s palliative care services are also experiencing an increase in demand for palliative care for very young babies. Palliative care for children and young people should13:
meet their physical, emotional, social and spiritual needs
aim to enhance their quality of life and support their family in coming to terms with their condition and the care they will need
help families understand how the young person’s condition and their needs may change over time
include managing distressing symptoms, providing short breaks and care through death and bereavement
be provided in ways which are appropriate to their age and stage of development; this means care provided in age and developmentally appropriate settings by professionals who are skilled in working with them.
A comprehensive local children’s palliative care service spans health, social care and education. Therefore, joint commissioning is vital. It is a whole-family approach and has the following characteristics:
It is flexible and focused on children, their parents, their carers and their siblings.
It is accessible 24 hours a day, seven days a week, 365 days a year – from diagnosis or recognition that a condition will shorten a child’s life, to bereavement.
12
Fraser LK, Parslow RC, McKinney PA, Miller M, Aldridge JM, Hain R, Norman P (2012) Lifeshortening conditions in children and young people in the United Kingdom; final report for Together for Short Lives. 13 Together for Short Lives (2013). Definitions. Available to download from: bit.ly/Z34i5s.
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It supports and enables children and families to choose the type, location and the provider of the care they receive and allows them to change their mind.
It is not age, time or diagnosis specific – 15% of children who need children’s palliative care have no definitive underlying diagnosis14.
It is multi-disciplinary and multi-agency.
It is accessible to people of different faiths, culture, ethnicity and locations.
It includes pre and post-bereavement support for families.
It is able to manage symptoms.
It supports parents in caring for their children according to their needs and wishes.
It supports and enables smooth transitions for young people with life-shortening conditions who move from children’s to adult’s services.
Palliative care should be provided in ways which are appropriate to a child or young person’s age and development; this means care provided in age and developmentally appropriate settings by professionals who are skilled in working with them.
14
NHS England (2013). E03/S/h - 2013/14 NHS standard contract for paediatric medicine: palliative care particulars, schedule 2 – the services, A - service specifications. Available to download from: bit.ly/11yjtVS.
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