Transforming the lives of children
with life-shortening conditions:
policy priorities for the next
Welsh Government
March 2016
Transforming the lives of children with life-shortening conditions: policy priorities for the next
Welsh Government
Contents
1.
2.
3.
4.
5.
6.
Introduction
Eight Manifesto Asks
A family’s view
A professional’s view
About Together for Short Lives, Tŷ Hafan and Hope House
About Children and Young People with Life Shortening Conditions
Introduction
The next Welsh Government has a vital opportunity to transform the lives of the 1,000 children and
young people in Wales with serious, life-shortening conditions who are unlikely to reach adulthood.
Although their number is small, the needs of these children are highly complex. Some will have
conditions, such as cancer and muscular dystrophy, which are relatively well known to us. Some will
have conditions which are so rare that they do not yet have a name. All will need ongoing children’s
palliative care from the point at which their condition is recognised until the end of their lives. They
and their families need regular short breaks to help them get through the often gruelling routine of
appointments, assessments and, in many cases, round the clock care, day and night. Young people
with life-shortening conditions should receive services which are appropriate to their age and
developmental stage - and experience smooth and a well-planned transition to adulthood. Ultimately,
these children and young people will need care at the end of their lives. Their families will need
ongoing bereavement support before, during and after their child’s death.
A number of individuals and organisations provide this care in Wales: acute hospitals; community
nursing teams; our children’s hospices Tŷ Hafan and Hope House; specialist services and social care
teams to name but a few. All need to be available to support families when and where they need it,
including at evenings and weekends. All need fair and sustainable state funding. And all need to
provide joined-up care which centres on the child and their family.
We recognise that we are not starting from square one in trying to improve the lives of these
children, young people and families; excellent progress is already being made in the work to
implement the recommendations made by Tŷ Hafan and the University of South Wales in the
report ‘Palliative Care for Children and Young People in Wales: Meeting Future Needs’ 1. The
commitments we ask parties to make in this document are consistent with the report’s
recommendations and would help realise them in the coming Assembly term.
We also recognise the significant fiscal challenge facing the next Welsh Government. We strongly
believe that the commitments we ask for here will not only transform the lives of children, young
people and families - but will also help ministers to prevent more unplanned and unnecessary
emergency admissions to hospital which result from poorly planned and co-ordinated services for
seriously ill children.
Time is short for these children and young people. Many will not be alive when people of Wales next
go to the polls to elect their Assembly. It is vital that all the parties contesting these elections makes
1
Skone et al. (2015). Palliative Care for Children and Young People in Wales: Meeting Future Needs.
Available to download from: http://bit.ly/1ONeuyV
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the commitments we ask for here - and work with us, the Welsh children’s palliative care sector - to
make better outcomes a reality for children and young people with life-shortening conditions.
This document has been developed in partnership with members of the children’s palliative
care sector in Wales.
Barbara Gelb OBE
Chief Executive of Together for Short Lives
Jeremy Jackson
Deputy Chief Executive of Tŷ Hafan
Andy Goldsmith
Chief Executive of Hope House
Dr Jo Griffiths
Consultant paediatric palliative medicine
hafan Y Mor Children’s centre
Dr Richard Hain
Consultant and clinical lead
Wales Managed Clinical Network in
Paediatric Palliative Care
Patricia O'Meara
Paediatric Palliative Care Specialist Nurse
Risca Health Centre
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Eight manifesto asks
Together for Short Lives, Tŷ Hafan and Hope House are asking the political parties contesting the
National Assembly for Wales elections to include the following commitments in their manifestos:
1. “We will put children’s palliative care on an equal footing with the adult specialty,
strengthening representation of children’s needs on the End of Life Board by
establishing the authority of the Paediatric Palliative Care Implementation Group
through effective resourcing and a mandate by the Minister for Health and Social
Services”
2. “We will develop a Paediatric Palliative Care Implementation Plan based on the
recommendations from ‘The Sugar Report’”
3. “We will make sure that there is a strong children’s palliative care workforce, including
further support for North Wales”
4. “We will support joint working between children’s and adult services so that both are
actively involved in developing plans for children transitioning into adult services and
plans for end of life care in the home”
5. “We will promote collaboration and improved communication within the children’s
palliative care sector”
6. “We will measure the extent to which outcomes improve for children and young people
with life-shortening conditions as well as those for older adults. We will form a
taskforce with professionals from the children’s palliative care sector, which will
identify a meaningful set of outcome measures, including the proportion of children
with life-shortening conditions that use the all-Wales Paediatric Advance Care Plan. We
will collect and publish data for specific age groups.”
7. “We will strengthen the 24/7 specialist telephone advice service so that timely and
readily accessible advice can be provided to healthcare professionals for symptom
control”
8. “We will make sure that NHS boards and local authorities fund children’s palliative
care fairly and sustainably”
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Our manifesto asks:
In September 2015, Tŷ Hafan and the University of South Wales published a report ‘Palliative Care
for Children and Young People in Wales: Meeting Future Needs’. 2 We would like the next Welsh
Government to implement the recommendations of the report - and call on the parties to commit to
action to transform the lives of seriously ill children in their manifestos.
1. Equal Status for Children’s Palliative Care
Whereas the majority of adults only need palliative care towards the end of their lives,
children and young people with life-shortening conditions may require palliative care over a much
longer period. The conditions these children and young people live with vary
enormously.
Manifesto commitment:
“We will put children’s palliative care on an equal footing with the adult specialty,
strengthening representation of children’s needs on the End of Life Board by establishing the
authority of the Paediatric Palliative Care Implementation Group through effective resourcing
and a mandate by the Minister for Health and Social Services”
2. A Paediatric Palliative Care Implementation Plan
Develop a Paediatric Palliative Care Implementation Plan to run alongside the End of Life
Implementation Plan.3 This plan should be based upon the specific recommendations from ‘The
Sugar Report’ and local service boards or their equivalents should be tasked with developing regional
plans and publishing annual progress reports. 4
Manifesto Commitment:
“We will develop a Paediatric Palliative Care Implementation Plan based on the
recommendations from ‘The Sugar Report’”
3. A strong, skilled, sustainable workforce
The paediatric specialist workforce in Wales is not enough to provide a workable rota for a 24/7
telephone advice service or a practical support service. The Tŷ Hafan report found that ‘the current
arrangements are not sustainable because they are based upon the good will, and the good health, of
a small number of practitioners.’5 Because this small group of professionals are concentrated in
Cardiff and Swansea, it is extremely difficult to provide support to Mid, West and North Wales.
Funding should be provided to increase the availability of ‘special interest’ sessions in North Wales
and to support general paediatricians based across North Wales to train to level three and provide
this care.
Manifesto Commitment:
“We will make sure that there is a strong children’s palliative care workforce, including further
support for North Wales”
4. Transition – bridging the gap between children’s and adults care
Too many young people who need palliative care reach a ‘cliff edge’ when the time comes for them to
transition from children’s to adults’ services. Although there has been considerable improvement in
2
Skone et al. (2015). Palliative Care for Children and Young People in Wales: Meeting Future Needs.
Available to download from: http://bit.ly/1ONeuyV
3 Ibid., p. 13.
4 Sugar et al. (2008). Palliative Care Planning Group Wales: Report to the Minister for Health and
Social Services. Available to download from: http://bit.ly/1RzYUaP
5 Skone et al. p. 21.
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transition between children’s and adult palliative care services, this has not been replicated in generic
children’s and adults’ services. Research has shown that individual key workers, multiple
assessments and other increased understanding of the needs of young people can improve
transitional arrangements.
Manifesto Commitment:
“We will support joint working between children’s and adult services so that both are actively
involved in developing plans for children transitioning into adult services and plans for end of
life care in the home”
5. Strengthening learning, networks and support
Networking and knowledge sharing play an important role in improving children’s palliative care
services and learning from best practice. However, interviews with children’s palliative care
professionals in 2015 found that these networks need to extend beyond Wales and even beyond the
UK.6 They also highlighted that those working in children’s palliative care need to develop
communications skills to engage with and educate others.
Manifesto Commitment:
“We will promote collaboration and improved communication within the children’s palliative
care sector”
6. Demonstrating cost benefit
There is an absence of robust data that measures need, activity, outcomes and cost of children’s
palliative care across Wales. While individual health boards have made some progress, there is
insufficient national data in order to plan services effectively. The lack of specific data is also a
problem as it is both difficult to plan for and deliver new service models, argue for resource and know
if a difference is being made without it.
Manifesto Commitment:
“We will measure the extent to which outcomes improve for children and young people with
life-shortening conditions as well as those for older adults. We will form a taskforce with
professionals from the children’s palliative care sector, which will identify a meaningful set of
outcome measures, including the proportion of children with life-shortening conditions that
use the all-Wales Paediatric Advance Care Plan. We will collect and publish data for specific
age groups.”
7. Meeting need 24/7
The Welsh Government’s Together for Health – Delivering End of Life Care delivery plan for 20132016 specified that local health boards should put in place a 24/7 specialist children’s palliative care
telephone advice rota.7 However, there is insufficient capacity in the specialised workforce to deliver
this service and the current arrangements are based on the good will and good health of a small
number of practitioners. The Welsh Government should consider working with other regions in the UK
to develop a national service.
Manifesto Commitment:
“We will strengthen the 24/7 specialist telephone advice service so that timely and readily
accessible advice can be provided to healthcare professionals for symptom control”
6
Skone et al. p. 20.
Welsh Government (2013). Together for Health – Delivering End of Life Care. Available to download
from: http://bit.ly/1Wuv8Up
7
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8. Funding
Every child with a life-shortening condition, and their family, should have access to palliative care
services, including children’s hospices, which receive fair and sustainable statutory funding. However,
the 2013 Noyes et al study found that approximately half of the identified resource committed to
children’s palliative care was funded by charities - with the costs of hospice services and continuing
care packages representing approximately 83% of the total cost. 8 Over-reliance on charitable
donations makes it more difficult for children’s palliative services to forecast future income and plan
services accordingly.
Manifesto Commitment:
“We will make sure that NHS boards and local authorities fund children’s palliative care fairly
and sustainably”
8
Noyes et al. (2013). Evidence-based planning and costing palliative care services for children: novel
multi-method epidemiological and economic exemplar. Available to download from:
http://1.usa.gov/1P5LAZI
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A family’s view: Elain James
Little Elain James was referred to Tŷ Hafan in January 2011. Elain was antenatally diagnosed with
congenital heart disease, but it wasn’t until she was born that her family knew the full extent of her
illness.
Tests revealed Elain had multiple, complicated heart conditions and a rare genetic disorder called
Deletion Syndrome. She also has a permanent feeding tube attached to her stomach.
Five-year-old Elain underwent heart surgery at just three months old and spent five months in
hospital. Elain now has a good quality of life, but sadly, it is only a matter of time before her condition
deteriorates.
Her mum, Bridget, said: “Her heart condition is repairable in many cases but unfortunately for us, not
in hers. It’s very rare to have a child with a heart condition that can’t be fixed.” Caring for a child like
Elain can, and does, affect all aspects of family life. Tŷ Hafan provides vital support for the whole
family, including their baby daughter, Martha, offering short break care at the hospice, a listening ear,
a shoulder to cry on and vital emotional and practical support for Bridget and Gareth, at their home in
Aberystwyth.
Bridget said: “Elain loves Tŷ Hafan. They are a lifeline for us and help us create special memories
which we’ll cherish forever.”
Elain adores relaxing in the charity’s hydrotherapy pool and its new desert-island themed adventure
playground.
“We are able to relax at Tŷ Hafan and do the normal things that other families may take for granted. It
can be difficult at times, but knowing that Tŷ Hafan is there for us is such a comfort," said Bridget.
Not knowing how long they have left with their beautiful daughter means Bridget, 30, and Gareth, 35,
want to make every moment count. Bridget added: “We feel extremely lucky that Elain currently has
such a great quality of life and is an extremely happy and content little girl.
"We would like to thank Tŷ Hafan for all they do for us and are so grateful they are with us on our
journey."
A professional’s view: Dr Richard Hain
One of the challenges that has always faced children’s specialties is how they fit within the wider
health service. Children are small in number, but the range and complexity of services they need is at
least as great as those of adults. The risk is that the priorities of commissioning and funding strategies
are wrongly based on numbers of children, rather than their complexity, and the services they need.
That risk is particularly high in palliative care, which addresses not only physical issues, but also the
child’s wider psychosocial and spiritual needs. A paediatric anaesthetist might argue reasonably that
an unconscious child is, more or less, ‘a small adult’. But the more holistically one looks at a child, the
more distinctive her needs become. Recognition of that distinctiveness must be the starting point if
palliative care for children in Wales is to ‘do what it says on the tin’.
This manifesto achieves such recognition. It sets out three ways to ensure that paediatric palliative
care is tailored to the needs of children. It will give greater authority to the voices of those working
with children, by giving a mandate to specifically paediatric commissioning arrangements. It will
ensure that services to children are appropriately evaluated, by introducing outcomes that
meaningfully reflect the lived experience of children and families. And it will identify gaps and
weaknesses in existing provision (such as community paediatric nursing and local medical support
that could allow the child to remain at home, sustainable support for children’s hospices, and services
that smooth a child’s transition to adulthood), by setting palliative care for children in the context of
other paediatric services.
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This manifesto radically and rightly recognises the distinctiveness of children, but also something
children have in common with adults: the need to be appropriately and holistically cared for at the end
of life.
Dr Richard Hain is Consultant and Clinical Lead of the Wales Managed Clinical Network in Paediatric
Palliative Care at the Children's Hospital, Cardiff
About Together for Short Lives, Tŷ Hafan and Hope House
This manifesto has been produced by Together for Short Lives, Tŷ Hafan and Hope House. It reflects
the views of Together for Short Lives’ members across the children’s palliative care sector - families,
professionals and services, including children’s hospices. The commitments in this manifesto
incorporate the recommendations from the ‘Palliative care for children and young people in Wales:
meeting future needs’ report published in 2015 by Tŷ Hafan and the Welsh Institute for Health and
Social Care at the University of South Wales.9
Together for Short Lives is the
leading UK charity for all
children with life-shortening
conditions and all those who
support, love and care for them.
Tŷ Hafan offers care to
children and support for
their families throughout
Wales – whether at home,
in hospital, at school or in
their hospice.
Hope House provides
specialist nursing care and
support to life-limited children,
young people and young adults
from Shropshire, Cheshire,
North and Mid Wales.
Children’s palliative care is provided by the family and is supported by a range of professionals,
including but not limited to specialised medical support, community children’s nursing teams,
community paediatricians, hospice at home teams and GPs.
What are 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
children are expected to die. Life-shortening conditions or episodes are those for which curative
treatment may be feasible but can fail. Children with life-shortening conditions need continuing
palliative care throughout the trajectory of their illness.
How many children and young people have life-shortening conditions in Wales?
There are approximately 1,054 babies, children and young people in Wales with life-shortening
conditions. This number is growing, as advances in medicine and care mean that more young people
with life-shortening conditions live into adulthood.
What do children and young people with life-shortening conditions need? 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.
Palliative care for children and young people should 10:
9

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
Skone et al.
Together for Short Lives (2013). Definitions. Available to download from: bit.ly/Z34i5s.
10
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
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.
One size does not fit all - what is the difference between children and adults palliative care?
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.
A comprehensive local children’s palliative care service spans health, social care and education. 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.

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 - many children who need children’s palliative care
have no definitive underlying diagnosis.

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 adults’ 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.
At all times, locally available and community-led children’s palliative care should be at the heart of
care provided to children with life-shortening conditions. This should be supported by:

Specialist medical input (for example, medical consultants with expertise in the child’s
condition).

Community children’s nursing teams.

Children’s hospice services.
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
Specialised children’s palliative care providers.

Access to secondary and tertiary care.

Emotional and psychological support.

Local authority children's services - practical care and support, including services providing
equipment to disabled children, education, housing and leisure.

Community paediatricians.

Primary care.
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