27 November 2015
Sense: The Case for Play inquiry
A written submission from Together for Short Lives
About us
Together for Short Lives is the leading UK charity for all babies, children and young people
with life-threatening and life-limiting conditions and all those who support, love and care for
them - families, professionals and services, including children’s hospices. Our work helps to
ensure that children can get the best possible care, wherever and whenever they need it.
Our response is informed by the views and experiences of voluntary and community sector
(VCS) children’s palliative care provider organisations and the families of children with lifelimiting and life-threatening conditions.
The definitions of, and distinctions between ‘palliative' and 'end of life' care
Palliative care for children with life-limiting or life-threatening conditions is an active and total
approach to care, from the point of diagnosis or recognition, throughout the child’s life, death
and beyond. It should meet their physical, emotional, social and spiritual needs. It should
focus on enhancing their quality of life and providing support for their family. It should include
managing distressing symptoms, providing short breaks and care through death and
bereavement. Palliative care for children and young people should be provided in age and
developmentally appropriate settings by professionals who are skilled in working with their
age-group.
Whereas the majority of adults only need palliative care towards the end of their lives,
children and young people with life-limiting conditions may require palliative care over a
much longer period. The conditions these children and young people live with vary
enormously.
Summary of our submission
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Play is a crucial component of children’s palliative care – both developmentally and
for leading a fulfilling life
For children with life-limiting and life-threatening conditions, play can help a child
develop their communication skills, learn about the world around them, learn about
their own condition, and create valuable family memories
Although there are some specialist play centres for children who need specialised
care, these are often too far away from families and/or not open frequently
Poor staff training and a risk-averse culture are limiting play opportunities for children
who need palliative care
Parents often do not have time to focus on playing with their child and find the cost of
specialised toys prohibitive
To increase play opportunities, play staff should be trained to work with children with
complex needs and training should instil a can-do attitude
Staff should share the findings from their assessments of what a child is capable of
doing when playing so to maximise play opportunities in different settings
Our submission
The importance of play
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Children’s palliative care should meet a child’s physical, emotional, social and spiritual needs
– not just clinical need. As discussed below, play is vital to developing children’s social,
communication, learning, self-awareness and creative skills. However, it is also vital to
recognise play as an end in itself (play for play’s sake’) as children who need palliative care
should be able to play, enjoy themselves and have fun as other children are able to. This is
best summarised by a play specialist from a children’s hospice, who has told us that ‘all
children have a need and right to take part in play’. One parent of a child with a life-limiting
condition has told us that the primary importance of play is ‘just having fun!’.
Play can help a child to communicate. It can also help develop their communication skills:
through play, a child who normally finds it difficult to express themselves can show their likes
and dislikes and whether they are happy or sad. Play also offers chances to communicate
with new people and forming new friendships – the unity of a shared goal, challenge of cooperative working and pleasure of a shared success reinforces the learning process and
develops relationships. This also builds children’s confidence and self-identity. Playing is a
different experience for each individual – you cannot play ‘wrong’.
Playing and interacting with objects allows a child to learn about them. It also helps a child to
understand concepts and gives them a chance to be creative. As well as being relaxing for
the child, this can also enable them to acquire skills, knowledge and understanding in their
own world that can be transferred to other settings. Developmentally, play is a way of
revisiting a situation in order to act-out, rehearsed and process the information or skills so
that they are available for later use. It is an opportunity for children to learn about the world
around them through trial and error. For children with life-limiting or life-threatening
conditions, play can provide an important sense of normality, particularly if a child has to
spend periods of time in hospital or with therapists.
For children who require frequent surgery or treatments, play can be an innovative and
valuable way for them to learn about their condition. A professional or parent can help a child
prepare for surgery or injections in a safe and fun environment by acting out the scenario
before the procedure takes place. This can also give the child opportunities to see and ask
about what exactly it is that they will be going through.
The benefits of play for a child who needs palliative care also extend to the wider family. For
parents, watching their child do an activity is an emotional experience - and can make them
happy. Play also allows parents of children with life-limiting conditions to form lasting
memories of their time with their child. Creating something and playing together can also
give the family a sense of normality: it can act as a distraction from their usual busy
schedules of arranging appointments and taking their child to see specialists.
Obstacles to play
A lack of local facilities suitable for children with multiple needs prevents children from
participating in play. Parents of children who need palliative care report that facilities for
disabled children are often too far away or run too infrequently - sometimes as little as once
a month. This is compounded by poor accessibility in mainstream play facilities. Soft play
centres, for example, are not usually set up for children with disabilities and are rarely
wheelchair friendly. This is because most exercise activities and equipment are tailored to
children without disabilities. The loud and overwhelming environment in many play centres
can also make some children with sensory impairments scared and confused.
Poor staff training also denies children opportunities to play. Staff often have little
understanding of what children with sensory impairments would benefit from in terms of play
and often assume that the child cannot or has no desire to play. It can take a lot of
preparation to enable a child to play and professionals may be too risk-averse and assume
that safety concerns mean play is impossible. For example, a simple activity like playing with
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sand can be dangerous for children with a ventilator or tracheostomy. However, with
adequate preparation, this can be possible (see ‘Increasing play opportunities’, below).
Understandably, arranging time to play is not always a priority for a parents or carers, who
are often 24/7 carers for their child. It can be difficult to arrange safe play for the child and it
is often ‘forgotten about’ due to complications arising from their complex needs.
Furthermore, it can be expensive due to the cost of private services and what a parent
described as the ‘special needs premium’ - where toys marketed at children with complex
needs cost more than their generic counterparts.
Increasing play opportunities
Staff in play and educational environments should be given training and support to include
children with multiple and complex needs in play opportunities. This should include guidance
on what sensory equipment deaf and blind children can use for enjoyment or learning. A
parent of a child with a life-limiting condition has suggested that at least one member of staff
at each play setting should be trained in sign language. Having sufficient numbers of staff is
also vital – a play specialist reported how a child was unable to play in a sandpit because
they had a ventilator, but with supervision they were able to play with a small amount of sand
and experience the texture for themselves.
The lack of facilities that provide play opportunities for disabled children is a clear limiting
factor. Mainstream play facilities can be adapted to allow disabled children to use them and
participate with their peers. Increasing the provision of specialist playgrounds offers further
opportunities for children with complex needs – a hospice reported having facilities that
include a wheelchair swing, wheelchair accessible round-a-bout and a climbing frame that
helps children to teach the top.
Changing attitudes towards what a child is able to do is also vital to increasing opportunities
for play. Children, young people and their families need to know that they should expect
things to be adapted to meet the needs of the child, not the other way around. Similarly,
instead of questioning whether a child can take part in a set activity, staff should ask how
they can adapt the activity so that the child can access and enjoy it. At one hospice, they
encourage children who have no hands to participate in music lessons by exploring chimes
or guitars with their feet. Creating these play opportunities can involve lengthy risk
assessment and thinking outside the box, but can open up exciting new experiences for the
child. Staff should also share these assessments and findings multi-professionally, to
increase play opportunities whichever setting the child is in.
Case study
During a school meeting regarding a child who was transitioning from school into hospital, a
play specialist was told that the child would be excluded from craft lessons. The child had
spent most of their life in hospital and had several fingers amputated as a result of an earlier
infection. The school’s justification for the exclusion was that the activity would be too difficult
and they had not consulted the family or child about what their preference was.
The play specialist who attended this meeting explained that although the child would be
unable to use or manipulate all of the craft tools, they were more than capable to take part at
a level suitable for them providing adaptations were made. Through trial and error, the child
learnt what they were able to do, which tools they were able to use and developed an
understanding of working with different materials and fabrics. By working with their peers
they were also able to develop their learning and listening, turn-taking, and instructionfollowing skills. They also felt the sense of achievement from finishing a product and taking it
home to be displayed.
Policy context
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Children and Families Act 2014
The Children and Families Act 2014 and resulting SEND Code of Practice established that
each local authority must publish a Local Offer, setting out the support they expect to be
available for local children and young people with special educational needs or disabilities
(SEND). This legislation includes children and young people aged 0-25, including those who
need palliative care. Chapter 4.30 of the Code of Practice specifies that local authorities
must include ‘leisure activities’ in their Local Offer.
However, a Department for Education report in July 2015 found that nearly three-quarters of
families had not heard of their Local Offer, while only 1 in 8 had used it.1 As the Local Offer
is intended to be a constant dialogue between young people, their families and the local
authority regarding demand and provision of services, this is very disappointing.
Local authorities should publish and advertise their Local Offer, including any play
opportunities for children. Engaging with young people and their families through their Local
Offer is a crucial way for families to find out what services are available close to them and to
push for facilities which they need if they are not already available. The government should
also work with local charities and information services to advertise the existence of Local
Offers and to inform families how they can influence them.
Early intervention
We are pleased that the Minister for Children and Families, Edward Timpson, recently stated
in a response to a parliamentary question that ‘play is essential for children’s development’2.
Local authorities should provide play specialists for children with multiple need as party of
their early intervention strategy, to make sure that young children can play and to support
families to play with their children.
Workforce
Health and wellbeing boards should identify children with multiple needs, including those
who need palliative care, and include them in their assessments of the needs of their local
population. Based on this information, the government should work with the Healthcare Play
Specialist Education Trust to develop a national strategy that makes sure there are sufficient
numbers of play specialists in local areas, correlating with local need. This strategy should
address whether there are sufficient numbers of play specialists, where they are based, and
where there are gaps resulting in poor service provision and poor outcomes for children.
For more information, please contact:
Patrick McKenna
Public Affairs and Policy Officer
0117 910 2464
07496 470 879
[email protected]
1
https://www.gov.uk/government/uploads/system/uploads/attachment_data/file/448156/RR471_SEND_pathf
inder_programme_final_report.pdf
2
http://www.parliament.uk/business/publications/written-questions-answers-statements/written-questionsanswers/?page=1&max=20&questiontype=AllQuestions&house=commons%2clords&uin=15995
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