The CHAS service Our model of care - Caring for children, young people and their families is at the heart of all that we do
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f The CHAS service Our model of care Caring for children, young people and their families is at the heart of all that we do
CHILDREN’S HOSPICE ASSOCIATION SCOTLAND
Contents
2 About CHAS
3 About our service
© Sally Jubb
4 Our approach to care
For families
Photograph
For health and social care professionals
y
5 Who will CHAS care for?
Explaining our referral criteria and processes
8 What care services does CHAS offer?
Delivering a range of services throughout Scotland
9 How does CHAS deliver care services?
Giving families access to the right support at the right time
11 Practical care after the death of a child
11 Ongoing bereavement support
12 Appendices:
a) Definitions of children’s palliative care
b) Glossary of terms
c) References, key policies and documents that underpin our work
1
CHILDREN’S HOSPICE ASSOCIATION SCOTLAND
About CHAS
CHAS is the Children’s Hospice Association Scotland. Our vision
is that every baby, child and young person in Scotland will have
access to palliative care when and where they need it. This sits
at the heart of everything we do.
Our role as a charity is threefold:
n We provide CARE through our two hospices – Rachel House in Kinross and
Robin House in Balloch – and also through CHAS at Home which has teams
working from Rachel House and Robin House as well as dedicated teams in
Aberdeen and Inverness, caring for families in their own homes when they
need it most.
n We generate SUPPORT for our work through year-round fundraising
to secure the funds needed every year to run our hospices and
provide services to families.
n We make CONNECTIONS between families, health and social
care professionals, the media, supporters and influencers to
raise awareness of our work and promote joined up service
provision for families.
“I am delighted that CHAS and the NHS continue
to pioneer collaborative developments to improve
patient care and family choice. Common aspirations
are for CHAS to care for the increasingly ill child.
© Paul Hampton
In particular we aim to offer families end of life
care in a less clinical, less rigid, more comfortable
environment when it is medically feasible and
right for the family.”
Photographer
Dr Chris Kidson, Consultant,
Paediatric Intensive Care Unit
2
CHILDREN’S HOSPICE ASSOCIATION SCOTLAND
About our service
At CHAS we provide specialist palliative care, which responds to the needs
of children and their families, to offer care and support wherever the family
chooses. We provide families and health and social care professionals with
access to a range of specialist support across disciplines including nursing,
medicine, social work and allied healthcare.
We support the whole family, as and when they need it, throughout their journey from referral to
bereavement. The support we offer can be in one of our purpose built hospices (Rachel House
in Kinross and Robin House in Balloch), in the family home or in a hospital setting. Each of our
children’s hospices can accommodate up to eight children and their families, for planned or
unplanned visits. Our CHAS at Home service has a team at each of our hospices in Kinross
and Balloch, as well as in Inverness and Aberdeen, and offers nursing care in the family home
to give families a break from caring for their child.
Technical care increasingly goes hand in hand with palliative need. Our team has the skills
to look after children whose care requires a high degree of complex intervention including
ventilation, parenteral nutrition, intravenous medication and peritoneal dialysis. As long as
a child is established in using such interventions at home, then they will be able to be
looked after by CHAS at Home or in one of our hospices.
“I have been involved in two referrals of
children who need peritoneal dialysis and
each time I worked very closely with the
nursing team at CHAS to ensure everything
was in place. I was really impressed at
how quickly CHAS nurses were trained
to manage this specialised care.”
Lynne Riach,
Paediatric Renal Clinical Nurse Specialist
3
CHILDREN’S HOSPICE ASSOCIATION SCOTLAND
Our approach to care
For families
n We put the child who needs care and support at the heart of everything we do
n We provide opportunities for fun, play and enjoyment – alongside palliative and
end of life care – understanding their importance even against a background of
serious illness and the likelihood of early death
n We support a child and their family’s choice of life-enriching opportunities and
shared experiences, helping the child and his or her siblings to live life to the full,
creating shared experiences and treasured memories
n We work with families and other health and social care professionals to develop “We worked with CHAS and the
anticipatory care plans that capture the family’s wishes, hopes and dreams at an Emma Cameron Foundation to
develop a night sitting service for
early stage and on a regular basis children at end of life. It is called
n We do all of this in a way that is rights-based and ensures the care we offer is safe, ‘Sleep Tight’ and we lead the
care while CHAS provides nursing
effective, person-centred and promotes well-being, in line with Getting It Right for support overnight. It makes such
Every Child (GIRFEC) and the articles contained within the United Nations a difference to be able to offer
Convention on the Rights of the Child (UNCRC). this kind of care to help families
be in their own home.”
For health and social care professionals Anne Clarkin,
Paediatric Oncology Outreach Nurse
n We collaborate with, and work alongside, professionals in the family’s
community, recognising that we are part of a bigger network of care
services for children across Scotland
n We ensure that we support the best possible communication pathway
between a child, their family and the professionals caring for them
n We provide care that is evidence-based, while keeping the best
interests of the child at the centre of the care they receive
© Sally Jubb Photography
n We provide clinical leadership and support in the planning and delivery
of children’s palliative care to help ensure that children’s and families’
needs are met in a range of settings
n We share expertise with the teams caring for a child, particularly in
the local community, in the interests of delivering best practice in
the palliative care of children.
4
CHILDREN’S HOSPICE ASSOCIATION SCOTLAND
Who will CHAS care for?
Explaining our referral criteria and processes
We offer support from the neonatal stage through to those
reaching 21 years of age. We consider new referrals for children
with life-shortening conditions from the antenatal period up to
their 18th birthday. The Framework for the Delivery of Palliative
Care for Children and Young People in Scotland (2012) recommends
that a palliative care approach should be used alongside active
disease management from an early stage in conditions that have
the potential to result in death before adulthood.
“It can sometimes feel hard
Frameworks for decision making to know when the time is right
The two frameworks we use to support our decision making at the initial referral to suggest a hospice might be
able to help. But our experience
assessment are the Together for Short Lives/Royal College of Paediatrics and Child is that families have always
Health (RCPCH) (2009) categories and The Spectrum of Children’s Palliative Care found their support so helpful.
Needs Prognosis Based Framework (2012). We all work hard behind the
scenes to ensure families are
able to choose what elements
Together for Short Lives/RCPCH (2009) categories they want – from small steps
such as sibling support or a bit
Category One of homecare, through to being
Life-threatening conditions for which curative treatment may be feasible but able to stay in the hospice with
their whole family. Flexibility and
can fail – e.g. Cancer, irreversible organ failures of heart, liver and kidneys. gentleness is always the key.”
Dr Mark Brougham,
Category Two Consultant Paediatric Oncologist
Conditions where premature death is inevitable, but long periods of intensive
treatment aim to prolong life – e.g. Duchenne muscular dystrophy and cystic fibrosis.
Category Three
Progressive conditions without curative treatment options.
Treatment may extend for many years, but is exclusively palliative –
© Sally Jubb Photograph
e.g. Batten disease and mucopolysaccharidoses.
Category Four
Irreversible non-progressive conditions causing severe disability and
leading to a likelihood of premature death – e.g. Severe cerebral palsy,
brain and spinal cord injuries.
5 y
CHILDREN’S HOSPICE ASSOCIATION SCOTLAND
Spectrum of Children’s Palliative Care Needs Prognosis
Based Framework (2012)
This framework describes the children who may need palliative care as those:
n who are diagnosed antenatally or postnatally with a condition which is not
compatible with long term survival
n who are diagnosed or recognised to have a potentially life-shortening
or fatal condition before their 16th birthday
n whose death before their 21st birthday is not unexpected
n who have increasing instability or progressive deterioration and death is not
unexpected in months to years
n who are critically ill and survival is not expected beyond the next few weeks.
Our referral process
We welcome referrals from health and social care professionals, as well as from
families. To help us ensure that children get palliative care at the right time, our
referral team involves professionals who know the child and their family to ensure
that a multi-professional decision is made regarding acceptance into our service.
The referral process is optimised by early discussion between CHAS and all the
health and social care professionals involved, so we are happy to have an informal
discussion if you are unsure about whether a child may be eligible or not. The whole
process, from either an emergency or planned referral through to acceptance and
receiving care, is outlined below.
Emergency referral
Although the majority of our referrals are non-urgent, we respond to emergency
referrals at short notice. A clinical team may be involved in caring for a child who
has very rapidly entered a clear deteriorating or end of life phase and we encourage
the senior professional on the team to contact Rachel House or Robin House and
speak to the nurse in charge so that an immediate response can be organised.
Our response to emergency referrals will vary according to each individual situation,
but could include:
n a same day assessment visit to hospital or a child’s home
n admission to a hospice the same day or as soon as appropriate
n the CHAS at Home team visiting the family home the same day or as soon
as appropriate.
6CHILDREN’S HOSPICE ASSOCIATION SCOTLAND
Non-urgent referral
All our referrals are assessed by a doctor, senior nurse and a social worker. This
team will look for information indicating the current level of palliative need and
potential prognosis. We speak to the health and social care professionals working
closely with a family to ensure we make a decision about acceptance to the service
based on the very best clinical information. A home visit is usually made so we can
mutually explore a family’s understanding of their child’s need for palliative care
and what a referral to CHAS means.
The assessment process timescale can vary depending upon how long it takes
to gather all the relevant background information on the child.
Additional decision making criteria
When a diagnosis does not provide a clear indication of palliative care needs, we
consider additional criteria to help predict the probable disease trajectory and the “We frequently do joint visits
likelihood of dying before adulthood alongside the specific clinical details of the to families and I recently
child. Conditions where this may be the case include complex epilepsy, cerebral re-referred a child who was
then accepted for ongoing
palsy and Duchenne muscular dystrophy. care with CHAS having been
declined before. This time,
working together, we got the
When CHAS is not right for a child timing right.”
Not every child and their family can be supported by CHAS and Phyllis Davidson,
sometimes the team will make the difficult decision to decline Children’s Community Nurse
a referral. Obviously this can be upsetting for everyone involved,
but a decision to decline is never taken lightly and is usually
made because at that point in the child’s disease trajectory there
is no clear evidence of palliative care need. Whenever we decline
a referral we always explain our reasons fully and discuss them
in detail with the original referrer.
© Sally Jubb Pho
tography
7CHILDREN’S HOSPICE ASSOCIATION SCOTLAND
What care services does
CHAS offer? “I make sure every day at
Rachel House is packed full
of fun activities, not just for
Delivering a range of services throughout Scotland the child who is unwell, but
for their siblings and the rest
Over the years, our role – and indeed our expertise – has developed of their family. Creating happy
memories is an important part
to include nursing, medicine, social work, pharmacy, physiotherapy, of what we do.”
specialist play and chaplaincy, in direct response to the needs of a Alison Blair,
child and their family. We know from experience that the needs of Activities Team, Rachel House
each child and family will vary and therefore we tailor the care we
provide accordingly. “My recent experience of
supporting a mother, both
Today we deliver a range of services throughout Scotland including: before and after the death
of her baby, made me
n Short planned breaks where a family can stay together in one of our hospices, appreciate the importance
of CHAS’s involvement.
or children can stay on their own The way we have developed
n Planned sessions of nursing care in the home, community or hospital setting links between our service
n Emergency or unplanned admissions to one of our hospices and CHAS is making a huge
difference to our patients.”
n Emergency or unplanned care in a child’s home
n Medical consultation visits to a child in hospital or at home Professor Ben Stenson,
Consultant Neonatologist
n Visits from our nursing and family support team to a child in hospital or at home
n Development of anticipatory care plans in conjunction with families
n Step-down care after a hospital admission and before going home, particularly
where there has been significant change in a child’s condition
n Planned day visits to one of our hospices
n An activities team to give children and their siblings opportunities for fun
and access to the special experiences that all children should enjoy
n Emotional support for a child and their family to enable them to process
what is happening and be as resilient as they can
n 24 hour advice to families or to health and social care professionals
n Symptom management, both practical and advisory, for families and health
and social care professionals
n End of life care
n A comprehensive family support service which includes social work,
specialist play, chaplaincy and bereavement therapy for both close and
extended family members.
8CHILDREN’S HOSPICE ASSOCIATION SCOTLAND
How does CHAS deliver
care services?
Giving families access to the right support at the right time
We aim to offer support that reflects a child’s stage in their illness
trajectory. When a child is accepted for our services, their family
will be assigned a key worker from CHAS who will work with them
to develop a care plan for their child. This care plan is reviewed with
them every time they use the service to make sure it still accurately
reflects their needs and the best way to care for their child. “Although being discharged
from CHAS is a really positive
Agreed level of support thing, we all knew that the
family would find it hard to
We offer a personalised service to ensure that each family gets the correct level of cope without the care and
care and support at the right time. For example, a child who is clinically stable may support CHAS provides.
be offered a smaller number of short planned breaks each year, and other aspects I was glad that we were able
to do this together, gently
of the service as appropriate. For some other families whose child is in an unstable and sensitively.”
or deteriorating phase, we will tailor an increased level of support accordingly.
Gill Deaves,
This is reviewed, at least annually, by a CHAS social worker, senior nurse and doctor. Children’s Community Nurse
Family assessment
Soon after acceptance, a CHAS social worker will carry out a family
assessment. This aims to establish the family’s expectations of CHAS,
their own goals and aspirations as a family, and any areas of their life
they identify as needing support. We specifically focus on issues around
loss, anticipatory grief, complex family systems and child care. Our aim
is to help families stay connected to their natural and local support
networks and help them to maintain and develop positive coping
© Sally Jubb Ph
strategies as a family. We develop a family plan with them to capture
how our service will support them and this is regularly reviewed
with families.
otography
9CHILDREN’S HOSPICE ASSOCIATION SCOTLAND
End of life care
We will help families establish their wishes about where they would like their child to
die when the time comes. This may be at home, in hospital or in one of our hospices.
Our aim is that admission to a hospice for end of life care is always available. However,
this is not the only option and we are committed to working with other teams and in
other settings as and when required, for example in supported transition from intensive
care units to end of life care at home or in a hospice.
nEnd of life care at home
When the family home has been chosen as the preferred place for a child to die,
we will work with partner agencies, such as community and hospital nursing
teams, to help provide nursing and medical care in the home
n End of life care in hospital
When hospital is the preferred place for a child to die, we offer support to hospital
teams by providing advice, visits from our own nursing team to supplement the
care being provided and input from our family support team. We actively encourage
the hospital teams to speak to us about what support will be most helpful.
Being discharged from CHAS
Many positive developments in treatment and care over the past few years have,
in some instances, increased life expectancy and, where there is an improvement
or recovery in a child’s condition, we may be in a position to discharge children
who no longer have palliative needs.
Transition
When young people are approaching adulthood, our transition
team will work with them and their families to ensure that they
experience a positive transition from CHAS to palliative care
more suited to adults. We are wholly committed to working with
families and professionals to support effective transition to other
© Sally Jubb Photography
services when and where it is appropriate. If a young person is
clearly approaching end of life we will continue to support them.
10CHILDREN’S HOSPICE ASSOCIATION SCOTLAND
Practical care after “The death of our daughter was
a strangely peaceful time and we
felt held in a bubble. We came to
the death of a child Rachel House when Leah became
really unwell. It was the hardest
thing we have ever done in our
As a hospice service, we provide practical help and support lives. I wasn’t frightened, although
I expected to be. And we felt
in the first few days following the death of a child. completely in control of an
uncontrollable situation.
Each of our hospices has a cool room which gives families the opportunity to spend We were able to cuddle and
time with their child after his or her death. If a child dies in hospital or at home they can hold and kiss Leah as she died.
be transferred to one of the hospice cool rooms if the family wishes – but we also have Everyone stood back and simply
let us be with her. The people
portable cooling equipment if the family would rather have their child’s body at home. around us were beautiful. There
was so much dignity given by the
The use of our cool rooms or cooling equipment offers families the chance to create staff to Leah and to us. And such
a sense of peace.
an environment where they can spend some final time together as a family, following
the death of their child. At this stage we will spend as much time with the family as Being able to have time with Leah
afterwards was so important.
they need, listening, talking and playing with the other siblings. We can also help with To be able to say goodbye a little
planning the funeral and dealing with the many potentially overwhelming tasks which more each day and to allow our
have to be undertaken following the death of a child. hearts to catch up with the
dawning realisation that she
was gone. We were able to let
Ongoing bereavement support her go in our own time.”
Kim and Dave Johnstone,
parents to Leah
Bereavement care is a key part of our service and we
will continue to offer families professional support after
the death of their child, in the most appropriate way.
We use recognised grief assessment tools to assist the family and to
determine the most appropriate level of support for each family member.
Ongoing bereavement support may include one or more of the following
options: facilitated support groups, individual support, creative therapies,
© Paul Hampton
telephone support, annual remembering services and bereavement
support newsletters.
Within any family we assess the needs of parents to support each other
Photographer
and their children. We recognise that each person is individual
and will have their own unique way of expressing their grief.
11CHILDREN’S HOSPICE ASSOCIATION SCOTLAND
Appendix A: Appendix B:
Definitions of children’s palliative care Glossary of terms
Together for Short Lives Antenatal period: Before birth; during or relating to
Palliative care for children with life-limiting and life-threatening pregnancy.
conditions is an active and total approach to care, from the
Anticipatory care plan: A family held document that
point of diagnosis or recognition, throughout the child’s life,
captures and records the advance wishes and decisions
death and beyond. It embraces physical, emotional, social
of the child or young person and their family. This focuses
and spiritual elements and focuses on the enhancement
on the three main components of wishes during life,
of quality of life for the child or young person and support
wishes when the child becomes more unwell and wishes
for the family. It includes the management of distressing
in relation to the end of the child’s life.
symptoms, provision of short breaks and care through
death and bereavement. Batten disease: The common name for a group of
diseases called the Neuronal Ceroid Lipofuscinoses
World Health Organisation (WHO) (NCLs). These refer to several different genetic life-limiting
Palliative care for children represents a special, albeit neurodegenerative diseases that share similar features.
closely related field, to adult palliative care. WHO’s
definition of palliative care appropriate for children and Cerebral palsy (CP): The term used for a group of
their families is as follows: non-progressive disorders of movement and posture
caused by abnormal development of, or damage to,
n Palliative care for children is the active total care of the motor control centres of the brain. The abnormalities
child’s body, mind and spirit, and also involves giving of muscle control that define CP are often accompanied
support to the family by other neurological and physical abnormalities.
n It begins when illness is diagnosed, and continues
Cystic fibrosis (CF): An inherited disease that affects
regardless of whether or not a child receives treatment
the lungs, digestive system, sweat glands and male fertility.
directed at the disease
Its name derives from the fibrous scar tissue that develops
n Health providers must evaluate and alleviate a child’s in the pancreas, one of the principal organs affected by
physical, psychological and social distress the disease.
n Effective palliative care requires a broad Duchenne muscular dystrophy (DMD): A neuromuscular
multidisciplinary approach that includes the family condition caused by the lack of a protein called dystrophin.
and makes use of available community resources; It is a serious condition that causes progressive muscle
it can be successfully implemented even if resources weakness.
are limited
Emergency referral: A referral that needs an immediate
n It can be provided in hospitals, in community health
response because a child has rapidly entered a dying phase.
settings and even in a child’s home.
12CHILDREN’S HOSPICE ASSOCIATION SCOTLAND
Health and social care professionals: Staff from a range of Treatments and complex interventions: CHAS is committed
specialties including nurses, doctors, social workers, support to ensuring our teams learn appropriate skills so that any
workers, psychologists and allied health professionals. From intervention a child receives at home can also be managed by
a CHAS perspective we would include within this definition us. In some situations, we will arrange specialised training relating
anyone involved in the care and support of a child with a to a specific child and their treatment. Examples of this are:
life-shortening condition.
n Intravenous medication: Medication delivered through
Keyworker: Each child is allocated a named member of the a tube directly into a vein
CHAS nursing team who will ensure contact is maintained
between visits and that the wishes of the family are met.
n Invasive ventilation: An artificial airway such as a
Mucopolysaccharidoses: A group of inherited metabolic tracheostomy is created and a mechanical ventilator
diseases caused by the absence or malfunctioning of certain replicates the breathing process
enzymes needed to break down molecules called
glycosaminoglycans. The result is permanent, progressive n Non-invasive ventilation: A way of delivering respiratory
cellular damage that affects the individual’s appearance, support to children who can breathe spontaneously but need
physical abilities, organ and system functioning, and, in a bit of extra help. The ventilation is delivered via different
most cases, mental development. types of masks attached to a small portable machine
Neonatal: Relating to new born babies, most often referring n Parenteral nutrition: Specially prescribed nutrients delivered
to the first 28 days of life. through an intravenous line directly into the bloodstream
Non-urgent referral: A non-urgent or planned referral does
n Peritoneal dialysis: A treatment for patients with severe
not require an immediate response (see Emergency referral)
chronic kidney disease. The process uses the patient’s
but will be considered individually by the referral team and
peritoneum in the abdomen as a membrane across which
responded to accordingly.
fluids and dissolved substances (electrolytes, urea, glucose,
Step-down care: A service for children who need a stopover albumin and other small molecules) are exchanged from
between hospital and home. This may be required, for the blood. Fluid is introduced through a permanent tube in
example, as a result of having been in hospital for treatment the abdomen and flushed out either every night while the
or experiencing a deterioration in their condition. patient sleeps or via regular exchanges throughout the day.
Transition: When a young person reaches the age of 18, we
start to work with them to support their transfer from CHAS
to the appropriate adult services by the time they are 21.
13CHILDREN’S HOSPICE ASSOCIATION SCOTLAND
Appendix C:
References, key policies and documents
that underpin our work
References
Together for Short Lives, A Guide to the development of
children’s palliative care services, (2009)
Together for Short Lives and University of Birmingham,
Spectrum of Children’s Palliative Care Needs, (2012)
Key policies and documents
Children and Young People (Scotland) Act 2014
Scottish Government, Getting it Right for Every Child
(GIRFEC), http://www.scotland.gov.uk/Topics/People/
Young-People/gettingitright, (2006)
© Sally Jubb Photogr
Scottish Children and Young People’s Palliative Care
Executive Group, Framework for the Delivery of Palliative
Care for Children and Young People in Scotland, (2012)
aphy
UN General Assembly, United Nations Conventions on the
Rights of the Child (UNCRC), (1989)
“The death of a child has serious and lasting effects on
the parents and other family members, effectively for
the rest of their lives. Any attempt to reduce symptoms,
and to improve the quality of life in the final days and
weeks, must not only be good for the child involved but,
in the fullness of time, be good for those left behind.”
Dr Pat Carragher,
Medical Director, CHAS
14f Contact us If, after reading this booklet, you would like to refer a child or discuss a possible referral, please get in touch. Rachel House Avenue Road Kinross KY13 8FX Tel: 01577 865777 Robin House 2 Boturich Road Balloch Alexandria West Dunbartonshire G83 8LX Tel: 01389 722055 www.chas.org.uk Scottish charity number SC019724 CA/10/14 Published January 2015
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