Richard House Children’s Hospice
Quality Account
2014-15
Living for today, creating positive memories for tomorrow
Registered Charity number 1059029
Contents
Page
4
Section
1. Chief Executive statement
6
2. Review of services
8
3. Improvement Priorities for 2015-16
3.1 Improvement 1: Measuring impact and outcomes for children and
their families
3.2 Improvement 2: Model of Care
3.3 Improvement 3: Hospice as a hub
15
4. Audit
4.1
4.2
4.3
4.4
4.5
Audit Statement
National Audits
Local Audits
Clinical Audits
Clinical Research
16
5. Care Quality Commission (CQC)
5.1 Care Quality Commission registration status
5.2 What the Care Quality Commission says about us
18
6. Our wider partnership networks
20
7. Data management and handling
7.1
Quality of systems and data collection
7.2
Using data to understand Richard House
7.2.1 Monitoring referrals
7.2.2 Reducing barriers
7.2.3 Ensuring equity of access
7.2.4 Using data to understand local need
7.2.5 Using data to monitor end of life care planning
7.3
Errors and coding
27
8. Progress against previous improvement priorities
8.1 Assessing impact for children, young people and families
8.2 Revising the model of care
8.3 Building work
2
1. Chief Executive’s Statement
This is our 15th year of providing care and support to children
and young people with life-limiting or life-threatening conditions
and their families. Therefore, it is important that we take the
time to celebrate and thank our staff, volunteers and community
partners for being with us on this journey so far. We are also
looking forward to the next 15 years and what kind of services
that Richard House should be providing based on the needs of
the local community. As the vibrant community in East London
changes, so does its health and social care needs.
Developing our model of care
The core purpose of Richard House will always be to ‘accompany families with children and
young people with life-limiting/life-threatening and complex healthcare conditions during the
child or young person’s journey through life and through death, creating positive experiences
along the way which become good memories for the future’. The way in which we will
achieve this continues to evolve and therefore this year we have focussed on redefining
what our model of care should be. We have considered how much of our service should be
provided from the hospice and what proportion of care could be better provided in people’s
homes, in partnership with other providers of care and also in a wider partnership with the
community. Our new model of care is focused on eight activities, with a monitoring and
evaluation framework so that we can demonstrate our impact to all our stakeholders.
Hospice as a hub
Richard House understand that we need look outwards into the community, which involves
considering how the recently renovated building and beautiful gardens could be better used
by our local community. Our vision is for ‘communities to have space where they can journey
together to create memories, enhancing the lives of children and young people with lifelimiting conditions, and the lives of their families, through life, death and beyond’. The physical
environment of the hospice has a lot to offer as venue for other community organisation who
enrich the lives of the children and families who access Richard House. The plans to develop
the hospice as a community hub were developed with this in mind.
Working with local partners
We work in partnership with other local providers of care, with statutory commissioners as
well with the wider local community, in order that we continue to be part of the range of
services available locally for children with palliative care needs. Given the challenging financial
climate it is more important than ever that we work with our commissioners to ensure that
children and families continue to receive the holistic support that they need. In an economic
situation where health and social care organisations are frequently asked to provide more
with fewer resources, independent children’s hospices can have a key role in the development
of financially sustainable, higher quality services. This approach is essential if Richard House
is going to achieve its mission that we want to be ‘at the heart of palliative care in our local
community for children, young people and their families’. Demonstrating our impact is
therefore an imperative.
Ensuring quality – monitoring and evaluation
In 2014/15 there has been an ongoing focus on the development of our monitoring and
evaluation processes in order to embed the improvements to our quality and information
3
systems. This work will continue into 2015/2016 as we have made significant progress in
understanding the strengths in our service provision and the areas for future growth. We
see good monitoring and evaluation processes as a key tool to help us achieve our goal of
providing excellent services for the families who access Richard House.
We are due another Care Quality Commission (CQC) inspection in 2015. Tracie Dempster,
Director of Family and Care Services, was interviewed and approved as our new Registered
Manager in March 2015. Our CQC inspection in February 2013 resulted in positive feedback
and we have looked for ways to improve the service since then, so we hope that our 2015
inspection will reflect that.
We have recently been re-inspected by the Caspe Healthcare Knowledge System (CHKS),
which provides our quality assurance kite mark, and we have gained our reaccreditation which
remains valid for the next two years (subject to ongoing validation).
Strategic approach
All of the work highlighted above could be summed up by the two-fold approach described in
our Strategic Plan, 2014-2017:
• To provide care and support for children and young people with life-limiting and lifethreatening conditions, and their families, and to do this in partnership with other providers
of care.
• To provide support for the wider, local community to recognise their ability to respond in
dealing effectively with death, dying, loss and grief. This, in turn, enables a wider support
network for children and young people with a life limiting and life threatening condition,
and their families.
This report is an accurate and honest appraisal of our services as delivered in 2014/15.
Peter Ellis,
Chief Executive,
Richard House Children’s Hospice
4
2. Review of services
Richard House Children’s Hospice provides a range of services to support children, their families
and carers holistically and enable them to participate in activities which allow for supported
family time, contributing to the ultimate goal of enhancing families’ lives.
The main care services for children and young people are underpinned by the family support
services and are designed to support the whole family physically, spiritually and emotionally:
Care services:
• Short breaks (respite) – both day care and residential, each short break is designed for the
needs of the individual child or young person and their family
• Outreach service – due to be introduced in 2015, this service will take the hospice care out
of the building and into people’s homes, where this is a better choice for the family
• Play specialist – targeted intervention and support through play
• Symptom control – a period of more intensive clinical care to stabilise a child’s health and
help to keep them out of hospital
• Step down care – a managed process which helps families take their children home from
hospital sooner
• End of life care – care planned for the last days and hours of life
• Post bereavement suite – the Rainbow Suite is a peaceful and private suite where families
can spend time with their child after death
Family support services:
• Transition services – for young people 14 years and above to assist with their journey into adulthood and accessing adult services
• Bereavement support
• Music therapy
• Art therapy
• Mum’s group
• Dad’s group
• Siblings group
• Family trips and activities
5
What families say about Richard House:
‘The quality of time and care and compassion you showed was more than anything I can thank
for. He enjoyed a lot here ……… Also thank you for supporting me during my hard time’.
‘From the moment the staff knew our son, ……, was on his way to Richard House, the
genuine attention, love and warmth shown to us by everyone at Richard House has been
overwhelming. Thank you to Richard House Children’s Hospice’.
Our Strategic Plan (2014-17) summarises our work using the diagram below:
6
3. Improvement Priorities for 2015-16
3.1. Improvement 1: Assessing Impact and Outcomes for Children, Young People and
Families
In 2015/16 we will continue to embed the work begun in 2014 to improve our quality and
information systems. This continued focus is essential if we want to provide evidence of the
excellent quality services that meet the needs of our local community.
We are committed to providing a quality experience for all stakeholders by:
• making our values and culture explicit and fit for purpose
• identifying key processes and systems
• developing effective organisational arrangements
• focusing on internal processes which are bound up with aims and objectives
• fostering ownership and commitment among staff
Better evaluation of more meaningful outcome measures
As described in our last Quality Account, Richard House identified that we needed to have
better information about how the service was performing, better evaluation processes and
more clearly defined outcomes. We also recognised that an improved system to measure
impact and outcomes for families would need to have a qualitative element rather than a
purely quantitative measurement, such as the number of nights respite provided. By getting
better at asking children, young people, their families and carers their views and opinions
(through narrative and questionnaires) we are able to continually develop our model of care to
meet the needs of our communities.
As part of new model of care, we have developed a new monitoring and evaluation framework
with meaningful and measurable outcomes. The following outcomes are expected from each
of the eight service activities within our new model of care:
Outcomes for new model of care (table 1)
Service
Outcome
Hospice as a Hub
• Improved Quality of Life
• Dignified death in place of choice
Outreach/Hospice at Home
• Increased choice in receiving care
Residential Respite
• Increased choice in receiving care
Family Support
• To decrease social isolation
• To empower children, young adults, and adults
with a range of coping strategies
Advice and Guidance for Families
• Increased confidence for families
Advice and Guidance for Other Providers • Increased confidence for professionals
Transition
• Increased empowerment
• Increased confidence and reduced social
isolation
• Enhanced familiarity with adult social care
• Increased independence and life choices
• Broadened support network
• Increased access to services
Community Engagement
• In development during 2015
7
After defining our service outcomes with the Charities Evaluation Services (CES) in 2014 we
aim to establish the refined model of care in 2015/16 by:
• ensuring the delivering of quality and evidence based practice
• making the best use of resources
• continuing strategies to support families to cope and strengthen their resilience.
8
3.2. Improvement 2: Implementing the revised model of care
During 2014/15 we redesigned our model of care in response to direct feedback from families,
other partners and the Charity Evaluation Service (CES). There is evidence gathered through
previous pilots and evaluations from other hospice at home providers around preferences for
community outreach programmes. Our own Rapid Response Home Care/End-of-Life Pilot
(2011), funded by and worked within the Department of Health, aims to develop services which
are relevant to and based on an understanding of local needs and provide more care closer to
home.
Current versus new model of care (table 2)
Current Richard House Model of Care
Services
• Residential service
• Day care
• Limited Family Support
• Transition Pilot
Staff
• Care Team
• Limited Family Support Team
• Limited Transition Team
New Richard House Model of Care
• Hospice as a hub
• Outreach/Hospice at Home
• Residential Service (including day
care)
• Extended Family Support
• Advice and Guidance for Families
• Advice and Guidance for Other
Providers
• Transition Service
• Community Engagement
• Community Outreach Team
• Residential Care Team (at full
complement)
• Extended Family Support Team
• Extended Transition Team
Some factors influencing the revised model of care are:
• The most up to date data indicated that there are almost 3000 children or young people
with a life-limiting condition live in east and north London, the area served by Richard
House1
• The work offered through the Charities Evaluation Service (CES) using the Theory of
Change indicates that there are various activities Richard House could undertake to support
the ultimate aim that the lives of children and young people with life limiting conditions and
their families are enhanced. This work is demonstrated in Diagram (2).
• This also recognises that families are likely to be socially isolated and that the quality of
family life is compromised due to the attention required for a child/young person with a
disability and a life-limiting condition.
• The public health approach (community engagement) to palliative care suggests that a
broader approach complementing clinical and professional services is essential if children,
young people and their families are able to receive regular and sustainable care and support.
Life-limiting and life-threatening conditions in children and young people in the United Kingdom; national and
regional prevalence in relation to socioeconomic status and ethnicity (Fraser et al 2012)
https://www.togetherforshortlives.org.uk/assets/0000/1100/Leeds_University___Children_s_Hospices_UK_-_
Ethnicity_Report.pdf
1
9
The planning triangle that Richard House will undertake as facilitated by CES.
We have planned out the activities in support of our model of care and in turn our strategy. It
will identify and highlight the key areas of delivery and how we will achieve our goals. The key
services in the model of care are:
Elements of model of care (table 3)
Service
Description
Hospice as a Hub
Families can access symptom management and end-of-life
care 24 hours a day 52 weeks of the year, either through
telephone support, in patient stay or home visit.
Outreach/Hospice at Home To provide the opportunity for families to have end-of-life care
and/or respite at home or in their place of choice which could
also be within school, hospital or social care setting.
Residential Respite
To provide overnight and day care respite to Richard House’s
maximum potential 52 weeks of the year.
Family Support
For Richard House to establish an evidenced based programme
of family support activities.
Advice and Guidance for
For families to have a greater understanding of their child’s
Families
conditions and how to manage them.
Advice and Guidance for
24/7 service for referral and information.
Other Providers
Transition
Joint transition project between Richard House and St Joseph’s
Adult Hospice to support young people in transition between
children’s to adult palliative care services.
Community Engagement
To provide a wider support network to families by offering
unique support for the wider local community to recognise
their ability to respond in dealing effectively with death, dying,
loss and grief.
10
It will be important to determine what the unique role of Richard House care services can be
within the local community so that we are not duplicating existing services. Therefore, further
development will involve consultation with a range of service user groups, key stakeholders
and groups of those already providing community care. We aim to carry out this broader
consultation in 2015/16.
11
3.3. Improvement 3: Hospice as a hub
Families are at the heart of everything that Richard House strives to do and are therefore at the
centre of our model of care: they control how they choose services and where they want those
services to be delivered.
Richard House Hospice Hub
Richard House Services
Other Partners
- Hospice as a Hub
- Outreach
- Residential Care
- Family Support
- Advice & Guidance
- Transition
- Community Engagement
- Social Services
- Health Care Services
- Education
- Community Groups
- Voluntary Sector
Children, young
people and families
The hospice as a hub element of the service change is centred around making the hospice
services as accessible as possible when and where they are needed. The goal is that families
can access symptom management and end of life care 24 hours a day 52 weeks of the year,
either through telephone support, inpatient stay or home visit.
This service commenced in April 2015 by offering the following services, activities and ‘Family
Matters’ clinics for families to access, whether they are staying for residential respite, daycare or attending in a drop-in capacity. Once these activities are established, a wider range of
activities will be made available for the community to access:
•
•
•
•
•
•
•
•
•
•
Great Ormond Street Hospital (GOSH) Clinic: Palliative Care Consultants offer healthcare
assessments, advice and guidance.
Pharmacy Clinic: medication management advice and guidance from Pharmacists (via our
service level agreement in place with Thomas and Guys NHS Trust).
Law Works: free legal advice service for families run by Law Works pro bono solicitors (as
part of the Together for Short Lives programme).
Transition Advice: advice and guidance for young people, post 16, on further education,
independent living skills, employment and training, delivered jointly with Orchard Hill
College.
Craft Activities: therapeutic activities delivered by specialist staff.
Occupational Therapy and Physiotherapy: delivering support for mental and physical
health and wellbeing.
Complimentary Therapies: specialist alternative therapies delivered by professionals.
Symptom Management: to manage the health of children and families.
On Call Service: out-of-hours service for rapid response urgent care, advice and guidance,
managed by senior nursing staff.
Advice and Guidance Service: 24/7 support for families and professionals via email, phone
and face-to-face.
12
• Other Activities: stalls to sell Richard House items such as cards and mugs, crafts from local
businesses, coffee mornings and other community engagement activities and use of the
café.
• Crèche: childcare available whilst activities/sessions/clinics are taking place.
There is a national element to our work as we partner with national law firm Law Works, who
work in conjunction with national body Together for Short Lives. We also hope to share the
Hospice as Hub model with other children’s hospices. On a regional level, by working with
local partners to delivering session/clinics and building professional relationships we hope to
increase referrals for our services.
13
4. Audit
4.1. Audits Statement
During 2014/15, Richard House have added to both our internal and external audit schedule
to strengthen our clinical governance. The external audits that Richard House contributes to
include:
• Newham Safeguarding Risk Matrix (LADO) – Richard House contributes to Newham’s risk
matrix. This tool highlights the strengths and areas for improvement in Richard House’s
processes. This is an addition to our previous audit schedule.
• Pharmacy audit by Guy’s and St Thomas’ NHS Foundation Trust (GSTT) – Richard House’s
medication use is audited by GSTT
• Great Ormond Street Hospital for children NHS Foundation Trust (GOSH) caseload review –
GOSH regularly reviews the treatment plans for all the children on our shared caseload.
• NHS England Controlled Drug Audit – Richard House reports on controlled drug use
quarterly to NHS England
• CHKS - Richard House Children’s Hospice chooses to undergo an external audit every
two years by Caspe Healthcare Knowledge Systems (CHKS), as part of the CHKS quality
accreditation process. The audit took place in March 2015 and reviewed all aspects of the
documentation and recording of care within the hospice. The hospice was accredited for
another two years further to our audit.
4.2. National Audits
Richard House takes part in national audits as part of the national, umbrella children’s hospice
and palliative care charity, Together for Short Lives.
Richard House is contributing further information to the ongoing Palliative Care Funding
Review (PCFR). The pilot site was established to collect data as part of a DH (later NHS England)
project to develop a per-patient palliative care tariff as laid out in the 2011 Palliative Care
Funding Review (PCFR).
The aims of the data collection are:
• To provide evidence of the sort of palliative care provision being provided
• To test the cost classification system put forward by the PCFR team.
The Director of Family and Care Services is a member of the Healthcare Quality and
Improvement Partnership (HQIP) National Clinical Audit Forum.
The Director of Family and Care Services receives minutes from the NHS National Advisory
Group on Clinical Audit and Enquiries (NAGCAE).
Richard House is not directly involved in National Clinical Audit and Patient Outcomes
Programmes (NCAPOP) but at times may be asked to contribute on relevant programmes
such as Clinical Outcome Review Programmes including the Maternal, Newborn and Infant
Programme and, very likely, the pending larger Child Health Programme in 2015.
14
4.3. Local Audits
4.3.1. Clinical Governance
The Clinical Governance Committee advise and discuss recommendations. They are
comprised of;
• Dr Finella Craig, Consultant in Children’s Palliative Care, Great Ormond Street Hospital
(GOSH)
• Katrina McNamara, Director of Plkc and Practice, Together for Short Lives
• Two members of the Senior Management Team, including the Director of Family and Care
Services
• Three Trustees
• Consultant Pharmacist (joined in 2014)
4.3.2. Clinical Audits
Areas that may be considered and which are regularly audited are:
• Medication management
• Accidents
• Infection control such as hand washing and equipment
• A comprehensive clinical record audit on a monthly cycle which includes: referral details,
end of life care plan, observation and consultation reports made by all health professionals
and arrangements for continuing care. New elements to be audited will be a more robust
core care pathway including preferred place of death.
• Controlled Drug Audit – This is undertaken by the Director of Family and Care Services on
a quarterly basis using the Help the Hospices template and will now be undertaken by our
pharmacist.
• The Director of Family and Care Services attends the Controlled Drugs Local Intelligence
Network [LIN]
4.3.3. Clinical research
Richard House Children’s Hospice has a policy that we do not undertake research at this time.
This policy is reviewed regularly, mindful that we may need to take up a research role as we
continue to consider the impact of our work.
15
5. Care Quality Commission (CQC)
5.1. Care Quality Commission Registration status
Richard House Children’s Hospice is regulated by, and registered with, the CQC in the following
way;
Registered Provider:
Registered Manager:
Peter Ellis, Chief Executive, Richard House Trust
Tracie Dempster, Director of Family and Care Services.
Overview of the service
Richard House provides care and support for children and young people with life-limiting/
life-threatening and complex healthcare conditions, and their families, in North East and North
Central London. The services include specialist nursing and medical care, short breaks and
respite care, end of life care, and family support before or after death.
Type of service:
Regulated activities:
Hospice services
Diagnostic and screening procedures
Treatment of disease, disorder or injury
16
5.2 What the Care Quality Commission says about us
Health service watchdog the Care Quality Commission (CQC) made an unannounced visit on
27 February 2013 to Richard House Children’s Hospice. In particular they looked at the personal
care or treatment records of people who use Richard House and observed how people were
being cared for and talked with carers, family members and staff.
They assessed Richard House on a number of criteria, all of which were met, for its care of
infants, children and young adults with life-limiting, life-threatening conditions and support to
their families.
People interviewed during the inspection told the CQC that “the hospice provided a lifeline”.
Staff at the hospice were commended to the CQC with one parent telling the watchdog, ‘The
staff are never phased by my son’s condition’.
The CQC commented on the “consistent one-to-one nurse to patient allocation” as well as the
play and care support workers who provide additional services. The inspectors also noted that
volunteers provided a range of services within the hospice, which were “positively evaluated by
patients and their families and staff”.
Children who used the service told the CQC that they liked the fact they could personalise
their rooms, that their hobbies were known and accommodated and said they particularly liked
participating in arts and crafts sessions and parties at the hospice.
The CQC praised Richard House for the way in which its staff kept up to date with, and applied
new innovations in practice as well as the way the hospice worked collaboratively with a
number of external agencies and professional networks.
Richard House was assessed on, and met all the requirements on, five standards:
The full CQC report can be viewed here:
www.cqc.org.uk/location/1-112020930/inspection-summary
17
6. Our wider partnership networks
In addition to submitting this document to NHS England, the Quality Account will be made
available to a wider network of partners as part of our commitment to transparency and
improved partnership working. This will include amongst others:
• Families – our most important partners
• Health, social care and education colleagues – the hospitals, community teams, social care
and schools who work with our care team to provide the best possible care and support to
the children and families on our caseload
• Clinical Commissioning Groups (CCGs) – responsible for health commissioning
• Local Authorities – responsible for social care commissioning
• Together for Short Lives and other hospice colleagues – as part of our working together to
improve children’s palliative care
• HealthWatch – responsible for acting as the voice of the community
• Health & Wellbeing Boards – responsible for Health and Wellbeing Strategy for each
borough
We will encourage feedback and any questions generated by this document as part of our
engagement with and accountability to the wider community of which we are part.
18
7. Data management and handling
Richard House holds detailed information on service users, be they children, young adults, their
families or carers in order to provide the best possible care tailored to their individual needs.
Richard House handles a great deal of very sensitive and high confidential personal
information on a daily basis and recognise that all people, regardless of their age, have rights to
confidentiality. The information is often family specific and may include health details or other
personal details. The confidentiality of this information must be respected and maintained at
all times. Everyone, therefore, is required to act in such a manner as to uphold the principle of
confidentiality.
The following is strictly adhered to;
• The Common Law Duty of Confidentiality; This means that information given in confidence
must not be disclosed without a person’s consent unless there is a valid justifiable reason
such as a requirement of a statute of law or it is judged that there is an overriding public
interest to do so.
• The Data Protection Act (1998); This is covered by the policy on Data Protection
• The Caldicott Report; report undertaken by the Caldicott Commission which made a
number of recommendations on the use and disclosure of patient identifiable information.
The Caldicott guardian is the Director of Family and Care Services.
• Professional Codes of Practice; All health professionals must adhere to their professional
codes of practice which include significant sections on patient confidentiality.
We maintain hard copy and database information for the children using our service. All children
and young people have a care record, which is held securely in filing cabinets, in a locked
office, with access granted only to relevant staff.
19
7.1. Quality of systems and data collection
The care database and paper based records hold NHS numbers and other key information for
all of the children and young people using the service. This system is accessed by a limited
number of people whose role requires them to have access to information about individual
service users, such as the care team nursing staff. Other staff requiring activity data, but
not on a patient identifiable level (for example, to analyse activity patterns) will request this
information from the care team administrators who have permission to view confidential
information and who can create an anonymised report.
7.2. Using data to understand Richard House
We use data to monitor and improve the way that the 312 families registered make use of our
services. At the end of March 2015, there were:
•
•
•
•
•
•
•
•
•
126 children open and active (using one or more of the services offered)
45 open but have not used the service over the last 12 months
7 pending (awaiting confirmation of booking dates from families)
141 post bereavement families (90 of which are inactive)
13 closed bereaved families
38 bereaved families open and receiving a significant amount of services
147 bereaved siblings
144 siblings accessing activities or Family Support services
51 Young people on the joint Transition caseload with St Joseph’s (8 of which are under St
Joseph’s and 43 on the Richard House caseload)
As part of our active eligibility review process, Richard House periodically reviews and closes
those on the caseload who have been non-active service users for a significant period of
time (usually over two years). Richard House works closely with families before any closure is
finalised to ensure the family can discuss their current needs, agree and fully understand the
closure process. The post bereavement caseload at Richard House has recently been reviewed
and a new ‘inactive’ category has been added to the care database for those bereaved families
who have not accessed for many years. This enables Richard House to differentiate between
the active caseload and those people who are eligible for further services, but who are not
currently seeking further support, without having to contact these families and potentially
cause them distress. There is now a more realistic number of families that are significantly
accessing various activities and therapies for bereavement support and we will continue to
review this regularly.
7.2.1. Monitoring referrals
Richard House received 48 new referrals during 2014/15. Table 4 below provides a breakdown
of the outcome of these referrals.
Referrals in 2014/15 (table 4)
Referral status
Numbers
Referral pending as period commenced
20
Referrals during period
48
Referrals accepted
43
Referrals declined
14
Referral withdrawn
11
Referral withdrawn due to death of the patient 0
Referrals pending as the period ended
0
20
Referrals in 2014/15 were received from a range of sources. We analyse the source of referrals
to ensure that we maintain the necessary working relationships to be an integral part of the
local health and social care provision. As we would expect, Table 5 shows that the majority
of our referrals are from the Children’s Community Nursing Teams (CCNTs) who care for the
children and young people with complex health care needs in the community.
Referrals source (table 5)
Referral status
Health visitor
Medical
Nursing
Social Services
Hospital
Numbers
2
10
32
3
1
7.2.2. Reducing barriers
We monitor the age and genderof children and young adults using the service so that we
can be sure that our caseload is representative of the demographic who are eligible to use
our services. Should this not be the case then we would investigate why children of a certain
age, or gender, were under-represented in the caseload and whether this was as a result of an
access barrier that we could resolve. It is not unexpected that Table 6 shows that we have a
higher percentage of male children than female as certain life-limiting genetic conditions are
carried through the female line but only expressed in male children.
Referrals and activity by gender and age (table 6)
Male – referrals Male –
accepted
Children and
young people
supported
Newborn to 28
0
0
days
28 days – 4 years 15
20
5 years – 11
years
12 years – 15
years
16 years – 18
years
19 years – 21
years
22 years – 25
years
Female –
referrals
accepted
0
Female –
children and
young people
supported
0
10
17
6
53
9
35
1
19
2
17
0
18
0
8
0
6
0
5
0
0
0
1
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7.2.3. Ensuring equity of access
Ethnicity is recorded to ensure that the children who access Richard House are representative
of the local demographic (see Table 7 below). Should we identify that a particular ethnic group
is attending the service less, it would suggest that there are barriers to access within that
community that need to be addressed. We can target our community engagement to finding
out why this is and how we can make our services better tailored to the needs of all our local
community and therefore more accessible.
Referrals and activity by ethnicity (table 7)
Ethnic Origin
Children whose referrals
were accepted during
2014/15
Any other ethnic group
1
Arab
1
Asian or British Asian – Any
1
other
Asian or British Asian –
8
Bangladeshi
Asian or British Asian –
1
Chinese
Asian or British Asian – Indian 5
Asian or British Asian – Not
0
stated
Asian or British Asian –
6
Pakistani
Black or Black British – African 8
Black or Black British –
1
Caribbean
Black or Black British – Not
0
stated
Black or Black British – Other 0
black
Mixed – Any other
1
Mixed – White and Asian
0
Mixed – White and Black
1
African
Mixed – White and Black
0
Caribbean
White – Any other
1
White – British
3
White – English
3
White – Gypsy or Irish
0
Traveler
White – Irish
0
White – Northern Irish
0
White – Not stated
1
White - Scottish
0
White - Welsh
0
Children Supported during
2014/15
3
1
1
44
1
15
6
30
32
13
1
6
2
1
3
2
9
29
8
0
1
0
1
0
0
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7.2.4. Using data to understand local need
Information on diagnostic categories is maintained to assist the service in providing the correct
level of support to those children and young adults requiring specialist palliative care. It is also
useful to understand local need by caseload and geographical area.
Caseload by diagnostic category (table 8)
Diagnostic Category
Acquired - other
Congenital
Congenital - other
Genetic - Neurological
Genetic - Other
Metabolic
Neurological - Acquired
Neurological - congenital
Neurology
Oncology
Organ failure - Acquired
Organ failure - Congenital
Other
Respiratory
Undiagnosed
Data missing
Numbers
2
1
10
8
42
11
28
76
1
8
1
13
2
2
3
4
7.2.5. Using data to monitor end-of-life care planning
Hospice care sets out to plan the most positive experience of life possible for each child or
young person, which includes planning for death. If a family would like their child to be
allowed to die at home, or in the hospice, instead of in hospital, we work with the hospital and
community teams to ensure that this is part of their Advanced Care Plan. We then monitor if
the child or young person was able to die in the place of their choice. If they did not, we will
try to find out why this happened to see if there is any way that the circumstance could be
avoided in the future through better pathways and communication.
Place of death (table 9)
Place of Death
Home
Hospital
This hospice
Unknown
Numbers
7
4
2
2
Both families who opted to use Richard House as their preferred place of death also used the
Rainbow Suite, our bereavement suite where parents can be with their child after death. None
of the hospital deaths used the Rainbow Suite but do continue to access post bereavement
services. Three of the home deaths used the Rainbow Suite and there has been coordinated
bereavement support with these families from both the local community palliative care service
(Newham Diana Team) and Richard House. We will continue to work over the coming year to
improve documentation of preferred place of death in conjunction with better use of Advance
Care Plans.
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The majority of children’s hospice care is about helping the child or young person and their
family have the best possible experience of life. End-of-life care, referring to an individual’s
last days, is a comparatively small part of children’s hospice care, as we can see reflected in the
figures below.
Numbers of deaths by age band (table 10)
Age band
Newborn to 28 days
28 days – 4 years
5 years – 11 years
12 years – 15 years
16 years – 18 years
19 years – 21 years
22 years – 25 years
Number of deaths
0
7
4
4
0
0
0
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7.3. Errors and coding
Data is not regularly collected or collated on ICD10 codes as Richard House uses the Together
for Short Lives (previously ACT) eligibility criteria to aid in the referrals process.
The criteria contains four categories which are defined as follows:
Together for Short Lives Categories (table 11)
Category
Description
Group 1
Life-threatening conditions for which curative treatment many be feasible
but can fail. Where access to palliative care services may be necessary
where treatment fails or during an acute crisis, irrespective of the duration
of that threat to life. On reaching long-term remission or following
successful curative treatment there is no longer a need for palliative care
services.
Examples: Cancer and irreversible organ failure.
Group 2
Conditions where premature death is inevitable, where there may be
long periods of intensive treatment aimed at prolonging life and allowing
participation in normal childhood activities.
Examples: Cystic fibrosis and muscular dystrophy.
Group 3
Progressive conditions without curative treatment options, where treatment
is exclusively palliative and may commonly extend over many years.
Examples: Batten’s disease and mucopolysaccharidosis.
Group 4
Irreversible but non-progressive conditions causing severe disability leading
to susceptibility to health complications and likelihood of premature death.
Additional criteria apply to this group.
Example: Severe multiple disabilities such as following brain or spinal cord
injuries including some children with severe cerebral palsy and complex
health care needs with a high risk of an unpredictable life threatening event
or episode.
Our caseload has been categorised as follows:
Caseload by category (table 12)
Category
Number of children in category using RHCH service
None set
3
1
24
2
14
3
60
4
130
Any errors in recording are pro-actively identified and highlighted in weekly and monthly
reviews of the case files and then corrected.
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8. Progress against previous improvement priorities
The following areas of progress were identified within the 2013/14 Quality Account:
1: Assessing Impact and Outcomes for Children, Young People and Families
2: Revising the model of care
3: Building work
Improvements 1 and 2 remain as key priorities in 2015/16 for further development. A summary
of progress in 2014/15 can be found below.
8.1. Improvement 1: Assessing Impact and Outcomes for Children, Young People and
Families
Monitoring and evaluation – measuring success against outcomes
In addition to the work carried out by the Charity Evaluation Service to establish what
our overall aims should be, Richard House has been reviewing the outcomes for all of our
individual projects and services. We have defined clear desired outcomes which can be
evaluated by qualitative and quantitative measures that are both meaningful and do not create
an additional burden of work for the care team (see Improvement Priorities for 2015-16 on
page 8 more information).
The long term outcome for Richard House is to enhance the lives of children and young
people with life-limiting, or life-threatening conditions, and those of their families. When we
asked families what they found most challenging, they told us that it was social isolation from
their own community, friends and wider family which created a significant strain on the family,
with a threat to family breakdown. Feedback has demonstrated how valuable families find our
support services, such as the activity days, because they can have fun as a whole family instead
of just focusing on the health needs of one child. We have also found that the events and
groups aimed at just siblings, mums or dads help those individuals within that family to create a
supportive network of people who share similar experiences and who can empathise with their
situation.
Systemic review – seeking continual improvement in quality
Richard House were accredited for another 2 years by Caspe Healthcare Knowledge Systems
(CHKS) in 2014. This was our third accreditation cycle and we continue to use this quality
audit and certification process to identify areas for strengthening, improvement and change
across the organisation. The accreditation programmes developed by CHKS relate to the
organisational and clinical management systems of healthcare organisations and not specific
clinical or individual professional practice.
Planning for success – embedding strategy
The main aim of the Quality Improvement Strategy, introduced in 2014, was to ensure that we
meet our outcomes by enhancing as many lives as possible by providing a demonstrably high
quality service. The introduction of better recording, monitoring and evaluation processes has
embedded the consistent use of management information and tools across the organisation. It
has become everyone’s business to ensure the quality of the service by contributing to better
keeping of information and using meaningful service evaluation measures. This provides us
with reassurance from a quality and performance perspective that the actions the organisation
is taking are having a positive bearing on children, young people and families. It also highlights
areas where we could improve, many of which can be easily remedied with changes to internal
process and additional training for staff where this is necessary.
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8.2. Improvement 2: Revising the model of care
In 2014 our model of care came under review with the aim of better meeting the needs
of children, young people and families who access Richard House. It was decided that we
should expand our current service provision to include a wider range of services including
outreach services such as symptom management and short break in the home. The service
will be launched as pilot in Newham during 2015 and then potentially rolled out to other
local CCG areas/boroughs should we be able to secure the necessary funding to invest in the
additional staff required to run a larger service. As this work is still in progress it remains as an
improvement for 2015/16.
Our existing model of care recognised that any child or young person is a member of a family
(with parents/carers, siblings and the wider family) and that they live within their community.
It also recognised the importance of working with the other people who play a significant
role in the child or young person’s life, such as family and providers of health and social
care. However, we realised that our model needed to be updated. For example, many of the
children and young people are now in mainstream education for longer and even entering the
workplace as a young adult as a result of better clinical care available.
Figure 3 below highlights the way that Richard House services should work alongside other
organisations in the understanding that these aspects of the child or young person’s life is
secondary to the importance of their closest relationships.
27
This proposed model of care is based on expertise, feedback and ideas from a variety of
sources including:
•
•
•
•
•
•
Learning from those involved in the development of Hospice at Home services.
Knowledge on the part of those involved in the development of palliative care services.
Findings from the EllenorLions Hospices chYps external evaluation.
Findings from the work of the Charity Evaluation Service.
Lessons learnt following previous efforts to pilot a community service (Rapid Response).
Concurrent work taking place around building community capacity through creating
‘compassionate communities’ to better support families.
• Emerging learning from the Leeds Report2
8.3. Improvement 3: Building work
Creating a new environment for a modern service
When the hospice was first built 13 years ago it was at that time designed specifically for
children and their families. In recognition that our community and their needs have changed
and that standards should always rise with any service Richard House set out to improve the
residential care area of the hospice. The most valuable input to the design process was that of
the children, young people and their families. Issues raised included access, light, room sizes
and communal space. Obscure access makes visitors uncertain, limited natural light raises
anxiety levels, small rooms prevent flexibility and lack of communal space promote feelings
of isolation. In 2010 stakeholders began considering what changes could address these issues
and we employed architects to draft a building proposal. The arrival of the NHS England Capital
Grant Programme in 2012 enabled us to complete this work, complemented by our own capital
fundraising effort.
The renovation of the building was essential to ensure that the residential area of the hospice
remained in keeping with Richard House’s vision: “for communities to have space where they
can journey together to create memories of living and dying”. This project aimed to redesign
aspects of the hospice so that it is more attuned to the medical, physical, psychological and
social needs of children, young people and their families.
What does this mean for families?
Now that this work is completed (February 2015) families can enjoy an easier to navigate,
brighter and better sign-posted residential area. The bedrooms are larger and have improved
hoist arrangements allowing greater maneuverability within the space. Amongst other detail,
the bathrooms are bigger and well ventilated.
Our residential facility changed from 8 beds to 4 beds as part of our commitment to moving
more services into the environments where they are needed the most, such as providing more
services in the family home, instead of the hospice. As we continue to implement our revised
model of care, the monitoring and evaluation of this will be continuously reviewed to ensure
that we respond effectively to the needs and preferences of children, young people and their
families.
2
Life-limiting and life-threatening conditions in children and young people in the United Kingdom; national and
regional prevalence in relation to socioeconomic status and ethnicity (Fraser et al 2012)
https://www.togetherforshortlives.org.uk/assets/0000/1100/Leeds_University___Children_s_Hospices_UK_-_
Ethnicity_Report.pdf
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