QUALITY ACCOUNT
2014-15
Part 1: Statement of Assurance from the Chief Executive on behalf of the Board
Who we are and who we serve
Helen & Douglas House is a hospice service which provides specialist palliative and supportive care
to children and young adults (0-35 years), including support to their families and carers. Helen &
Douglas House is an independent charity based in Oxford and has been providing palliative care for
more than 30 years. We serve a wide geographical area centred on the Thames Valley but extend
care to patients from many counties and Clinical Commissioning Groups – in response to the needs
of the population, and reflective of our level of expertise and experience. We work in close
partnership with professionals in hospital and community settings to provide coordinated care,
alongside the public sector and other voluntary services.
As well as direct delivery of care, Helen & Douglas House has an active profile in regional and
national forums relevant to palliative and supportive care for children and young adults – seeking to
improve practice, structural delivery and funding of services to this population.
Quality at the heart of the organisation
The pursuit of excellence in the delivery of care, and in the support services underpinning them, is a
strategic aim of Helen & Douglas House. Performance against this aim is regularly reviewed by the
Charity’s Trustees either at full meetings of the Board or via ‘assurance’ committees. Care is based
on the unique needs of each individual child or young adult, it is holistic in nature and aims to ensure
that each child or young adult is enabled to live life to the full.
The latest inspection by the Care Quality Commission (CQC) was in July 2013; all standards inspected
were fully met, and the inspection report affirmed that children and young people were protected,
and care was delivered safely. We have been advised of a forthcoming inspection in 2015-16, and in
May 2015 completed our Provider Information Return.
During 2014-15 a number of benchmarking exercises have been carried out alongside a selection of
other children’s hospices in the UK, spanning care and support services. In the autumn of 2014 an
extensive comparison review was undertaken with Naomi House jacksplace as part of a collaborative
process between the organisations. Such reviews affirm the high quality of care achieved. They also
affirm a well developed practice and culture at Helen & Douglas House that successfully identifies
and manages risk to enable an enriched quality of life for our beneficiaries – to the extent that is
individually possible and desired.
Palliative care for children, and even more so for young adults, is a relatively young field and one
that is continually evolving as medical and technological advances increase life possibilities and
expectancies. Helen & Douglas House is committed to collaborative learning to develop both our
own practice, and the wider speciality. In January 2015 the organisation hosted and presented its
first conference focused on “Making a Difference” for young adults with life-limiting conditions,
which attracted professionals from Europe and North America, as well from the UK. Presentations
and workshops explored key elements and the interplay of patient experience, clinical management
and service development. Strongly positive feedback indicated that the day was “influential and
inspiring.”
Priorities for improving quality in the coming year include a patient feedback survey, the continued
focus on Information Governance, the development of systems and processes to ensure compliance
with the Mental Capacity Act and Deprivation of Liberty Safeguards (DoLS), and continued
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monitoring of incidents to ensure the safety of patients at all times. We are committed to ensuring
continued compliance with national standards, and to promoting consistently good practice.
The Quality Account
This is the organisation’s second published Quality Account. The Quality Account is a means by
which we are able to share information publicly about the quality of care we provide, in a format
common to other providers of services to the NHS. It is an assessment of the quality of our
healthcare services in the form of an annual report, demonstrating evidence of our achievements in
the past year and commitment to excellence through our quality improvement priorities.
This report has been prepared jointly by the Clinical Governance Lead and the Associate Director Strategy, and is endorsed by the Board.
To the best of my knowledge the information reported in this Quality Account is an accurate and fair
representation of the quality of healthcare services provided by Helen & Douglas House.
Clare Edwards
Interim Chief Executive Officer
26th June 2015
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Part 2: Priorities for Improvement and Statements of Assurance from the Board
Priorities for Improvement 2015-16
This section presents our priorities for clinical quality improvement in the coming financial year, why
they have been identified, and how they will be achieved, monitored and reported. They span the
three key areas of Patient Safety, Clinical Effectiveness and Patient Experience.
How identified as a
priority
IG audit process
(2013-14).
How priority will be
achieved
Implement actions
identified in the
Information
Governance
Improvement Plan.
Deprivation of Liberty
Safeguards (DoLS)
Legislation and CQC
requirements for
carrying out registered
activities.
Clear guidance will
be sought from
individual statutory
supervisory bodies
and systems
developed to meet
these requirements.
Patient Experience:
Develop tools to monitor
patient experience
Care Quality
Commission and
contractual
requirements; good
practice.
Health and Social Care
Act 2008, Code of
Practice for the
prevention and
control of infections
and related guidance.
Regular reporting of
incidents affirmed a
good paper system
already in place, but
highlighted the
potential to increase
efficiency and
effectiveness through
an electronic system.
Undertake a patient
feedback survey.
How progress will be
monitored
All requirements in
the Information
Governance SelfAssessment tool will
have achieved at
least Level 2.
There will be clear
systems and
processes in place for
identifying when an
authorisation is
required.
A training package
will be sourced and a
plan put in place to
roll out training to all
care team staff.
Report from patient
feedback survey.
Implement
recommendations
made in recent
Infection Control
Audit.
Annual audit using
the Hospice UK
Infection Prevention
and Control Audit
Tool.
The new Datix
system is being
adapted to meet the
organisational
requirements and
training is being
arranged for all
users, with the aim
of going live in
September 2015.
The development and
implementation of
the new system will
be monitored by the
Director of People
Resourcing and
Operations.
Priority Area
Information Governance:
Improve information
governance (IG)
throughout the
organisation.
Infection Prevention and
Control
Patient Safety:
Implementation of new
incident reporting system
(Datix)
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Statements of Assurance from the Board
This section includes statements that all providers must include as part of their Quality Account.
Some statements are less applicable to providers of specialist palliative care, such as Helen &
Douglas House; where this is the case a brief explanation is included.
Review of Services
Services Provided
During 2014-15 Helen & Douglas House provided services described below (to the NHS and/or
through its charitable remit and funding).
Helen & Douglas House has provided specialist palliative and supportive care via an interdisciplinary
team that includes Consultants in Palliative Medicine (paediatric and adult) alongside Registered
Nurses, Care Workers, specialist Therapists (physiotherapy, occupational, music, complementary),
Social Workers, Teacher, Chaplain and Counsellors. Specialist trained volunteers are increasingly
supporting the holistic care of patients and families as a complement to contracted staff, enabling
the achievement of a higher quality and more responsive experience for service users beyond their
clinical needs.
In-patient services are provided at the two hospice houses (Helen House (0-18 years) and Douglas
House (16-35 years)). These are age-appropriate environments equipped to a high standard in
support of patients’ and families’ holistic needs.
An increasing level and extent of care is also delivered “out of house” in local communities and
hospital settings, to support families and professionals in their provision of more complex palliative
care in those environments. Psychological and practical support is offered to families through oneto-one and group interactions that take place at the hospice, in families’ local settings, and at
external venues.
Services provided include:
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Symptom management (routine and complex).
Medically-supported short-break respite (at the hospice).
Stepped-discharge from hospital to the hospice to manage patients’ return home.
Emergency care (for medical or social emergencies, or for lack of capacity and expertise in
public sector provision).
Day care (in-house) and home visits.
End-of-life care.
24 hour telephone support for patients, families and professionals regarding symptom
management and end-of-life care.
Specialist medical and clinical advice to NHS community and hospital teams, and to other
hospice care providers. (This includes via honorary contracts with the Oxford University
Hospitals NHS Trust for senior clinicians at the hospice.)
Care coordination and planning (including Advance Care Planning).
Training and education (professionals and families).
Physiotherapy, occupational, music and complementary therapies to support individuals’
development, enable greater independence, and improve quality of life.
Psychological, spiritual and bereavement support for patients and families/carers, including
siblings.
Advocacy for service users (patients and families).
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Practical help for families (via a supported volunteer service run by the hospice).
Strategic contribution to the development of the sub-specialty of paediatric palliative care.
Helen & Douglas House has reviewed all the data available to us on the quality of care in these
services.
Funding of Services
Services provided by Helen & Douglas House are funded through a combination of fundraised
income/voluntary donation and contributions from public sector bodies (health and social care).
Where a public sector contribution is made, this is only ever a partial contribution to the cost of an
individual’s care at the hospice. For the year 2014-15 public sector contributions to care represent
just 12% of the hospice’s total expenditure on care services.
100% of the income generated from the provision of services to the NHS has been spent on
providing those services.
Helen & Douglas House has continued to be in receipt of an NHS England Children’s Hospice Grant
which provides an invaluable foundation of public sector funding (equivalent to c.5% of the hospice’s
total expenditure on care services for both children and young adults).
During 2014-15 Helen & Douglas House has continued to seek clarification from the NHS regarding
the implementation of specialised commissioning (via NHS England) for paediatric palliative
medicine. Such clarification has not been forthcoming; Helen & Douglas House receives no direct
commissioning contribution towards the care that it is providing at this level.
In 2014-15 NHS local commissioning agreements continued for NHS Swindon and NHS Wiltshire
Clinical Commissioning Groups (CCGs) for children’s palliative care – via joint arrangements with the
respective Local Authorities. An additional children’s palliative care contract was awarded from April
2014 by NHS Nene and Corby CCGs via an Any Qualified Provider process. These commissioners
contribute circa 30% cost of the in-patient care that is provided to eligible children from their CCGs
who use Helen & Douglas House.
The core patient catchment for Helen & Douglas House is represented by the CCGs within the NHS
Thames Valley Strategic Clinical Network (SCN) (broadly covering the counties of Oxfordshire,
Buckinghamshire, Milton Keynes and Berkshire). As in previous years, in 2014-15 commissioners
from these CCGs have continued to decline to make any funding contribution towards children’s
hospice care at Helen & Douglas House.
Helen & Douglas House has repeatedly sought to engage in a constructive dialogue with
commissioners about models and quality of care, added value and sustainability of services. This has
been particularly challenging during periods of repeated NHS reorganisation and where such efforts
have not been reciprocated by individual commissioners.
During 2014-15 the Thames Valley SCN (Children & Maternity) included a recommendation to all the
CCGs in this region that an equitable funding contribution be made to children’s hospice services
(equating to c.30% cost of care). Helen & Douglas House is hopeful that it may receive a funding
contribution from some of Thames Valley CCGs during 2015-16, however there appears to be no
formal requirement for CCGs to respond to SCN recommendations. Significantly, Oxfordshire, the
greatest recipient of services from Helen & Douglas House (see Appendix 1), continues not to make
any funding contribution to children’s care provided by the hospice – via either the CCG or the Local
Authority; engagement remains a challenge.
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Aside from Swindon and Wiltshire, no Local Authorities have made a financial contribution to the
cost of children’s hospice care; Helen & Douglas House receives no Short Breaks funding from any
Local Authority. A children’s disability Short Breaks contract was tendered by Oxfordshire County
Council in early 2015, however the scope of the tender meant it was inappropriate for the hospice to
apply (as it was largely outside the hospice’s core service focus).
The funding landscape and experience for young adults is different from that for children. Public
sector contributions to the funding of young adults at Helen & Douglas House are typically
negotiated on a case-by-case basis with health and/or social services, or, increasingly, with the
holder of a Personal Budget. Considerable effort is required by the hospice to negotiate these
individual agreements, and funding is increasingly hard to secure.
In a climate of sustained pressures on both public sector and charitable finances, lack of meaningful
commissioner engagement locally in dialogue about sustainability, system and service design is not
only disappointing but of significant concern for the population that we seek to serve – not just in
the current year, but for years to come.
Lack of clarity regarding the commissioning of specialised services through NHS England, and of the
state’s funding responsibilities regarding palliative care, also remain of significant concern.
Nationally, inequity in the funding of children’s palliative care has long been recognised – a point
reinforced by the Palliative Care Funding Review. During 2014-15 Helen & Douglas House has
actively engaged in national consultations regarding the Palliative Care Funding Review and
continues to participate in evaluations of its proposals. The hospice continues to seek a fair playing
field that supports the sustainability of specialist services through equity of access to, and funding
for, palliative care for children and young adults.
Where public sector funding agreements are contingent on an NHS contract, Helen & Douglas House
strongly advocates for a reduction to the bureaucratic burden – in line with the recommendations of
the NHS Five Year Forward View.
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Participation in Clinical Audits
National Clinical Audits
During 2014-15 Helen & Douglas House did not participate in any national clinical audits or national
confidential enquiries as there were none that related to specialist palliative care.
Local and In-House Clinical Audits – Frameworks for the Assessment of the Quality of Care
Within Helen & Douglas House, quality of care is monitored throughout the year via a governance
programme which includes regular Executive Team meetings, monthly Clinical Governance
meetings, bi-monthly Clinical Assurance Committee meetings that feed in to the Trustee Board, and
an annual schedule of clinical audits. Staff and service users are encouraged to report any concerns,
incidents or exceptional practice (good or bad) within a supportive and open management culture.
The assessment of clinical quality is driven through a comprehensive audit programme managed by
the Clinical Governance Lead in support of legislative and regulatory requirements, and clinical best
practice. High quality clinical practice is supported by a suite of organisational policies and
guidelines which are reviewed regularly to reflect changing requirements. National and local quality
requirements are also defined within NHS Standard Contracts, which provide a framework for
external reporting. (See Appendices 2 and 3 for an outline of the contract and audit frameworks.)
User experience feedback is encouraged on a continuous informal basis (through a model of
individualised care and user groups) and via more structured surveys and consultations. In 2014-15
this included the development of in-house user feedback postcards for continual evaluation of
experience and suggestion for improvement. During the year the hospice doctors have each
undertaken medical revalidation which includes the gathering of a selection of patient feedback.
Key outcomes from user experience evaluations are outlined in Part 3 of the Quality Account.
Externally, quality of care is regulated and assessed by the Care Quality Commission who last made
an unannounced routine inspection in July 2013 (all assessed standards met), and by those NHS
commissioners who make a funding contribution and have an associated monitoring requirement.
Local and In-House Clinical Audits
Helen & Douglas House has an annual audit programme which ensures that, as an organisation, we
are continually improving our clinical services. During 2014-15, the following audits were
undertaken by Helen & Douglas House as part of the annual audit programme:
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Record Keeping Audit
Accountable Officer Audit
Drug Related Incidents Audit
Data Protection Audit
Infection Prevention and Control Audit
Management of Controlled Drugs Audit
Management of General Medicines Audit
Complaints Audit
Hand Hygiene Audits
Mattress Audit
Visitors’ Accommodation Audit
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Commitment to Research as a Driver for Improving the Quality of Care and Patient Experience
Helen & Douglas House demonstrates a strong commitment to research and innovation in the
provision of care services. Both Helen House and Douglas House have pioneered palliative care for
their respective patient age-groups and continue to evolve in response to user needs and to medical
and technological advances. The work of both houses informs and is informed by continually
developing best practice, based on both research and experience.
Our work was showcased at our first conference, ‘Making a Difference: Hospice and Palliative Care
for Young Adults’, in January 2015. The conference attracted 140 national and international
delegates. With a conference focus on patient experience, clinical management and service
development – delegates found the day to be “influential and inspiring,” “thought-provoking,” and
“a great networking opportunity.” One comment reflected that of many: “I am very excited and
cannot wait to start implementing some of my ideas developed through your valuable conference.”
In 2014-15 Helen & Douglas House consolidated its education function across the organisation,
under a new Learning and Development team, with research being the responsibility of the Research
Co-ordinator and the senior speciality doctor. All members of staff are encouraged and supported to
be involved in research at a level appropriate to their role and experience – through daily practice,
in-house training and forums, specific projects and university-based courses. This is particularly true
of the clinical teams. Significant numbers of staff study at Masters’ level (2 completed to distinction
level in 2014-15, with a further 5 working on their dissertations).
There is a high level of support for fortnightly research forums (attended by over 70 different staff
across the organisation this year).
In 2014-15 projects carried out at Helen & Douglas House have included:
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Our Living Wall. A project funded by Roald Dahl’s Marvellous Children’s Charity exploring the
value of a large-scale, communal, spontaneous and lasting art wall at the heart of the
children’s hospice.
An exploration of factors that influence parents as they plan and manage their child’s end of
life care. Is the focus on place wrong?
Analysis of contemporary law and practice in considering the “little voice” in best interests
decisions at the end of life, with a special focus on the rights of the non-speaking/noncognitive child with life-limiting illness to independent advocacy.
Reflections on the meaning and value of a group for bereaved dads.
Research proposals involving Helen & Douglas House staff, patients, and families (whether from
those working within or beyond the organisation) require consideration by an internal Ethics
Committee. In 2014-15, four external research projects were approved by the committee.
The number of patients receiving services (funded by the NHS) provided or sub-contracted by Helen
& Douglas House in 2014-15 that were recruited during that period to participate in research
approved by a research ethics committee was zero. This statement refers to research approved by a
research ethics committee within the National Research Ethics Service; Helen & Douglas House is not
aware of any of its patients that were involved in any such research.
Staff at Helen & Douglas House have also had work accepted for publication (4), and shared their
innovative work through presentations (9) and posters (15) at national/international conferences,
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workshops and study days. Particular areas of expertise include pain/symptom management,
palliative care across locations, transition to adult services, holistic care, and staff support.
Goals Agreed with Commissioners
Use of CQUIN Payment Framework
Helen & Douglas House income in 2014-15 was not conditional on achieving quality improvement
and innovation goals through the Commissioning for Quality and Innovation payment framework.
NHS funding is only ever a contribution towards cost of care and, ultimately, commissioners did not
consider it appropriate to include in NHS Standard Contracts. (NHS Wiltshire initially included a
CQUIN measure in their NHS Standard Contract; this was revoked in January 2015. Helen & Douglas
House continued to implement its identified improvement project (capturing user experience).)
What Others Say about Us
Care Quality Commission
Helen & Douglas House is required to register with the Care Quality Commission (CQC); its current
registration status is unconditional. The Care Quality Commission has not taken enforcement action
against Helen & Douglas House during 2014-15.
During 2014-15 a number of changes to CQC registration were made:
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The Registered Manager is Clare Edwards (Chief Executive), following the planned
retirement of Tom Hill.
The Controlled Drugs Accountable Officer is Liz Leigh (Director of Clinical Services) and the
CQC has been notified.
Helen & Douglas House is registered as a single Provider and Location on the
recommendation of the CQC. (Previously Helen House and Douglas House (two hospice
houses on the same site) had been registered separately with the CQC.)
Helen & Douglas House was not inspected by the CQC during 2014-15. The latest CQC inspection
was on 23rd July 2013 at which all inspected standards were met and registration compliance was
confirmed. The CQC inspected five essential standards:
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Respecting and involving people who use services.
Care and welfare of people who use services.
Safeguarding people who use services from abuse.
Requirements relating to workers.
Complaints.
The CQC report for Helen House (children’s service) included the following assessment:
Children and young people using the service and their relatives told us they had a very
positive experience, they told us "staff are amazing" and "it's like home from home here".
Children and young people were supported to make choices and preferences about their
care and treatment. A young person told us "I choose when to stay so that I can meet my
friends here".
Children and young people were treated with care and respect and received care in a way
they preferred. One young person told us "they used to ask my parents but now they ask
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me what I like".
Children and young people were protected and care was delivered safely. One young
person told us they felt ''safe'' when staying at the hospice. A relative told us "I know my
children are safe here".
People were cared for, or supported by suitably qualified, skilled and experienced staff. A
relative told us "the staff here are amazing, all of them".
Children, young people and relatives knew how to complain if they had a concern. One
young person told us "if I wanted to complain I would go to my main carer but I don't have
any complaints".
The CQC report for Douglas House (service for young adults) found the following:
We found that staff treated people with dignity and respect. For example we observed care
workers involving people in conversations and people told us they were treated with
respect. Staff ensured that people's privacy was protected when care tasks were
undertaken. People told us that the hospice was flexible which enabled them to plan their
care around their lives.
We found that staff were familiar with the risks described in people's care plans and knew
how to support people appropriately. We saw people were assessed by the in-house
occupational and physiotherapists when needed.
We found the hospice had suitable arrangements in place to protect people from the risk of
abuse. Staff we spoke with knew how to identify abuse and how to implement the
safeguarding procedure. We found that any identified or suspected abuse was addressed
appropriately.
We found people were cared for, or supported by suitably qualified, skilled and experienced
staff. The provider had undertaken the required recruitment checks. People we spoke with
described staff as ''nice, good and friendly''.
We found that the service had a written procedure for managing complaints. We saw that
all complaints had been investigated and appropriately responded to in line with the policy.
One person told us, ''Staff are always willing to listen to anything that I might not like when I
am here. We always find a solution together''.
The full inspection reports are available on the CQC website.
There were no actions as a result of the inspection by the CQC.
Users’ Experiences
Further feedback from service users are provided below, in Part 3 of this report.
Comments from commissioners and local scrutineers have also been sought and are also presented
in Part 3 of this report.
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Data Quality
Statement and Actions to Improve Data Quality
Helen & Douglas House acknowledges the importance of good quality information in supporting the
effective delivery of patient care and improvements to services. Actions during 2014-15 include
items identified in the 2013-14 Quality Account and, in turn, inform priorities for the forthcoming
year (2015-16).
Priority
Action & Progress in 2014-15
Plan for 2015-16
Patient notes:
Implementation of new patient
notes systems.
(Priority identified in previous
Quality Account.)
Patient notes system fully
implemented following pilot
and running well.
Implementation project
completed.
Activity data:
Extension of the standardised
reporting of performance data
across additional areas of
hospice activity.
(Priority identified in previous
Quality Account.)
Programme established to
consolidate and standardise the
capture of clinical activity data.
Restructuring of the
responsibilities of the Clinical
Data Manager.
Improvements achieved in data
consistency, quality and
timeliness.
Continued implementation of
data programme to support
activity monitoring and
planning across the service
functions, and to streamline
processes.
Activity data for Outreach and
Family Support teams
consolidated on clinical
database.
Information Governance:
Development of an Information
Governance Improvement Plan
(IGIP).
(Priority identified in previous
Quality Account.)
IGIP developed with external
expert input from specialist
company, Dionach. Significant
improvement in formal
compliance against IG Toolkit.
Continued implementation of
IGIP to ensure a minimum Level
2 compliance against all IG
Toolkit standards by end of
2015-16.
User Experience:
Review of feedback
mechanisms to capture user
experience and inform on-going
improvement.
(Priority identified in previous
Quality Account.)
Implementation of user
feedback postcards providing a
continual mechanism for
written comment and
evaluation of service /
experience. Use of postcards
supported by staff “champions”
in each hospice house. Take-up
progressively increasing.
Consolidation of postcards as a
recognised user feedback
mechanism.
Design and implementation of
patient user survey by end of
2015-16.
Evaluation of online tool(s) to
capture user experience.
Monitoring and Management
of Staff & Volunteer Data:
Consolidation of administrative
data function to improve
monitoring and management of
staff/volunteer data including
training, learning and
development, recruitment and
performance monitoring.
(Priority identified and action
initiated during 2014-15.)
Restructuring of Directorates to
consolidate people
management functions.
Recruitment of Data & Admin
Manager.
Review and streamlining of
data management and
reporting systems to support
the full employee and
volunteer lifecycle.
Continued consolidation and
streamlining of data
management and reporting
programmes.
Move towards a central system
of employee and volunteer
data.
Increase availability, accuracy,
timeliness and efficiency of
data collection, management
and reporting processes.
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NHS Number and General Medical Practice Code Validity
Helen & Douglas House did not submit records during 2014-15 to the Secondary Uses service for
inclusion in the Hospital Episodes Statistics which are included in the latest published data. Helen &
Douglas House is not eligible to participate in this scheme.
Clinical Coding Error Rate
Helen & Douglas House was not subject to the Payment by Results clinical coding audit during the
2014-15 by the Audit Commission.
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Part 3: Review of Quality Performance
Hospice Activity during 2014-15
During 2014-15 the following volumes of in-patient activity were recorded.
In-Patient Activity
Helen House
Douglas House
Total
Bednights of care
1302
1390
2692
Emergency
236
134
370
Planned
1066
1256
2322
139
103
242
Patients in receipt of care (in-House)
From November 2013 to July 2014, the Helen House building was closed for a major refurbishment
to enhance the environment and improve facility to look after more complex patients. During this
period children’s hospices services were relocated to the adjacent Douglas House building, ensuring
continuity of provision. The physical capacity of both the children’s and young adults’ hospices was
temporarily reduced during this time by a total of 2 beds, with inevitable consequences for the
annual level of in-patient activity reported above.
In addition to in-patient activity, the Community Support/Outreach Team provided input for 73
patients, including 50 who were directly cared for outside the hospice through home and hospital
visits. The outreach service at Helen & Douglas House focuses on providing additional, specialist
support for more complex cases, in partnership with patients, families and professionals (community
and hospital teams). It includes more complex symptom management, coordination and planning
(including Advance Care Planning), plus the teaching of hospital-based and community teams to
enable their support of patients requiring complex and end-of-life care.
Patient Caseload
Helen House
Douglas House
Total
New Referrals
77
45
122
Referrals Accepted
63
17
80
Referrals Declined/Withdrawn
18
20
38
Deaths of Accepted Patients
35
18
53
Cases Closed during the Year (not deaths)
12
8
20
Total Patients on Caseload over the FY
190
120
310
125-150
94-103
224-244
Patients on caseload in any one month (range)
One further child was referred directly for care post-death in the “Little Room” (chilled bedroom)
prior to the funeral.
[N.B. As referrals are continually received, some will be pending assessment at the start and
the end of a financial year. The number accepted and declined/withdrawn may therefore not
match the total new referrals during a year.]
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The Family Support and Bereavement Team actively supported the following numbers of individuals
during 2014-15. In addition to supporting individuals known to the hospice through its care of a child
or young adult, this year saw a significant increase in the number of “community” referrals for
bereavement support (i.e. referrals for families whose child had not been in the care of the hospice).
Family Support
Total
Individuals supported on a 1:1 basis (patients, family members, carers)
140
Siblings supported by the “Elephant Club” (on a 1:1 basis and in groups)
73
Individuals supported by Helen & Douglas House social workers
34
In addition to individual support for adult family members, a range of facilitated groups were
convened during the year – including for recently bereaved parents, for fathers, and for
grandparents. Parent-to-parent support groups have also been facilitated, with a progressive
increase in the numbers attending.
Two residential sibling camps were also run during the year: one for younger siblings; the other for
adolescent siblings.
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Quality Monitoring Requirements for NHS Commissioners
Helen & Douglas House is required to report to NHS Commissioners on the quality of its services via
the NHS Standard Contract. The measures for 2014-15 are indicated in Appendix 2 along with the
associated reporting compliance and commentary.
Patient Safety and Clinical Effectiveness
One of the key drivers at Helen & Douglas House is the delivery of excellent, safe care.
Safety is not just about identifying risks after an event has occurred but also about looking at areas
we know can cause harm to patients, and being proactive in their management. It is about having
the systems to introduce changes and make improvements when they are needed, and to monitor
when changes are made to make sure they are sustainable and beneficial. 2014-15 has seen a great
deal of work to take this approach forward and to integrate these reactive, proactive and
improvement aspects of safety into the Clinical Governance Framework.
In order to monitor and continuously improve patient safety and clinical effectiveness, a programme
of audit and risk assessment/review is in place. These systems provide clear evidence for the Care
Quality Commission that the organisation takes patient safety and clinical effectiveness extremely
seriously and develops systems to support the continuous improvement in all aspects of service
delivery. Results from the 2014-15 Clinical Audit Programme are summarised below.
Record Keeping Audit
Audit Tool
In-house tool based on standards and guidelines from Nursing and Midwifery
Council, Royal College of Physicians Health Informatics Unit, Department of
Health National Minimum Standards, and Health and Social Care Act (2008).
Target
Continuous improvement
Result
87%
Previous: 90%
Commentary
Compliance in the core criteria have been steadily improving against previous
years’ internal audits. However this audit showed a slight decrease in
compliance.
Key
Training session put in place for staff in May 2015. Record keeping to be
Recommendations included in training updates throughout 2015-2016.
Accountable Officer
Audit Tool
Hospice UK Self-Assessment Tool for the Accountable Officer
Target
>90% compliance
Result
92% compliance
Previous: 86% compliance
Commentary
This audit ensures risks are identified in a timely manner, eradicated or
reduced. There are good processes in place which ensure the organisation
meets the requirements of current legislation in the management of controlled
drugs. The development of improved monitoring systems has had a direct
impact on improvement in this area. Drug and clinical incidents are now
reported through the Clinical Governance meetings as standing agenda items
and Clinical Assurance & Excellence Sub-Committee – reporting directly to the
Trustee Board.
Key
Develop systems to monitor prescribing activity within the organisation.
Recommendations Develop a system for clinically monitoring patients prescribed controlled drugs.
Page 16 of 29
Drug Related Incidents
Audit Tool
Target
Result
Commentary
In-house tool
Continuous monitoring to identify and reduce risks
98 incidents
Previous audit: 97 incidents
Helen & Douglas House has a positive, open culture of reporting and reviewing
drug-related incidents. The number of drug related incidents reported was
consistent with the previous year. None of the drug errors caused harm to
patients, although 6 of them had the potential to cause harm. The relative
predominance of errors of omission, prescription and dosing reflects trends
reported in the National Reporting and Learning Systems.
Given the volume and complexity of drugs administered on a daily basis, the
number and nature of actual drug errors reported reflected minimal risk to
patients, but those that caused potential risk are reported in order to maintain
transparency within and outside the organisation.
Key
Continued close monitoring of drug errors to quickly identify any contributing
Recommendations factors.
Audit Tool
Target
Commentary
Audit Tool
Target
Result
Commentary
Key
Recommendations
Data Protection
Audit developed using the Information Commissioner’s Data Principles,
coupled with the Information Governance (IG) Toolkit. In parallel, the
organisation is working with a 3rd party information security company to assess
compliance and develop an Information Governance Improvement Plan.
Continuous improvement
The Data Protection Audit was not undertaken due to the review by a 3rd party
information security company of Information Governance within the
organisation. As a result of the first Data Protection Audit in 2013-14
Information Governance was highlighted as a priority. During 2014-15 an
Information Governance Steering Committee was formed and an Information
Governance Improvement Plan developed.
Infection Prevention and Control
Hospice UK Prevention and Control of Infection Audit Tool
≥90% compliance
15/16 (95%) modules achieved >90%
Previous: 12/15 (80%) modules
compliance
achieved > 90%
Standards have continued to improve with 11 of the modules increasing in
compliance compared to the previous audit. Overall the areas of noncompliance were aesthetic issues that do not pose a risk to patient safety or
the quality of the service delivered. The recommendations made in each of
the modules will address the issues identified.
Aim to continue improvement in this area.
Page 17 of 29
Management of Controlled Drugs
Audit Tool
Hospice UK Controlled Drugs Audit Tool
Target
Continuous improvement; >90% compliance
Result
99% compliance
Previous audit: 100% compliance
Commentary
Compared to the 2013-2014 audits there has been a decrease in compliance in
two sub-topics: Procurement (from 100% to 97%) and Examination of Stock
Held (from 100% to 94%).
It is worth noting that only one question out of eight questions in each subtopic was not compliant. Whilst the results show a very slight decrease in
compliance compared to the previous audit it is important to note that these
sub-topics still achieved the targeted >90% compliance.
Key
Remind all Registered Nurses through training updates of their responsibility to
Recommendations sign the controlled drugs requisition book in the “received by” section when
receiving controlled drugs from pharmacy.
Develop a system or process to ensure that different strengths of the same
drugs are stored in a manner to minimise the risk of error.
Management of General Medicines
Audit Tool
Hospice UK General Medicines Audit Tool
Target
>95% compliance
Result
97% compliance
Previous audit: 92% compliance
Commentary
Whilst a high level of compliance is maintained, improvements are identified in
two areas.
Key
 Develop statement for use of covert measures to be added to the
Recommendations
Medicines Management policy and procedure.
 Develop a system for staff to sign that they have read the policy and
procedure.
Complaints
Audit Tool
Tool developed by the Clinical Audit Support Centre
Target
100% compliance
Result
100% compliance
Previous audit: 100% compliance
Commentary
Four complaints were received during 2014-15: two verbal, and two written.
Three of the complaints were dealt with in a timely manner in accordance with
the local Complaints Policy and Procedure. One complaint remains unresolved
and is going through the appeals process.
Key
Maintain 100% compliance by continued attention to understanding and
Recommendations responding effectively to users’ experiences and comments.
Page 18 of 29
Hand Hygiene Audits
Audit Tool
In-house tool developed based on World Health Organisation’s 5 Moments for
Hand Hygiene
Target
>90% compliance
Result
89% average compliance
Previous audit: 91% compliance
Commentary
Feedback from hand hygiene audits is disseminated to all staff to highlight
areas for improvement. Hand hygiene prior to patient contact and on entering
the patient environment is an area for improvement.
Key
Bi-monthly hand hygiene audits will continue as part of the annual clinical
Recommendations audit programme.
Mattress Audit
Audit Tool
Target
Result
Commentary
In-house tool
>90% compliance
91% compliance
Previous: 14%
Damage can be caused to a mattress which is not visible to the naked eye but
which can allow fluid to enter the mattress. Close contact between a patient
and the mattress facilitates the transmission of micro-organisms between the
two. The aim of the mattress audit is to reduce the risk of healthcare
associated infections related to mattresses in Helen & Douglas House, and to
ensure that the mattresses are replaced as soon as they become contaminated
or damaged.
Key

Recommendations

Audit Tool
Target
Result
Commentary
A mattress replacement programme to be established to replace
condemned mattresses (April 2015).
New mattress to be marked with the date of purchase and mattress
number so that on-going monitoring can take place. This will allow the life
of the mattress to be audited (November 2015).
Visitors’ Accommodation Audit
Hospice UK Prevention and Control of Infection Audit Tool
>90% compliance
91% compliance
Previous: addition to audit
The audit of Visitors’ Accommodation falls within the Infection Prevention and
Control audit; however, due to the closure of Helen House for refurbishment
and changes in use of accommodation in Douglas House this section of the
audit was not completed at the same time as the infection control audit. The
visitors’ accommodation audit was started during September 2014 after the reopening of Helen House, but due to the use of the accommodation the audit
was not completed until December 2014. Only the family accommodation in
Helen House was audited due to the impending changes in use of Douglas
House family accommodation.
Key
Include visitors’ accommodation in next year’s infection prevention and control
Recommendations audit.
Page 19 of 29
Patient Experience
Helen & Douglas House offers a personalised model of care predicated on a holistic understanding of
each individual patient. This necessitates a high level of engagement with patients and their
families/carers to assess their needs and preferences, plan the care, and evaluate its outcomes.
Staff continually seek and receive feedback from users regarding the specifics of the care required
and provided, and this is recorded in individual patient notes. This is achieved through:





dialogue before, during and after a stay;
annual review of each patient’s care (with the patient/family);
completion of feedback postcards (available for on-going comment);
feedback on specific projects (such as Helen House refurbishment) or general surveys;
comments, compliments and complaints.
Such on-going mechanisms enable a personalisation of services and a responsiveness to feedback.
During 2014-15 feedback postcards were designed and implemented by Helen & Douglas House for
continual evaluation by users of their service experience. Their implementation has been supported
by staff “champions” in each hospice house and the cards are providing valuable feedback.
In addition to on-going feedback mechanisms, during 2014-15 each of the doctors employed by the
hospice gathered feedback from patients and families as part of their statutory medical re-validation
process.
Given the relatively low numbers of patients served by a children’s hospice and the fact that many
patients are on-going users of the hospice services, feedback on patient experience is a continual
process that can be achieved through a balance of more and less formal approaches. In achieving
such a balance, during 2014-15 Helen & Douglas House decided not to conduct a formal
questionnaire/survey of patients. This decision was made in the context of the continual assessment
processes in place (including the introduction of feedback postcards), patient engagement that was
being conducted for medical revalidation, feedback sought on specific projects (such as Helen House
refurbishment), hospice users’ participation in the Help the Hospices survey during 2013-14, and the
plan to conduct a formal user survey during 2015-16.
Examples of feedback from patients and their families/carers are given below.
Feedback Postcards:
Where rated, users across both hospice houses evaluated their current experience at a mean of 9.3
out of 10. Comments regarding what the hospice does well, areas for improvement, and overall
impact have been constructive and include specific points to commend and to progress.
Comments reflected patients’ and families’ confidence in the quality of service and understanding of
individuals’ needs. For families, this enabled them to relax and also to spend quality time with their
other children, secure in the knowledge that their sick child is being well looked after.
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Feedback from Patients:

“I've decided that Helen & Douglas House would be the best place to go for respite…I've
been going now for seven years…I've made new friends in the house…these people are there
when I'm going as we book in together. This way we can see each other and enjoy the
stay…Helen & Douglas House have a great support team, this team helps with both moral
and physical help. They help with talking about my condition and what things can help me
with day to day things. They…listen and this has made me confident in everyday
things…When I'm in Helen & Douglas House there are people there with the same
condition…so we chat to each other about day to day problems, ideas about the future
and…we have good fun with each other…When I chat with them it's easy because we know
what we're going through…Helen & Douglas House give me freedom to go into Oxford to go
shopping, going to the cinema and eating out. This gives me a better feel of adult life. As the
hospice is in Oxford I can feel what a city is like and experience its wide variety of things to
see and do…These are my feelings about why this Hospice is better than any other…this is
where I really what to go…I feel it's the best place for me and the support there is second to
none. I feel safe there and happy to talk to people like me and kind care staff.”

“It was better, much better than I had expected. I was really surprised how good it was and
how flexible it was and just how brilliant the staff are. One of my most memorable days at
Douglas House went like this: As I was getting up, the Care Team Member assigned to me
asked if I had any plans for the day and I said I loved museums; I’d heard good things about
the Pitt River’s Museum. We headed into the city, stopped in a brilliant chocolate themed
cafe which the Care Team Member had recommended and en route got distracted by the
History of Science Museum. We went back for lunch, then in the afternoon I got on the bus
and went to the Ashmolean Museum. My wheelchair definitely needed charging that night!”
Feedback from Parents/Carers:

… parents felt the transfer from PICU to Helen & Douglas House was handled extremely well,
efficiently and with great sensitivity. They also said that they felt that the care they had
received was of a high standard and that the team went out of their way to accommodate
them and their visitors.

“Thank you to all the staff for your amazing help with our little boy's life. You are truly God
sent and do amazing work in the community. Thank you.”

“Our 12 month old’s seizure pattern deteriorated…in desperation I called Helen House and
was offered a couple of nights stay as an emergency admission…after we arrived [the
doctor] came over to us to talk about [the] admission… [the doctor’s] manner immediately
helped to relax us and we talked freely. We spent a long time with both doctors and we can
honestly say we’ve never had a better patient/doctor experience in our lives…Due to the
actions of your Drs we feel we've got a plan of actions in place…to get the best medical
support… and we cannot thank each of them enough… I’m sure you get a lot of praise for
your team and it is very justly deserved, they picked us up off the floor,… and gave us the
Page 21 of 29
strength to move forward. Please thank them all for us.”

Mum has never left [her child] before and will be leaving [her child] again at Douglas House
for the second time. She’s is full of praise for Douglas House and wants to continue coming
here in the future and said Douglas House is the only place she can trust and knows she can
go home and have a well-deserved rest.

Mum said to me when they arrived at Douglas House to face the prospect of allowing their
beloved son to die here with us “We have come because it feels like we are coming home ”.
… after the funeral they said that they were so devastated when [their son] died and had no
idea how they would ever cope with what they had to do to get through to today. They not
only coped but arranged a beautiful funeral for their son. Mum said she felt strong and
proud of what they had achieved today and that they had drawn that strength from the love
and support they had received here over the past two weeks. They send their heartfelt
thanks to you all.

“Whilst visiting on Saturday [they]wanted me to thank all staff that helped and supported
their family during their time at Helen House four years ago and afterwards, enabling them
to be the family they are today.”
User feedback from the medical revalidation process affirmed doctors’ openness, respect and
expertise. Compassion for patients and their families was reported, alongside an approachable
manner. Outcomes of trust, reassurance and confidence were described by users.
In July 2014 the Helen House building was reopened following a period of extensive reordering of
the footprint and refurbishment of the facility in order to improve the quality and experience of care
that the hospice is able to provide. Immediate feedback from families following the re-opening is
illustrated by the comments below.

“Amazing… Thank you all.”

“1st Class Fun… Can’t wait for next time.”

“I love it, especially the space.”

“More room in the playroom is great.”

“Coming back to Helen House after the refurbishments has been great, we love the colours
and how so much more space has been created. We thought the trees sown by the
bedrooms added a nice touch and that the children can put their art work on them.”

“The sensory room we found a lot better as you can get a wheelchair there now. Overall it’s
lovely and we can’t wait to come back.”

“Overall impressions are that it’s great, spacious and easier to move around especially with
big wheelchairs. We like it a lot. Love the art room space and play area. It just needs its
home comforts back and it will be perfect.”

“Gobsmacked! Amazing. So bright & airy.”

“Wow”
Whilst we continually strive to provide excellence in the care and experience that we deliver, there
are inevitably times/circumstances when this is not fully achieved. The continual process of actively
seeking/offering opportunity to feedback on issues of any scale is helping to extend our culture of
improvement and to pick-up on users’ experiences and suggestions more systematically.
Page 22 of 29
Statements from Commissioner and Local Scrutineers
Comment from the Clinical Commissioning Group with responsibility for largest amount healthcare
provided by Helen & Douglas House under a commissioning agreement:
Helen & Douglas House has continued to provide excellent support to Swindon children and
their families requiring hospice care. Ongoing service development, including emergency
medical care, outreach support and refurbishments demonstrate the hospice’s commitment
to continually improving the care and support it provides. Helen & Douglas House has
willingly and effectively supported commissioning through the provision of reporting and
participation in local initiatives including an urgent care workshop and complex healthcare
needs assessment in Swindon. We look forward to continuing to work with the hospice to
ensure good quality services and support are available to Swindon children and their
families.
Caroline Little
Joint Children’s Health Commissioner
NHS Swindon Clinical Commissioning Group & Swindon Borough Council
Comment was also sought from an additional Clinical Commissioning Group with responsibility for a
significant proportion of the healthcare provided by Helen & Douglas House that was under a
commissioning agreement.
NHS Nene and Corby CCGs commission services from Helen and Douglas House through an
AQP contract agreement. As part of the contract monitoring process, we have been assured
that Helen and Douglas House provide high quality, expert care which is valued by children,
young people and their families from Northamptonshire.
We appreciate the high standards that Helen and Douglas House achieve within a welcoming
and child friendly environment. This enables families to make the most of their time
together in a safe and supportive way, cared for by staff that makes a real difference.
The sibling support service and the liaison support received by our local community teams
are particularly valued by professionals and families alike.
The Quality Account clearly demonstrates that Helen and Douglas House is aware of priority
areas for improvement, has a clear action plan and demonstrates accountability in delivering
against actions.
Sian Heale
Children and Young People’s Commissioner
NHS Nene and Corby Clinical Commissioning Groups
The Quality Account was submitted to Healthwatch Oxfordshire who replied to advise that they had
no comment to make.
The Quality Account was also submitted to Oxfordshire Health Overview and Scrutiny Committee,
however no response has been received at time of finalisation of this document.
Page 23 of 29
Appendix 1 – Hospice Caseload and Activity Charts
Page 24 of 29
Page 25 of 29
Page 26 of 29
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Appendix 2 – NHS Standard Contract Reporting Compliance against National and Locally-Defined Quality Measures
Helen & Douglas House - Reporting Template & Forward Plan 2014-15
REPORTING REQUIREMENT
What needs to be reported
How to report
Infection Control
Local/
National
Local
Compliance with regulations
Report/Paragraph
NICE Guidance
Local
NICE guidance review
Report/Paragraph
Number of new patients seen
No
Quality Requirement
1
2
3
Discharge Summary
Q1
Q2
Q3
Q4




This dashboard
29 additional children
accepted to caseload
+ 8 new young adults
34 additional children
accepted to caseload
+ 9 new young adults
% of discharge summaries issued within 5 working days
This dashboard
100%
88%
% that include all relevant areas (see method of measurement)
This dashboard
100%
100%
Local
Annual

nil

4
Clinical Audit
Local
Audit plan shared
Provider document
5
Delivering Same Sex Accommodation
Local
Report any complaints as a result of bathroom facilities for patients
This dashboard
6
Patient Experience Survey
Local
% response rate from patient survey
This dashboard
% of workforce off sick (see also notes below)
This dashboard
7.8%
7.8%
7.8%
% staff absent (includes sickness and annual leave)
This dashboard
Vacancy rate
This dashboard
21.0%
2.3%
(nursing & care staff)
19.6%
3.0%
(nursing & care staff)
20.3%
2.6%
(nursing & care staff)
% staff completing staff survey
This dashboard
% staff completed mandatory training
This dashboard
Number of complaints received
This dashboard
3
2
Number of complaints resolved
This dashboard
3
1
Number of service improvements in place (in response to complaints)
This dashboard
1
1
Any exceptions reported
This dashboard
nil
nil
Compliance with NICE & local formulary
This dashboard
Number of Incidents Requiring Reporting
This dashboard
nil
nil
nil
nil
GP notified of any Incidents Requiring Reporting
This dashboard
nil
nil
nil
nil
Annual safeguarding training undertaken by 100% of staff
This dashboard
Number of safeguarding incidents reported
This dashboard
nil
nil
nil
nil
Number of safeguarding alerts - adults
This dashboard
nil
nil
nil
nil
Annual safeguarding training undertaken by 100% of staff
This dashboard
Number of safeguarding incidents reported
This dashboard
nil
nil
nil
nil
Number of safeguarding alerts - children
This dashboard
nil
1 concern raised to a LA
nil
nil
Equality compliance shared with Commissioners
Report/Paragraph
Report/Paragraph
7
8
Workforce and training reporting
Complaints
Local
Local
9
Medicines Management
Local
10
Serious Incidents Requiring Investigation (SIRI)
Reporting
Local
11
Safeguarding Vulnerable Adults
Local
nil
nil
nil
nil
73%




12
Safeguarding for Children.
Local
13
Equality for Patients
Local
14
National Quality Reports
Local
15
NPSAS - CAS
Local
Provider complies with national guidance and adapts service to include any
recommendations
Compliance with CAS alerts
16
Registration with appropriate authority
Local
CQC registration evidence & reports shared
Report/Paragraph
17
Patient Safety Incidents
Local
Patient Safety Incident learning
This dashboard
nil
nil
18
EoL Care
Local
Support advance care planning and support sections of national EoL strategy
Contract Meeting


19
Lone Worker Policy
Local
Share policy
This dashboard

20
Duty of Candour
National
Notification of any Duty of Candour requests. Exception report, nil return if none
This dashboard
nil
nil
nil
nil
21
Never Events
National
Report if any Never Events have occurred
This dashboard
nil
nil
nil
nil

Report/Paragraph
This dashboard was agreed for use with NHS Wiltshire and NHS Swindon CCGs.
Page 28 of 29





Appendix 3 – Helen & Douglas House Clinical Audit Programme 2014-15
HELEN & DOUGLAS HOUSE AUDIT PROGRAMME 2014-2015
ACTIVITY
START DATE FINISH DATE
Mattress Audit
01/04/2014 30/09/2014
Hand Hygiene Audit
01/04/2014 30/04/2014
Drug Related Incidents Audit (2013-2014)
01/04/2014 30/05/2014
Accountable Officer Audit
02/06/2014 31/07/2014
Hand Hygiene Audit
02/06/2014 30/06/2014
Visitors Accommodation Audit
02/06/2014 31/07/2014
Hand Hygiene Audit
01/08/2014 29/08/2014
Data Protection Audit
01/08/2014 30/09/2014
Hand Hygiene Audit
01/10/2014 31/10/2014
Management of General Medication Audit
01/10/2014 28/11/2014
Management of Controlled Drugs Audit
01/10/2014 28/11/2014
Record Keeping Audit
01/12/2014 30/01/2015
Hand Hygiene Audit
01/12/2014 31/12/2014
Infection Prevention and Control Audit
01/01/2015 27/02/2015
Hand Hygiene Audit
01/02/2015 27/02/2015
Complaints Audit
02/03/2015 31/03/2015
Clinical Governance Report
31/03/2015 30/05/2015
Apr-14 May-14 Jun-14
Page 29 of 29
Jul-14
Aug-14 Sep-14
Oct-14 Nov-14 Dec-14
Jan-15
Feb-15 Mar-15 Apr-15
May-15