QUALITY ACCOUNT
2013-14
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.
Quality at the heart of the organisation
The pursuit of excellence in the delivery of care and 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. In July 2013
inspectors from the Care Quality Commission undertook an extensive review of the Charity’s work.
Children and young people using the service and their relatives told the inspectors that “staff are
amazing” and “it’s like home from home here”. The inspection report affirmed that children and
young people were protected and care was delivered safely. All standards inspected by the CQC
team were fully met.
Helen & Douglas House is the holder of the PQASSO Quality Mark. PQASSO (Practical Quality
Assurance for Small Organisations) is a quality assurance accreditation awarded by the Charities
Evaluation Service.
Following an extensive, objective review Helen & Douglas House was awarded the title of Thames
Valley Charity Business of the Year for 2012/13. In June 2013 the Charity was awarded the Oxford
Times’ Charity and Community Award. The assessors for both awards recognised excellence in the
business and administrative principles that underpin the delivery of care at Helen & Douglas House.
That 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.
Priorities for improving quality in the coming year include staff and user feedback programmes, and
realisation of a revitalised care environment through a £1.5million refurbishment of Helen House
(the children’s hospice). We are committed to ensuring continued compliance with national
standards, and to promoting consistently good practice.
The Quality Account
This is the organisation’s first 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 Service Development
Manager, and is endorsed by the Board.
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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.
Tom Hill, Chief Executive
26th June 2014
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Part 2: Priorities for Improvement and Statements of Assurance from the Board
Priorities for Improvement 2014-15
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.
Priority Area
Patient Safety:
Drug errors
Patient Experience:
Develop tools to monitor
patient experience
Information Governance:
Improve information
governance (IG)
throughout the
organisation.
Infection Prevention and
Control
How identified as
a priority
Patterns in
incident reporting;
results of audits.
How priority will be
achieved
Implementation of
Assessment of
Medication Skills for
Nurses Workbook
(developed in-house,
2013-14).
How progress will be
monitored
Analysis of incidents.
Annual appraisal and
1:1 interviews.
Audit.
Care Quality
Commission and
contractual
requirements;
good practice.
IG audit process
(2013-14).
Develop and
implement user
feedback programme.
Annual report.
Work with local
Information Security
company over the
year to assess current
situation and develop
an Information
Governance
Improvement Plan.
Implement
recommendations
made in latest
Infection Control
Audit.
Production and
implementation of
Information
Governance
Improvement Plan;
annual assessment
through Information
Governance Toolkit.
Annual audit using
the Help the Hospices
Infection Prevention
and Control Audit
Tool.
Care Quality
Commission
standards:
“…everyone should
be cared for in a
clean environment
with rigorous
infection
prevention and
control in
place…”1.
Infection Control
Audit.
1
Care Quality Commission, 2008. Registering with the Care Quality Commission in relation to healthcare
associated infection. Guidance for Trusts 2009/10.
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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 2013-14 Helen & Douglas House provided the following services (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 (physio, 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)). 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 one-to-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 and spiritual support for patients and families.
Advocacy for service users (patients and families).
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
Practical help for families (via a supported volunteer service run by the hospice).
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 2013-14 public sector contributions to care2 represent
13% 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.
In 2013-14 NHS commissioning contracts were in place for NHS Swindon and NHS Wiltshire Clinical
Commissioning Groups (CCGs) for children’s palliative care – via joint commissioning arrangements
with the respective Local Authorities. These commissioners contribute circa 30% cost of the inpatient care that is provided to children from their CCGs who use Helen & Douglas House.
CCGs within the former South Central Strategic Health Authority (the hospice’s core catchment)
have continued to decline to fund children’s hospice care during 2013-14, despite representations
made by the hospice and via NHS South for an equitable and acknowledged contribution to
healthcare provision in the region. The hospice continues to seek a fair playing field that supports
the sustainability of specialist services through equity of access to, and of funding for, palliative care
for children and young adults.
Public sector contributions to the funding of young adults are typically negotiated on a case-by-case
basis with health and/or social services, or, increasingly, with the holder of a Personal Budget.
2
Excludes NHSE capital grant.
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Participation in Clinical Audits
National Clinical Audits
During 2013-14 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 weekly Executive Team meetings, monthly Clinical Governance meetings,
quarterly Clinical Assurance Committee meetings that feed in to the 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 contracts 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 2013-14
this included engagement with the Help the Hospices user experience survey (validated by the
University of Kent) and the launch of a consultation with all service users regarding the planned
refurbishment of Helen House (refurbishment in process from November 2013). Key outcomes from
the user experience survey are outlined in Part 3 of the Quality Account.
Externally, quality of care is regulated and assessed by the Care Quality Commission who made an
unannounced routine inspection in July 2013 (all assessed standards met) and by those NHS
commissioners who make a funding contribution – to whom we report on a quarterly basis and with
whom we have a positive relationship.
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 2013-14, the following audits were
undertaken by Helen & Douglas House as part of the annual audit programme:
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Record Keeping Audit and Re-Audit
Accountable Officer Audit
Drug Related Incident Audit
Data Protection Audit
Infection Prevention and Control Audit
Management of Controlled Drugs Audit
Management of General Medicines Audit
Complaints Audit
Hand Hygiene Audits
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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. Palliative care for children and young adults is a relatively young field;
Helen & Douglas House remains a regional/national centre of expertise – committed to the
furtherance of the specialty.
In 2013-14 Helen & Douglas House consolidated its Research Education and Development function
within its Clinical Directorate which is led by a senior Doctor and delivered through a Research
Coordinator and two Learning and Development Leads. All members of the clinical teams 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 universitybased courses. Significant numbers of staff study at Masters’ level and there is a high level of
support for fortnightly research forums.
In 2013-14 research projects carried out at Helen & Douglas House included:
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Life story work with users of Helen & Douglas House.
An exploration of the experiences of transitioning from children's to adult healthcare
services for young men with Duchenne Muscular Dystrophy.
Reaching out/Reaching in: Exploring the impact of accessible video conferencing on
the lives of those using a hospice for young adults.
Boundary-spanning leadership and innovation: a case study of the development the
oncology service for young adults at Douglas House.
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. This committee includes professionals (doctors, a solicitor, academics) from outside the
organisation. In 2013-14, one external research project was approved by the committee.
The number of patients receiving services (funded by the NHS) provided or sub-contracted by Helen
& Douglas House in 2013-14 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 (5), and shared their
innovative work through presentations (12) and posters (4) at national/international conferences,
workshops and study days. Particular areas of expertise include Advance Care Planning, research
ethics, clinical supervision, and pain/symptom management.
Goals Agreed with Commissioners
Use of CQUIN Payment Framework
Helen & Douglas House income in 2013-14 was not conditional on achieving quality improvement
and innovation goals through the Commissioning for Quality and Innovation payment framework
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because NHS funding is only ever a contribution towards cost of care and commissioners did not
consider it appropriate to include in NHS Standard Contracts.
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 2013-14.
Helen & Douglas house received an unannounced routine inspection from the CQC 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
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
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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.
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 2013-14 have
included:
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A review of documentation and procedures for patient notes, with recommendations for a
new system to be piloted in 2014-15.
Consolidated implementation of the organisation’s administrative clinical database and
generation of a regular suite of internal performance reports.
Registration with the Information Governance Toolkit and an initial assessment of
compliance.
Analysis of user experience survey results (benchmarked against other hospices) and
development of an action plan to promote greater consistency of good practice.
Activity data in 2013-14 for Helen House affirms the increasing proportion of complex and specialist
care provided to children. Over 50% of the children on the Helen House caseload in 2013-14 were
assessed as requiring specialist palliative care. In addition, more than 25% bed-night activity was
associated with an emergency/urgent admission.
Initial assessment against the Information Governance Toolkit reveals some gaps in compliance, and
informs priorities for improvement in 2014-15.
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Helen & Douglas House will be taking the following actions to improve data quality:
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Implementation of new patient notes systems (pilot in process).
Extension of the standardised reporting of performance data across additional areas of
hospice activity.
Development of an Information Governance Improvement Programme.
Review of feedback mechanisms to capture user experience and inform on-going
improvement.
NHS Number and General Medical Practice Code Validity
Helen & Douglas House did not submit records during 2013-14 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
2013-14 by the Audit Commission.
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Part 3: Review of Quality Performance
Hospice Activity during 2013-14
During 2013-14 the following volumes of in-patient activity were recorded.
In-Patient Activity
Helen House
Douglas House
Total
Bednights of care
1572
1494
3066
Emergency
437
147
584
Planned
1135
1347
2482
128
111
239
Patients in receipt of care (in-House)
In addition to in-patient activity, the Community Support Team cared for 38 patients through home
and hospital visits, and supported a further 20 through care coordination (including Advance Care
Planning). Community support focuses on more complex symptom management, coordination and
planning in liaison/partnership with families and local team(s); it has included teaching of hospitalbased and community teams to enable their local support of patients requiring complex and end-oflife care.
Patient Caseload
Helen House
Douglas House
Total
New Referrals
81
44
125
Referrals Accepted
53
20
73
Referrals Declined/Withdrawn
17
16
33
Deaths of Accepted Patients
32
5
37
Cases Closed during the Year (not deaths)
18
15
33
Total Patients on Caseload over the FY
176
121
297
117-127
94-102
214-227
Patients on caseload in any one month (range)
Three further children were referred directly for care post-death in the “Little Room” (chilled
bedroom) prior to their 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.]
The Family Support and Bereavement Team supported the following numbers of individuals during
2013-14.
Family Support
Total
Individuals supported on a 1:1 basis (patients, family members, carers)
212
Siblings supported by the “Elephant Club”
59
Individuals supported by Helen & Douglas House social workers
21
In addition to individual support, a range of facilitated groups were convened during the year including for recently bereaved parents, for dads, and for grandparents. Three workshops were run
on topics that covered grief, spirituality, and the care of surviving siblings. 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 2013-14 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. 2013-14 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 2013-14 Clinical Audit Programme are summarised below.
Audit Tool
Target
Result
Commentary
Key
Recommendations
Record Keeping Audit
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).
Continuous improvement
Initial audit: 71% Re-audit: 90%
Previous: 82%
Compliance in the core criteria have been steadily improving against previous
years’ internal audits. However the initial audit revealed some shortcomings in
consistency of practice. Resultant staff training (May 2013) was followed by a
re-audit in September 2013. The re-audit showed improvement across the
board against the two previous audits.
Implement a regular programme of Record Keeping update training.
Accountable Officer
Audit Tool
Help the Hospices Accountable Officer Audit Tool
Target
≥90% compliance
Result
86% compliance
Previous: 85% 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 opportunity to improve monitoring systems has been highlighted.
Key
Develop systems to improve the accounting for controlled drugs purchased by
Recommendations and administered by the hospice.
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Drug Related Incidents
Audit Tool
Target
Result
Commentary
In-house tool
Continuous monitoring to identify and reduce risks
93 incidents
Previous audit: 104 incidents
Helen & Douglas House has a positive, open culture of reporting and reviewing
drug-related incidents. The number of drug related incidents reported during
this period decreased by 5% compared to the previous year’s audit; drug errors
decreased by 25%. The relative predominance of errors of omission,
prescription and dosing reflect 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.
Key
Formalisation of expected practice within related policies and procedures.
Recommendations Roll-out of Medicines Administration Competency Tool to all registered nurses.
Data Protection
Audit Tool
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.
Target
Continuous improvement
Result
Preliminary assessment
Commentary
The preliminary result of the IG audit reflects some gaps in formalised
documentation of information policies and recording of data trails. However,
the initial 3rd party assessment suggests robust data security practices and IT
security. IT server security was reviewed as part of an upgrade in September
2013 in accordance with the security recommendations of the NHS N3
Network checklist. The risks to data security are considered low, although
enhancement to Information Governance is highlighted as a priority for
improvement in 2014-15.
Key
Development of an Information Governance Improvement Plan with expert
Recommendations input from a 3rd party information security company.
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Audit Tool
Target
Result
Commentary
Key
Recommendations
Infection Prevention and Control
Help the Hospices Prevention and Control of Infection Audit Tool
≥90% compliance
12/15 modules (80%) achieved > 90%
Previous: 6/12 modules >90%
Standards have continued to improve with over half 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.
Re-audit the three pertinent modules by October 2014.
Management of Controlled Drugs
Audit Tool
Help the Hospices Controlled Drugs Audit Tool
Target
Continuous improvement
Result
100% compliance
Previous audit: 98% compliance
Commentary
Compared to the previous audit there was an improvement in compliance in
two topics: Procurement (11% increase) and Prescribing (5% increase).
Key
List of signatories, including doctors and pharmacist, to be made available and
Recommendations kept up-to-date.
Management of General Medicines
Audit Tool
Help the Hospices General Medicines Audit Tool
Target
Continuous improvement
Result
92% compliance
Previous audit: 93% compliance
Commentary
Whilst a high level of compliance is maintained, improvements are identified in
two areas.
Key
Improve information to patients about medications initiated during their stay.
Recommendations Update the Medicines Management Policy and Procedure.
Complaints
Audit Tool
Tool developed by the Clinical Audit Support Centre
Target
100% compliance
Result
100% compliance
Previous audit: 81% compliance
Commentary
Two complaints were received during 2013-14: one verbal, the other written.
Both complaints were dealt with in a timely manner in accordance with the
local Complaints Policy and Procedure.
Key
Maintain 100% compliance by continued attention to understanding and
Recommendations responding effectively to users’ experiences and comments.
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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 continually 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.
The service as a whole is evaluated through periodic user surveys; in 2013-14 this included
participation in the Help the Hospices biennial survey (validated through the University of Kent). The
survey covered five themes:
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Provision of Information about In-patient Services.
In-patient Staff Communication and Care.
In-patient User Involvement & Understanding.
Views of In-patients on the Support and Courtesy of Staff.
In-patient Facilities and Services.
Overall, Helen & Douglas House compared favourably with the cohort of other hospices (adultfocused) who participated in the survey and scored particularly highly for user satisfaction in
activities available. Positive comments also included:
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Descriptions of staff as professional, friendly, helpful, inclusive and trustworthy.
Advance Care Planning conducted with sensitivity (acknowledging differences in family
readiness for such conversations).
High levels excellence in providing respect, dignity and privacy to patients.
The survey also highlighted potential for greater consistency in upholding excellent standards of
communication and care planning across all staff. Actions resulting from the survey include:
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A revision of staff uniform and name badge policy; introduction of prominent photo boards
to ease patients’ identification of staff.
Formalisation of expected communication and engagement best practice, with
reinforcement through associated staff training.
Increasing IT-literacy of staff/volunteers to support young people’s access to and use of
technology.
In May 2013 a consultation was initiated with all current service users and in-house staff/volunteers
regarding a proposed refurbishment of Helen House and the temporary relocation of children’s
services to the Douglas House building. The refurbishment itself was prompted by users’ experience
of providing care in a 30 year-old building which now needs to accommodate an increasing
complexity of care, plus associated equipment and technology, to meet current and future patients’
needs. Feedback from stakeholders has been used to shape the operational design of both the reformulation of Helen House and the transitional arrangements for care in Douglas House.
Specific feedback is also received via user-initiated compliments and complaints. There were two
complaints during the year 2013-14: one verbal and the other written. Both complaints were dealt
with in a timely manner in accordance with local policy; the internal Complaints Audit showed 100%
compliance in all areas. The Care Quality Commission inspection in July 2013 also included
assessment of the essential standard of “Complaints” (people should have their complaints listened
to and acted on properly). The CQC judgement was that:
Page 16 of 23
“The provider was meeting this standard. There was an effective complaints system
available. Comments and complaints people made were responded to appropriately.”
Compliments received from families illustrate the value they attribute to the care and enablement
provided by Helen & Douglas House.
“Thank you so much for all your wonderful support and guidance. You are truly unique and
do an absolutely incredible job. The way you have supported us has been amazing and we
will certainly miss our trips to Helen House...”
“…my wife and I were totally impressed by the establishment, facilities and care ….. What a
truly remarkable place and staff who show kindness and care at all times…. We can’t find
words to describe how good a job you and the staff do, and we admire you all. It’s really
reassuring for us to know our friends and their baby are in such good, kind and
happy surroundings at this really difficult time. THANK YOU all so, so much and your truly
amazing devoted people.”
“Every second, minute, hour - night and day - that you have spent with [him] means so so
much and there simply aren’t enough ways to thank you.”
“You gave [her] 100% of your effort and care, it enables us to be together as a family both
before and after [she] passed away, and that support was invaluable to us all.”
Compliments from NHS hospital Consultants include:
“I wanted to thank you for the quite astonishing level of responsiveness, compassion and
quality of service that you provided to help [him] and his family. We really were very
impressed with all aspects of your set up at Helen House. We certainly took away many
learning points. It was also a pleasure to meet you and share some thoughts on service
configuration. Could you pass on our sincere gratitude to your amazing staff and I wish you
all the best in continuing to develop children's palliative care services within the UK.”
“I would like thank everybody that was involved in his care over the last weekend of his life
for the excellent, professional care that everyone provided him with in such an effective coordinated way…. As his lead Consultant… I would just like to say a huge thank you to all the
individuals in the different teams who were involved in his care particularly in his last few
days.”
Compliments from other professionals include:
“Just a note to say thank you for the care of [her] and her family. Your advice and support
were essential for [her] care at home and I know the family greatly appreciated your
compassionate care of [her] at Helen House. The family also spoke very highly of all the staff
at Helen House – I know that they would have found the situation even more difficult
without the safety net you provided. ” (Family GP)
The families’ “…gratefulness for the help and support they’ve received from all the
dedicated staff at Helen & Douglas House.” (Social Worker)
Page 17 of 23
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:
From a commissioning point of view, NHS Swindon CCG and Swindon Borough Council are
assured that Helen & Douglas House is providing good quality services, in terms of:
•
Patient Experience
•
Safety
•
Clinical Effectiveness
We are further assured that governance arrangements are robust in monitoring these areas
and that services are developed as issues and new practice arise.
High quality provision at the hospice has been evidenced through both external scrutiny and
sound internal practice for review and improvement. 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.
The service consistently provides highly valued support to children and young people in
Swindon with life-limiting conditions.
Caroline Little
Joint Children’s Health Commissioner
NHS Swindon Clinical Commissioning Group & Swindon Borough Council
Comment from local Healthwatch:
Healthwatch Oxfordshire is grateful to Helen and Douglas House for sharing the detail of the
draft Quality Account with us prior to publication. The Account is comprehensive and we
have no specific comments on the detail contained therein. We look forward to working
with Helen and Douglas House in the future.
David A Roulston
Interim Chief Executive
Healthwatch Oxfordshire
This Quality Account was also sent to the local Health & Wellbeing Board/Health Overview and
Scrutiny Committee for comment. No feedback has been received at the time of submission to NHS
England.
Page 18 of 23
Appendix 1 – Hospice Activity Data/Charts
Page 19 of 23
Page 20 of 23
Appendix 2 – NHS Standard Contract Reporting Compliance against National and Locally-Defined Quality Measures
Helen & Douglas House - Scorecard against 2013-14 NHS Standard Contract Requirements
NHS Standard Contract
Requirement Area
Conditions Precedent
Specific Requirement
CQC Registration
Business Continuity Plan: essential services/whole Provider
Indemnity arrangements
Arrangements for Counter Fraud & Security Management
Info Governance - agree plan for Level 2 compliance
Details of Caldicott Guardian + Senior Risk Owner
Adult & Child Safeguarding Policy + updating
Infection Control
Strategy compliance with national standards (incl. CQC)
Hand hygiene
Complaints
Number and type of complaints
Audit, incl. feedback on findings
Publication of upheld complaints
Nutritional Screening
Patients requiring nutritional needs assessment
NICE Guidance
Compliance
EOL Care
Identification of relevant national outcome measures
Quality Priorities
Quality Account
Patient Safety
Incidents summary
Never Events
Incidents Requiring Reporting
Patient Comms
Audit of patient review letters
Clinical Audit
Audit process &project plan; Annual Report
Premises Safety
Premises walkabouts
PLACE assessment
Commissioner-led discussion
Patient Experience
Recommendations from questionnaire
Workforce
Staff sickness, absence and vacancy rates
Psychological supervision
Clinical skillset
Staff complement
Francis Rpt #205 - impact of proposed major changes
Whistleblowing
Policy
Summary of concerns raised (anon.)
NHS Constitution
Referral criteria/policy
Pressure Ulcers
Acquired in hospice
Medicines Management Annual Medicines Management report
Falls
Incident report
Format of Report
Share
Share
Share
Share
Plan
Share
Share
Text
Text
Text
Text
Text
Text
Text
Text
Text
Text
Text
Text
Text
Text / Gantt Chart
By agreement
Text
Text
Stats
Text
Text
Stats
Text
Share
Text
Share
Text
Text
Text
PreQ1
Q2
Q3
Q4
Freq condition Jul-13 Oct-13 Jan-14 Apr-14 Compliance Comment
1

G
1

G
1

G
1

G
1

A
Agreed statement on IG compliance and action plan. On-going work.
1

G
1

G
A

G
Q




G
Q




G
A

G
X
G
None to report.
X
G
None to report.
A

G
Define

A
On-going national piece of work: to inform local implementation.
A

A
Quality report completed for 2012-13; not a formal Quality Account.
Q




G
X
G
None to report.
X
G
None to report.
H


G
A

G
Define
G
No request received from Commissioners.
X
G
No request received from Commissioners.
A (2A)

G
A

G
A

G
A

G
A

G
A

G
Define

G
X&A
G
None to report.
Define

G
X
G
None to report.
A

G
Q




G
Continued….
Page 21 of 23
NHS Standard Contract
Requirement Area
SIRI
Safeguarding Adults
CAS Alerts
Risk
Inspections
Equality
National Reports
Safeguarding Children
Carbon Reduction
User Experience
Activity
Surveys
Exception Reporting
Exception Reporting
Exception Reporting
Exception Reporting
Specific Requirement
Clinical Risk Mgmt Ann. Rpt (trends, recommendations)
SIRI Policy
Safeguarding alerts/investigations
Staff training re safeguarding vulnerable adults & levels
Safeguarding Lead report/achievements
Alerts and actions
Update from Clinical Risk Register
Advise CQC visit within 2 days
Provide copy of CQC reports, feedback, remedial action
Patient profile report (protected characteristics)
Diversity self-assessment, objectives& work-plan
Action plans from national reports e.g. Francis Report
Staff training re safeguarding children & levels
Audit proforma & Performance indicators
Audit proforma & Performance indicators (new reqt during FY)
Organisational policy
User involvement in major planned changes (90%)
Translation/Interpretation services required
Personalised care plan (100%) - spot check on request
User involvement in developing care plan (90%)
Referrals, referral outcomes, discharges, deaths (HH/DH)
Care provided at patient home
Bed-night activity (specific to CCG)
Caseload (specific to CCG, with user consent)
Friends & Family
User
Carer
Staff
Format of
Report
Freq
Text
A
Text
Define
Text
X
Stats
A
Text
A
Text
A
Text
A
Advise Date
X
Share
X
Stats
A
Text
A
Text
A
Stats
A
Proforma / Text
A
Proforma / Text
H
Share
A
Text / Stats
A
Text / Stats
A
Text / Stats
X
Text / Stats
A
Stats / Text
Q
Stats / Text
Q
Stats / Text
Q
Stats
Q
TBD
TBD
User Experience Survey
User Experience Survey
2A
Q
Q
Q
Q
Q2
PreQ1 Octcondition Jul-13 13

Q3
Jan14























N/A

N/A
Frequencies
1
One-off
2A
Every other year
A
Annual
H
Half-yearly (6 months)
Q
Quarterly (3 months)
X
By exception
Define One-off definition
Page 22 of 23
Q4
Apr14 Compliance
G

G
G

G

G
G
G
G
G

G

G
G

G

G
G
G
G

G
G
G

G
G
G
G
A
G
G
G
G
G
G
N/A
G
Reporting Status
 Completed
 Outstanding
 Deferred
Comment
None to report.
Q2: CQC Inspection Report.
None requested.
The specific "Friends & Family" test not recommended & not part of user experience survey.
Helen & Douglas House participated in the national Help the Hopices user experience survey.
Helen & Douglas House participated in the national Help the Hopices user experience survey.
Q2: Advice re Helen House Refurbishment & organisational governance.
Appendix 3 – Helen & Douglas House Clinical Audit Programme 2013-2014
Apr 2013
ID
Task Name
Start
Finish
May 2013
Jun 2013
Jul 2013
Aug 2013
31/3 7/4 14/4 21/4 28/4 5/5 12/5 19/5 26/5 2/6
1 Hand Hygiene Audit
01/04/2013 19/04/2013 14.08d
2 Record Keeping Audit
01/04/2013 19/04/2013 14.72d
9/6 16/6 23/6 30/6 7/7 14/7 21/7 28/7 4/8 11/8 18/8 25/8 1/9
3 Accountable Officer Audit 01/04/2013 02/05/2013 23.04d
4 Drug Error Audit
31/05/2013 05/07/2013 25.6d
5 Data Protection Audit
01/05/2013 27/08/2013 84.48d
6 Hand Hygiene Audit
03/06/2013 19/06/2013 12.8d
7
Management of Controlled
01/08/2013 09/09/2013 27.52d
Drugs Audit
8 Hand Hygiene Audit
01/08/2013 21/08/2013 14.08d
9 Record Keeping Re-Audit 01/08/2013 03/10/2013 45.44d
10 Hand Hygiene Audit
11
Management of General
Medicines Audit
01/10/2013 21/10/2013 14.72d
01/11/2013 10/12/2013 27.52d
12 Hand Hygiene Audit
02/12/2013 20/12/2013 14.08d
13 Complaints Audit
01/01/2014 07/02/2014 27.52d
14 Infection Control Audit
06/01/2014 10/02/2014 25.6d
15 Hand Hygiene Audit
04/02/2014 20/02/2014 12.16d
16 Clinical Governance Report 03/03/2014 20/03/2014 13.44d
17 Doctors Issue Audit
Sep 2013
Oct 2013
Nov 2013
Dec 2013
Jan 2014
Feb 2014
Mar 2014
9/2 16/2 23/2 2/3
9/3 16/3 23/3
Duration
03/03/2014 20/03/2014 13.44d
Page 23 of 23
8/9 15/9 22/9 29/9 6/10 13/10 20/10 27/10 3/11 10/11 17/11 24/11 1/12 8/12 15/12 22/12 29/12 5/1 12/1 19/1 26/1 2/2