EACH Quality Account
2013-2014
The EACH Vision
All families of children and young people
with life-threatening illnesses or complex
health care needs are able to access
appropriate services which are of high
quality.
1
Contents
Item
Part 1
Chief Executive’s statement
Part 2 Priorities for improvement and
statements of assurance from the Board
2.1 About EACH
2.2 Priorities for improvement 2014-15
2.3 Statements of assurance
2.3.1 Review of services
2.3.2 Participation in national clinical audits
2.3.3 Participation in local audits
2.3.4 Participation in clinical research
2.3.5 Use of the Commissioning for Quality
Improvement and Innovation (CQUIN) payment
framework
2.3.6 What others say about EACH
Page number
3
4
4
6
8
8
9
10
12
12
13
2.3.7 Data quality
2.3.8 Clinical coding error rate
15
16
Part 3 Review of quality performance
3.1 Priorities for improvement 2013-14
3.2 Additional quality markers
3.3 Involving children and families
3.4 Involving EACH staff
3.5 Statements from Healthwatch, Clinical
Commissioning Groups and Overview and Scrutiny
Committees
15
16
22
32
34
35
2
Part 1. Chief Executive’s Statement
I am delighted to present the second EACH Quality Account.
On behalf of myself and the Board of Trustees, I would like to thank all of our staff,
volunteers and supporters for their achievements over the past year.
EACH has a culture of continuous quality improvement in which opportunities to improve
care delivery and any shortfalls are identified and acted upon. The safety, experiences and
outcomes for children, young people and their families are of paramount importance to us
all at EACH. Our clinical governance committee, a committee of the EACH Board, provides
assurance, oversight and scrutiny on all matters relating to the quality of care.
We have achieved our priorities as planned over the past year. This is within the context of
a challenging economic climate and the need to proactively manage the increasing demands
on our service. This has inspired new ways of working to meet family needs in a more
holistic and person centred way whilst ensuring that caring for those at the end of their lives
and those with highest needs remain our priority.
I am pleased to report that the Care Quality Commission inspected all of our three
hospices services based at Milton, Quidenham, and Ipswich and assessed that the treatment
and care provided was fully compliant with the national Essential Standards for Care.
The final year of our three year development programme will see the completion of the
implementation of the outcomes based model of care and introduce a new approach to
promoting the emotional health and wellbeing of services users. However, we continue to
the look to the future and have exciting plans to reprovide the Quidenham hospice closer
to Norwich. This is subject to planning permission and a successful appeal for the £10million
needed to purchase the land and build and equip the new hospice.
Whilst Quidenham remains a well equipped and maintained facility, the capacity of the
building to deliver increasingly complex care becomes more of a challenge.
To the best of my knowledge, the information reported in this Quality Account is accurate
and is a fair representation of the quality of health care services provided by EACH.
Graham Butland
Chief Executive
28th May 2014
3
Part 2. Priorities for Improvement for 2014/15 and
Statements of Assurance from the Board
2.1 About EACH
East Anglia’s Children’s Hospices (EACH) is registered as a service provider under Health
and Social Care Act 2008 (Regulated Activities) to carry out the regulated activity of the
treatment of disease, disorder or injury.
EACH is a registered charity, number 1069284 and has the legal status of operating as a
Company Limited by Guarantee, company number 3550187.
Our Purpose
EACH supports families throughout their experience of caring for children and young
people with life-threatening illnesses and those with complex health care needs.
We provide a range of physical, emotional, social and spiritual support services which are
offered:
 holistically
 centred on the family
 to all families in East Anglia with children with life-threatening illnesses and complex
health care needs
 across a range of settings, including the home, hospice and hospital
 by specialist staff
 with the engagement of the community
EACH offers care to families with children and young people who:
 Live in the counties of Norfolk, Suffolk, Cambridgeshire and Essex. There is an
agreed pathway with Keech Cottage Hospice to provide care on an individual basis
to families living in North and East Hertfordshire.

Are less than 19 years of age. Young people referred at 16 years of age and over are
considered individually depending on whether they are entering the final phase of
their life and there are no alternative services available to match their choice of place
of care.

Have or had a condition with no reasonable hope of cure and from which they may
or will die from in childhood or early adulthood.

Have a condition (or are diagnosed with a condition in the antenatal period) for
which curative treatment may be feasible but can fail, such as children and young
people with cancer. These exclude deaths from :

Sudden accidental death including road traffic accidents;

Suicide;

Unlawful killing;
4



Stillbirth (>24weeks). If following a post-mortem it is determined that the
baby had a condition that would have met the EACH criteria then a family
support referral post delivery can be accepted.
Miscarriage
Acquired infection e.g. meningitis
Services are delivered wherever they are needed. This includes in the family home, in one of
our three hospices at Milton, Quidenham and Ipswich, in hospital and in the wider
community. Symptom management and specialist advice is provided across EACH by the
charity wide EACH True Colours Symptom Management Team. The organisational
management and care structure is shown below.
EACH Management & Care Structure
Chief Executive
Graham Butland
Director of Finance
Director of Care
Ruth Kiani
Tracy Rennie
Director of
Fundraising
Melanie Chew
Nurse Consultant
Head of Education
& Quality
Head of Service
Medical Director
Dr Linda Maynard
Carolyn Leese
Louise Denby
Dr David Vickers
Clinical
Psychologist
Specialist
Pharmacist
EACH Milton
EACH Treehouse,
Ipswich
EACH Quidenham
Nurse, care assistants
Play staff, family support
staff, music therapists,
physiotherapist,
occupational therapist,
catering, facilities and
cleaning staff
Nurses, care assistants
Play staff, family support
staff, music therapists,
physiotherapist,
occupational therapist,
catering, facilities and
cleaning staff
Nurses, care assistants
Play staff, family support
staff, music therapists
physiotherapist,
occupational therapist,
catering, facilities and
cleaning staff
Head of Marketing
& Communications
Head of Human
Resources
Simon Hempsall
Helen Grubb
EACH TCT Symptom
Management Team
Clinical Nurse Specialists
5
2.2 Priorities for Improvement for 2014/15
There were no areas of improvement identified as a result of the inspections of the locality
services by the Care Quality Commission.
The priorities for improvement are detailed in table 1. Care priorities are managed by the
EACH Care Management Team (ECMT). Progress is monitored by the Clinical Governance
Committee and reported to the Board quarterly.
Table 1 Priorities for improvement
Desired outcome
Priority 1 Complete the implementation of the
new personalised outcome based model of care
by :
Service user experience will be
enhanced through a more
personalised approach

rolling out the family reported outcomes based
approach across the existing case load including
the Holistic Needs Assessment and a
personalised offer of care

implementing the new ‘customer satisfaction’
care calls process and outcomes reporting
process
Clinical effectiveness will be
enhanced as a personalised offer
of care is agreed which matches
the most important goals and
outcomes for the family and
individual service users.
Achievement will be monitored
through regular review.
This priority was included as it is one of the objectives
of our 3 year care development programme. The
programme was developed in response to a series of
service evaluations carried out in 2010/11
Priority 2 Promote the emotional health and
wellbeing of service users by:

Clinical effectiveness will be
enhanced as targeted
interventions are delivered to
meet the agreed goals for support.
Reduced risk of complex grief
reactions through access to a
wider range of preventative,
resilience based support activities
Implementing a resilience based and needs led
model of support adapted from Kazak’s
theoretical framework including restructuring
the staff teams and introducing new ways of
working, developing a wider range of support
activities for service users and developing a new
Maintain service user safety by
approach to providing practice supervision for
ensuring staff practice is
staff.
monitored and improved through
This priority was included as it is one of the objectives practice supervision.
of our 3 year care development programme. The
Enhanced service user experience
programme was developed in response to a series of
as more support activities are
service evaluations carried out in 2010/11
available to more families
6
Priority 3 Strengthen clinical quality, service
user safety and clinical leadership by


Implementing a refreshed Quality and Risk
management framework which promotes
clinical leadership at all levels and across all
teams, reflects the new approach to monitoring
quality by the CQC and focuses on key clinical
risks
Improving our approach to incident
management and learning by implementing an
electronic incident reporting system
This priority was included as it is one of the objectives
of our 3 year care development programme as a result
of a review of our management and leadership
arrangements, a recognition of the increasing
complexity of care provision and the associated risks
and a review of our paper based incident management
arrangements in 2010/11.
Priority 4 Ensure staff competence to deliver
specialist children’s palliative care to children,
young people and families by:


Ensuring nursing staff continue to be able to
respond to all levels of clinical need by
completing the core knowledge and clinical
skills training
Implementing a training programme to underpin
the new approach to promoting emotional
health and wellbeing
This priority was included as it is one of the objectives
of our 3 year care development programme to
implement changes to ways of working and in
recognition of the increasing complexity of children’s
nursing needs and changes to interventions and
technology.
Priority 5 Commence the new children’s
hospice for Norfolk project
(subject to successfully obtaining planning permission)
Maintain and enhance service user
safety by modernising our
approach to incident management,
which facilitates an easier
identification of trends. This will
inform areas for improvement and
enhance shared learning across
teams
Maintain and improve clinical
effectiveness through audit of
standards of care and an improved
approach to clinical risk
management
A positive service user experience
is maintained as the quality of care
is contiguously reviewed and
improved.
Continued service user safety as
staff knowledge and skills are
developed further to meet the
changing needs of the service
users
Clinical effectiveness is maintained
as knowledge and skills are
developed to match care and
needs
Enhanced service user experience
through having confidence in the
skills and knowledge of the staff
Improved service user safety
through a modern, purpose built
hospice facility and equipment
7


Complete the internal design plans of the new
hospice building
Launch an appeal for £10million
This priority has been added following a review of the
current facilities by the EACH Board in 2013.Whilst
the current hospice meets the required standards and
is well equipped, there is no scope for further
development on site or within the building.
Enhanced service user experience
as the new building will be more
centrally located facilitating better
access to more families; have a
wider range of facilities to meet
the demands of providing more
complex care and enhanced care
facilities e.g. a hydrotherapy pool;
will have the space to offer more
hospice based activities for the
whole family.
2.3 Statements of Assurance from the Board
The following are statements that all providers must include in their Quality Account. Many
of these statements are not directly applicable to specialist palliative care providers, and
therefore explanations of what these statements mean are also given.
2.3.1 Review of services
During 2013-14, EACH provided the following NHS services to children and families living in
Norfolk, Suffolk, Cambridgeshire and North East, Mid and West Essex:
 Short breaks
 End of life care
 Symptom management
 Emotional support for all family members and those important to them, before and
into bereavement
 Music therapy
 Specialist play
 Hydrotherapy
 Family Information service
Care is delivered across a range of settings in line with the preferences of the family. This
includes in the family home, one of our three hospices, hospital and the wider community
including reaching into residential schools.
End of life care and symptom management for the child including face to face care and
access to telephone support is available at any time of the day or night throughout the year
wherever they are being cared for.
Care is delivered by our three hospice based multi-disciplinary teams at Quidenahm,
Norfolk, Milton, Cambridge and the Treehouse, Ipswich and by our EACH wide symptom
8
management team of clinical nurse specialists. Staff are trained to deliver care wherever it is
required.
EACH also hosts the East Anglia Managed Clinical Network (MCN) which was funded in 2013/14 by
Cambridgeshire Clinical Commissioning Group.
The MCN incorporates professionals and organisations who support families throughout
their experience of caring for children and young people with life-threatening illnesses and
those with complex health care needs.
The MCN also promotes partnership working with others to increase the provision across
East Anglia of palliative care services which are of high quality and meet the needs of
children, young people and their families.
The network is currently piloting a project which provides access to specialist medical
advice all of the time to families living in Norfolk, Suffolk, and Cambridgeshire and North
Essex. It also develops clinical protocols and procedures to ensure a consistent approach to
clinical practice and provides an education programme available to all professionals who
deliver children’s palliative care.
We have reviewed all the data available to us on the quality of care in our services.
The income generated by the NHS services reviewed in 2013/2014 represents 100% of the
total income generated from the provision of NHS services by EACH.
All services delivered by EACH are funded through a combination of fundraising activity and
contracts with the NHS and two County Councils. Funding received from statutory sources
amounts to 27% of the total income. These arrangements mean that all services delivered by
us are only partly funded by the NHS.
2.3.2 Participation in National Audits
During 2013/14, no national clinical audits and no national confidential enquiries covered
NHS services provided by EACH.
During the period EACH participated in no (0%) national clinical audits and no (0%)
confidential enquiries of the national clinical audits and national confidential enquiries it was
eligible to participate in.
The national clinical audits and national confidential enquiries that EACH was eligible to
participate in during 2013/14 are as follows: NONE
The national clinical audits and national confidential enquiries that EACH participated in and
for which data collection was completed during 2013/14 are listed below alongside the
number of cases submitted to each audit or enquiry as a percentage of the number of
registered cases required by the terms of that audit or enquiry:
9
EACH was not eligible in 2013/14 to participate in any national clinical audits or national
confidential enquiries and therefore there is no information to submit.
The reports of no national clinical audits were reviewed by the provider in 2013/14 and
EACH intends to take the following actions to improve the quality of healthcare provided.
There were no national clinical audits relevant to the services provided by EACH therefore
there are no actions to report.
2.3.3 Statement: participation in local clinical audits:
The following audits were carried out by EACH in 2013/14.
1. Medicine & Healthcare Regulatory Agency - audit of procedures for accessing and acting
on alerts
2. Medicines Management audits:
2.1
Audit of Administration of Medicines Standard Operating Procedures (Treehouse
and Quidenham)
2.2
The Administration of Controlled Drugs (CDs) in the Hospice (Treehouse and
Milton)
2.3
Receipt of CDs into the hospice (Milton and Treehouse)
2.4
Audit of daily CD balance checks (Milton)
2.6
Medicines Administration Record (All three hospice localities)
2.10
Audit of Receipt and Disposal of medicines (All three hospice localities)
3. Infection Control – Infection control audits were undertaken at the three hospice sites
conducted under the terms of EACH’s new Service Level Agreement (SLA) with Norfolk
Community Health & Care NHS Trust (NCH&C) for the supply of Infection Control services.
NCH&C used their own audit tool and each hospice was audited by a different member of the
NCH&C infection control team.
4. Audit of Practice Supervision- audit of policy and practice
5. Audit of Student Nurse Clinical Placements- audit of clinical placements by the University
of East Anglia, University Campus Suffolk and Anglia Ruskin University.
5.1 Audit of Clinical Placements in Quidenham
5.2 Audit of Clinical Placements in Treehouse, Ipswich
5.3 Audit of Clinical Placements in Milton
Summary of findings:
10
Medicines and Healthcare Regulatory Agency audit of procedures
All alerts had been appropriately received, reviewed, triaged and stored in line with the
EACH procedure. It was noted that a small number of action taken by two localities had not
been recorded. Managers were been reminded to complete this part of the process and
improvement has been achieved.
Medicines Management Audit
A programme of medicines audits has begun which is 6 months post implementation of new
Policies, Standard Operating Procedures (SOPs) and medicines administration record
(MAR).. The purpose of the audits is to check that the revised policy, SOPs and have been
integrated into working practice and the MAR is completed in line with procedure.
An audit of Controlled drugs (CDS) in the community could not be completed as there
were no CDS in use at the time. This will be completed when CDs are prescribed and in
use in the community. The audit of the administration of (CDs) in the Hospice could not be
completed at Quidenham as no CDs were in use.
The findings of the audits were reviewed by the Pharmacy strategic group. The audits
showed that most staff appear to be well- informed and practice consistently in-line with
EACH policy and SOPS. There was no practice witnessed which was unsafe or caused
concern.
CDS are not frequently used in the hospice prompting improvements such as suggesting
displaying the CD storage information sheet more prominently and the need to incorporate
regular updates about storage and management of CDS into the locality medicines
management training. The recording of the evaluation of the effects of symptom
management medication was found to be inconsistent and this is being addressed by
developing the process of recording in the electronic SystmOne care record.
Infection control
This was the first audit carried out by our local infection control service partner. It primarily
focussed on the environment and facilities. It was noted that overall the hospices are clean,
that infection control is integral to service delivery and that there are evidence based
policies and practice in place. There were several items which required action but none
were assessed as a ‘red risk’ rated action. An action plan to address the findings was agreed
and approved by the ECMT and progress is as planned. Actions included items such as the
removal or replacement of soft furnishings and carpets in some areas, decluttering and
improvements to storage and amendments to cleaning schedules.
In addition, there was learning identified to improve the audit process by our partners to
ensure a consistent approach to audit, reporting of results and agreement of resulting action
plans.
11
Practice Supervision
The findings of the audit showed that whilst staff found practice supervision beneficial there
were inconsistencies in how it is implemented and monitored. There is also a need to
train/refresh staff, both as supervisors and supervisees. The ECMT reviewed the findings of
the audit. Managers have been reminded to monitor practice supervision as part of the
management supervision process. It was agreed that the current practice supervision policy
should be considered in the context of the new approach to promoting emotional health
and wellbeing. A review of the practice supervision policy will be carried out during
2014/15.
Student nurse Clinical Placements
All areas were found to be fully compliant with the required standards with no further
action required
2.3.4 Participation in clinical research
The number of patients receiving NHS services provided or subcontracted by EACH in
2013/14 that were recruited during that period to participate in research approved by a
Research Ethics Committee was 13.
Service users were invited to take part in two pieces of research conducted by external
organisations. There were three service users recruited to the first research project, ‘The
lived experiences of children who have brothers or sisters with progressive and life-limiting
conditions’ S Middleton MSc Thesis University College Suffolk.
There were ten service users recruited to the second research project, ‘Parental
Experiences of Hospice in the Care of a Child through an Interpretive Phenomenological
Analysis of Reflective Diaries’. L Sayer University of Leicester.
2.3.5 Use of the Commissioning for Quality Improvement and
Innovation (CQUIN) payment framework
EACH income in 2013 -14 was not conditional on achieving quality improvement and
innovation goals through the Commissioning for Quality and Innovation payment framework
because EACH does not use any of the NHS Standard Contracts and is therefore not
eligible to negotiate a CQUIN scheme.
12
2.3.6 What others say about us
Care Quality Commission
EACH is registered with the Care Quality Commission (CQC). The CQC has not taken
any enforcement actions against EACH during the year 2013-14.
EACH has not participated in any special reviews or investigations by the CQC during 201314.
EACH is inspected annually by the CQC. All three hospice sites were inspected during the
year 2013-14 and were found to be fully compliant with all of the required standards. The
following statements are the summary statements made by CQC following inspection.
EACH Quidenham
‘We spoke with a young person who was staying at the hospice and six parents who told us
that staff consulted them and respected and acted on the decisions they made about the
nursing care and support they agreed to.
Our observations showed us that staff members were responsive to the needs of the
young people and that they were given the support and attention they needed. We saw that
the young people had a positive experience of being included in conversations, decision
making and activities.
We found that plans of care contained the information staff members needed to ensure that
the health and safety of the young person was promoted and protected.
Parents told us that the young people staying at the hospice were safe, provided with the
nursing care and support they needed and that the staff were, "Wonderful and kind." They
also told us that the service their child received at home was "Invaluable" and that support
was offered to the whole family.
Medication was administered, recorded and stored accurately and safely.
Parents told us that good staffing levels were provided at the hospice and that if staff
absence was not covered for their home support that they were offered an alternative date
and time.
The records held were complete and up to date and ensured that staff members had
access to information that protected people and ensured their needs were met.
EACH Milton
‘As part of this inspection we spoke with two young people who used the service and five
relatives for their views and experiences. We also spoke with the registered manager, two
care managers, the young person lead and a carer. We looked at service information and
care plan records for three young people who were in the process of transitioning into
adult services.
13
Relatives told us they had received detailed information advising them of the services and
support available to them. Comments included, "We received a huge amount of
information."
Young people who used the service told us they were involved in discussions and
decisions about the care they received. Comments included, "My independence is
important to me, I feel this is recognised and respected."
We saw the provider worked in a multi-disciplinary manner both internally due to the
health and social care professionals employed, and externally with professionals who were
involved in the care of children and young people who used the service.
Relatives told us they found the service provided an invaluable support to them and that
they felt their relative was well cared for in a safe and protected environment.
Comments included, "I don't have any worries about leaving my son in the care of the staff."
We found staff employed at the service were well supported and received a comprehensive
induction, and on-going training in the needs of the children and young people they cared
for.
EACH Treehouse
We spoke with one parent of a child who used the service. Positive feedback was given
regarding the care and support provided by the hospice.
They told us that the hospice was the only place they trusted to leave their child for care
and respite. They said, "You can't ask for a better service."
We found that care records were detailed and updated regularly with the involvement of
children and young people's families.
We found that the service was clean and hygienic throughout and that the service had
robust systems in place for the maintenance of all equipment used.
The service had robust recruitment procedures in place and staff were well trained and
supported.
The service dealt with complaints in an appropriate way and also learnt from the outcome
of complaints.
External Professionals and Organisations
Below are a few examples of the things that people and organisations external to EACH
have said about us:
The Suffolk Child Death Overview Panel sent a letter commending the ‘excellent multi-agency
working between EACH and Ipswich Hospital’, enabling parents to fulfil their wish to take their
14
baby home from hospital as a family before he died, and ‘the high quality of bereavement
support subsequently provided’.
“Thank you all so much for giving me the opportunity to come and see what you do here.
It is fantastic. I will remember what you have told me when I am eventually allowed to see
patients and their families”. Medical Student on placement to EACH.
Feedback from founders of a new hospice in Australia who visited England to look at how
hospice care is delivered:
“We've been back in Australia just over a week now and we've probably experienced the
worst jet lag ever. We returned and immediately hit the ground running again but have
been very much inspired by the Milton facility and the EACH culture.
I wanted to thank you so much for being available to host us at Milton while we were there
in the UK. We were so impressed by the great work being done by you, Graham and the
team at EACH.
The knowledge you shared from your experience was highly valuable to us and we are
extremely grateful. I'm sure when we open our facility there will be a little bit of an EACH
Milton feel to it.
We look forward to further opportunity to correspond in future as we build Hummingbird
House for Queensland families. Thanks once again and we look forward to being able to
keep in touch and keep you updated as to how we are progressing. ”
2.3.7 Data Quality
Good data quality and information management is essential to delivering high quality care.
The Information governance policy and procedures provide the framework to ensure it is an
integral part of EACH’s governance arrangements.
NHS Number and General Medical Practice Code Validity
EACH did not submit records during 2013-14 to the Secondary Users Service for inclusion
in the hospital episode statistics which are included in the latest published data. This is
because EACH is not eligible to participate in this scheme.
Information Governance Toolkit Attainment levels
EACH submitted its annual information toolkit assessment in March 2014 for which EACH
received confirmation of the statement of compliance from the Health & Social Care
Information Centre (HSCIC).
15
2.3.8 Clinical Coding Error Rate
EACH was not subject to the Payment by Results clinical coding audit during 2013-14 by the
Audit Commission.
Part 3. Review of Quality Performance
EACH is currently providing support to 543 families including 735 individual family members
or those important to the child and family. This represents all service users including the
bereaved.
369 non bereaved service users are accessing one to one support and /or support in a
group; and 233 bereaved service users are accessing one to one support and /or support in
a group.
During the reporting period, 497 children and young people with palliative care conditions
were supported by EACH. We are currently caring for 314 children and young people with
palliative care needs.
During the reporting period, there were 96 children/ young people referred to EACH. 66
babies, children or young people died during the year of which 24 children received end of
life care by the team.
In 2013/14, EACH delivered in excess of 10,400 sessions of care to children, young people,
family members and those important to the family. Sessions were delivered during the day,
overnight, in the hospice, in the family home or the child’s usual place of residence e.g.
residential school. This equates to more than 80,300 hours of care.
Sessions of care include the care of the sick child or young person, face to face and
telephone access to symptom management advice, play and hydrotherapy as well as face to
face support for family members and those important to the family. Families have also
access telephone support which is available 24 hours a day and have met and linked with
other families through family based events such as music in the woods, Christmas parties,
family activity days and activities such as the annual memory days, sibling days, mums nights,
dads nights.
3.1Review of priorities for improvement 2013-14
The priorities identified in the Quality Account 2013/14 are recorded below followed by a
response which reports progress.
Monitoring and oversight of the priorities was carried out the management executive and
Clinical Governance committee. Progress against objectives is reported quarterly to the
Board and a review of care quality and performance formed a major part of the Board
annual away day in November 2013.
16
Priority 1 Ensuring Quality and Consistency across EACH (clinical
effectiveness & service user experience)
This priority will be achieved by:
- completing the root and branch review of all care processes from referral to
discharge including link working, short breaks allocations and bookings procedures and
implementation of these new approaches.
- implementing an evidence based and outcomes driven approach to delivering
emotional health and wellbeing support for children and families. This includes agreeing a
range of clinical tools to identify needs and goals and measure outcomes, agreement of
interventions to meet all levels of need, revising job roles and responsibilities and associated
competencies.
Progress will be monitored against the change plan milestones and reported to the EACH
Management Executive. Oversight is provided by the clinical governance committee.
RESPONSE
All care processes have been revised to support the new outcomes based and personalised
approach to care service delivery for families. New processes have been piloted and have been
introduced for all new referrals. The new ways of working ensure a holistic child and family based
approach and outcomes identification by families from the point of referral. This approach will be
rolled out across the existing case load over the next 12 months.
In response to the increasing demand for short breaks a new process for managing short breaks
has been introduced.
The development of an evidence based approach to promoting emotional health and well being
for service users in the children’s palliative care setting proved to be more challenging initially
than expected as the evidence base in this area of care is very limited. However, we found that there
are theoretical frameworks relating to children and young people with specific diseases, long term
conditions and cancer, the principles and content of which are transferrable to the children’s palliative care
setting.
With guidance from our own clinical psychologist and our Paediatric Clinical Psychology Consultant
partners at Great Ormond Street and Addenbrookes Hospital we have adopted the approach described
by Kazak (2006).
Kazak’s Paediatric Psychosocial Preventative Health Model (PPPHM, 2006) is ideally suited to the EACH
model because it promotes resilience and builds upon and recognises families’ strengths; it also indicates
approaches which are both targeted and preventative. Kazak’s model has been validated for those affected
by cancer as well as long term conditions such as cystic fibrosis. It is compatible with appropriate
legislation and recommended practice such as the Bereavement Care Service Standards (2014).
The model of support has now been defined and a new staff team structure and job descriptions
developed. Implementation of the new approach will commence on May 7th 2014. This work will continue
as a priority for 2014/15.
17
Priority 2. Ensure the specialist and increasingly complex care needs
of children are met safely by competent staff (patient safety, clinical
effectiveness & service user experience)
This priority will be progressed in two parts:


Ensuring the continued competence of care staff as the complexity of care and the
amount of end of life care increases.
Ensuring safe medicines management as the complexity of children’s medicines
regimes increases and the requirements relating to medicines management continues
to change. There will be a particular focus on IV therapy, management of cytotoxic
and hazardous medicines and the handling of controlled drugs
2.1 Ensuring Staff Competence
This will be achieved by:
-
Identifying new areas of knowledge and skill required to care for a child at the
point of referral and implementing required training for care commences
Implementing the revised three year rolling programme approach to clinical
competencies for care staff.
Progress will be monitored by:


The locality weekly referrals and complex care panels
Carrying out audits of competencies achievement, the core knowledge and skills
programme, the revised induction programme and by seeking feedback from staff
and managers as to the effectiveness of the new approaches
2.2 Ensuring safe medicines management in the hospice and in the
community
This will be achieved by:
-Implementing the revised Controlled Drugs (CD) policy and Standard Operating
Procedures (SOPs) and the redesigned CD register
- Implementing the cytotoxic and hazardous medicines management SOP and
Intravenous therapies SOP
- Auditing compliance with the new medicines management SOPs introduced in 2012
13.
This will be monitored by the Pharmacy Strategic group and will include:


An audit of the implementation of the new Controlled Drugs SOPs
Completing the annual Accountable Officer Controlled Drugs audit
18


Continued monitoring of medicines incidents and implementing any resulting changes
to practice and shared learning from them.
An audit of medicines administration and reconciliation.
RESPONSE
Staff Competence
The weekly panel continues to monitor new referrals and existing service users to identify
clinical interventions which are new to the staff team or those which are rarely used. A
risk assessment is carried out and plans implemented to manage the identified risks. This
includes providing training. Examples include the use of methadone during end of life care
and the care of a child who uses technology called Optiflow, delivery of high flow oxygen via
nasal cannulaea, to support their airway.
The new rolling programme of Core Knowledge and Skills training was implemented. All
staff have completed the core knowledge and skills training relevant to their role.
One member of staff did not complete all elements of their mandatory training within the
EACH standard of 3 months post return from maternity leave. Arrangements have been
made for them to complete the training. 5 members of staff were unable to complete the
verification of death training due to the unexpected sickness of the trainer. This has been
rearranged.
More detail relating to the training provided is reported in section 3.2d (i).
In response to a ‘near miss’ where a member of staff did not recognise and respond to the
early signs that a child with complex needs and associated learning disability was becoming
acutely unwell, additional training for nursing staff relating to the recognition of an acutely
unwell child was delivered and a PEWS (paediatric early warning system) and associated
escalation procedure to seek additional clinical advice was developed and implemented.
Medicines Management
A revised medicines management policy and standard operating procedures (SOPs) were
implemented. An audit of the new policy and procedures was carried out towards the end
of the reporting period. The results were very positive demonstrating that staff had
incorporated the new ways of working into their practice. A change to practice relating to
reconciliation of medicines was introduced as a response to audit findings.
SOPs introduced were:
 Administration of Medicines SOP
 Reconciliation of Medicines SOP
 Management of FP10 Prescription Forms
 Protocol for the Use of Homely Remedies in Hospice Buildings
 Prescribing, Preparation And Administration Of Buccal Diamorphine
 Management of a Child/Young Person receiving oral cytotoxic chemotherapy or
hazardous medicine SOP
 Administration of Controlled Drugs in the Hospice
19







Management of Controlled Drugs in Children’s/Young People’s Own Homes
Daily Controlled Drug Balance Checks (Hospice)
Discharge of Children/Young People with Controlled Drugs
Controlled Drug Disposal
Receipt of Controlled Drugs into the Hospice
Handling of Anticipatory Medicine Boxes in Hospice Buildings “Just in Case”
Handling of Anticipatory Medicine Boxes in the Community “Just in Case”
Priority 3 EACH model of clinical leadership is implemented and
embedded into the culture and practice of EACH (patient safety, clinical
effectiveness and service user experience)
This will be achieved by:



Carrying out clinical leadership model road shows led by the EACH Care
Management Team to engage with staff and the family forums to explain the model
of leadership, what it means to individuals and how it will work in practice.
Recruiting a symptom management team service manager to provide additional time
and focus for the nurse consultant to oversee and champion the implementation of
the EACH approach to clinical leadership and clinical leadership activities
Care managers changing ways of working to work across 7 days to provide highly
visible leadership in the care areas
This will be monitored by



Evaluation of the road shows by staff
Care managers providing evidence of clinical leadership activities.
Evidence of staff involvement at all levels in clinical development activities including
audit, reflective practice activities, review and development of clinical policies and
SOPs
RESPONSE
Leadership Approach
A distributed leadership approach is being implemented across the care service. Following
presentation to the EACH Board and locality care managers, the EACH values have been
amended to incorporate the following core value which applies to all irrespective of role.
‘Leadership and excellence -by making a personal commitment to high quality care
and services ‘
Job descriptions have been amended to reflect this. Induction has been refreshed to
ensure a focus on leadership and how this applies to all roles in EACH.
20
Symptom Management Team Service Manager Recruitment
This was completed in December 2013, enabling the Nurse Consultant to focus activities
on developing clinical leadership activities including developing a new approach to quality
assurance in EACH.
Care Manager ways of working
The role of the ‘duty care manager’ was successfully implemented to give additional
visibility and support to the clinical team over 7 days in the delivery of care, support staff
to carry out audits and work alongside staff to monitor and develop clinical skills. In
addition to this, new on call arrangements were also implemented to ensure access to
clinical expertise and service management expertise 24/7.
Priority 4 Improvements to EACH Hospice care facilities, equipment
and care vehicles
This will be achieved by completing the refurbishment of the facilities at Milton and
Quidenham and purchase and use of the fleet vehicles to provide care in the community and
transport for families to access EACH care services.
A detailed project plan incorporating key milestones will provide the basis for monitoring of
this priority.
RESPONSE
EACH successfully secured £780k from the department of health to improve facilities at
Milton and Quidenham and purchase vehicles to provide care in the community and
transport for families. The family forums were involved in the development of the
applications.
Improvements at Milton include an upgraded reception, hydrotherapy pool changing area,
a new Young person’s ‘’Den’, improved wheelchair access to the sensory garden, the
creation of a Haven- a room dedicated for use by those who wish to take time to reflect
or pray, the installation of additional hoists and new flooring in bedrooms, new dining
furniture and specialist play and clinical equipment.
Improvements at Quidenham included upgrading the family car park, updating of a
bathroom and general decoration and refreshing of the hospice.
EACH purchased 7 vehicles of which 3 are adapted vehicles for transporting service users
and 4 are vehicles used to provide home care.
21
3.2 Additional Quality Indicators we have chosen to measure
In the absence of a national minimum data set and nationally agreed indicators of quality for
Children’s palliative care, EACH monitors:




complaints and concerns (service user experience, clinical effectiveness)
commendations (service user experience, clinical effectiveness)
incidents and accidents (patient safety, service user experience, clinical effectiveness)
staff knowledge, skills and practice development including scholarly activity,
involvement in clinical practice development activities and compliance with
professional education and training requirements (patient safety, clinical
effectiveness)
3.2a Complaints and Concerns
All complaints and concerns whether they are made verbally or in writing are treated
equally seriously and are fully investigated. Learning from complaints and concerns is shared
with staff including required changes to practice. The person raising the concern or
complaint is advised of the investigation process, findings and resulting changes to care
practice.
Across EACH, there were 8 complaints or concerns made during the year (Quidenham = 2,
Milton = 3, Treehouse =3). This is in the context of the delivery of 10,400 face to face
sessions of care (80,300 hours of care).
The complaints and concerns fell within the following themes:
Dissatisfaction with the care received.
There were three complaints in total of which two related to a concern that an element of
the care plan followed had not been followed completely and one complaint which related
to the possible omission of a child’s medicine on one occasion. The issues were discussed
with the family and staff, care plans updated and staff reminded of their responsibilities in
delivering personalised high quality care. In relation to medicines administration, staff now
wear high vis red vests when administering medicines to ensure that other staff do not
disturb or distract them.
Communication.
Two complaints related to communication with parents. One related to the quality of
information provided to the parent on discharge from the hospice and another related to
communications between EACH and an external professional which the parent had not
been aware of. A handover form was implemented to resolve the first issue and the second
was resolved by meeting with the parent and clarifying what had been communicated and
the reasons why.
22
Access to services.
There were three which related to accessing an element of EACH services. One related to
the decision to withdraw an offer of short break to a child immediately post complex
surgery on the grounds of safe care, the second and third related to the decision taken to
discontinue EACH services as the child no longer met the eligibility criteria. In response to
the first complaint, the family were offered additional support post surgery at home in
partnership with the local NHS team and the care managers were reminded of the process
to carry out a risk assessment following a request for a short break of this type before an
offer of care is made. In response to the second and third, the service manager met with the
families to clarify why their children could no longer access EACH services.
All complaints were resolved locally with oversight from the EACH Care Management
Team.
3.2b Commendations
EACH received many commendations throughout the year from families about various
elements of the service. Below are some of the letters and messages received. Locations of
care have been removed and details anonymised to protect the privacy of the families.
We have really struggled to find the words we wish to say to you all and even now still not sure we
have found them!
On that Thursday morning we had no idea what to expect when it was suggested we stay with you
for the time [child’s name] had left. Thinking maybe it would be hours I wasn’t really sure what we
would get from it. I have never been so wrong. From the moment we walked through your doors I
think it was the first time I breathed out for days.
When people ask me now what it was like at the hospice, I feel I can’t explain as it would never do
it justice. We want to thank you for all the support everyone gave to us. Every member of staff we
came into contact with made us feel comfortable and never made us feel like we couldn’t approach
you. Thank you for putting up with all our family too! (that is a job in itself).
We often think about what our time with [child’s name] would have been like if we didn’t have the
option to be able to stay with you and we believe it would have been so much harder. Ultimately we
think what you gave us was time, quality time just to get to know our child without the day to day
stresses of being at home or the constant worry if she was O.K. For that we are eternally grateful.
I find it so hard that those few weeks were some of the most difficult to face but also the most
special weeks we have been given as that was the time we were a family of four.
The hospice and the staff will forever be in our hearts. The place we got to know our daughter and
effectively her home. We hope over the years to come it will be somewhere we can support but also
somewhere special to bring [sibling name] and remember.
We are eternally grateful.’
23
‘We are writing to thank you personally for all that you have done to support our family over the
past two weeks. Your care and attention has been second to none. We would also like to add our
thanks for the past care and support you have given the family’
‘Many thanks for the fabulous day we had at the Museum with EACH. Everyone was really friendly,
helpful and kind. It was a real treat for us and [child’s name] (quite a rare thing for our family).’
‘To all at the hospice, thank you for all your help and support over the last few years, I can never
express our gratitude, you are wonderful! Me and a few friends are now off to do the 9 mile walk
to try and help in some way’
‘Thank you so much for all the help you gave us while we were going through the hardest times of
our lives with our daughter. You gave us help when we didn’t know where to turn. You gave us
home help when we were struggling. We had a play specialist coming around which helped
developmental skills so much. ‘
‘I was a shy little girl but now I’ve really come out of my shell. You really did go beyond what we
expected, we felt so relaxed, it was like a home from home. Keep up the good work, you are all
stars!! Also to have the opportunity of meeting the Duke and Duchess of Cambridge was a dream
come true. Thank you for all your hard work, care and kindness.’
‘Thank you so much for all you have done for us all and for the fantastic care you gave our son in
his short life. We could not have got through his final days without you.’
‘Following the Memory Day which took place on Saturday last we are writing to congratulate all the
staff who made the day such a special one. There is no doubt whatsoever that a great deal of
thought and work must have gone into all that took place’ .’
‘I have always enjoyed memory day and you get it right every year’
‘My son attends hydrotherapy at the hospice on a fairly regular basis and has done for well over a
year (I think!). He has very complex needs and it can be difficult for him to 'click' with some of his
therapist/health care providers but with Jane he has a trusted friend. He enjoys his hydro sessions
very much which is why we rarely miss any and is happy to do his work in return for a bit of a
splash. I also feel he is benefitting from these sessions. They have also been very helpful in helping
me with the handling of him and also with additional physiotherapy advice. We only wish we could
come every week & stay for longer in the pool! They also make a cracking cup of tea.’
‘Thank you all so much for your kindness and patience. I truly believe that if you could have saved
my son’s life you would have, but you saved mine instead’
24
‘Just a little card to say thank you so much for everything you have done for us as a family. Your
work is outstanding and there are no words to thank you enough. You guys really have supported us
all. Thank you.’
Feedback received after a sibling day
‘I am not quite sure who to thank for all that your team did for (sibling), our elder and able-bodied
son, this morning and afternoon but they clearly did a terrific job. (Sibling) was very cheerful and
bubbly when he came out at 15:00 this afternoon, and all the way back home to Newmarket, and
he told me that he had had "a really good time". I even overheard him asking someone, as he left,
to "keep my painting for next time", high praise indeed from a six-and-a-half-year-old!
He loved making "the den" and raved about the hospice cooks "delicious lunch" (apparently
hamburgers and chips, all sorts of ice-cream and lots of different sprinkles and some raspberry
sauce)
It is so very kind of you to give this sort of attention to siblings as they are so often overlooked by
care-givers, who naturally tend to concentrate almost exclusively on "the obviously most wounded
member of the tribe". The extension of your generosity to siblings, who inevitably get "caught up in
the slip-stream" of everything, is truly remarkable and the sign of a really genuinely caring
organisation.
I would be most grateful if you could pass on my thanks and congratulations to all those who
helped (including those behind the scenes including the ever-warm-hearted, and so most lovable,
hospice cook).’
3.2c Incidents and Accidents
EACH has a positive and proactive approach to incident reporting and management. Staff
are encouraged to report all incidents within the context of a learning culture. Incidents are
categorised by type and severity using a red, amber and green scoring system. Incidents are
scrutinised by relevant clinical practice groups, for example, infection control related
incidents by the infection control group, medicines incidents by the medicines management
group and service user information incidents by the information governance group. All other
incidents and accidents are monitored by the EACH Care Management Team and the
locality based governance groups which include care and facilities staff and a service user.
Incidents which are scored as red are reported to both the management executive and
clinical governance committee.
There were a total of 522 incidents /accidents including near misses across the whole
service. This number includes all incidents within the care directorate and includes clinical
and non clinical incidents.
There were no serious incidents and no incidents which resulted in clinical harm to the
service user.
25
There was one near miss which caused concern and triggered an urgent response. A
member of staff did not recognise and respond to early signs that a child with complex
needs and associated learning disability was becoming acutely unwell .The action taken and
change to practice is reported below.
The highest number of clinical incidents relates to medicines management (n=180). This
reflects the nature and complexity of clinical interventions and treatment of children and
young people we care for. These include all incidents relating to medicines management
including incidents relating to verification of medicines, reconciliation of medicines , families
bringing in insufficient supply for a stay or medicines which have expired or incorrectly
labelled; recording incidents, pharmacy labelling incidents and medicines administration to
the child/young person. There were 51 incidents relating to direct administration of
medicines to children and young people. None of these caused ill effect or resulted in harm
to the service user. Every incident is reviewed and lessons identified. The majority of
incidents occur as a result of staff not following procedure. However, the importance of
staff not being distracted whilst administering medicines has been identified as a
contributory factor. As a result staff wear high visibility tabards, medicines are prepared for
administration in a room with the door closed wherever possible and staff have been
advised of the importance of not disturbing nurses whilst administering medicines.
Changes to practice
The majority of incidents are as a result of staff not following existing policy and procedure.
These are addressed with the individual and a period of support and supervised practice is
implemented if required. Learning is also shared across the teams and staff are reminded
about policy and practice relevant to the incident.
The near miss noted above resulted in additional training for nursing staff relating to the
recognition of an acutely unwell child and the development and implementation of a PEWS
(paediatric early warning system) and associated escalation procedure to seek additional
clinical advice.
In response to a review of the incidents relating to the reconciliation of medicines on
admission for a short break, care staff now complete a second reconciliation check during
the first night of the stay. This identifies counting errors more quickly and also identifies any
issues with medicines e.g. enough supply for the stay early in the admission so that prompt
action can be taken to address them.
Following an incident when staff needed to source repeat medication out of hours at the
weekend, a twice weekly stock check of medicines for children having a longer term stay at
the hospice was introduced.
26
3.2d Staff knowledge, skills and practice development
The evidence of learning and development activities carried out by staff demonstrates
EACH’s commitment to this aspect of quality assurance.
A summary of learning and practice development activities is provided in the sections below:
3.2d (i) Annual mandatory training and Core Knowledge and Skills Training
(CSK)
Annual mandatory training was provided to care staff in the following areas.








Infection Control
Resuscitation
Medicines Management
Moving and Handling
Verification of Death
Professional Boundaries
Information Governance
Display Screen Equipment
The Core knowledge and skills training is a mandatory three year rolling programme of
training. All staff completed the training relevant to their role as identified in the CSK
programme. Training has been provided in the following areas:




















Advanced Communications and Assessment
Communication Skills / Mental Capacity and Consent
End of Life and Symptom Management
Introduction to Neonatal Care
Exploring Spirituality, Emotional Health and Wellbeing
Positive Handling (Team Teach)
Person Centred Thinking/Planning
Recognition of the acutely unwell child – Paediatric early warning system(PEWS),
Vital Signs and Pain; Cardio-respiratory; Gastro-Intestinal and pain; Neurology;
MCN IV Training Day
Nippy Junior Ventilators Training
Oral Cytotoxic Chemotherapy and Hazardous Drugs Awareness
Oxygen/Suction/Tracheostomy/Seizure Management
Enteral/Oral Care and Oral Feeding
Safeguarding Induction e-learning
SystmOne (including record keeping)
Infection Control - Higher Level Clinical Session
Vagus Nerve Stimulation
MCN - Cultural Awareness Workshop
Play - Distraction Therapy
Induction 1: - End of Life
27










Induction 2: - About EACH, Risk Management, Incident Reporting, Professional
Boundaries and Looking after yourself
Working with Volunteers at EACH
Role of the Link Worker
Food Safety in Catering - Food Safety in Catering - Level 2 Award
MIDAS - Midas Mini Bus Training
Fire Awareness Training
Supervision & Appraisal - Developing Staff through Supervision & Appraisal
Practice Supervisor training
Mentor Update
HR-Excel - MS Excel
3.2d (ii) EACH Clinical Practice Development Groups
Emotional Health & Wellbeing Strategy Group – responsible for the
development of the new approach to promoting service user emotional health and
wellbeing. Membership includes the Director of Care, Nurse Consultant, Head of
Service, Head of Education & Quality, Paediatric Psychology Consultant, Paediatric
Palliatice Care Psychology Consultant, EACH Clinical Psychologist.
Pharmacy Strategy Group – responsible for approving medicines management
policies and procedures, agreement of the audit programme, approval of audit action
plans, monitoring incidents and any resulting action plans. It also agrees the work plan
for the medicines management group. Membership includes Nurse Consultant
Children’s Palliative Care, Medical Director, Head of Service (Controlled Drugs
Accountable Officer), Specialist Pharmacist, Director of Care
Medicines Management Group – responsible for implementing and monitoring
policy and procedure, scrutinising incidents and identifying and sharing learning and
completion of audits. Membership includes the Nurse Consultant Children’s Palliative
Care, Nurses and Care assistants from the three hospice services, Clinical Nurse
Specialist and clinical educator.
Health and Safety Committee - responsible for recommending policy and
procedure to the Management Executive, management of health and safety audit
programme, management of health and safety risks and scrutiny of incidents.
Membership includes the facilities manager (competent person), Chief Executive,
Head of Service, Care Managers, Departmental Managers and Head of Quality &
Education
Care Information Systems Steering Group – responsible for recommending
policy and procedure to the ECMT, review the outcomes of audits and recommends
action plans to ECMT, recommends developments to the care information systems to
the ECMT. Membership includes the Head of Service, Nurse Consultant Children’s
Palliative Care, Care Service Managers, Systmone Care records manager
Care Information Systems Champions User Group - responsible for
implementing and monitoring policy and procedure, scrutinising incidents and
28
identifying and sharing learning and completion of audits. Membership includes Head
of service, Care Service Managers, Systmone Care records manager, members of the
multi-disciplinary care team from the three hospice services and the symptom
management team
Information Governance Group – responsible for all aspects of information
governance across EACH. Membership includes the Senior Information Risk Officer
(Director of Finance, Caldicott Guardian (Director of Care) and Information
Governance Lead (Head of Education & Quality)
Information Asset Owners Group- responsible for implementing information
management policies and procedures, risk assessing and managing information assets
and carrying out audits and information governance spot checks
Infection Control Group – responsible for implementing policy and procedure and
recommending changes to the ECMT, carrying out the audit programme and
recommending action plans to the ECMT, scrutinising incidents and sharing learning.
Membership includes Care Service Manager, specialist infection control adviser,
members of the multi-disciplinary care team from the three hospice services and
symptom management team
Moving and Handling Trainers Group – responsible for implementing policy and
procedure, recommending the training programme to the ECMT and the delivery of
training staff. Members include Head of Education & Quality, Clinical Educator and
designated moving and handling trainers from the three hospice services
Physiotherapist/ Occupational Therapist Practice Group – responsible for
recommending policy and procedure to the ECMT, delivering training, ensuring
consistency in practice across locality services. Membership includes the Nurse
Consultant Children’s Palliative Care and the Physiotherapists and Occupational
Therapists from the three hospice services
Positive Handling -Team Teach Trainers Group - responsible for implementing
policy and procedure, recommends the training programme to the ECMT and the
delivery of training to staff. Members include Head of Education & Quality, Clinical
Educator and designated team teach trainers from the three hospice services
Young Persons Care Action Group – responsible for implementing person
centred approaches to care for young people, implementing policy and procedure,
recommending changes to practice to the ECMT. Membership includes care
managers, website development officer and care staff from the three hospice services
who are members of the young person case management teams
3.2d (iii) External Practice Development groups
Care staff attended and participation in the following external groups:
The East Anglian Managed Clinical Network (Norfolk, Suffolk, Cambridgeshire
and North and West Essex). This is chaired by the EACH Medical Director an
attended by the Nurse Consultant Children’s Palliative Care
29
The Children and Young People’s Strategic Clinical Network for children,
maternity and the new-born, and the associated East of England Children’s
Palliative Care Forum and county based palliative care networks. These are
responsible for developing and implementing the priorities of the palliative care
strategy for the East of England. The regional forum is chaired by the Director of
Care and attended by the Medical Director and Nurse Consultant Children’s
Palliative Care. The county based networks are attended by the Head of Service and
Nurse Consultant Children’s Palliative Care.
Music Therapy in Palliative Care Forum- A practice development forum
attended by the EACH music therapists
Help the Hospices Executive Leaders in Palliative Care – Eastern Region. A
practice development group attended by the Nurse Consultant Children’s Palliative
Care.
Children’s Palliative Care Nurse Consultant Group- a practice development
group attended by the Nurse Consultant Children’s Palliative Care
National Institute for Health Research Funding Group – attended by Nurse
Consultant Children’s Palliative Care
Together for Short Lives (TfSL) Leaders of Care forum - attended by the
Director of Care, Nurse Consultant Children’s Palliative Care, Head of Service, Head
of Quality & Education
TfSL Infection Control Special Interest Group- attended by designated EACH
care staff
TfSL Workforce Development Group - a forum which focuses on issues related
to the palliative care workforce. Attended by Head of Education and Quality
TfSL / Association of Paediatric Palliative Medicine national research
group – attended by Nurse Consultant Children’s Palliative Care
Norfolk and Suffolk Palliative Care Academy Steering Group. Responsible
for influencing the development of training, education and information resources for
all those who need palliative care irrespective of age. Attended by Head of education
& Quality.
S Langley and Dr L Maynard are members of editorial team for the TFSL
publication: Synopsis. This includes summaries of current research and evidence
based practice articles
30
3.2.d (iv) Scholarly activity
Staff were also successful at having work accepted for presentation at national meeting and
conferences.
Ray Travasso, Music Therapist, Treehouse: Supporting families - The EACH Treehouse Choir. Help
the Hospice Conference: Hospice Care: Fit for the future Bournemouth October 2013
Linda Maynard, EACH Nurse Consultant Children’s Palliative Care: Developing capability in the
workforce. Together for Short Lives National Leaders in Care Conference London September
2013
Tracy Rennie, Director of Care and Linda Maynard, EACH Nurse Consultant Children’s Palliative
Care Network approach to delivering children’s Palliative Care. Together for Short Lives and
Association of Paediatric Palliative Medicine national conference London November 2013
Jacqui Taylor, Young Persons Lead (Conference Organiser) and Tracy Rennie, Director of
Care (Joint Conference Chair). Young People’s Conference ‘Don’t you forget about me’
19th November 2013.A Conference jointly organised with Sue Ryder to focus on the needs
of Young People with palliative care needs.
Linda Maynard, EACH Nurse Consultant Children’s Palliative Care: Non malignant children’s
palliative care. Eastern region Paediatric Specialist Registrar (SpR 4/5) training Addenbrookes
September 2013:
Linda Maynard, EACH Nurse Consultant Children’s Palliative Care: Audit findings of the EACH
and Addenbrookes neonatal end of life care pathway. Child Bereavement UK national neonatal
conference in Manchester February 2014.
Debbie Lynn, Clinical Nurse Specialist and Mandy Binns, Lead Nurse, Specialist Practice and
Symptom Management Team Manager: Implementation of a 24/7 Symptom Control Service.
Help the Hospice Conference: Hospice Care: Fit for the future Bournemouth October 2013.
Sue Langley: Library & Information Service Manager: Libraries in Hospices. Current
Awareness Bulletins. Annual event St Christopher’s Hospice, London: November 2013
3.2d (v) External Study and Conferences
EACH has supported 120 applications from care staff to undertake training, day and extended study
and learning development activities. Examples include:





Attendance at TfSL 20:20 Vision New Perspectives in Children’s Palliative Care
(conference)
Attendance at Help the Hospices: Hospice Care Fit for the future (conference)
Attendance at Paediatric Psychology Network conference
Children’s Advanced Nurse Practitioner Masters Study
Making multi agency assessments work focus on safeguarding (NSCB study day)
31







Play together - The Impact of multidisciplinary team working Focus on: Reinforces
the role of play (National Association of Health Play staff study day)
Making music with special children (Jessie’s Fund study day)
9th Paediatric Pain Symposium (UCL study day)
Post graduate certificate in Systemic Practice
Advanced Clinical Skills in Assessment (post graduate)
Certificate in Teaching in the Lifelong Learning Sector (CTTLS)
Association of Chartered Physiotherapists foundation Course - Reflex Therapy
3.2d (vi) Student placements
EACH provided placements for nursing students from Anglia Ruskin University, University
Campus Suffolk and the University East Anglia. A total of 11 day placements and 37
extended clinical placements were provided by the three hospices. A placement with EACH
was also completed by a Medical Student and an Occupational Therapy student. Audits
carried out by the education providers found the hospices to be compliant with the
standards required to provide placements.
3.2d (vii) Commissioned Training
Training was provided by EACH to the following:
 Cambridge University Medical Students
 University of East Anglia post registration nurses, medical students, student nurses and
student teachers
 Norwich City College Child Care students
 MCN Education programme Subcutaneous devices and management of SC medications;
management of Intravenous therapy for nurses
 Hospice GPs- awareness about EACH and managing palliative care symptoms
3.3 How children and families are involved in EACH and what they
say about the service they received
Examples of feedback received from families are noted earlier in section 3.2b. Mechanisms
to involve families and received feedback in a more systematic way are explained below.
3.3a Child and Family Views
Views are captured in a variety of ways:
 On an individual basis as part of care reviews
 Family Survey
 Evaluation of family events and group activities
 Comments cards via the website or the Family Corner newsletter
 The locality based Family Forums
32
Specific feedback is sought as required. For example, families were asked for their views
about the proposed changes to delivering emotional health and wellbeing support.
3.3 b Annual Family Satisfaction Survey
All families including bereaved families were sent a satisfaction survey in February 2013.
Whilst the broad themes contained in the surveys were similar, questions were developed
relevant to whether a family were bereaved or not.
A total of 458 surveys were posted out to families (non bereaved families = 358 and
bereaved families =100). The number of responses were 81 and 23 respectively, both
reflecting a rate of 23%.
The themes of the survey were:
 Access to services
 Care of the child (non bereaved)
 Care of the family
 Staff- families knowing who staff are , staff knowledge and skills
 Environment of care
 Communication
 Understanding of what happens to service user information in EACH
Families were also asked to comment on what they liked and what could be improved.
The non bereaved families commented positively about the attitude and behaviour of staff
and the confidence they have that their child will be well cared for.
The following improvements were suggested:
 Short breaks booking process
 Keeping in touch with families in between episodes of care
 More awareness of which services are available to them
 Photos and information about current staff
 Better co-ordination and information for young people and their families who are
transferring to adult services.
Comments from bereaved families were dominated by commendations about EACH
services. It was suggested that a wider range of universal family based activities could be
developed for the bereaved.
Findings were discussed with the family forums and an action plan agreed by the EACH Care
Management Team. Progress is reported to every family forum meeting.
Progress includes:


Improvements to the family corner newsletter and family section of the website to
help raise awareness of services,
A family events calendar which is included in the family corner and on the family
section of the website
33





3.3c
The provision of a printable electronic staff photo and information ‘board’;
The agreement of a new process of keeping in touch with families in a more
systematic way
A revised bookings process agreed
A new approach to promoting emotional health and wellbeing which includes more
universal level support activities for all families, including the bereaved. This will be
implemented through 2014 and 2015.
The development of working with young people including the development of one
page personal profiles and the development of a systematic approach to ensuring
that transition is managed consistently across the localities
The EACH Family Forums
The three locality Family Forums met three times during the reporting period. This included
all three meeting together with the EACH CEO and Director of Care. The forums provide
the opportunity to receive feedback from families and also to test out service developments
and proposed changes to ways of working.
Some of the areas the forums have been involved with this year were:
 The development of the successful DH bid for the capital funds and identified
priorities for refurbishment
 Feedback on arrangements for family support groups and family events
 The new Holistic Needs Assessment, targeted short breaks assessment and
personalised service offer
 Suggesting improvements to what is communication to families at handover at
discharge from the hospice following a short break
 Reducing cancellations of short breaks bookings by families – suggesting changes to
bookings
 Feeding back on the proposed new approach to promoting emotional health and
wellbeing
 The SystmOne electronic care records new information sharing module and
approach
 The new Norfolk Hospice development group to inform the design of the building
plans.
 Development of the family section of the website
 Monitoring of the annual family survey action plan
 Development of a family Facebook social networking facility for each of the hospice
localities- run by families for families
34
3.4 Involving EACH staff
In addition to involvement in clinical practice groups, there is also a staff forum and staff are
encouraged to feedback on plans for the future. A team of staff and family members helped
to inform the design of a new hospice for Norfolk.
EACH carries out a staff survey annually to seek their feedback about EACH. The findings of
the survey carried out during the year and next steps are detailed below.
Staff survey
EACH participated in a national hospice staff survey run by Birdsong Charity Consulting on
behalf of Help the Hospices. A total of 174 EACH staff completed the survey; a response
rate of 64%.Our results were compared to an all hospice sample, consisting of results from
42 adult and children’s hospices, and a charity pulse survey representing individuals from
170 different UK charities.
88% of all respondents understood what EACH wants to achieve as an organisation and
our results were not significantly different to the average of the all hospice sample. Our
results were also above those of the charity pulse survey in all categories. The survey
looked at communication, morale and work life balance, people management and
development and reward
We received a large number of extremely positive comments about working for EACH, as
well as areas where we can improve as an organisation. Top of the list, as identified by staff,
was improving communications between teams and between managers across different
departments within EACH. Two immediate actions have been put into place to address this.
‘ASK A DIRECTOR’ Q&As
In 2014 there are three new ‘ask a director’ question and answer sessions. Attendance is
optional for all staff and provides the opportunity to meet the directors, ask questions on
any subject and receive up-to-date information about EACH’s organisational strategy.
Following each session, a report of all Q&As will be available on the intranet for those
unable or choosing not to attend.
Operational Management Team
We have introduced quarterly meetings of a new EACH wide Operational Management
Team (OMT). The primary aims for the team are to improve communication between
departments and support the cascade of information throughout the whole organisation and
act as a reference group to better inform decision making. All staff have the opportunity to
feed into this via their line management and team structures. Every part of the organisation
is represented in the OMT.
35
3.5 Statements from Lead Commissioners, Health watch and
Overview and Scrutiny Committees.
EACH provides services across Norfolk, Suffolk, Cambridgeshire and North and West
Essex. This Quality Account has been sent to Clinical Commissioning groups, Healthwatch
and Overview and Scrutiny Committees in the above counties to provide the opportunity
for comment and a statement. The list of those who were sent a copy of the Account is
tabled in Appendix 1. Responses were recived from the following:
Healthwatch Norfolk
Healthwatch Norfolk is pleased to have the opportunity to comment on the Quality Report.
The report is well laid out, provides a comprehensive explanation as to the areas of work
undertaken by the EACH and is reader friendly although we would suggest that the addition
of a glossary would be helpful to the reader.
The information provided in response to the complaints and incidents is clear and detailed
which we believe helps to reassure the public that appropriate actions have been taken. We
also note the emphasis on obtaining feedback from children and families and fully support
the importance of this aspect in delivering a quality service with due regard to the significant
sensitivities in this area of work.
We note that the report provides details on the progress of the 3 year development plan
and clearly defines the priorities identified for the forthcoming year.
Finally, Healthwatch Norfolk confirms that we will ensure that any feedback we receive
from patients, carers and their families forms part of a developing relationship with all
commissioners and providers of healthcare in Norfolk, including EACH.
Alex Stewart
Chief Executive
Healthwatch Norfolk
Received 23rd June 2014
Norfolk Health and Wellbeing Board Overview and Scrutiny Committee
The Norfolk Health Overview and Scrutiny Committee has decided not to comment on any
of the Norfolk provider Trusts' Quality Accounts for 2013-14 and would like to stress that
this should in no way be taken as a negative comment. The Committee has taken the view
that it is appropriate for Healthwatch Norfolk to consider the Quality Accounts and
comment accordingly.
Maureen Orr
Scrutiny Support Manager (Health)
Norfolk County Council
Received 4th June 2014
36
Healthwatch Cambridgeshire
Healthwatch Cambridgeshire welcomes the opportunity to comment on the Quality
Account for East Anglia Children’s Hospice (EACH). Although we have not undertaken any
specific work with EACH, Healthwatch Cambridgeshire are aware of the very high quality
services and invaluable support that EACH provides for children, their families and carers at
very difficult times.
We consider the priorities chosen for improvement highly relevant. We particularly
welcome the commitment given to ensuring holistic and personalised care and the high
priority placed on learning by listening to people’s experiences. Healthwatch
Cambridgeshire would like to wish EACH every success in achieving their stated outcomes
in the coming year and beyond.
Sandie Smith
Chief Executive
Healthwatch Cambridgeshire
Received 16th June 14
Healthwatch Essex
Healthwatch Essex is an independent organisation with a vision to be a voice for the people
of Essex, helping to shape and improve local health and social care services. We recognise
that Quality Account reports are an important way for local NHS services to report on
what services are working well, as well as where there may be scope for improvements.
We welcome the opportunity to provide a critical, but constructive, perspective on the
Quality Accounts for EACH, and we will comment where we believe we have evidence –
grounded in people’s voice and lived experience – that is relevant to the quality of services
delivered by EACH.
In this light, it is therefore necessary to say services provided by EACH have not featured
significantly either in our programme of research in 2013-14, or the evidence of people’s
voice and lived experience gathered through our outreach or engagement work.
However, from our reading of the EACH account, we are pleased to note that EACH
actively engages children and families about the services they receive. EACH services are
highly praised by service users and their families. During 2013-14 EACH received 8
complaints. These complaints have been investigated, and learning from complaints and
concerns is shared with staff allowing for changes in practice. The Annual Family Satisfaction
Survey includes both bereaved and non-bereaved families. The non-bereaved families were
positive about the attitude and behaviour of staff and the confidence that their child will be
well cared for. Bereaved families mainly made commendations about the EACH service.
Improvements suggested were listened to and discussed with the Family Forums, and as a
result EACH has an action plan in place for implementation.
37
Healthwatch Essex shares the aspiration of putting patient and service user experience at
the centre of services, and believes that listening to the voice and lived experience of
patients, service users, carers, and the wider population, is a vital component of providing
good quality care. We look forward to working together in the production of Quality
Accounts in the coming year and making sure that the voice and experience of patients and
the public form an integral part of these.
Sarah Haines
Information and Policy Officer
Healthwatch Essex
Received 18th June 2014
END
38
Appendix 1
COUNTY
NORFOLK
SUFFOLK
CAMBS
PETERBOR
OUGH
ESSEX
CLINICAL
COMISSIONING
GROUP
Sally Child – Norfolk
CSU
Nicky Yiasoumi –
Great Yarmouth &
Waveney
HEALTHWATCH
HWB OVERVIEW&
SCRUTINY
Christine MacDonald
Maureen Orr
Scrutiny Support
Manager (Health)
Norfolk County Council
sallychild1@nhs.net
christine.macdonald@he
nicky.yiasoumi@nhs.n althwatchnorfolk.co.uk
et
Maureen.orr@norfolk.gov.
uk
Gena Nicholls,
Children's Complex
Case Manager
gena.nicholls@suffolk.
nhs.uk
Eva Alexandratou,
Head of Children's
Joint Commissioning
Michael Ogden, Lead
Officer
Sue Morgan
michael.ogden@healthw
atchsuffolk.co.uk
Sandie Smith
Sue.morgan@suffolk.gov.
uk
Liz Robin
eva.alexandratou@ca
mbridgeshire.gov.uk
sandie.smith@healthwat
chcambridgeshire.co.uk
liz.robin@cambridgeshir
e.gov.uk
As for
Cambridgeshire
Angela Burrows
Chief Operating Officer
Healthwatch
Peterborough
angela@healthwatchpet
erborough.co.uk
Andy Liggins
Director of Public Health
Peterborough City
Council
Thomas Nutt (CEO)
Colin Ismay
thomasnutt@healthwatc
h.org.uk
colin.ismay@essex.gov.u
k
Stewart McArthur
Andy.liggins@peterboroug
h.gov.uk
Children’s
Commissioner
Stewart.McArthur@s
wessex.nhs
39