EACH Quality Account
2012-2013
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 of high quality.
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Contents
Item
Part 1
Chief Executive’s statement
Part 2 Priorities for improvement and
statements of assurance from the Board
2.1 Priorities for improvement 2013-14
2.2 Statements of assurance
2.2.1 Review of services
2.2.2 Participation in national clinical audits
2.2.3 Participation in local audits
2.2.4 Participation in clinical research
2.2.5 Use of the Commissioning for Quality
Improvement and Innovation (CQUIN) payment
framework
2.2.6 What others say about EACH
2.2.7 Data quality
2.2.8 Clinical coding error rate
Part 3 Review of quality performance
3.1 Priorities for improvement 2012-13
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
Page number
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Part 1. Chief Executive’s Statement
I am delighted to present the first EACH Quality Account.
On behalf of myself and the Board of Trustees, I would like to thank all of our staff
and volunteers for their achievements over the past year. Despite the current
economic climate, the hospice has continued to provide specialist palliative care to more
children and families and remains financially sound, thanks to generous support from our
local communities and our partnerships with the statutory sector.
EACH has a culture of continuous quality improvement, in which opportunities to improve
care delivery and any shortfalls are identified and acted upon quickly. 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 sub committee of the
EACH Board, provides assurance, oversight and scrutiny on all matters relating to the
quality of care.
The Care Quality Commission inspected each of our three hospices services based at
Milton, Cambridge, Quidenham, Norfolk and the Treehouse in Ipswich, Suffolk and assessed
that the treatment and care provided was fully compliant with all of the essential national
standards for care.
Service users are encouraged to tell us about their experiences through a variety of means.
These include one to one reviews with families, the EACH website feedback section for
families, comments slips in the family newsletter, Facebook and twitter. There are also three
locality based family forums and three Trustees with service user experience on the Board
and Clinical Governance Committee.
In 2012, EACH invested in a three year care development programme to improve further
the safety and quality of care and the experience of children, young people and families who
require specialist palliative care.
Priorities for development were identified from the findings of three independent
evaluations carried out in the previous year – an evaluation of the EACH model of care, our
approach to delivering psychological support and the neonatal care pathway. These
evaluations included the involvement of service users, staff and external professionals.
The objectives of the three year programme informed the priorities for improvement for
2012/13.
To the best of my knowledge, the information reported in this Quality Account is accurate
and a fair representation of the quality of health care services provided by EACH.
Graham Butland
Chief Executive
21st May 2013
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Part 2. Priorities for Improvement for 2013/14 and
Statements of Assurance from the Board
2.1 Priorities for Improvement for 2013/14
The priorities for 2013-14 have been informed by:
 The three year care development programme objectives
 Key areas of clinical risk
 The successful bids to the Department of Health to fund capital improvements to
care facilities, equipment and vehicles
The priorities cut across all three domains of quality- patient safety, clinical effectiveness and
service user experience.
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.
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
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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
Continued monitoring of medicines incidents and implementing any resulting changes
to practice and shared learning from them.
An audit of medicines administration and reconciliation.
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.
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

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
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. Work must be completed by the end of March 2014.
2.2 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 if what these statements mean are also given.
2.2.1 Review of services
During 2012-13 EACH provided the following NHS services to children and families living in
Norfolk, Suffolk, Cambridgeshire and North and West Essex:
 Short breaks
 End of life care
 Symptom management
 Family support for all family members before and into bereavement
 Music therapy
 Specialist play
 Family Information service
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Care is delivered across a range of settings in line with the preferences of the family. This
includes in the family home, hospice or hospital and in 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.
We have reviewed all the data available to us on the quality of care in these services.
The income generated by the NHS services reviewed in 2012/13 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 NHS and two County Councils. Funding received from statutory sources
amounts to 30% of the total income. These arrangements mean that all services delivered by
us are only partly funded by the NHS.
2.2.2 Participation in National Audits
During 2012/13, 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 20112/13 are as follows: NONE
The national clinical audits and national confidential enquiries that EACH participated in and
for which data collection was completed during 2012/13 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. EACH was not eligible in
2012/13 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 21012/13 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.
2.2.3 Statement re participation in local clinical audits:
The reports of 6 clinical audits were reviewed by EACH in 2013/13.
The following clinical audits were completed during the report period and the following
actions taken:
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
Resuscitation Audit
Action taken: Whilst children had statements in place, some had not been reviewed
within the last 12 months. These related to those children who are stable and well
and continue to have full and active treatment therefore staff had not revisited them.
Staff were reminded of the need to review all statements annually. Annual reviews of
resuscitation status flag included in SystmOne care records system.

Medicines and Healthcare Regulatory Agency audit of procedures
Action taken: Safety of medicines summaries are not currently downloaded. The
SOP 36 was amended to include these summaries in alert downloads and action to
forward to Nurse Consultant each month for review and action as necessary

EACH Involvement In Education Provision of Children and Young People
Action taken: In the majority of cases, EACH knows about the current education of
every active child or young person, and in many cases is actively involved in joint
planning. However, it was inconsistently recorded and monitored about how EACH
contributes to the education objectives of service users. This responsibility is to be
included in the role of the EACH link worker.

Medicines Management Audit
Action taken: The medicines management policy and SOPs were revised and
implemented. New SOPS relating to the medicines reconciliation and handling of
symptom management boxes were developed and implemented. Nursing staff
recruitment now includes a maths/ drugs calculation test

Controlled drugs Audit– A Self Assessment Tool for Accountable Officers ( Help
the Hospices National audit tool)
Action taken: The role of the Accountable Officer was reviewed and amended to
ensure compliance with regulations. CD SOPs relating to the handling of CDS have
been written and are currently being introduced. The CD register is being
redesigned.

Infection control – cleaning and facilities inspections
Fortnightly inspections are conducted jointly by locality Facilities Co-ordinators and
Hospice Locality EACH Care Service Managers to review compliance with standards
in infection control, cleanliness, food hygiene, facilities and equipment.
Action taken included the purchase of a new waste disposal unit and additional
cleaning equipment at Quidenham and the renovation of the bathroom at Milton
2.2.4 Participation in clinical research
The number of patients receiving NHS services provided or subcontracted by EACH
in 2012/13 that were recruited during that period to participate in research
approved by a Research Ethics Committee was nil.
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2.2.5 Use of the Commissioning for Quality Improvement and
Innovation (CQUIN) payment framework
EACH income in 2012 -13 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.
2.2.6 What others say about us
Care Quality Commission
EACH is registered with the Care Quality Commission (CQC). EACH is required
to have a registered manager at each of the three hospice sites to meet the
requirements of its registration.
The CQC has not taken any enforcement action against the hospice during year
2012-13.
EACH has not participated in any special reviews or investigations by the CQC
during 2012-13.
EACH is inspected annually by the CQC. All three hospice sites were inspected
during the year 2012-13 and were found to be fully compliant with all of the required
standards.
External Agencies and Health Professionals
EACH involved health professionals in the evaluation of the EACH True Colours
symptom management service carried out in 2012 13. Whilst there was clear
evidence of the benefits and effectiveness of the service, areas for improvement
were identified relating to clarity of the TCT team roles and communication. This
has resulted in the TCT nurses looking at ways to improve these areas including
nurse being co-located in the some of the NHS community nursing teams, a jointly
funded nurse post, revision of the information leaflet and meeting with professionals
to explain the role and function of the team
Examples of the feedback are noted below:
“filled a critical gap in areas where provision has been extremely patchy”
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“Need to understand their role more and better communication with other professionals
involved if they have contact with the family
Clarity of service - what can & can't be expected. Lead clinician should be clearly identified”.
EACH has received positive feedback from health professionals relating to our
hospice teams and symptom management team:
A message received from a Consultant Palliative Care Paediatrician in Addenbrookes
Hospital “Thanks to Rebecca and please pass on my thanks to the rest of the TCT team
and the Treehouse team. I think Ashna’s end of life care was really excellent, thanks to you
all.”
A letter was received from the Chair of Suffolk Child Death Overview Panel
commending the high quality of multi-agency working between EACH and the
Ipswich Paediatric Oncology Team, who “together, delivered an outstanding level of care
to a child and her family throughout her illness and during her end of life”.
“Thank you ever so much for all your valuable work in caring for Anne and her family. You
have been remarkable and the updates have been really useful.”1
“A huge thank you to all involved including Dr's (GP) and (GP), the TCT team and the
nurses who stayed overnight to support family and the family support teams.”
“This palliative episode has been managed superbly well - a really good example of team
work. Many thanks,”
“A huge thank you from the team at (GP) Surgery to all involved for the intense support and
commitment that enabled and empowered the parents to keep Emma at home - I am sure
in months and years to come keeping her at home with all the support in place will be
remembered in a 'positive' sense and help them along the grieving process. “
2.2.7 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.
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All names in quotes have been changed to protect anonymity
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NHS Number and General Medical Practice Code Validity
EACH did not submit records during 2012-13 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 2013. EACH
achieved 92 % compliance and has received confirmation from the Department of
Health that the toolkit assessment has been reviewed and submission provides the
assurances required.
2.2.8 Clinical Coding Error Rate
EACH was not subject to the Payment by Results clinical coding audit during 201213 by the Audit Commission.
Part 3. Review of Quality Performance
EACH provided care to 494 children and young people (CYP) for the year 2012-13 and 547
families.
At 31st March 2013, EACH were providing face to face care and support to 963 service
users. This included 385 children and young peoples with palliative care needs, 147 siblings,
306 parents and 125 other family members.
A summary of the service demographic information is noted in Table 1.
Out of the 73 children who died, 19 died at home, 13 in the hospices and 41 in hospital. Of
these, EACH provided end of life care to 34 children in either the hospice or family home.
Table 1 Summary of EACH service demographics 2012-13
EACH
Totals
st
Numbers of CYP receiving services at March 31 2013
385
st
Number of bereaved families being actively supported at March 31 2013 110
Referrals
125
Deaths
73
CYP transferred out of EACH services2
74
2
Children and young people who have moved away from the catchment area, or who no longer meet the
criteria to access services due to age or level of medical or nursing needs
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3.1Priorities for improvement 2012-13
As this is the first Quality Account, there are no priorities for improvement to report back
on. However, the objectives for year 1 of the care development programme informed the
priorities for improvement for EACH for 2012- 13 and these provide the basis for the
review of quality performance for 2012-13.
1. Increasing the amount of care delivered (clinical effectiveness & service user
experience)
More care was offered to more service users. This was as a result of recruiting additional
staff agreed within the care development programme and reorganising ways of working to
make more efficient use of staff time. This included including our approaches to the delivery
of care education and training and how we arrange staff meetings.
2. Ensuring quality and consistency across EACH (clinical effectiveness & service user
experience)
A root and branch review of all care processes for all elements of the care service from
referral to discharge commenced. A new approach to managing referrals introduced in
October 2012 resulted in reducing the time taken to complete non urgent referrals from a
monthly average of 24 days between April and September to 7days from October to
March 2013. The standard for completing referrals is 14 days (2 calendar weeks).
A review of the approach to delivering emotional health and wellbeing support commenced
in October 2012. EACH is currently working with specialist children’s and palliative care
psychologists from Great Ormond Street NHS Trust and Addenbrookes NHS Trust to
define the new model which will:




Ensure that universal, targeted and specialist support is available to ensure that all
needs can be met
Ensure that interventions are evidence based and outcome driven and are
underpinned by an approach which builds on an individual’s strengths and resilience
Support is individual to the needs and goals of the individual
Support is delivered by staff will relevant knowledge and skills
The scale of change involved in reviewing and making the improvements to the model of
care and the associated care processes means that this will continue to provide a priority
for improvement in 2013-14.
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3. Ensure the specialist and increasingly complex care needs of children are met
safely by competent and well managed staff (patient safety, clinical effectiveness & service
user experience)
3. a. Staff Knowledge and skills
All staff are expected to develop the knowledge and skills required to provide safe and
effective care. Staff are required to complete annual mandatory training, the core knowledge
and skills education programme and clinical competencies relevant to their role.
The induction and core knowledge and skills training programmes have been updated and
implemented to ensure that staff continuously update their knowledge and skills with the
latest evidence based practice and that they can respond to the increasingly complex needs
of children cared for within EACH.
The Induction Training programme includes:















End of Life Care
Play
Safeguarding
Infection Control
Moving and Handling
Record Keeping
Risk Management
Incident Reporting
Professional Boundaries
Looking After Yourself
Basic Communication Skills
Food Hygiene
Spirituality, Equality and Diversity
Medicines Management
Library and Information Services
The CSK Training programme includes:











Person Centred Planning
End of Life Care
Symptom Control
Consent, Advocacy and Mental Capacity Act
Communication Skills
Introduction to Neonatal Care
Positive Handling
Spiritual Care
Looking After Yourself
Professional Boundaries
Emotional Health and Wellbeing
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Care staff were required to attend the following mandatory training session as appropriate
to their role:







Moving and Handling
Record Keeping
Safeguarding
Infection Control
Medicines Management
Food hygiene
Resuscitation
165 out of 173 (95%) care staff completed all of the required the mandatory training
sessions for 2012-13.The remaining 8 had a maximum of 2 sessions outstanding. Reasons for
not completing all sessions were absence from work due to sickness, compassionate leave
or maternity leave.
Examples of the current clinical competencies are:
 Enteral feeding
 Oxygen management
 Suction
 Pain management
 Seizure management
 Administration of medicines
 End of life care
 Record keeping
 Tracheostomy care
 Personal care
 Verification of death
Staff have continued to achieve the required clinical competencies. However, feedback from
staff prompted a revision of how competency training is delivered resulting in a new 3 year
rolling programme being developed for implementation during 2013-14
In additional to educations and training provide within EACH, staff also attend external
education and training events, undertake courses of study, attend conferences, provide
training to others and present at conferences.
Staff are also supported in delivering care and support, developing evidence based practice
and in their learning by having access to the EACH Library and Information service. This
service is also available to families and external professionals. The activity data summarised
in table 2 below demonstrates good use of this valuable aspect of our organisation.
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Table 2 Library and Information Activity data 2012-13
EACH LIBRARY AND INFORMATION SERVICE
2011/12
Total library membership
502
Number of new library members
86
Enquiries & requests for information
535
Literature searches
90
Journal article/book requests from EACH library members supplied
by inter-library loan
241
Journal article/book requests to EACH library from NHS hospitals
supplied by inter-library loan
30
Downloading of electronic journal articles for EACH library members
303
Number of book loans and renewals
901
Training sessions on library resources
2
Informal induction sessions for new staff
18
Number of family information resources loaned & renewed (via care
team staff)
262
3.b. Ensuring safe management of medicines
Medicines management is a key clinical risk area for all health care organisations. To ensure
continued safe medicines practice which remains compliant with regulatory requirements in
the context of more children using EACH services having increasingly more complex
medicines, EACH have implemented formal arrangements with Cambridgeshire Community
Services NHS Trust (CCS) pharmacy services to enable access to the specialist advice and
support.
A medicines audit was carried out, which showed that whilst management of medicines was
satisfactory, there were inconsistencies in how the different localities interpreted the policy.
Staff also found that the current policy format which also included procedural information
resulting in it being difficult to find the information that they needed. A work plan for
developing medicines practice has been developed and implemented to address the findings
of the audit and to ensure practice is updated to ensure continued compliance with new
regulations and best practice requirements. To date, the medicines policy has been revised
and is now supported by 17 medicines management SOPs which enables staff to go straight
to the SOP rather than trying to find the information in one large document. The
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implementation of the new SOPs has been supported by a programme of training for staff
led by the clinical educators.
3.c. Effective management and leadership
A new care management structure was agreed and implemented to ensure a strong
platform from which EACH can continue to grow in size whilst ensuring that staff remain
well supervised and supported and to give the capacity needed to develop as a regional
provider of specialist palliative care for children, young people and their families.
A refreshed model of clinical leadership has been developed based on the NHS Leadership
framework to ensure that clinical leadership is embedded and evident throughout the teams
and at all levels and that staff have the time to review, reflect and proactively identify areas
for improvement as well as celebrate what we do well. This will continue to be developed in
2013-14
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)

cancellations of care by EACH (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)

policies and procedures to ensure that they remain evidence based and current
(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.
Across EACH, there were 7 complaints or concerns made during the year of which 6 were
upheld.
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Three of these related to care plans which not been followed fully, one related to a child’s
piece of equipment which had been accidentally damaged by an EACH member of staff and
which was replaced by EACH, one related to a concern that a medicines error had
occurred and one related to a child not receiving the amount of community care that had
been agreed.
The person raising the concern or complaint is advised of the investigation process, findings
and resulting changes to care practice. All of the complaints and concerns reported during
the reporting period were resolved locally to the satisfaction of the complainant and there
has been no repeat of them.
3.2b Commendations
EACH received many commendations throughout the year from families, below are a few of
the commendations we have received:
Bereaved parents – “Thank you so much for all you have done for us and our baby. Without your
help and support, we wouldn’t have got by. It’s charities like you that keep people together and
make a difference. Thank you so much…”
Bereaved parents – “Extra Special thanks to EACH Quidenham, and all donations made in
memory of child will go to EACH”
“Loved the pampering session on mums evening, thankyou.”
A thank you card received from a family for making arrangements for them to participate in
Dream night at Colchester Zoo “made us all feel very special and made for a magical evening”
Feedback from a mum who attended a dance workshop for the children, young people and
their families, a joint event by Treehouse team and Dance East, ‘lovely to have this event where
could all take part together
‘Just home from a 4 day stay at Milton - thank you, thank you, thank you. Really had the best break
with our son we have ever had.x’
‘Fab visit this morning to Milton. sounds like an amazing place. Looking forward to my son being
able to access hydrotherapy.’
‘Whilst my child was poorly we had the pleasure of working with the EACH hospice at Milton,
where the amazing people there helped make her life as comfortable as possible. After her death
they took her in to provide her with a comfortable bed, where we could visit at any time and
supported us in planning her funeral. Even today, 14 months later, EACH still provide us with help
and support, visiting us at our home and allowing us to meet other parents going through the same
experience.’
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Facebook Message - "I just wanted to say thank you again to the lovely nurses and chefs at
Quidenham. Me and my son have just been for our first stay from Sunday to Tuesday, my son had
an amazing time being fussed over and played with and I had so much sleep I’m fully recharged!
Thank you, it was just what we needed and I can’t say how much it has meant to us. We had fun,
every one was fab, and as for the home made cake and dinners! what can I say!! Jim you are a
star!! xxxxxx"
Facebook Message - "Thanks to everyone at Quidenham hospice for being a huge part of my life
and thanks to all the support you have given myself and my family over the last 16 years. You’re all
fantastic people to be with and have loved every moment while being involved with you. Thanks
again and all the best for the future see you all soon :)"
Message of thanks received from a parent who is attending our support group for bereaved
parents, hosted by locality Family Support Practitioner and team manager ….’Your wisdom to
know when to speak and when to let us share is incredible, and the space that you have provided
for us to come and talk, share, and meet with people who really understand is incredible. It is such
a blessing to meet together, so thank you thank you thank you.
Letter received by a family support practitioner from a bereaved sibling for who we
provided supportive care. ‘Part of the reason why I can now call myself Dr Sarah is that you really
helped me when I needed it. I probably wouldn't have even made it to the clinical years without
your support. So, thank you very very much’.
Verbal feedback to a Care Manager from Grandparents of one of children using the service;
“. They expressed that being able to come and stay at the hospice was such a lovely experience for
them and allowed them some time with their Grandson in such peaceful and calm
surroundings. For them it was a little glimpse of some time that allowed them all to be together in
a kind of normal place especially after spending hectic time in NICU. They now feel they have
treasured memories of a special time spent with their Grandson and supported by staff who were
there when needed but did not take over.”
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 approach. 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 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 346 incidents /accidents representing a rate of 0.4 % against the total
number of hours of care delivered. Three of these were scored as red. One of these related
18
to hospice equipment which has been replaced, one related to accessing and provision of
symptom management support in a timely manner which has now been resolved and the
other related to the unprofessional and fraudulent conduct of a member of staff. This latter
incident was reported as a serious incident to NHS Norfolk and to the Nursing and
Midwifery Council. The member of staff is no longer employed by EACH.
Examples of actions taken which have resulted from incidents have included:













Purchase of new clinical scales and replacement beds across localities
Updates for staff on recording and checking medicines, tracheostomy settings,
seizure charts and referrals policy
Training on emergency evacuation
Provision of emergency generator for dialysis machine
Agreement to have a direct dial line to call for emergency ambulances
Air conditioning installed in clinic room
Purchase of Flexi mort cooling unit to improve care of the body after death
Review of fire procedures undertaken with facilities and external professional
Family Information leaflet regarding sharing of information on Systmone revised
Resuscitation bag checklists revised
Purchase of new medicines fridge
Review of hospice security arrangements
The dependency of all children and young people is routinely assessed and skill mix/
staffing levels for care of child
3.2d Cancellations of Short breaks by EACH
Over the past year EACH have reduced the number of cancellations made as staff have been
recruited into new and vacant posts. Cancellation rates at the Treehouse and Quidenham
have remained constant throughout the year at 1.4% and 5.4% respectively. The rate at
Milton dropped from 12% in the first six months to 2% in the final 6 months.
The number of sessions cancelled was 263 out of 5768. This equates to 4.6% of the total
number of sessions provided. There are two key reasons for care being cancelled- an
unexpected end of life care referral and staff sickness.
Wherever possible care is rearranged to suit the needs of the family.
3.2e Staff knowledge, skills and practice development
The evidence of activities carried out by staff demonstrates EACH’s commitment to this
aspect of quality assurance. A summary of activities is provided in the sections below:
3.2e (i) EACH Clinical Practice Development Groups
Medicines Management Group
Health and Safety Committee
SystmOne Clinical Records Development Group
19
Information Governance Group
Information Asset Owners Group
Music Therapists Development Group
Moving and Handling Trainers Group
Physiotherapist/ Occupational Therapist Development Group
Positive Handling -Team Teach Trainers Group
Young Persons care development action group
3.2e (ii) External Practice Development groups
Attendance and participation by care staff in the following external groups was undertaken:
The East Anglian Managed Clinical Network ( Norfolk, Suffolk,
Cambridgeshire and North and West Essex)
The East of England Children’s Palliative Care Network and county
based strategic groups
Music Therapy in Palliative Care Forum
National Institute for Health Research Funding Group
Royal College of Nursing Palliative Care Group
Together for Short Lives (TfSL) Leaders of Care
TfSL Infection Control Special Interest Group
TfSL Workforce Development Group
TfSL Practice and Service Development Advisory Council
TfSL Research Strategy Group
TfSL Trustee
3.2. e (iii) Scholarly activity
 Providing 24/7 Care: Towards a Paradigm Shift? 6th International Cardiff Conference on
Paediatric Palliative Care 11-13 July 2012 "Science, meaning and morality: the palliative
package?” Presentation, Dr Linda Maynard
 The verification of expected death in childhood Guidance for children’s palliative care
services 6th International Cardiff Conference on Paediatric Palliative Care 11-13 July
2012. Presentation Dr Linda Maynard (co-presented with Helen Bennett, TfSL)
 Haemodialysis in children’s hospices 6th International Cardiff Conference on Paediatric
Palliative Care 11-13 July 2012. Poster presentation, Julia Shirtliffe
20






The verification of expected death in childhood Guidance for children’s palliative care
services Together for Short Lives, 2012 Report Dr Linda Maynard (co-author with
Helen Bennett, TfSL)
Being There For Children and Families: A 24/7 Symptom Management Project 9th
Palliative Care Congress. The Sage, Gateshead, UK, 14–16 March 2012. Poster
presentation Dr Linda Maynard, Dr Janet Leeson
Development and Implementation of Psychological Care in a Children’s Hospice Jo
Wray, Bruce Lindsay, Kenda Crozier, Lauren Andrews and Janet Leeson 9th Palliative
Care Congress. The Sage, Gateshead, UK, 14–16 March 2012. Poster presentation
A Design for Life, Together for Short Lives Conference 9-10 October 2012
Haemodialysis in children’s hospices. Presentation Julia Shirtliffe
Royal College of Nursing Competencies Palliative Care for Children and Young People
booklet, November 2012, Julia Shirtliffe (co-author)
Royal College of Nursing Bulletin NICU Pathway December 2012, Julia Shirtliffe
3.2e (iv) Higher Education courses
The following Higher Education courses were completed by individual staff:
 Advanced Clinical Assessment skills MSc module
 Clinical Assessment Skills for Health Practitioners Level 6
 Research in Health and Social Care MSc module
 Independent & Supplementary Prescribing Post-Graduate Diploma
 Clinical Assessment Skills for Health Practitioners Level 6
 Masters Thesis, Children’s Advanced Nurse Practitioner Pathway
 Certificate to Teach in the Lifelong Learning Sector
 Working Systemically with Families
 Family and Systemic Psychotherapy MSc module
 Every Child Matters BSc module
 Introduction to Palliative Care of Children and Young People BSc (3 staff)
 Mentor Preparation BSc module
3.2e (v) Student placements
EACH provided placements for nursing (child) students from Anglia Ruskin University (5
students), University Campus Suffolk (10 students) and University East Anglia (5 students). A
placement with EACH was also completed by a Music Therapy student.
3.2e (vi) Commissioned Training
Training was provided by EACH to the following:
 Cambridge University Medical Students
 Cambridge University Paediatric Society
 University of East Anglia post registration nurses, medical students, student nurses and
student teachers
 Neonatal Intensive Care Unit students
 Norwich City College Child Care students
21
3.2f Policies and procedures
All policies and procedures are reviewed at least every three years. There are procedures in
place to identify when polices require review. All clinical policies and procedures are
current and those due for review have been updated in line with latest regulatory or best
practice requirements.
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
Purpose specific views are also sought as required. For example, families were asked for
their views about what could be improved at the hospices to inform the capital funding
bids submitted to the Department of Health
3.3 b Annual Family Satisfaction Survey
The date for the annual service was changed this year from December to March at the request
of the family forum. Surveys are sent out to all families using EACH services including bereaved
families. Collation and analysis of data is currently in progress and will be used to inform future
service developments and priorities.
3.3c Evaluation of EACH True Colours Symptom Management Service
Twenty six families who had used the True Colours Symptom Management Team Service
across the EACH catchment area in Cambridgeshire, North and West Essex, Norfolk and
Suffolk since October 2010 participated in the evaluation.
3.3d
The EACH Family Forums
The three locality Family Forums met three times during the report period. It provides the
opportunity to receive feedback from families and also to test out service developments and
proposed changes to ways of working.
22
Some of the areas the forums have been involved with this year were:

Agreeing the themes and outline content for the satisfaction survey

Feeding back the care proposal to develop a ‘person centred approach’ to caring for
young people

Reviewing the family section content and ease of use of the new EACH website

Reviewing the new EACH family story DVD to be used for marketing purposes

Prioritising items to be included in the DH capital funding bid application to improve
facilities at the hospices
The family forum also requested that care staff photos be included in the Family Forum
newsletter. This has been done and has received very positive feedback.
3.4 Involving EACH staff
EACH promotes an ‘open door’ culture of listening and responding to staff feedback about
all the way we work service developments and organisational developments.
In addition to a staff forum, staff are encouraged to feedback their views via team meetings,
involvement in practice development groups and by being involved in service evaluations.
Staff were involved in the evaluation of the EACH True Colours symptom management
service.
Two examples of where staff have raised issues which has resulted in changes to practice
includes having protected times to carry out link worker/ case management duties and a
revised approach to the competency training.
3.5 Statements from Lead Commissioners, Healthwatch 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 are
tabled in Appendix 1.
Responses are detailed below:
3.5.1 Norfolk
Healthwatch Norfolk
Healthwatch Norfolk can confirm that it has reviewed the Quality Accounts for 201213. However, due to Healthwatch Norfolk only becoming operational from 1 April 2013
we do not believe it is appropriate for us to provide any detailed observations at this time
23
but we will be working with East Anglian Children’s Hospice and therefore will provide
detailed and constructive comments on the Quality Accounts for 2013-14.
Chris MacDonald
Healthwatch Norfolk Operations Manager
30th May 2013
NHS Norfolk and Waveney
NHS Anglia CSU is one of the successor organisations to NHS Norfolk & Waveney PCT,
who were EACH’s main commissioner for 2012/13. We have reviewed EACH’s Quality
Account with those members of staff who work with EACH and we feel that it is a
complete and accurate account of EACH’s activities during 2012/13, with areas for
improvement identified. EACH offers a much valued service to Norfolk families and we
look forward to continued partnership working.
Sally Child
Head of Child Health & Maternity Commissioning
NHS Anglia CSU
On behalf of NHS Norfolk & Waveney
21st June 2013
Norfolk Overview and Scrutiny Committee
The Norfolk Health Overview and Scrutiny Committee has decided not to comment on any
of the Norfolk healthcare providers' Quality Accounts for 2012-13 and would like to stress
that this should in no way be taken as a negative comment.
Maureen Orr
Scrutiny Support Manager (Health)
Norfolk County Council
01603 228912
5th June 2013
3.5.2 Cambridgeshire and Peterborough
Healthwatch Cambridgeshire
Thank you for sending us EACH's Quality Account. Unfortunately, as a brand new organisation
Healthwatch Cambridgeshire are not in a position to comment on Quality Accounts this year.
Please do send us these in future however we will be delighted to contribute.
Sandie Smith
Chief Executive Officer
Healthwatch Cambridgeshire
29th May 2013
24
Cambridgeshire and Peterborough CCG
This looks good and set in the right direction. I would like included as a future target:
- Section 3.2 and 2.2.6 working with other agencies ‘'developing in collaboration with partners responsive packages of support to identified
need for best use of resources, integrated working and in supporting the family to stay
together.
- Section 3.2d "working with other health and local authority provision to plan together and enable access
to residential short break and reduce further cancellations"
- Section 3.3 –
“working with Pinpoint and other parent engagement forums to strengthen our
participation skills and strategy for on going engagement with families in service design,
improvement and evaluation. Evidence will be collated to demonstrate how views were
listened to and acted upon”.
Eva Alexandratou
Head of Children's Joint Commissioning
28th May 2013
Cambridgeshire Overview and Scrutiny Committee
No response was received.
3.5.3 Suffolk
Healthwatch Suffolk
This is the first year in which Hospices have been asked to submit quality Accounts, so they
are reporting with no preceding Quality Account, for reference. However the EACH
Quality Account does contain a set of priorities for the year 2012-13. The Quality Account
received from the EACH group of Hospices is a clear well prepared document.
The Hospice’s priorities for the current year are well set out and understandable they are
derived from the objectives of the ‘care development programme’. The priorities as set out
in the document have resulted in an improvement to the service offered to their service
users. Additional staff have been recruited, improvements in staff training have been
undertaken, they have reviewed and changed their current processes for providing care
across the services. As a result the time taken to complete a non-urgent referral has
reduced from some 24 days to an average of 7 days. Specialist palliative and psychological
support is now available to meet the individual needs of users. EACH has improved their
core skills training programme.
25
The priorities for the next year (2013-14) are well set out and fit well with their continued
priorities for improvement. EACH has taken account of comments from service users most
of which are positive. Healthwatch Suffolk looks forward to working with EACH in the
coming years as they continue to improve their service to their users.
David Evans
Chair – Healthwatch Suffolk
3rd June 2013
Ipswich and East CCG and West Suffolk
Ipswich and East Suffolk Clinical Commissioning Group and West Suffolk Clinical
Commissioning Group, as the commissioning organisations for EACH, confirm that the
Trust has consulted and invited comment regarding the Quality Account for 2012/2013.
This has occurred within the agreed timeframe and the CCGs’ are satisfied that the Quality
Account incorporates all the mandated elements required.
The CCGs’ have reviewed the Quality Account data to assess reliability and validity and to
the best of our knowledge consider that the data is accurate. The information contained
within the Quality Account is reflective of both the challenges and achievements within the
Trust over the previous 12 month period. The priorities identified within the account for
the year ahead reflect and support local priorities.
Ipswich and East Suffolk Clinical Commissioning Group and West Suffolk Clinical
Commissioning Group, are currently working with clinicians and manager from the Trust
and with local service users to continue to improve services to ensure quality, safety, clinical
effectiveness and good patient/care experience is delivered across the organisation.
This Quality Account demonstrates the commitment of the Trust to improve services. The
Clinical Commissioning Groups endorse the publication of this account.
Susan Barker
Head of Clinical Quality and Patient Experience
31st May 2013
Suffolk Overview and Scrutiny Committee
Due to the County Council elections this year, the Suffolk Health Scrutiny Committee was
unable to meet to discuss the content of this year’s Quality Accounts during the timescales
set by the Department of Health. In previous years, the Committee has not commented
individually on providers Quality Accounts, as it has taken the view that it would be
appropriate for Suffolk LINk to consider the documents and comment accordingly. The
Committee is aware that the dedicated Quality Accounts Working Group established by
Suffolk LINk has continued its work on Quality Accounts for 2012/13 and will be providing
26
its views to the Healthwatch Board for formal ratification and submission to Suffolk
providers.
The Committee has, in the main, been happy with the engagement of local healthcare
providers in the work of the Committee over the past year, and is keen that these
relationships continue to develop to ensure the best possible health services for the people
of Suffolk. Consideration will be given to discussions with providers about how they are
performing against their agreed targets, and potential scrutiny issues raised, when the
Committee reconvenes in summer 2013.
Theresa Harden
Business Manager,
Democratic Services,
Suffolk County Council
3.5.4 Essex
There were no responses received from Healthwatch, the Clinical Commissioning Groups,
or the Overview and Scrutiny Committee in Essex.
END
27
Appendix 1
COUNTY
NORFOLK
(including
GY&W)
SUFFOLK
CAMBS
Clinical
Commissioning
Group
HEALTHWATCH
HWB SCRUTINY
Sally Child
Christine MacDonald
Linda Bainton
sallychild1@nhs.net
christine.macdonald@he
althwatchnorfolk.co.uk
linda.bainton@norfolk.go
v.uk
01603 257000
Lakeside 400,
Old Chapel Way,
Broadland Business
Park, Norwich,
Norfolk NR7 0WG
01603 813904
Rowan House, 28,
Queens Road,
Hethersett, Norwich,
NR9 3DB
01603 223024
Norfolk County Council
Gena Nicholls,
Children's Complex
Case Manager
gena.nicholls@suffolk.
nhs.uk
Tel 01473 770142
Rushbrook House,
Paper Mill Lane,
Bramford,
Ipswich,
IP8 4DE
Michael Ogden, Lead
Officer
Sue Morgan
michael.ogden@healthw
atchsuffolk.co.uk
01449 703949
12-13 Norfolk House,
Williamsport Way,
Needham Market,
Suffolk,
Ip6 8RW
Sue.morgan@suffolk.gov.
uk
01473 264512
Endeavour House,
8 Russell Road,
Ipswich,
IP1 2BX
Eva Alexandratou,
Head of Children's
Joint Commissioning
Sandie Smith
Liz Robin
eva.alexandratou@ca
mbridgeshire.gov.uk
sandie.smith@healthwat
chcambridgeshire.co.uk
liz.robin@cambridgeshir
e.gov.uk
01223 699146
01480 377625
01223 703259
28
Cambridgeshire
Children and Young
People's Services
Cambridgeshire and
Peterborough CCG
Scott House,
5 George Street,
Huntingdon,
Cambs,
PE29 3AD
Cambs Public Health
PETERBOR
OUGH
As for
Cambridgeshire
Peterborough not yet
underway
Alexander Daynes
Peterborough City
Council
01733 452447
alexander.daynes@peter
borough.gov.uk
ESSEX
Stewart McArthur
Thomas Nutt (CEO)
Colin Ismay
stewart.mcArthur@sw
essex.nhsk
thomasnutt@healthwatc
h.org.uk
colin.ismay@essex.gov.u
k
Building 4
Spencer Close
St. Margaret’s Hospital
The Plain
Epping
Essex.
CM16 6TN
01376 572829
RCCE House,
Threshelfords Business
Park,
Inworth Road,
Feering,
Essex,
CO5 9SE
01245 430396
Room C328 County
Hall, Chelmsford,
Essex,
CM1 1LX
Children’s
Commissioner
29