Haven House Children’s Hospice
Quality Account
Reporting period:1st April 2012 to 31st March 2013
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Quality Account Haven House
Chief Executive’s Statement –
Together with the Board of Trustees, I would like to thank all of our staff and volunteers for
their achievements over the past year. The hospice has continued to provide a high quality
service and remains financially sound. We have achieved this by providing high quality, cost
– effective services to our patients and their families. Haven House is 10 years old this year.
Haven House Hospice now has a well-established clinical and corporate governance
function. This has enabled the hospice to plan services identifying local priorities and
respond well to national changes. Our regulators the Care Quality Commission (CQC) have
made an unannounced visit and inspected the hospice this year (2013) and state that Haven
House runs an extremely good service and there are no compliance issues. The hospice has
a culture of continuous quality monitoring, in which any shortfalls are identified and acted
upon quickly. I am responsible for the preparation of this report and its contents. To the best
of my knowledge, the information reported in this Quality Account is an accurate and a fair
representation of the quality of healthcare services provided by our hospice. The safety,
experience and outcomes for all our children, Young people and families are of paramount
importance to us. We continue to actively seek the views of our service users and
professionals.
Mike Palfreman
Chief Executive
Parents feedback March 2013
Mum was absolutely delighted and extremely grateful to have had this opportunity to stay in
the family flat for 5 days which allowed her and Dad to take a much needed break - confident
in the knowledge that her son was close by and being well cared for. She was particularly
appreciative of the comfort and facilities provided within the family flat.
She could not speak highly enough of the nursing staff and of the level of care provided. As
a result of this experience, she would now be confident to leave her son at the hospice in
future without either parent being on site. She highlighted the massive importance to parents
of having this opportunity to take a break knowing their child is being well looked after.
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Part 1
Priorities for Improvement and statements of Assurance from the Board
CQC Summary of February 2013 inspection report:
“Everyone we spoke to say the quality of the care the service provided at Haven House was
of a high standard and safe. Relatives were very much included in decision making for their
children, whose support needs were being met despite the complex and difficult problems
they suffered from”.
People's emotional and spiritual needs were understood and provided for. The provider used
volunteers to provide additional support and services. People were cared for safely and
appeared content. Staff professional development needs were met; the provider had
systems in place to audit and review how it provided services and had used them to make
improvements. It intended to implement personal risk assessment into care management
electronic care plans in the near future.
All staff we spoke to said they would recommend the service to their friends. Many said they
would not work in the service if they had not believed they had made a difference.
All relatives spoken to described the service in very positive terms. One relative told us how
she "totally trusted people here", another how "they surpass all my requirements". Another
called it "outstanding".
The Care Quality Commission stated that we needed to arrange more training for staff to
understand more about young people's (16-19 years) capacity to consent. Haven House has
already been arranging this for parents under the Expert Parent programme.
Priorities for Improvement:
Future Planning Priority 1
Full implementation and monitoring of Sickness and Absence Policy across the
organisation (includes the Bradford Score).
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This was identified as a priority because Haven House has employed Barts Health
Care Occupational Health Department to manage our contract.
Haven House Staff were briefed of the change at our staff away day that this will be
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
one of our objectives going forward this year. All managers will receive training on
managing sickness and absence in their department.
This will be monitored by Sickness and absence reporting and reported to Senior
Management Team.
Future Planning Priority 2
Safe Recruitment of volunteers
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This was identified as a priority in completion of the audit “Does Haven House meet
the safer network standards”?
This goal will be achieved by implementation of changes recommended by the
Safeguarding Committee.
Progress will be monitored by the Safeguarding committee who will see an increase
in numbers of volunteers safely processed and working within Haven House
services.
Future Planning Priority 3
To increase the number of referrals to Haven House for children at end of life and
ensure that they and all of the caseload have CHASE care plans in an electronic
format.
Ensure that all Haven House care plans (including end of life and emergency) are up to date
and held in electronic version for our teams (baseline for team April 2013) on the CHASE
data base. This will be monitored by the Clinical Governance Committee and Board.
 This was identified as a priority from a clinical care investigation about an individual
child’s care.
 This goal will be achieved by the individual nursing teams being responsible for their
own caseload of children.
 Progress will be monitored by quantifying the completed signed care plans on the
CHASE data base.
 All care staff have this priority as an annual objective this year 2013-14
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Part 2
Statements of Assurance from the Board:
Review of services
During 2012-13 the hospice provided NHS London with the following services for children
and young people:
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Nursing Palliative care and Symptom Control
Stepped discharge from hospital to home
Planned Respite Care
Children’s day care
In addition the Hospice has provided the following services through charitable funding:
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Post bereavement care
Music Therapy
Special Yoga
Toy home loan service
Support for parents/carers in coffee Mornings for pre and post bereaved parents.
The Expert Parents programme
Buddies (Brothers and Sisters group based on the Winston’s wish bereavement
model that builds resilience in bereaved siblings.
The hospice has reviewed all the data available to us on the quality of care in these services.
The income generated by the NHS Services reviewed in 2013 represents 100% of the total
income generated from the provision of NHS services by Haven House for 2012-13
What this means:Haven House Children’s Hospice is funded through NHS contracts, local authority funding,
grants and fundraising activity. The income generated from the NHS represents
approximately 30% of the running costs of the Hospice. The remaining income is generated
through donations, fundraising, legacies and generous support from our local community
and businesses
All services delivered by the Hospice are funded through a combination of fundraising
activity and contracts with NHS. The NHS contracts mean that all services delivered by the
hospice are part funded by the NHS.
Statement regarding National Audits:
The Department of Health and Monitor have jointly written to provide advance notice of likely
changes to Quality Account reporting requirements for the 2012/13 round of Quality
Accounts. This follows consideration by the National Quality Board about strengthening
Quality Accounts by introducing mandatory reporting against a small, core set of quality
indicators.
These proposed changes would in the first instance affect NHS acute, mental health and
ambulance trusts. The Department of Health is currently exploring the feasibility of extending
the proposed new reporting requirements to independent sector providers of NHS-funded
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care from 2014/15. There are no current reporting arrangements for hospices regarding
national audits.
From 1st April 2011 the code of practice for the prevention and control of infection was
enforceable under Care Quality Regulations.
Palliative Care Funding Review Children’s Pilots
Haven House has been participating in the children’s pilot led by Great Ormond Street
Hospital for Sick children. The period of participation will end in September 2013.
What is the Palliative Care Funding Review Pilot?
The Palliative Care Funding Review Pilots were established to collect data to inform
implementation of a proposed per-patient funding model (payment by results) for
palliative care for adults and children in England.
Performance targets agreed with our commissioners
Organise patient carers survey or feedback
Involve children and families in the
development of the hospice menu
Increase access for patients with noncancer diagnosis
Personalised care planning/ Patients to have
a nominated key worker
Staff turnover rates
Sickness levels
annually
annually
Year on year increase in numbers
Quarterly
quarterly
quarterly
Diversity Audit
In May 2012 Together for Short lives awarded Haven House a diversity award for the work
the audit team had carried out ensuring that we provide a service that meets the needs of
our diverse community.
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Statement regarding participation in-house clinical audits:
Two audits were chosen this year by the Director of Nursing and the clinical governance
team. The audits were monitored by the Clinical Governance Committee and Board. The
titles and learning were:1. Does Haven House Children’s Hospice Services meet the Safe Network
Standards?
Children England and the NSPCC have produced the document Safe Network
Standards which gives core standards and guidance for safeguarding children in the
voluntary and community sector. These national core standards and accompanying
guidance are designed to support non-statutory organisations to put into place clear
safeguarding arrangements for children and young people.
Audit Aim and Objectives
Using the Safe Network standards, to determine whether Haven House has in place clear
safeguarding arrangements to:
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recruit and induct staff and volunteers and to help them perform their role safely
ensure it has taken appropriate steps to protect children and young people identified
as being at possible risk of abuse or neglect
effectively minimise the risk of bullying and put a stop to it when it occurs
manage physical risks to children and young people when they take part in any
activities
Findings
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Individual person specifications for job descriptions require updating.
A short listing scoring system is now in place as a result of the audit.
Human Resources will be making the process for short listing candidates for
interview, to be readily available on the company intranet.
A Buddies (brothers and sisters group) standard operating procedure will be
implemented on anti-bullying behaviour.
There was a discussion on children bullying at this year’s Safeguarding Level 3
mandatory training and this will be incorporated into future training.
2. Audit of care plans for all children attending Haven House Children’s Hospice
Audit Aim and Objectives
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To determine how many children had a valid End of Life Care Plan (ELCP) and how
often it was updated.
To determine how many children had an Emergency Care Plan (ECP).
To determine whether all the children admitted for care had up-to- date Haven House
Care Plans.
To determine the number of children receiving Tertiary Care at GOSH, Barts Health
Care and Guys Hospital.
To determine the number of children who are under the Paediatric Palliative Care
Team at GOSH.
To identify the children’s categories of care from the Palliative Care Funding Review
(PCFR).
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End of Life Care Plans (ELCP)
None of the children had a paper copy of an up-to-date ELCP in their case files.
Emergency Care Plan (ECP)
12 (10%) ECPs were found. Of these one was reviewed at the end of a year and two
were reviewed after one year.
Haven House Care Plans
94 (85%) of children had a full set of Haven House Care plans in their case files. Of
these 20 had been reviewed after a year, 10 after two years and 11 more than two
years after they were first completed.
Tertiary Care
65 (59%) children had evidence that they were under the care of a tertiary centre.
GOSH Consultants other than Palliative Care = 54
Barts Health Care = 07
Guy’s Hospital = 04
Palliative Care
15 children were determined to be under the care of the Paediatric Palliative Care
Team at GOSH
Recommendations and Actions
1. Establish, together with Great Ormond Street Hospital (GOSH) and the other Tertiary
Centres, which children/young people on the active register require palliative care
2. Compare our list of children/young people with the GOSH Specialist Palliative Care
list of Haven House children/young people
3. Refer any children who require palliative care referral to The Specialist Palliative
Care Team
4. Ensure that the standard terminology for End of Life Care/Emergency Life Care
Plans (ELCP) is understood by all staff
5. Ensure that an ELCP is completed for all children/young people who are referred to
Haven House for palliative care
6. Ensure that ELCPs are available for all children/young people especially those who
require palliative care
7. Update the Haven House Care Plans which are filed in the case files
8. Support the East Anglia’s Children’s Hospices (EACH) Paediatric Palliative Care
Managed Clinical Network (MCN) Project
The Haven House Calendar of Audits
From 1st April 2011 the code of practice for the prevention and control of infection was
enforceable under Care Quality Commission regulations. In anticipation of the regulations
Haven House has instigated environmental audits (including parents as auditors). There is
now a designated staff nurse audit lead for infection control that has attended the study days
and works on the relevant audits with an expert parent carer.
Hand hygiene audits are carried out as part of a calendar of annual audits and presented at
clinical governance committee. Audit is a standing agenda item on the clinical governance
committee and the board. Mandatory training takes place every year and this includes
updates for staff on health and safety and infection control.
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Tracey Wotton Expert Parent / Parent Auditor speaking at our Staff away day in April 2013
Links to university
We provide a training placement for student nurses from Anglia Ruskin, London South Bank
University and Middlesex University.
“Haven House is a nurturing and supportive environment. I wish all student nurses
had the opportunity to experience such a special place”

Statement about research:
The number of patients receiving NHS services provided or subcontracted by the
hospice in 2012-13 that were recruited during that period to participate in research
approved by research this committee was nil.
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Use of the Commissioning for Quality Improvement and Innovation (CQUIN)
payment framework :
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The hospice income was not conditional on achieving Quality Improvement and
Innovation CQUINN goals through Commissioning for Quality and Innovation
payment framework because the lead Commissioner did not request them.

What others say about us:
The hospice is required to register with the Care Quality Commission (CQC) and its
current registration status is unconditional. The hospice has no conditions on
registration. The CQC has not taken any enforcement action against the hospice
during 2012-13.
The hospice has no actions to take and a couple of points were made in the CQC’s
assessment. The hospice was fully compliant and rated as low risk.
The hospice has not participated in any special reviews or investigations by the CQC
during 2012-13
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Waltham Forest Food hygiene inspection
Haven House kitchens were inspected by a Waltham Forest Environmental Health
Officer in May 2013. We are overjoyed to increase our Food Hygiene rating from 4
stars to 5 stars awarding us a very good assessment.

Data Quality:
The hospice did not submit records during 2012-13 to the Secondary Users Service
for inclusion in the latest published data. This is because the hospice was not eligible
to participate in quality accounts until this year.
To improve data quality the Clinical Nurse Manager is also the Project Manager for
the CHASE data base and is a member of the national user group. The Director of
Finance is a member of the national Steering Group. The hospice will be continuing
to take the following actions:-
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To ensure that all children are allocated an ICD 10 code.
To implement Risk Assessment for all children on CHASE.
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Clinical Coding Error Rate:
The Hospice was not subject to the Payment by Results clinical coding audit during
(2012-13) by the Audit Commission.
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Part 3:
Review of Quality Performance 2012-13
Total number of patients/ children and
families served
139 children (open cases) and 180 families
(includes post bereaved families)
% of new patients
21% of current caseload
Number of referrals received 2012-13
37 new referrals
29 accepted
5 declined at panel due to not meeting ACT
criteria.
1 withdrawn
2 pending at end of year
% occupancy figures
92% average over the year on 3 beds/night
(flexing up to 5 beds as required)
% discharged from care
16% - 23 cases closed
% in transition
20% 28 of 139 children aged 14 and over
Number of day cases
479
136% over the year on 1 day case/day
Number of episodes of non-clinical services
(community toy home loan, play therapy,
music therapy, group music, yoga)
740
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Haven House Children Originating Primary Care
Trusts for Epilepsy audit Waltham Forest (41)
Redbridge (30)
Havering (15)
Barking and Dagenham (8)
Haringey (4)
City and Hackney (4)
Barnet (2)
West Essex (2)
Enfield (1)
Islington (1)
Hertfordshire (1)
Newham (1)
The ACT Categories for the Epilepsy audit of Haven House Children
ACT 1 (11)
ACT 2 (07)
ACT 3 (25)
ACT 4 (55)
ACT 5 (07 Aiming High)
Uncategorised (05)
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The ICD10 Codes of the caseload of Haven House children for the
Epilespy Audit
C (Malignant neoplasms) 01
D (Diseases of the blood) 02
E (Endocrine disorders) 09
F (Mental and behavioural
disorders) 03
G (Disorders of the nervous
system) 46
P (Certain conditions orginating
in perinatal period) 13
Q (Congenital malformations,
deformations and chromosomal
abnormalities) 36
There is no national minimum data set for children’s hospices.
Our Services
Since 2003, Haven House Children’s Hospice has been providing specialist care for children
and young people (birth-19th birthday) who have life-limiting conditions and who are unlikely
to reach adulthood.
We also provide a range of support to families as well a number of services designed to
improve emotional wellbeing, both in the hospice and in the local community. All of our
services are provided free to the families we support
The hospice is based in Woodford Green, Essex and our catchment area covers North
central and East London and West Essex.
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Support for children and young people
Symptom Control
Dr Dilini Rajapaske Palliative Care Consultant GOSH
Nursing Palliative care
Care is led by qualified sick children’s nurses; there is at least one qualified sick children’s
nurse on every shift. We work closely with the Symptom Care Team from Great Ormond
Street Hospital and have frequent visits from the consultants and nurses in the Symptom
Care Team. We have further medical support from our local GP surgery and community
pharmacist.
Palliative nursing care can be provided at the hospice to prevent hospital admissions or to
reduce the length of a hospital stay.
Stepped discharge from hospital to home
We facilitate transition from hospital to home for infants and children. This may be where
families need support to learn new skills to care for their child or for children who have
undergone major surgery or who have a tracheostomy and are unable to go directly home.
Planned Respite Care and short break care
This can be day care or overnight stays both during the week and at weekends. School
transport can be rearranged for some children, so that they can continue to attend school
whilst staying at the hospice. Care stay bookings are made in advance through the Care
administration team.
Nursing support is available via the telephone 24 hours per day.
Post bereavement care
When a child or young person is reaching the end of their life it is important that they and
their families are provided with as many choices as possible which will include expert
medical and nursing care and an appropriate and dignified environment. We are able to
accommodate the family at the hospice and to facilitate friends visiting as requested.
After a child's death we continue to support the family as needed. Our Butterfly Suite has
been planned as a private space for family and friends to come and grieve before the
funeral.
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Music Therapy
Music therapy is based on the belief that we can all respond to and appreciate music,
despite disability or illness. In the hospice setting, music therapy provides a safe space for
children and young people to be expressive through the unique non-verbal language of
music. Haven House provides music therapy to meet children and young people’s individual
needs and also facilitates group music making sessions.
Special Yoga
Special Yoga is a comprehensive programme of yoga techniques designed to enhance the
natural development of children with complex needs. It has been found that by practicing
yoga regularly such children and young people experience improvements in their sleep,
communication, awareness and general well-being. Special Yoga takes place at Orchard
Children’s Centre, Woodford Green weekly, during term time, on a Wednesday 10-11am.
Toy home loan service
The service is available to families with children who have additional or special needs.
Haven House gives them access to specialist toys and equipment.
These toys can be used to stimulate movement, communication, learning and development.
Toys can be kept for up to 3 months and Haven House offers a free delivery and collection
service.
Play Specialist
Our qualified play specialist provides therapeutic play and support in the hospice, offering
stimulating, sensory play to meet the individual child’s needs.
Play specialist provides community visits for children who are unable to attend school or are
not yet receiving full time education and can include siblings if present
Pre- School Children
This is a service for pre-school age children who fulfil the hospice criteria. The children can
enjoy various activity sessions throughout the day that include Group Music sessions,
creative craft in the recently refurbished craft room and Interactive sensory play with many
different themes to choose from. Outside in the extensive grounds, there is a themed play
area and a sensory garden with noise wall.
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Support for parents/carers
Coffee Mornings for pre and post bereaved parents
Haven House hosts a monthly group for parents/carers to meet. It is a time for informal
conversation, discussion and mutual support in a relaxed environment.
Throughout the year various topics are covered and are chosen by the parents themselves,
from travelling abroad to home adaptations.
“I have found it to be an invaluable part or the service”
“I want to thank everyone at Haven House for their help, support and especially for
organising all the lovely coffee morning get-togethers and other events.”
Complementary therapies
Haven House offers complementary therapies to parents/carers whose children are
receiving care at Haven House. These include Rejuvanessence (a holistic facial massage)
and Reflexology (manipulation of reflex points on feet) both of which can promote comfort,
relaxation and reduction of distressing symptoms.
The Expert Parent Programme
Christine Twomey, Director of Nursing, was presented with the Young Epilepsy Professional
Champion award by Dr. Miriam Stoppard Champion Award at City Hall, London 2013.
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The award recognises Christine’s and her team’s dedication in providing the support for
children and their families living with epilepsy. Christine commissioned Young Epilepsy (The
Chair of Paediatric Epilepsy) to provide training (funded by a grant from Roald Dahl’s
Marvellous Children’s Charity) for Haven House parents and parents/carers in the
community to better understand their child’s condition and as a result their care.
Expert Parents group summer 2012
Parents generally found the sessions helpful; informative and enjoyable; describing them as
“eye-opening”; brilliant and “excellent”.
The trainers were noted to be “approachable”; “upbeat”; “relaxed” and “informative” and they
provided good explanations of topics in clear language that was easily understood. The
provision of hand outs was appreciated as was the opportunity to ask questions, particularly
from professionals and to be given answers. Group sessions were enjoyed and open
discussions valued. Examples of general comments made by parents included: “it was all
invaluable” and “it will definitely make a difference”.
The feedback from our first Expert Parents course funded by the Department of Health 30
million stars project enabled us to identify a need to empower and educate parents in all
areas of care and treatment of children with complex need. This was evident particularly
following our Epilepsy audit when we identified that our children with epilepsy care was far
from optimal.
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Support for the family
Buddies
The Buddies service offers all siblings of children using Haven House services regular
support groups where they can meet have fun and enjoy activities and workshops together.
Haven House follows the Winston’s Wish bereavement model of building resilience.
Individual support is available for Siblings who are finding it hard to deal with their feelings
about the condition and needs of a brother or sister
We have one of the most active sibling support groups in the UK running themed projects
ranging from drama workshops and media programmes to sports activities and music
making.
Compliments from Parents (Visit to Saddler’s Wells to see Pantomime)
Forty five children from Haven House and their families went to see Peter Pan pantomime at
Saddlers Wells Peacock Theatre in London
The families really enjoyed being together in a group with children with similar difficulties.
One parent said, “it was a relaxing night out just knowing people wouldn’t mind if your child
screamed and made a noise”. Other parents commented that it was a great night out with
lots of humour and laughs for all and the theatre had an disability accessible car park at the
back!
Compliment from Parents (Respite care visit)
To all staff members we want to say thanks from the bottom of our deepest heart you are all
wonderful.
When we used to think about the big day we just shiver, what will happen, where will our
daughter stay, and what we will do? But it’s just you the amazing people who make our life
easier. Thanks very much!
Compliments from Parents (Christmas Party at Number 10 Downing Street)
Coming to Number 10 Downing Street is very exciting for both of us. It is just so nice for
Leah to have a treat and a bit of a break from the everyday difficulties she faces.
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Patient Safety
Number of clinical incidents/accidents April 1st 2012 - 31st March 2013
Number of medication related incidents
Total number of medication incidents is
twenty eight
Number of Controlled Drugs incidents
Total number of controlled drugs incidents is
none.
Number of Accidents
Total number of accidents is six.
Number of clinical incidents
Total number of clinical incidents is fifty nine
Number of safeguarding incidents reported Total number of safeguarding incidents
by the hospice
reported is one
Infection Prevention and Control rates:
Total number of children contracting infection
at hospice was none
Total number of children admitted with a
known infection was none
Complaints made to the hospice
Total number of complaints was none,
although a parent made a complaint about
the London Borough of Redbridge and
mentioned Haven House in the letter. This
issue was consolidated.
What our staff say about the organisation:
During June and July 2012 Haven House staff were ask to take part in the Hospice Staff
Survey. The survey was run by Birdsong Charity Consulting; on behalf of help the Hospices.
42 staff from Haven House completed the survey and below are some of the verbatim
responses to the questions.
What is the best thing about working for your charity?
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“The care staff are the nicest most helpful and supportive people I have ever had the
pleasure to work alongside. They make new staff welcome and are always there to
lend a hand”.
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“The passion amongst staff and volunteers and how everyone is fully committed to
their work and in helping the charity reach its goals”.
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“The beautiful children and families that we care for, it is rewarding, varied and
thoroughly enjoyable”.
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“Fulfilment of making a difference to children’s lives”.
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“Having the opportunity to make a difference for the children and their families”.
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“I am proud to work for Haven House, the work we do within the community is so
important and our families need us and rely on the services we provide”.
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If you could change one thing about working for your charity what would it be?
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“To be able to provide a wider range of services”.
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“Bringing staff together onto one site”.
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“More funding would enable more services to be provided”.
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“Nothing”.
Employee Turnover and Retention
How many staff do we employ?
We employed 45 FTE staff as at 31 March
2013.
Staff turnover
Employee turnover for care staff in the period
1 April 2012 to 31 March 2013 was 18 %
Ian Sparks (Chair of Trustees) at our Director of Support Services leaving for
maternity leave party.
The Board of Trustees is fully committed to the quality agenda. The hospice has a wellestablished governance structure, with members of the board having an active role in
ensuring that the hospice provides a high quality of service in accordance with its Statement
of Purpose.
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