1
Introduction from Chief Executive
I am delighted to present the 2014/5
Haven House Quality Account.
On behalf of the Board of Trustees and
Senior Management Team at Haven
House, I would like to thank all our staff
and volunteers for their excellent
achievements over the past year. In that
year Haven House has successfully
provided more specialist palliative care to
more children and families. We have also
further improved our financial situation,
thanks to generous support from our local
communities and our partnerships with
the statutory sector.
HRH The Duchess of Gloucester with Chair,
Frances Daley, Director of Nursing, Christine
Twomey and Haven House family, Karen and
Yasmin at the Holistic Care Centre opening
Haven House has a culture of continuous
quality
improvement,
in
which
opportunities to improve care delivery and any shortfalls are identified and quickly acted
upon. The experiences and outcomes for children, young people and their families are of
paramount importance to us all at Haven House. Our Clinical Governance Committee and
Board provide assurance, oversight and scrutiny on all matters relating to quality of care.
In September 2014, we opened our new Holistic Care Centre which was funded in part by a
grant from NHS England. This Centre has enabled us to expand the services we currently
provide for our children and their families – including increased physiotherapy, music therapy
and therapeutic yoga – as well as the training we provide for our staff, volunteers, parents
and local health professionals. Of particular note is that we have recently commenced closer
to home clinics in partnership with the specialist palliative care team at Great Ormond Street
Children’s Hospital.
We have recently completed a five year strategy for the hospice and are setting ourselves
ambitious targets, including that we wish to support 500 children each year by 2020. In order
to further shape this strategy as it progresses, we shall continue to seek and take account of
the views of our service users, commissioners and all our various stakeholders.
I am responsible for the preparation of this report and its contents, with the support of my
Senior Management Team and in particular the Director of Nursing. 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 Haven House.
Mike Palfreman
Chief Executive
2
Part 1
Priorities for Service Quality Improvement 2015-16
Future Planning Priority 1

A comprehensive review of medicines management at Haven House by an
independent pharmacist using our audit data.
Future Planning Priority 2

To evaluate and review the use of the Paediatric Early Warning Score (PEWS) in a
children’s hospice setting (links to national audit)
Future Planning Priority 3

To comprehensively prepare Haven House for high technology care by the
installation of a back-up generator and care staff competency framework for
ventilated children and young people
3
Part 2
Statements of assurance from the Board
Board of Trustees
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 service in accordance with its statement of
purpose. The Clinical Governance Committee is chaired by Dr Sam Jayaraj, Trustee.
Review of services
During 2014-15 the hospice provided NHS England London Region with the following
services for children and young people:





Nursing palliative care and symptom control
Stepped discharge from hospital to home
Planned respite care
Children’s day care
End of life care
In addition, the hospice has provided the following services mainly through charitable funding
and also some CCG funding







Post-bereavement care
Music therapy
Special yoga
Toy home loan service
Support 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.
What this means
Haven House Children’s Hospice is funded through NHS contracts, local authority funding,
grants and fundraising activity. NHS funding represents 21% of Haven House’s income
during this period. 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 the NHS.
4
Haven House funding 1 April 2014 to 31 March 2015*
Total income from the NHS including the balance for the NHS
England capital grant to build the new Holistic care centre, the
NHS England annual grant and income from CCGs
Local Authority income
Fundraising income
Retail income
Investment income
Total income
£827k
£35k
£2908k
£178k
£10k
£3958k
*the above figures are not audited as at 30th June 2015
The % occupancy rate against staffed capacity was 87%.
Statement regarding national audits
The regulations require providers to complete the following statement regarding National
Audits:
The report of one national clinical audit National Institute for Health and Care Excellence
(NICE) Medicines Management for Care Homes was reviewed by in 2014-15 and Haven
House took the following actions to improve the quality of healthcare provided:

Supporting residents (young people for respite care) to make informed decisions
regarding their medication, informed consent, in line with the Mental Capacity Act for
less complex decisions.
Statement regarding participation in in-house clinical audits
The regulations require providers to complete the following statement regarding local audits:
Haven House would like to report that apart from the NICE Medicines Management audit and
the care pathway audit there were four local clinical audits which were completed and
reviewed by care staff using the Hospice UK audit tools for Controlled Drugs, Infection
Control, Nutrition and Hydration.
Following last year’s audit on Assessment, Dr. Kew, Advanced Volunteer and the Specialist
Nurse for Clinical Assessment audited the patient journey from panel to initial assessment.
This was presented to all Haven House staff at our organisational learning day in April 2015.
In 2014-15 Haven House took the following actions to improve the quality of healthcare
provided:
 Reviewed and updated policies and procedures in the relevant areas as part of their
triennial review.
 The Director of Nursing continued to be a member of the Local Intelligence Network
(LIN) for Controlled Drugs
Monitoring of the clinical audit calendar takes place at the Clinical Governance Committee. A
short survey on the provision of children’s nutrition at Haven House was completed. Further
information on any aspect of the CQC Fundamental Standards can be found in the minutes
of the Clinical Governance meetings.
5
Quarterly performance targets agreed with the North East London CSU
commissioners
Organise patient parents/carers survey or feedback
The number of incidents that have been reported to the National
Reporting and Learning Service
Annually
Quarterly
Serious incidents, clinical incidents, never events and other
requirements. Including medicines management
Quarterly
Duty of Candour
Quarterly
This applies to patient safety incidents that result in moderate or
severe harm or death and that are reported to local risk
management systems
Staff turnover rates
Sickness levels
Report on specific safeguarding issues and number of
protection cases
Quarterly
Quarterly
Quarterly
Safeguarding alert/concern we have received
Relevant staff and volunteers have a DBS which is still up to
date
Quarterly
Percentage of staff that have done safeguarding training over
those who require it
Quarterly
Quality account progress report against quality priorities
Quarterly
Increase the level of self-reported ability to manage the needs of
patients at home.
Quarterly
Reason for leaving the service (patients)
Quarterly
6
Patient Safety - Number of clinical incidents/accidents at Haven House from 1 April
2014 to 31 March 2015
Haven House uses Lloyds Pharmacy
Total number of medication
for dispensing medication for respite incidents is 45
care.
Number of medication incidents:Dispensing
Prescribing
Transcribing
Procedural
15
13
0
17
Number of Controlled Drugs incidents
Total number
incidents is 0
Number of Accidents:
Clinical
Total number of accidents is 1
Number of Clinical Incidents
Total number of clinical incidents is 26
of
controlled
drugs
Number of safeguarding incidents Total number of safeguarding incidents
reported by the hospice
reported is 0
Infection Prevention and Control rates
Total number of children contracting
infection at hospice was 0
Complaints made to the hospice
Total number of children admitted with a
known infection was 0
1
Safeguarding Children
Haven House is committed to developing and maintaining a thorough and transparent Child
Protection and Safeguarding strategy to afford all children who use services maximum
safeguards. Haven House recognises that in protecting and safeguarding children, it is also
providing a framework for all paid staff, volunteers and visitors which identifies and promotes
best practice and minimises uncertainty for those working with children.
Haven House supports the principles within ‘Working Together to Safeguard Children’ and
follows the London Child Protection procedures.
Safeguarding Committee has met to discuss the safeguarding strategy for the organisation.
There is cross-organisation representation, including the Director of Human Resources and
an Income Generation Team representative. The committee has discussed Safeguarding at
Haven House particularly benchmarking our service with Themes and Lessons Learnt from
NHS Investigation into matters relating to Savile, February 2015.
Child Death Overview Panel (CDOP) the Director of Nursing is a member of the CDOP in
Waltham Forest. The Clinical Nurse Manager (Named Professional Safeguarding lead) acts
as her deputy for the panel.
7
Safeguarding Training (adults and children) is delivered at an appropriate level, from level 1
to level 3. Initial training is provided as part of induction then staff and volunteers update
their training either annually or every three years depending on the level of training and the
position held.
Statement regarding our Planning Priorities 2014-15
Planning Priority 1
To ensure that all recommendations from statutory agencies were implemented along with a
review of all commissioned reports. This included the implementation of mental capacity
assessments for our young people aged 16-19 years.
To achieve this we:
 Recruited a Social Worker who is a best interest assessor for deprivation of
liberty and mental capacity
 Recruited a Transition and Mental Capacity Sister who has the Registered
Nurse Learning Disability RNLD qualification
 Completed 10 mental capacity assessments with young people on our Haven
House caseload aged 16-19 years
Planning Priority 2
To utilise the space in our new Holistic Care Centre to ensure it brings the maximum benefit
to our families and children, through new/augmented services including:





New Physiotherapy sessions
New Complementary Therapy services
Expansion of education and training services
A formal Nurse led assessment clinic for children and young people to include a
process for clinical re-assessment and implementation of personal health budgets
To implement a ‘Care Closer to Home’ model with the Great Ormond Street Hospital
consultants
To achieve this we:
 Increased our physiotherapy hours and identified the need for an assessment clinic
and a treatment clinic as we moved into the Holistic Care Centre
 Created dedicated space for complementary therapies in treatment rooms in the
centre
 Appointed a Specialist Nurse for Clinical Assessment who had completed the
assessment and nurse prescriber’s module at Masters’ level at Anglia Ruskin
University. This allowed us to start advancing nursing practice at Haven House. This
work has been audited by our Advanced Clinical Volunteer Dr Ee Phui Kew and as a
result of the work we have decreased the patient journey from panel to first
assessment from 41 to 26 days, enabling the child or young person to access respite
care more quickly and efficiently.
 A project planning process was commenced with the Great Ormond Street Palliative
care team and Service Manager. We identified criteria for referral to clinic for annual
review and evaluation. The clinic began on April 16th 2015.
Planning Priority 3
To complete the National Institute for Health and Care Excellence (NICE) Medicines
Management in Care Homes guideline. This is to fulfil our obligations under the Health and
Social Care Act (2012) and the Francis and Berwick Reports.
8
To achieve this we:


Updated our Standard Operating Procedures for Medicines Management and
Controlled Drugs
Medicines concordance is included as part of the initial assessment and reassessment clinic with the Specialist Nurse Clinical Assessment (Nurse Prescriber)
Links to university
We provide a training placement for student nurses from Anglia Ruskin, Middlesex and
London South Bank Universities. Our Registered Children’s Nurses complete the mentorship
module to support the students through their placements at Haven House. This enables a
reciprocal arrangement for staff development with level 6 and 7 modules which our staff
undertake.
External training in the Holistic Care Centre
The Great Ormond Street Post-graduate foundation in Paediatric Palliative Care was held at
Haven House in November. The Nurse Practice Educator has been involved with Children’s
Hospices across London (CHaL) in the development of General Practitioner palliative care
training.
General Practitioners at the
Haven House palliative care
training day in association with
Great Ormond Street Hospital
Statement about research
The number of patients receiving NHS services provided or subcontracted by the hospice in
2014-15 that were recruited during that period to participate in research approved by
research this committee was nil.
Use of the Commissioning for Quality Improvement and Innovation (CQUIN) payment
framework
Hospice income was not conditional on achieving Quality Improvement and Innovation
(CQUIN) goals through the CQUIN payment framework because the lead Commissioner did
not request them.
9
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 2014-15.
CQC Summary of November 2014 online inspection report
Our regulators, the Care Quality Commission (CQC) visited us for an unannounced
inspection in December 2013. They found that we met all the standards they inspected and
haven’t visited Haven House since that inspection.
The Registered Manager completed the online Provider Information Return (PIR)
assessment in November 2014 within the time frame given. The CQC use the information
provided in the PIR to ask the provider whether the service is safe, effective, caring, well led;
any improvements they have identified that are needed and how the hospice plans to make
those improvements. When the CQC receive the PIR they use statistical tools and the
expertise of their intelligent monitoring staff to plan for inspections.
The hospice has not participated in any special reviews or investigations by the CQC during
2014-15.
Professional’s feedback – Specialist Nurse Practitioner at Barking, Havering and
Redbridge University Hospitals NHS Trust
“I was pleased to see how well supported the family were by your Care Team.
“The parents informed me they were overwhelmed by the level of practical and emotional
support offered to them and were grateful for all the help received in organising funeral
arrangements.
“I am pleased that mum is able to receive valuable post- bereavement support and that
she would be able to access a counselling service should she require it. From our
community nursing perspective, we found your service invaluable in helping to provide an
end of life service for this family at quite short notice.”
10
Part 3
Review of quality performance 1 April 2014 - 31 March 2015
Total number of children and young people
supported for all services
329 children and young people
Number of referrals ACT 1-4 received
45 new referrals
42 accepted
3 withdrawn
0 pending at end of year
% occupancy figures vs staffed capacity
87%
Young people in transition
19 young people aged 11 and over
Number of bereaved families supported
65
Haven House Children Originating Clinical
Commissioning Groups
Waltham Forest (144)
Redbridge (95)
Havering (26)
Barking and Dagenham (16)
Haringey (9)
City and Hackney (1)
Barnet (4)
West Essex (7)
Enfield (3)
Islington (20)
Newham (4)
There is no national minimum data set for children’s hospices.
11
Our services
Haven House is a children’s hospice located in Woodford Green which cares for children
aged 0 to their 19th birthday and provides support to their families through services in the
hospice and the local community. During the year we supported children and families from
Barking and Dagenham, Barnet, City and Hackney, Enfield, Haringey, Havering, Islington,
Redbridge, Waltham Forest, Newham and West Essex.
Since 2003, Haven House has been providing specialist care for children and young people
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.
Haven House has a Clinical Governance Committee and Board which has ensured that all
Policies, Procedures and Clinical Guidelines have been updated this year and cover all the
domains within CQC standards for registration of a children’s hospice. This includes the
safety of service provision, infection control, health and safety at work and safety and
suitability of the premises.
Life-limiting conditions
The acceptance criteria for our hospice services are based on the four broad categories of
life-limiting conditions described by the ‘Association for Children with Life-threatening or
Terminal conditions’ (ACT) (now Together for Short Lives).
Nursing Care
Care is a nurse-led service managed by the Director of Nursing. The Clinical Nurse Manager
manages the day to day operations.




The core team is made up of experienced Registered Paediatric Nurses, and
Health Care Support workers
General medical cover is provided 24 hours a day by a local General Practitioner
practice
Haven House has a service level agreement with access to telephone support for
24 hour and seven day cover by the Specialist Paediatric Palliative Care Team
from Great Ormond Street Hospital
All of our Care services are supported by the work of the Care Administration
team who help ensure smooth running by provision of the point of access for care
and the booking process for parents/carers.
Nursing palliative care
Our Care Team is led by specialist children’s nurses, with a qualified nurse on every shift
including night duty. A comprehensive review of the nursing establishment has been
completed this year following the Royal College of Nursing (RCN) national guidance. We
work closely with the consultants and specialist nurses from the Palliative Care Team and
Great Ormond Street Hospital who frequently visit to support our care services. 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.
12
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.
Compliment from a parent with a child who received respite care at Haven House
“I just wanted to say a huge ‘thank you’ to everyone. It was so lovely being around familiar
faces and surroundings, helping me grow in confidence with moving and handling my
daughter post-surgery. Your help and advice was invaluable. We are so fortunate as a
family to have access to such a fabulous facility.”
End of Life care
Haven House has a bereavement team led by a Specialist Nurse for Bereavement who will
manage the referral for end of life care through to death and beyond. This period of support
for the family and siblings will continue for up to two years or however long the family need
our support. Our Butterfly Suite has been planned as a private space for family and friends to
use to grieve in an appropriate and dignified environment before the funeral.
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.
Memory Day
This event is held once a year to remember all of our children and young people who have
died since the hospice opened in 2003.
Feedback from parent
“Well done for having this day every year. It is
a lovely day and gives us a chance to be with
other families who know how we feel.”
13
The Holistic Care Centre Services
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.
Compliment from a parent with a child who accessed the yoga service
“I feel my daughter has excelled during yoga. The strength in her legs has improved.
Denisa is a very hands-on teacher and picks up on any changes. I would highly
recommend the sessions.”
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.
Rejuvanessence with therapist
Anita Moses
Physiotherapy
Haven House has recognised the need for physiotherapy to maintain and/or improve joint
range of movement to minimise joint contractures in order to maximise function.
Physiotherapy can assist with postural management programmes to help manage a child’s
posture in specialist equipment to ensure they are comfortable in a sitting, lying, standing or
moving positions. These interventions will help to improve pain control and quality of life for
14
children and young people with long term conditions. Our Physiotherapist works currently six
hours per week on treatment clinics and will work with our GOSH consultants on assessment
clinics.
The future of the Holistic Care Centre and Care Closer to Home Clinics
Haven House is developing multi-disciplinary teams (including social worker and
physiotherapy) to wrap around and to support the groups of children and young people we
care for. We are using a shared care plan and patient record.
Our professional colleagues from the Specialist Palliative Care Team at GOSH have been
using the consultation rooms to offer care closer to home for children and young people.
These clinics commenced in April 2015.
This service is offered to patients on the end of life care pathway who may be new referrals
or existing patients and their parents/carers as outpatients.
This ensures that the child and family would not have to travel into the centre of London and
can continue their activities of daily living.
We also aim for our parents and service users to play a much more active role in their care
and treatment at Haven House, hence the continued development of the Expert Parent
programme in the Holistic Care Centre. This year’s programme has centred on the
importance of epilepsy training, education and empowerment of parents.
Support for parents/carers in our community
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
three months and Haven House offers a free delivery and collection service.
Feedback from a parent about the Toy Home Loan service
“Thanks to the toy home loan service at Haven House. My child gets to enjoy lots of
sensory experiences in the comfort of his own home. One of the best services we have
accessed in the eight years of having a child with cerebral palsy.”
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 health issues and needs of a brother or sister.
We have an active sibling support group running themed projects ranging from drama
workshops and media programmes to sports activities and music.
15
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.
What our staff say about the organisation
Staff Survey 2014-15
During 2014 Haven House staff were asked to take part in the Hospice Staff Survey. The
survey was run by Birdsong Charity consulting on behalf of Hospice UK.
53 staff completed the survey and below are some of the verbatim responses to the
questions
What is the best thing about working for your charity?
The following are verbatim comments received from staff:






















Families are at the centre of what we do and are supported on as many levels as
possible.
The care that we provide to children and families is outstanding and I'm proud to work
for Haven House.
Seeing our families first hand drives me to work harder and raise more money.
We have become a really strong organisation, all working towards the same goal - to
improve the lives of the families we support. The morale is really high among the
various teams & I'm really proud to work here.
As a small charity we can actually see where the money is being spent. The care
team continue to provide a caring and supportive environment to all our families and
children. It is also fantastic to see how the charity has grown in maturity over the past
few years.
The people I work with. I work with a great team where I am able to share difficulties
and help others.
I love working with people who aren't driven by money and want to put something
great back into the community, it is a rare commodity these days!
The high standard of compassionate care that families receive particularly when
children are cared for at end of life. We have an outstanding care team, a
hardworking income generation and marketing team and a passionate senior
management team.
Sharing in team successes is incredibly motivating
It gives me satisfaction that carers are receiving respite care from the demands of
looking after a life limited child and the child is in a comfortable, homely environment
with plenty to do including the outside area.
Making a difference to the families and children we care for.
The care that we give to the families that use the hospice.
If you could change one thing about working for your charity what would it be?


Legacy donations improve additional funds so it gives us greater flexibility to offer
more services to our children and families
I wish we could have a big sign in Woodford highlighting Haven House Children's
16



Hospice and raising awareness of where we are. It would make awareness levels rise
which would impact on our fundraising.
That we had more resources to provide more extensive care and services to the
families
It would be great to be able to offer more to families but we are limited due to funding
Better communication between departments
The friends and family test
98% of staff said that if a friend or relative needed treatment they would be happy with the
standard of care provided by Haven House
Employee Turnover and Retention
How many care staff do we employ?
We employed an average of 25 FTE staff
Care staff turnover
Employee turnover for Care staff in the
period was 16%
Haven House Organisational Learning Days 2014
The organisational learning days are now held twice a year and are an opportunity for all
staff to get to know members of the team who they don’t see all of the time.
A parent speaker is always asked to speak about their experience of using Haven House
and to quote one member of our staff ‘ this presentation really brings to the fore the reason
why we are all here and what we do and keeps the ‘vision’ of Haven House alive and fresh.’
Pictured: Bereavement Sister Noreen Stephens (seated) and Babs Keller Buddies CoOrdinator at the Haven House Organisational Learning Day April 2014
17
18