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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.

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 PalfremanChief Executive

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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

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

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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 well-established 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.

Haven House funding 1 April 2014 to 31 March 2015* 4

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

£827k

Local Authority income £35kFundraising income £2908kRetail income £178kInvestment income £10kTotal income £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.

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Quarterly performance targets agreed with the North East London CSU commissioners

Organise patient parents/carers survey or feedback AnnuallyThe number of incidents that have been reported to the National Reporting and Learning Service

Quarterly

Serious incidents, clinical incidents, never events and other requirements. Including medicines management

Quarterly

Duty of Candour

This applies to patient safety incidents that result in moderate or severe harm or death and that are reported to local risk management systems

Quarterly

Staff turnover rates QuarterlySickness levels QuarterlyReport on specific safeguarding issues and number of protection cases

Safeguarding alert/concern we have received

Quarterly

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

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Patient Safety - Number of clinical incidents/accidents at Haven House from 1 April

2014 to 31 March 2015

Haven House uses Lloyds Pharmacyfor dispensing medication for respite care.

Number of medication incidents:-DispensingPrescribingTranscribingProcedural

Total number of medicationincidents is 45

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Number of Controlled Drugs incidents Total number of controlled drugs incidents is 0

Number of Accidents:Clinical

Total number of accidents is 1

Number of Clinical Incidents Total number of clinical incidents is 26

Number of safeguarding incidents reported by the hospice

Total number of safeguarding incidents reported is 0

Infection Prevention and Control ratesTotal number of children contracting infection at hospice was 0

Total number of children admitted with a known infection was 0

Complaints made to the hospice 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.

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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.

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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 re-assessment 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.

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.

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General Practitioners at the Haven House palliative care training day in association with Great Ormond Street Hospital

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.

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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.”

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 referrals42 accepted3 withdrawn0 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 Commission-ing 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.

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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.Stepped discharge from hospital to home

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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.

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.

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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.”

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.”

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.

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.

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

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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.”

Rejuvanessence with therapist Anita Moses

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.

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.

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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.”

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'sHospice and raising awareness of where we are. It would make awareness levels rise which would impact on our fundraising.

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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 Co-Ordinator at the Haven House Organisational Learning Day April 2014

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