Haven House Children's Hospice

Haven House is a happy place that deals with hard events and realities in people’s lives. We are not a place where a child simply comes to die, but a ‘home from home’ environment in which we care for children and families throughout their lives.

A children’s hospice is then a place where a child comes to live life as fully as they are able and we are privileged to be a part of this experience.

A life limited child may live for a number of years and our intention is to recognise the value and preciousness of this time together as we support the family over the child’s life time. Please read the section on Services we Offer to get a fuller picture of all that we do.

Mission Statement: As a Christian foundation we value people of all faiths and none. We recognise that all people have physical, emotional and spiritual needs and seek to ensure that children with life limiting and life-threatening conditions can live life as fully as they are able. We will always seek to ensure that any experience of end of life care is expressed within a dignified and compassionate manner.

Our Commitment is to embrace healing even when there is no cure.

Our Belief: When a child has a life limiting or terminal illness, medicine is not simply enough. Children need families to support and love them from the time of diagnosis. Families need on-going and compassionate support during the child’s lifetime and after their death.

Our Vision: To ensure that life limited children and their families receive compassionate and appropriate medical, emotional, and spiritual support.

The Founder
Sue Irwin was a woman of passion and vision who realized a dream on behalf of many hundreds of families of children with life-limiting and life-threatening conditions when she founded the Haven House Children’s Hospice. It is with great sadness that we announce her untimely death on Sunday, 6th April 2008.

Sue had a wide range of experience working with children; she was a registered general nurse, a registered midwife and a health visitor. It was while she was working as a health visitor in Dagenham in the early 1990s that she became aware of the need for a local children’s hospice. In particular she worked closely with a young boy, Gary who had severe disabilities. Sue recognised that he and his mother needed respite from the rigorous demands of care that were placed on them. There was nowhere close to home that could offer this kind of support.

With passion and commitment Sue pursued a dream to provide an environment that could offer dignity and care to both children and young people and their families. She realised the isolation that resulted from caring for a child with a life limiting or life-threatening condition and sought to provide a place of beauty and tranquillity that could offer professional support for all the family.

Despite a number of debilitating strokes which made the fulfilment of her vision even more challenging, Sue was not deterred from her path. Sue was able to see Haven House emerge as a place of excellence serving children in North East London and surrounding boroughs. Haven House remains grateful for the love and care that she showed right up until her final days.

“It is difficult to know how to adequately sum up Sue’s life as she was someone of great inner strength and determination. It is fitting then simply to remember her as a woman of Faith who had a vision and a commitment to see it through on behalf of people less fortunate than her. It is on this basis that Haven House will remember her and celebrate all that she gave and the vision which will continue long after her death” said Jeremy Todd, Chief Executive of Haven House.

Our condolences go to Sue’s husband John, who was and remains a stalwart supporter of all that we do within the Hospice and her three sons, Matthew, Mark and Ben and their families. Sue will be greatly missed as a wife, mother, grandmother and friend.

The Trustees

Ian Sparks OBE
Originally trained as a social worker, Ian has a broad range of experience across services for families and children and was Chief Executive of The Children's Society from 1986 to 2002. More recently he has been playing a key role in developing family and child care systems within a number of Eastern European countries. Ian is also a trustee with a number of youth charities.

Rob Smith (Treasurer)

Freda Ball
I trained in fashion and specialised in Couture garment making before joining a leading Fashion House.

I then entered into retail management and for several years managed a Ladies Fashion and accessories shop.

I then obtained teacher training qualifications and taught dressmaking and ladies tailoring to adults with mixed abilities.

Subsequently I joined the London Docklands Development Corporation to increase advertising revenue for their publication Dockland News.

Ros Edwards
Ros’s retail experience at Marks & Spencer was gained in the press office and advertising, as product advertising coordinator. This role included local and national advertising, national fashion show tours and budget control. She presently is part of the All Saint’s Church team that look after children with special needs.

Sue Hyett
After an early career in retailing, I trained as a teacher and have specialised in early years education. I am currently working in a nursery. My interest in Haven House developed after I learnt of its role in the community, and I was pleased to be appointed a trustee last year.

Scott Jackson

Clare Jayaraj
After training as a Registered General Nurse at St. Bartholomew's Hospital, London in 1989, Clare worked in a number of London hospitals specialising in respiratory medicine. Since 1998 Clare has worked in healthcare recruitment currently organising and managing the care for adults and children with continuing healthcare needs.

Dr Sam Jayaraj
Sam is a local Consultant Ear, Nose and Throat Surgeon and cares for patients in both the NHS (Whipps Cross University Hospital) and private sectors.

His areas of unique expertise in ENT include paediatric ENT and his special experience looking after children was gained at Great Ormond Street Hospital.

Christine Mansell

Joady Mitchell
As a children’s nurse my role involves supporting care at Haven House, working with the CEO, Director of Care and care staff about Joady Mitchell – Trustee clinical governance, professional issues and strategic development. This includes maintaining high quality care for children and families, and supporting staff development.

The Patrons

Glen Murphy

Vicki Michelle

Ray Winstone

Patsy Palmer

Cyril Dennis MBE

Rabbi Maurice Michaels

The Rt Reverend Thomas McMahon, Bishop of Brentwood

Eleanor Laing, MP for Epping Forest

Colonel Alan Hall, Deputy Lieutenant for Redbridge

Mike Gapes, MP for Ilford South

Iain Duncan-Smith, MP for Woodford & Chingford

Our History

The Haven House Foundation was set up in 1995 to develop a centre of excellence to meet the needs of families of children with life-limiting and life-threatening conditions. It was recognised that these families faced huge emotional and physical demands with little support. This centre would provide short breaks for the children, thus giving respite to their carers, and would also provide end of life care at the appropriate time.

In 2000 the lease was secured on The White House in Woodford Green and the building was refurbished to meet the high standards that would be required to care for the complex needs of the childiren who would be using the service. At the same time it was important to achieve a homely environment and to retain the character of the building.

In 2001 Haven House was able to open its first service, Home Loan, providing specialist toys and equipment to families with life-limited children in their own homes.

In 2003 Haven House became involved in a partneship with three other voluntary organisations and local Primary Care Trusts to deliver play services to children in their own homes.

The first four bedrooms and living areas were completed by August 2003 and Haven House was then able to take its first child The remaining rooms were completed by the end of 2004. The building now contains 6 bedrooms, a bereavement suite, family accomodation and spacious living areas. Please click here for a virtual tour of The White House and its grounds.

Haven House continues to develop its services, offering a range of support for the family, including the Buddies groups for siblings, family events, counselling support and coffee mornings. As well as plans to further develop community services, Haven House is working towards a provision of respite care for families in their own homes. It is also working in partnership with the two other children's hospices serving the London area, raising awareness of the service,and seeking to ensure that the needs of families of children with complex requirements are met.

Children’s Hospices UK

"Children’s Hospices UK is the national voice for children's hospice services and the children and families they care for. We strive to ensure that the estimated 20,000 life-limited children in the UK, and their families, have access to the unique range of services children's hospices provide."

http://www.childhospice.org.uk

Association for Children with a Life-Threatening or Terminal Conditions

"ACT is the first and only organisation in the UK concerned with the needs of all children with life-shortening conditions and their families, regardless of the particular diseases involved. Haven House, along with other hospices for children, is a member of ACT. ACT, in consultation with the membership, publicly launched the Charter for Children with Life-Threatening Conditions and Their Families in June 1993."

http://www.act.org.uk

Hospice Information

"Hospice Information is a joint venture between St. Christopher's Hospice and Help the Hospices. It brings together the experience and established reputation for high quality of the Hospice Information Service at St. Christopher's and the national remit and innovative information developments of Help the Hospices. Together, we want to provide a world-class information service for health professionals and members of
the public, on UK and international hospice and palliative care."

http://www.hospiceinformation.info

Help the Hospices

"Help the Hospices is the national charity for the hospice movement, founded in 1984 by Anne, Duchess of Norfolk."

http://www.helpthehospices.org.uk

Lifelites

This web-based resource provides information on the lifelites project, which aims to improve the quality of life for children with life-limiting illnesses, through the use of information technology.

http://www.lifelites.org

CHARITIES AND SUPPORT GROUP FOR PARTICULAR CONDITIONS

Cancerbackup

Europe's leading cancer information charity, with over 4,500 pages of up-to-date cancer information, practical advice and support for cancer patients, their families and carers.

http://www.cancerbacup.org.uk

Kids Health

KidsHealth provides families with accurate, up-to-date, and jargon-free health information they can use.

http://www.kidshealth.org

Clic Sargent

Clic Sargent supports families with children suffering from cancer or leukaemia.

http://www.clic.org.uk/

The Muscular Dystrophy Campaign

The Muscular Dystrophy Campaign is the only UK charity focusing on all muscular dystrophies and allied disorders. It has pioneered the search for treatments and cures for over 40 years and provides practical, medical and emotional support to people affected by the condition.

http://www.muscular-dystrophy.org/

The Jennifer Trust for Spinal Muscular Atrophy

The Mission of the Jennifer Trust for Spinal Muscular Atrophy (JTSMA) is to be there for everyone affected by or involved with Spinal Muscular Atrophy (SMA), providing support and information, and investing in research. The JTSMA is the only British organisation dedicated to providing support, care, information and the funding of research into SMA.

http://www.jtsma.org.uk/

Batten Disease Family Association

The Batten Disease Family Association (BDFA) was created in 1998 to support and help families, carers and professionals, who have contact with a child with Batten disease.

http://www.bdfa-uk.org.uk/index.htm

British Heart Foundation

For help and support with conditions relating to the heart.

http://www.bhf.org.uk/index.asp

Contact a Family - Directory of Specific Conditions and Rare Disorders

The Contact a Family Directory Online has lots of information on specific conditions and rare disorders in children and young people.

http://www.cafamily.org.uk/Idx/m.html

HEALTH AND PUBLIC SERVICES

Caring About Carers

This website from the Department of Health provides details about services or benefits affecting carers.

http://www.carers.gov.uk/

DirectGov

This government site brings together information on public services, and includes sections health services, caring for a child or adult and disability.

http://www.direct.gov.uk/CaringForSomeone/fs/en

The Royal Association for Disability and Rehabilitation

RADAR is an organisation campaigning for better lifestyles for disabled people and their families.

http://www.radar.org.uk/RANE/Templates/frontpage.asp?lHeaderID=2

NHS Direct

NHS Direct has a wealth of information about illnesses and conditions and also links to other organisations.

http://www.nhsdirect.nhs.uk

OTHER CHARITIES

Contact a Family

Contact a Family is the only UK-wide charity providing advice, information and support to the parents of all disabled children - no matter what their health condition. They also enable parents to get in contact with other families, both on a local and national basis.

http://www.cafamily.org.uk/index.html

Whizz-Kidz

Whizz-Kidz provides specialised mobility transport for children, as well as training, information and advice to change the lives of disabled children.

http://www.whizz-kidz.org.uk/Page.asp

The Child Bereavement Trust

This organisation works to help bereaved families.

http://www.childbereavement.org.uk

OTHER CHILDREN'S HOSPICES

Acorns

West Midlands

http://www.acorns.org.uk

Bluebell Wood Children's Hospice

Doncaster

http://www.bluebellwood.org

Butterwick

Stockton-on-Tees

http://www.butterwick.org.uk

Children's Hospice Association Scotland

Rachel House, Kinross Robin House, Balloch

http://www.chas.org.uk

Chase

South East England

http://www.chasecare.org.uk

Chestnut Tree House

Worthing, Sussex

http://www.chestnut-tree-house.org.uk

Children's Hospice South West

South West England

http://www.chsw.co.uk

Claire House

Merseyside

http://www.claire-house.org.uk

Demelza House

South East England

http://www.demelzahouse.org

Derian House

Preston, Lancashire

http://www.derianhouse.org.uk

East Anglia's Children's Hospices

Quidenham (Norfolk), Milton (Cambs) and Ipswich (Suffolk)

http://www.each.org.uk

Eden Valley Children's Hospice

Carlisle

http://www.eden-valley-hospice.co.uk

Ellenor Foundation

Kent

http://www.ellenorfoundation.org

Francis House

Manchester

http://www.francishouse.org.uk

Haven House Foundation

Woodford Green, Essex

http://www.havenhouse.org.uk

Helen & Douglas House

Oxford

http://www.helenanddouglas.org.uk

Hope House Children's Hospices

Hope House in Oswestry and Ty Gobaith in Conwy.

http://www.hopehouse.org.uk

Iain Rennie Hospice at Home

Hertfordshire

http://www.irhh.org

Julia's House

Dorset

http://www.julias-house.org

Keech Cottage

Luton

http://www.pasque.org

Little Haven

South End, Essex

http://www.seech.org.uk

Martin House

Wetherby, Leeds

http://www.martinhouse.org.uk

Naomi House

Nr Winchester, Hampshire

http://www.naomihouse.org.uk

Northern Ireland Children's Hospice

Horizon House is in Newtownabbey.

http://www.nihospice.com

Rainbows

Loughborough

http://www.rainbows.co.uk

Richard House

East London

http://www.richardhouse.org.uk

St Andrew's Children's Hospice Unit

Lincolnshire, Hull and East Riding

http://www.standrewshospice.com

St Oswalds

Newcastle

http://www.st-oswalds.org

The Donna Louise Trust

Staffordshire and South Cheshire

http://www.donnalouisetrust.org

The Shooting Star Children's Hospice

Hampton, Middlesex

http://www.shootingstar.org.uk

Ty Hafan

Cardiff

http://www.tyhafan.org