Haven House Children's Hospice

Welcome

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' in which we care for children and families throughout their lives.

A children's hospice is 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 look at Our Services to get a fuller picture of all that we do.

Vision and Values

Haven House was founded on the vision and passion of Sue Irwin (see The Founder). Since 2003 we have been supporting children with life-limiting illnesses and their families in Central and North East London and West Essex.

We work with families from many ethnic minority communities and value people of all faiths and none. We recognize that everyone has 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 dignified and compassionate.

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 continuing 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.

Our Founder

Sue Irwin 1937 - 2008
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.

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.

Sue, a committed Christian, and a woman of faith, prayed about her concerns. The more she prayed, the more she realized that God was calling her to set up a provision to care for sick children and their families in our local area.

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.

In January 1999 Sue suffered two severe strokes which made the fulfillment of her vision even more challenging but she was not deterred. 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.

Sue's husband, John, her three sons, Matthew, Marc and Ben and their families remain stalwart supporters of all that the Hospice continues to do.

The Trustees

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

Freda Ball
Freda trained in fashion and specialized in Couture garment making before joining a leading Fashion House. She then entered into retail management and for several years managed a Ladies Fashion and accessories shop.

After obtaining a teacher training qualification, Freda taught dressmaking and ladies tailoring to adults with mixed abilities. Subsequently Freda 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 looks after children with special needs.

Sue Hyett
After an early career in retailing, Sue trained as a teacher and specialised in early years' education. Sue currently works in a nursery and developed her interest in Haven House after learning of the role the Hospice plays in the community and Sue was delighted to be appointed as a Trustee in 2007.

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

Christine Mansell
Chris retired from health visiting in 2001. As a founder trustee and Sue's friend and prayer partner she has had the privilege of sharing Sue's vision from the very beginning. She is totally committed to the work of Haven House and the provision of care we offer to our children and their families.

The Patrons

Colonel Alan Hall, Deputy Lieutenant for Redbridge

Cyril Dennis MBE

Eleanor Laing, MP for Epping Forest

Gary Lucy

Glen Murphy

Iain Duncan-Smith, MP for Woodford & Chingford

Mike Gapes, MP for Ilford South

Patsy Palmer

Rabbi Maurice Michaels

Ray Winstone

The Rt Reverend Thomas McMahon, Bishop of Brentwood

Vicki Michelle

Ambassadors

Councillor Loraine Sladden chose Haven House as one of her charities when she was Mayor of Redbridge from 2008-2009. She raised the magnificent sum of £50,000 for our work which helped to refurbish our bathroom, Butterfly Suite and family accommodation. She is continuing to support Haven House as our first Ambassador.

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, a house built in 1906 in woodland 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 children 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.

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 5 bedrooms, a bereavement suite and family room, family accommodation, a spa bathroom, a craft room, a sensory room and spacious living areas. Outside there is a specialist play area for disabled children and many acres of woodland. Please click here for a virtual tour of The White House and its grounds.

Haven House continues to develop its services to life-limited children, their parents and carers, and their brothers and sisters. See Our Services for more details.

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