Children's hospice care for emotional and physical challenges

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What is a children’s hospice service?

It’s every parent’s worst nightmare to be told their child will die before them. But for an estimated 25,000 families across the UK, this is a reality.

Some of these children will die when they’re very young; others will deteriorate slowly over a number of years. In most cases, full-time care falls to the parents – 24 hours a day, seven days a week.

Not surprisingly, the whole family is under huge emotional, physical and sometimes financial strain.

Children’s hospice services help children and families in these situations with the emotional and physical challenges they face, helping them to make the most of life. They welcome the whole family for a break in a home-from-home environment or support them in the comfort of their own home.

They also offer a diverse range of other services including symptom control, end-of-life care, the provision of therapies (such as play, art and music therapy) and bereavement support for all family members.

There are 41 children's hospices across the UK. Each service is an independent charity which relies on public support to continue their work.

CHASE hospice care for children

Across South West London, Surrey and Sussex, CHASE supports families with children and teenagers not expected to live to reach their 19th birthday.

CHASE supports these families in their own homes and communities and at their children’s hospice, Christopher’s.

Dedicated help is given, starting immediately after diagnosis and continuing through to bereavement and beyond. This is a journey that can last a number of years.

CHASE is a children’s charity that relies almost entirely on donations and fundraising. This support allows CHASE to offer nursing, practical, and emotional support to help families make the very best of their time together, however long that might be.

How CHASE began

The CHASE story began in 1990, when an article appeared in a national newspaper which described how a despairing family with a life-limited child had been helped by a children’s hospice service in Birmingham.

This inspired a mother of young children, living in South West London, to make a contribution, and from here came the impetus and the enthusiasm to create CHASE hospice care for children.

The need for CHASE was evident: there was no comparable service covering South West London, Surrey, or West Sussex. In this area it was estimated there were some 600 families with life-limited children – youngsters who were unlikely to live beyond the age of nineteen.

On 13th November 1994 CHASE, the Children’s Hospice Association for the South East, was officially registered as a charity.

Recognising the needs of families with life-limited children.

Since its inception, the services and policy of CHASE have been driven by research-based evidence focused on the needs of children and families.

This is why the focus at CHASE has always been on supporting families in their own homes and communities: the CHASE Community Care Team actually began working with families in 1999, two years before the official opening of Christopher’s children’s hospice.

More recently, research from CHASE was featured in the 2009 Blakes Parliamentary Yearbook. In this guide, Dr Antoinette Maria Menezes PhD, MSc, RGN talks about her five-year doctoral study which underlines the reality of CHASE commitment in this field.

Antoinette was employed by CHASE in 1998 to clarify the need for a children’s hospice service in this area and establish vital contacts in medical and social services. In 2003 the Health Foundation awarded Antoinette a ‘Research Training Fellowship’, enabling her to conduct a doctoral study through Southampton University.

In her report Antoinette explains that the aim was to explore the experiences of children suffering from a range of life-limiting conditions; many rare and degenerative. Participants included eleven children, their parents and siblings from ten families – 39 in all. Little was known about the long-term needs of life-limited children, as existing research focused on end of life care and bereavement support, so the voices of children and families were at the centre of the study.
Antoinette has now returned to work at CHASE as Lead for Quality and Research.

Raising funds to sustain the service

The CHASE service is provided 365 days of the year at no cost to the families themselves.

CHASE needs to raise £4 million every year to ensure this vital service continues. That’s £11,000.00 a day.

Many people take part in sponsored challenges for CHASE, putting themselves through tough but ultimately rewarding experiences to raise vital funds to keep the CHASE service running.

Others organise their own fundraising events, and have a lot of fun both planning and attending them. Companies like to get involved too, and donations from Trusts, Legacies, and gifts in memory are other examples of how to support CHASE.

Of course, supporters can also make valuable donations through the website at http://www.chasecare.org.uk.

For more information about CHASE please visit www.chasecare.org.uk and for more about the research featured in the 2009 Blakes Parliamentary Yearbook please visit http://www.parliamentaryyearbook.co.uk/chase-hospice-care-for-children-editorial.html

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