EACH reaches out to families of children battling severe illness

NOTHING can be more heart-wrenching for a family than watching their child battle a life-threatening illness.

Many families across the region experiencing such distress in their lives have been grateful for the care and support offered by East Anglia's Children's Hospices (EACH).

Now the charity's Quidenham hospice has had a major boost with the opening of a new £390,000 family unit enabling it to give a very personalised service to families whose children are facing their last days of life.

The new project was made possible after EACH acquired a building adjacent to its existing hospice and was able to relocate its office space, creating new meeting areas for families and care specialists and freeing up rooms in its main house.

The lion's share of the cost was funded through trusts, a legacy and a grant from Norfolk County Council's Short Break Pathfinder.

Children who come to the hospice for day care, short-term care breaks or when they are nearing the end of life, are suffering from serious health defects at birth or conditions such as terminal cancers, complicated cystic fibrosis or muscular dystrophy which means it is unlikely they will reach adulthood.

In addition to the physical and psychological impact on the child, the knock-on effect on the rest of the family can be severe.

Parents feel emotionally and physically worn out as they try to stay strong for their child, their own relationships can suffer and it can be hard to make informed decisions about their child's care when they are upset.

Brothers and sisters can also struggle with their feelings sometimes feel sidelined as their parents focus on their ill child.

The hospice centres its care on the whole family with an holistic approach, providing its services either at Quidenham or out in the community where it visits families in their own homes.

In June, it launched a new 24/7 on-call palliative care service to offer a high level of specialist nursing advice, pain relief and symptom control for children at home.

In addition to its high quality nursing care, EACH also runs groups for parents, brothers and sisters, grandparents and other people close to the child, and gives ongoing support to bereaved families for up to three years after they have lost a child.

For example, the sibling support groups give children the opportunity to meet and talk to other youngsters in a similar situation and have some fun time out as well.

The hospice's specialist staff – nurses, local doctors, care assistants, family support practitioners, play specialists, music therapists, physiotherapists, occupational therapists and an information and library specialist – are by far its biggest cost and EACH needs to raise £4 million in donations each year to run its three hospices at Quidenham, Milton, near Cambridge, and Ipswich.

The Quidenham hospice first opened its doors in a former country farmhouse in the grounds of a south Norfolk Carmelite monastery in 1991. The lovely old building has a tranquil and homely atmosphere.

"It's perfect for the way we work," Simon Hempsall, marketing and communications manager, said.

"A hospice is a home from home, as opposed to the clinical environment of a hospital.

"Our staff don't wear uniforms and parents meet every quarter to help us with the development of our service, so it is geared to their needs."

Quidenham takes children from babies up to 18-year-olds and is open around the clock, 364 days a year. Last year it helped 144 sick children and provided support for 199 families.

The opening of its new facility will enable it to expand that care and support, creating two new bedrooms for children to take its total to six.

The additional bedroom space has also enabled the hospice to redecorate to meet the specific needs of smaller children and teenagers, including IT access in the bedrooms.

A soft play room for children with limited mobility and a new music therapy room have also been created, while the new self-contained family area, with its suite of rooms, gives individual families the space and privacy to be with their child as they near the end of their life.

With bedrooms, private bathroom and living room space, extended family members, friends and even teachers can visit in the last few weeks to say their goodbyes and parents can also care for their child's body immediately after death and leading up to the funeral.

"We work around what the families need," Mr Hempsall said. "The hospice provides an environment they know and are comfortable in."

As costs for care provision continue to rise, ongoing support from the public, local businesses and schools is vital for EACH.

Anyone wishing to donate can do so by shopping in the charity's 11 stores, including at Diss and Long Stratton, or by giving good quality items for sale, which can now be gift-aided.

There are lots of fundraising ideas too on the charity's website and there is also a Diss Friends Group which raises in the region of £25,000 a year for the Quidenham Hospice with a full programme of events.

More information about East Anglia's Children's Hospices can be obtained by logging on to www. each.org.uk

This article originally appeared in the Diss Express on 4 October 2010 and is reproduced here by kind permission of the publisher

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