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Reaching out a hand of hope

HELEN House in Oxford was the world's first children's hospice and the inspiration behind setting up Hope House in Oswestry.

HELEN House in Oxford was the world's first children's hospice and the inspiration behind setting up Hope House in Oswestry.

It was to Helen House that Hope House vice chairman Sarah Kearsley-Wooller, of Old Colwyn, took her terminally-ill baby son Mathew.

His rare metabolic condition meant his body could not convert nutrition into energy and stopped him from growing. Mathew died in December, 1989, when he was only three years old. He weighed only 14lbs.

'It was a very, very demanding time,' said Mrs Kearsley-Wooller. 'We had to feed him with a bottle nine times every 24 hours. But it was not doing him any good because he didn't have a sucking reflex.'

Mathew was Jonathon and Sarah Kearsley-Wooller's second child and their other two children, Gemma and Katie, are now aged 18 and 12.

After Mathew' s death, Mrs Kearsley-Wooller set out to raise the £2m to build Hope House in Oswestry.

'We ran an appeal in 1991 and started out slowly,' she said. 'The funding came in and Hope House opened its doors for the first time in October, 1995.'

Hope House serves children who live in North Wales, Mid Wales, Cheshire and Shropshire.

A typical day in Hope House will see eight children receiving direct care, three sets of parents staying with a child on a first or second visit and, perhaps, five or six brothers or sisters accompanying the life-limited children through their first stay away from home. That's a lot of people.

Each child in its care can have a separate bedroom and up to five families can also have a bedroom of their own.

Mrs Kearsley-Wooller said: 'We look after terminally-ill children and carry out planned respite care. A terminally ill child is not expected to reach the age of 19.

'The idea was to offer a place so that parents could recharge their batteries; for them to have breathing space.

'Hope House has become a centre of excellence in the care of terminally-ill children. Earlier this year we looked at how we could develop the services of Hope House. It was decided to develop

SEVEN-year-old Amy Robinson is blind, disabled and needs 24-hour care. She has cerebral palsy, hydrocephalus (fluid on the brain which means that she has a shunt inserted) and severe learning difficulties.

Amy has to be administered daily with drugs because she suffers from convulsions.

She can't do anything for herself and needs help with everything from feeding to bathing. Her life expectancy is not high. Amy is a pretty little girl but also temperamental and screams a lot.

She lives at home in Sychdyn, near Mold, with her brother Mathew, six, who is fine, and parents Andrew and Maureen. They've been taking Amy to Hope House for the past four years.

According to Maureen, Hope House helps them to get on with life. She says: 'Caring for Amy is physically the small, community aspect of Hope House. The care is very much family led,' she said.

'The location is important,' she added, 'but whether to build a new unit or adapt an existing property is not yet decided and we are talking to the families at the moment.'

As with Hope House, the fundraisers want to raise £2m to fund the new Tundefined Gobaith yng Nghymru - Hope House in Wales.

Many of the families who use Hope House live in North Wales and have to travel 100 miles from Pen Llundefinedn, Anglesey or Mid Wales. For some children such a journey can cause unacceptable discomfort or distress.

Mrs Kearsley-Wooller said Hope House had sought to overcome these problems by giving families the choice of having care staff visit them at home.

The trustees have an additional aspiration for Hope House which is to develop stronger links with the Welsh community. Due to its location, Hope House has sometimes been perceived and mentally exhausting. Hope House gives us respite - a little time off - three or four nights once every three months, depending on availability. It gives is the chance to sleep as at times we have to get up seven times a night.

'The other thing it gives us is the chance to do normal things in life - simple things like shopping.'

Maureen can't praise the carers at Hope House too highly.

'They are fantastic. They go over and beyond their duty - they're like friends,' as an English organisation and some families may not have been using its services because of the lack of a Welsh identity.

Mrs Kearsley-Wooller said: 'We have always sought to meet the needs of Welsh families by employing Welshspeaking staff and producing literature in Welsh. Establishing a unit in North Wales with a stronger Welsh identity is a way of seeking to address this issue.'

One of the Welsh-speaking staff at Hope House, Oswestry, is deputy manager Ann Williams, who is originally from Betws Gwerfyl Goch, near Corwen.

'We have a lot of people on our books,' she said, 'and we are very near to our ceiling with around 250 families. I would say that around 30pc of our families come from Wales. The majority, or at least half, our staff are now able to speak Welsh, which is important. With every family, they are so grateful to be able to have a respite.

'With the new unit, we will be able

'Hope House is not just a caring environment. They also have a fantastic therapy pool. Amy doesn't get a lot of pleasure out of many things but simply adores the water. She also has music therapy and physiotherapy.'

Although it's only a journey of 25 miles from the Robinsons' home to Oswestry, Amy doesn't travel too well and it takes them 45 minutes.

The family welcomes the plan to extend the service on offer.

'With this unit in Wales, Hope House will be offering a service at home. Amy thrives at home. She likes continuity because of her condition. She has a specialist chair and has to be hoisted to her bath.

'What I'd like would be a weekend away. We need respite to keep us going. 'Sometimes I feel we couldn't have gone on without Hope House - it would have been too much to bear. Unfortunately, they don't have enough beds. This new unit in North Wales would give us breathing space.' to have more beds and be more flexible. Hope House has eight beds for children while the new unit will have up to five. We will be flexible with the staffing but if one family wants a carer to come out to them, it will be possible.

'We've got to have at least two children's nurses working on every shift and a sick children's nurse. We work nearly on a one-to-one basis but there's also group work and we have a therapist and social worker who is available to offer support to families.

'After a bereavement, for example, we don't cut ourselves off. We offer a lot of support.'

It costs more than a £1.5m to run Hope House each year. No charge is made to families for the service and it relies almost entirely on voluntary donations.

Among its patrons are the Earl of Powis, golfer Ian Woosnam, newsreader Martyn Lewis and North Wales's very own Bryn Terfel.


David Holmes
Chief News Reporter
David Norbury
Mike Fuller
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