Family of lung-swap boy may lose home (From Bradford Telegraph and Argus)

Family of lung-swap boy may lose home

6:35am Tuesday 20th May 2008 in

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The family of a teenage cystic fibrosis sufferer who needs round-the-clock care are at risk of losing their home as they cannot now afford their mortgage payments.

Harrison Smith's mum Joann McQuillan says their future looks bleak unless the Government does more to help carers in crisis like them.

Joann and her partner Joe Smith, of Larch Drive, Odsal, Bradford, cannot work as they have to spend all their time looking after Harrison, 15, who underwent a lung transplant at Great Ormond Street Children's Hospital last year.

Now they are contacting their MP, Gerry Sutcliffe, in their campaign to get more Government support for people in similar situations and they also have the backing of Carers UK, a charity which is lobbying hard for a new National Strategy for Carers.

But Government proposals, due to be announced next month, might be too late to help Harrison's family. Their mortgage provider, Alliance & Leicester, has twice deferred their payments but it is not a long-term solution, says Joann.

She cannot work because she is a full-time carer for Harrison. Joe also had to give up work as an electrician to help provide the care he needs.

The family suffered another setback after their insurance company refused to pay out after Harrison's transplant last November.

They took out the policy when Harrison went on the transplant list to cover the mortgage just in case Joe had to give up work but when it happened, the policy was classed as void because the insurers said he had "voluntarily" given his job up. At the insistence of Mr Smith, the company is now investigating its decision.

"He had no choice. He had to give up work because he never knew when we would need him. It made it impossible for him to work. We didn't consider it as voluntarily at all but the insurance firm did," said Joann.

The family has to pay an £850 mortgage each month but are living off benefits, making it hard for them to pay what they owe on the house.

Harrison has also just been diagnosed as diabetic needing insulin every day, his eyesight and hearing are also failing because of past medication.

"It's hard times. Family and friends are good but we can't keep relying on them for help. The mortgage company has deferred payments but we'll have to try to catch up sometime - it's very difficult," said Joann.

"There should be more help out there for families like us who have sick children. We are under enough stresses and strains as it is, without having to worry about losing the roof over our heads."

Mr Sutcliffe said he would be happy to look at the family's circumstances to see what can be done to support them to maximise their benefits, making sure they are claiming all they can.

Imedla Redmond, who is chief executive of Carers UK, said Harrison's situation was "tragically common".

She said: "I'm afraid it's not unusual at all. Disabled children often need medical intervention that can put the whole family into crisis. Just transport arrangements and hospital appointments alone can cost lots of money and affect work patterns."

She added: "We have high levels of unemployment and poverty in families caring for sick children which is why the Government needs to come up with a new benefits system that takes their needs into account.

"The jury is out on whether the proposals for the new strategy will give us what we want."

Carers UK believes carers' contribution to society can be estimated to be worth £87 billion to society, as well as a new benefits system they want to see professionals working together so communication is improved and information does not have to be continually repeated by the carer, taking up families' precious time.

It also wants more opportunities for disabled children taking part in and getting to and from holiday and after-school activities.

Mrs Redmond said: "This wouldn't just help Harrison's family, it would help all 777,000 families who have disabled children in the UK."

To find out more about Carers UK visit carersuk.org