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Terminally ill young to spend last moments at home

TERMINALLY ill young people are to be given the option to receive end-of-life care in their own homes under a new partnership between two Scottish charities.

SUPPORT: Kim and David Johnstone would have preferred for their daughter Leah to have passed away peacefully in her own room.
SUPPORT: Kim and David Johnstone would have preferred for their daughter Leah to have passed away peacefully in her own room.

The service for young people over the age of 16 is designed to avoid the situation faced by many families where youngsters die in unfamiliar beds on hospital wards.

It will also help tackle the ­problems faced by the Children's Hospice Association Scotland (Chas), which announced in May it was having to set an age limit on its services.

The decision was made as increases in survival rates for youngsters with conditions once thought certain to cause them to die in childhood had left the charity working with 100 families whose children are now over 21.

The facilities in Rachel House and Robin House, the organisation's two hospices, were increasingly inappropriate for young adults, Chas said.

With the launch of the Rest Assured Home Service, jointly run by Chas and Marie Curie Nursing Service, young people over 16 who currently receive services from Chas will be offered end-of-life care in their own homes.

Project manager Harry Bunch said: "All the figures show that far more people would want to die at home than do so at the present time.

"Many young people die in beds in hospitals when they would rather be at home - it is often the best option.

"By working with community nursing teams and Chas we aim to deliver a coordinated package of care."

The service will be initially open to young people and their families who are already working with Chas.

Not everyone will need it, Mr Bunch said. He added: "Some people would want the end to come in a hospital or hospice, but we want to provide the options for young adults so that they have the same choices of end of life care we would want everyone to have.

"We see this as very much the start of a partnership with Chas."

The service has been welcomed by one family whose daughter died in May 2011.

When Leah Johnstone, of Leuchars, Fife, died aged 17, her mother Kim had to fight to stop her being taken to hospital.

Instead, she persuaded a ­reluctant ambulance crew to take Leah to Rachel House, the Chas hospice in Kinross, where she died later the same day.

Mrs Johnstone said: "The ambulance team wanted to take her to a hospital to save her, but I felt 'what are you bringing her back for?'."

They had been through a ­similar situation previously where Leah, who suffered from a rare chromosomal disorder, had been resuscitated and placed on a ventilator. It left her with a reduced quality of life, needing round the clock care, and she was severely ill for a year.

Leah was severely epileptic, suffering up to 200 seizures a day. Her spine was twisted, and she regularly suffered from pneumonia.

When she reached Rachel House, Leah's passing was ­peaceful and her mother and father David were with her at the end.

Despite being full of praise for the service provided by Chas at the hospice, Mrs Johnstone said it would have been better if Leah had been able to die at home.

She said: "That is what we had wanted, but there would have been an inquest and the police would have been involved. It was a big fear. Leah loved her room and though she couldn't speak I'm sure she would rather have been there. If the support to let that happen is there it will be immense for families."

The chance to die at home can make it easier for friends or family to be there to say their last goodbyes as well, Mrs Johnstone said.

She added: "By the time we ­realised Leah was coming to the end we didn't have time to phone or for people to get to Kinross. We were lucky to have 17 years, but when the time came I wanted to let Leah go to sleep peacefully."

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