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Children's hospital appoints ‘unique’ specialist nurses

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Two new rare disease service nurses, whose roles have been developed with the help of patients, have been appointed by Birmingham Children’s Hospital.

Two “unique” nurses have joined Birmingham Children’s Hospital NHS Foundation Trust thanks to funding from the Roald Dahl’s Marvellous Children’s Charity.

“It’s been exciting to work so closely with our children and their loved ones”

Larissa Kerecuk

The roles of Kate Penny-Thomas, Roald Dahl rare disease nurse, and Sian Bicker, Roald Dahl genetics nurse, are the first of their kind to be shaped by children and their families, said the charity.

It said they had been involved in “every step” of the process, including interviews, where applicants were questioned by a panel of parents who also made the final decision on who to recruit.

The trust’s specialist rare disease service treats more than 9,000 patients from across the country, with around 500 different conditions.

Dr Larissa Kerecuk, the trust’s rare disease lead, said: “We’ve been absolutely delighted to work with Roald Dahl’s Marvellous Children’s Charity, whose kind support has allowed us to welcome our two fantastic new nurses to our team.

Birmingham Children’s Hospital NHS Foundation Trust

Birmingham trust appoints ‘unique’ specialist nurses

Source: Peter van den Berg

“It’s been exciting to work so closely with our children and their loved ones, who’ve been with us every step of the way in shaping the roles,” she said.

“We know the care and support that Kate and Sian will give will really make a huge difference because of the unique input from our young people and families,” said Dr Kerecuk.

Ms Penny-Thomas’ role includes supporting children and families with diagnosed rare diseases and co-ordinating their care. The post also means important new clinics in specific conditions, such as tuberous sclerosis, are now able to be set up thanks to the specialist nursing input.

Meanwhile, Ms Bicker will be working on the pioneering 100,000 Genome Project, which the trust is supporting by recruiting young people with a rare disease but without a genetic diagnosis.

So far, more than 170 children have been recruited to the ground-breaking study, which is aiming to develop a new genomic medicine service in the NHS.

In addition, she will also be supporting those with conditions without a firm diagnosis and is working on setting up the country’s first SWAN (Syndrome without a Name) clinics by the end of April.

Sophie Dziwinski, the charity’s senior programmes manager, said: “We’re delighted to be able to welcome Sian and Kate to the nationwide network of Roald Dahl nurses. There is a real need for the specialist care they can provide for so many seriously ill children with rare and undiagnosed diseases.”

Both nurses will eventually be based within the trust’s new rare diseases centre, a facility that is planned to open in late 2017 if fundraising is successful.

More than 150 young people and their relatives, treated by the specialist rare disease service, joined Felicity Dahl, widow of the late-children’s author, at a special event on 27 February to meet the two new nurses, who took up their posts in January.

Birmingham Children’s Hospital NHS Foundation Trust

Birmingham trust appoints ‘unique’ specialist nurses

Source: Peter van den Berg

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