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Roald Dahl's Marvellous Children's Charity helps children with chronic blood conditions

15/10/2018
This article is more than five years old.

Since April 2018, there has been a dedicated nurse for children suffering from non-cancerous blood disorders, such as Sickle Cell disease, Thalassaemia or other red cell conditions, based at Oxford Children's Hospital.

Lesley McCarthy is a Roald Dahl nurse specialising in non-malignant haematology. Her role is to support the child and family throughout the child’s journey from diagnosis and through the transition into adult services.

Children with symptoms (such as bruising easily or a low blood cells count) are referred to her via the Haematology consultant, but sometimes a referral comes from other sources such as via the Emergency Department, their GP or another hospital.

Roald Dahl Nurse Lesley mainly deals with children suffering from Sickle Cell Anaemia which is an inherited condition. Parents are often told about their child's condition shortly after birth, or even before. From that point, Lesley comes into their life.

Lesley said: "At the beginning parents experience upset and anxiety of having to deal with a condition that may be life-limiting. My role is to provide as much information and advice as possible, in addition to emotional support, to help them accept their child's condition.

"There is sometimes a three-month period between the diagnosis and the first visit to a consultant and I can provide support and be a point of contact. This immediate response helps them feel more empowered in dealing with their child's disease."

Roald Dahl's Marvellous Children's Charity provides over 70 specialist nurses who are funded by the charity to support 21,000 seriously ill children across the UK.

Lesley looks after 140 children across the Thames Valley and each of their parents has her telephone number and email address to contact her with any concern.

She usually meets the children at the outpatient clinic. However, many of these patients are regularly admitted to hospital too. When this happens, Lesley goes to check on them and can participate in their clinical care, monitoring results and looking at the medications, she is also a friendly face providing support.

Non-medical support is a significant part of Lesley's work too.

Lesley explained: "The aim of my job is to empower children to be independent. As they grow and develop I am there to help them learn about their condition so that they are able to manage it when they become adults."

This education role is not limited to the patient. Lesley often also works with the child's school to help them address any possible special requirements the child may have.

Consultant Paediatric Haematologist at the Children's Hospital, Dr Amrana Qureshi, said: "Lesley has enhanced our service enormously as she provides the key community support that patients and their families need. She allows holistic care and support to be delivered to all these patients with a chronic condition, which is what they really want and deserve."

During her first six months at the Children's Hospital, Lesley has seen many families becoming more and more confident in dealing with the children's long-term conditions. "The biggest reward for me is to see their life improving outside the hospital."

Children with non-malignant haematology diseases can also be referred to Lesley to get her additional support and their families are encouraged to make contact with her through their GPs.