THE birth of a child is one of the most joyous events parents experience. But when a new born arrives it is not always a completely happy occasion – some children are born with conditions or develop conditions which will affect them and their families for life.

Discovering that your child has a serious and sometimes life-limiting condition is a daunting prospect for any parent. And looking after them at home can present particular challenges.

The Worcestershire Health and Care NHS Trust provides a specialist at home service for acutely sick children to help prevent them being admitted to hospital and support their families.

Known as Orchard Service, it comprises a Community Children’s Nursing Team with experienced children’s trained nurses who visit acutely sick children at home and a Support for Families Team offering emotional, psychological and social support as well as practical advice.

Orchard Service is currently involved with around 250 children and their families in Worcestershire and works closely with health visitors, school health nurses, midwives, hospital doctors and nurses, GPs as well as social care, education and voluntary agencies.

The service is split into two district and the nursing team leader for the South Worcestershire and Wyre Forest area Gail Jackson, who has worked in the service for 15 years, said: “We started off as a hospital at home service providing help for children with acute medical conditions.

“We are trying to prevent illness and prevent hospital admission and we also empower families to look after themselves. A lot of what we do is teach and help families so they can recognise things really early and get in touch with their GP.

“The children spend enough time in hospital so the more we can help them to stay out of hospital, so that they can have as normal a life as possible, the better.”

She added: “The children we look after have acute illnesses like a chest infection or eczema infection - they can be babies who have been in hospital and now need help at home.

“The chronic conditions can be severe cerebral palsy and children’s cancers. They can be children who have life threatening conditions or life limiting conditions where they won’t survive past 18.

“There are also children who depend on technology such as suction, because they have a lot of secretions, or oxygen or children who are fed through a tube down the nose or directly into the stomach.”

Lots of the children involved with Orchard Service will go onto adult care, such as the district nurses, or will be discharged. But the aim is to help them stay at home and enjoy as normal a life as possible.

“We do a lot of training for parents and other carers like grandparents, aunts and uncles. We work closely with special schools and Acorns children’s hospice and other respite centres.”

CASE STUDIES

Sarah and Lee Freeman’s son Noah was born in 2012 with half a heart. He was in Birmingham Children’s Hospital for his first five weeks and then referred to Orchard Service when he came home to Dines Green in Worcester.

The couple have two other children and Sarah was full of praise for the team of nurses and support workers who visit them.

Sarah said: “The nurses from Orchard Service can come out if Noah is not feeling great. They can check his stats and weight and give him a general check over. It has been a great help. They have always had a lot of input. If we are not sure about something, it reassures us.

“We see these people quite regularly and it would be a big strain if we did not have them. They are amazing. If hospitals need chasing up for appointments and information and test results, they chase them up.”

She added that the play specialist Sian Jackson from the Support and Families Team also works with Noah, his older brother Riley and the family generally.

Sarah said: “Sian started coming about 18 months ago. She has been working with Riley to explain to him about Noah’s heart condition. She does games and demonstrations to explain how the blood pumps around the body. He is learning all about the body.

“She can talk to him about anything that is worrying him that he does not want to tell us about. He does take a lot from it. He has a better understanding of Noah’s condition and she uses play to support Riley emotionally.

“Noah is starting school in September. She is going to do some work with him when he starts school and is working with the school about when Noah is poorly.”

Another family benefiting from Orchard Services is the Calder family from Stourport. Lucy Calder, aged nine, was diagnosed with arthritis when she was just three years old. She also has uveitis – a painful eye condition.

Lucy has injections at home and is seen by Orchard Service nurses and play specialist Sian. Her mum Mandy said the injections were so painful that Lucy simply shut down.

“Sian came to see her and she was fantastic. She got her to write down what would help her. Lucy is very comfortable with her and would talk to her without us which she preferred sometimes.

“It does affect everybody in the family one way or another. Lucy has an older brother and sometimes we haven’t been able to do things with him. It affects him in different ways. I do not know what we would have done without them.”

Mandy added that Lucy goes to regular appointments for specialist treatment at Birmingham Children’s Hospital, which puts a strain on the family.

“Orchard Services have been such a help with her and they are fantastic and are so friendly. They ring me to see how she is getting on and there is a really high level of care. They are interested and they are always on the end of the phone. I would not have coped without them. They are amazing.”

Malvern mum Steina Castledine has twin daughters Agatha and Beatrix who were born early. While Agatha was fine, Beatrix struggled to breath and when she came home from hospital the Orchard Service nurses were there to help.

“When we first came home with her, she was really ill and she would get a cough and we would not know what to do. It was nerve-racking.

“I do not know how I would have felt if they had not been there. We can rely on the staff at Orchard Service. They are great.”

Sophie Purcell’s seven year-old son Gabriel has a chronic condition which has an impact on him at home and at school. The Orchard Service nursing team has given support at home and at school so that Gabriel gets what he needs to make sure his life is as normal as possible.

Sophie said: “Without their involvement within school, it could have affected our relationship with the school and Gabriel’s education. But it has remained very positive. The Orchard Service staff have seen it all before but you have not experienced it before. With them there it is that support and the focusing on what has been achieved. They have just been so good with school.”

Orchard Service also arranges social events where families can get together and meet in an informal relaxed atmosphere while enjoying a social occasion.

Steina said: “We have been to a few social events with other parents and children using the service. It is nice to meet other parents. Other parents understand.”

For more information about Orchard Service visit http://www.hacw.nhs.uk/our-services/childrens-community-health-services/orchard-service/