Hospital Transport for Terminally Ill Children

by Rainbow Trust Children's Charity
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Francesca with Nicki at home
Francesca with Nicki at home

When Francesca was less than a year old, doctors discovered a cancerous tumour in her cheek.

The tumour is wrapped around the optic nerve and main artery to the brain so cannot be completely removed. In addition to the cancer Francesca also suffers from a rare neurological condition that prevents her from being able to smile, eat properly or speak clearly. 

Francesca's family were referred to Rainbow Trust mid-way through Francesca’s chemotherapy. They met Family Support Worker Nicki who immediately started supporting them when they needed her. Her mum, Liz says, “Nicki helps a lot with the hospital appointments. She drives us both there and also spends time with us when we are in hospital. Francesca is often not allowed to eat or drink when she is in hospital and as she needs someone with her at all times, that means I can’t eat or drink when I am around her as it’s not fair. Having Nicki there means I can pop off for half an hour and have a coffee or something to eat, knowing that someone Francesca knows and trusts is still there with her.

“Nicki is always there for us, taking the stress out of the day and entertaining Francesca whilst I talk to the various consultants. Even if we don’t have hospital visits, Nicki comes to see us each week to play, chat and keep us company. She also spends time with our older daughter Imogen when she is not at school Without Rainbow Trust and the support they have given to us, we would have never got through the past five years.”

Things have been hard for the family. Francesca couldn’t go to nursery because her treatment meant that she was unable to fight infection and even a common cold would be life threatening , Liz was therefore not able to go back to work. They had to sell their house as they could no longer afford the mortgage on one salary. Liz says, “We’re taking it in our stride. Cancer is not discriminatory, it can affect anyone. We worked hard to get where we were and although we’ve had to take a step back to where we started on the property ladder, it can be considerably worse for some families”.

Family Support Worker Nicki has been ever present through the past few years. Liz says, “It’s difficult to quantify that kind of help, it’s so very important. We really notice it when Nicki isn’t around.”

Last year Rainbow Trust provided 6,566 hours of hospital support, helping to organise appointments, explaining illnesses and treatment, looking after siblings, staying with sick children and supporting families in neonatal units.

Steve and Michael do battle on the chess board
Steve and Michael do battle on the chess board

Michael was just seven years old when he was diagnosed with a kidney disorder. For the foreseeable future, Michael has to have dialysis three times a week. 

Each dialysis treatment lasts four hours, not including travel time and time spent finding a parking space at the hospital. On those days, Michael's mum can’t pick his sister up from school or see her in the evening, because she is at hospital with Michael. 

Rainbow Trust has helped the family by introducing them to Family Support Worker, Steve, who takes Michael to hospital for some of his treatments, and stays with him throughout, bringing him home afterward. This gives mum Claire a chance to spend quality time with little sister Charlotte.

“It’s important because Charlotte feels left out. But this gives us a good amount of time together, not just five minutes in between hospital appointments,” says Claire.

Michael, who smiles constantly and chats to everyone on the ward, says he enjoys being with Steve. “In the car we chat about school and how I’m feeling and then in hospital we play chess, although he always wins!” Michael told me.

Every one of our Rainbow Trust families has a different set of needs, and our Family Support Workers are there to ensure that they receive the help that will benefit them most. Our transport support enables families to make the most of every day together.  

Since Rainbow Trust provides support to families at home and in hospital, each Family Support Worker is given an adapted car to provide a safe way for sick children and their families to travel to and from hospitals and clinical appointments.

The sliding doors make it great for access and one of my mums loves our car particularly because she is able to tube feed her daughter whilst we are travelling using the little tray on the back seat - she always remarks on the space!  The cars are big enough to transport our resources for home support, and also fit wheelchairs / buggies / equipment in. One of my families has a son who is very unsteady on his feet - the sliding door and level seat was really good for taking him out.

Claire, Family Support Worker

Many of the children we support use wheelchairs, so it is not always possible for families to use their own cars to get around. In fact, some families don’t own a car and so they would normally have to rely on public transport. This isn’t ideal, especially if the child is prone to infection, for example during a course of chemotherapy.

By driving the family to hospital, our Family Support Workers also enable families to spend time together. Mum or Dad can play with or talk to the children without distraction – this is especially important if the child is worried about their treatment or needs some one-to-one time to talk about what is going to happen at their appointment.

Family Support Workers also provide transport support to siblings so that they can be collected from school or go to their favourite after-school clubs, even if Mum and Dad are at the hospital with a brother or sister.

Often, transportation support enables one parent to stay in work and support the family, which can be difficult if a child is in hospital or receiving regular treatment. 

Harvey and Anna
Harvey and Anna

Three year old Harvey has spent two years of his life undergoing chemotherapy. Anna, his mum, had a normal pregnancy and birth so thought nothing of the blister-like mark on Harvey’s knee. Sadly, when he was just three months old, tests and scans revealed that it was a cancerous tumour.

Harvey started an aggressive eight month course of chemotherapy and had times where his white blood cells were so low that he was prone to the slightest infection so taking Harvey to appointments in London via train and tube was harrowing for Anna and Andy, Harvey’s dad. Anna said, “I remember being in a lift at a station, with Harvey in the sling and being squashed. I just felt it was so wrong for him having all these people so close to him when he had nothing to fight with.”

The family was referred to Rainbow Trust just after Harvey’s diagnosis. Anna was struggling with transport to the weekly hospital appointments. She had tried catching the train and tube but felt it wasn’t safe for Harvey. She had also tried driving up but the journey was so stressful and taking a coach was just as difficult as the trains.

Jayne, a Rainbow Trust Family Support Worker from the Surrey care team, started supporting the family and took Anna and Harvey to his appointments up in London. She’d spend the day with them while they waited for treatment. “Some days we’d wait five or six hours for his treatment and on a few occasions, I burst into tears when they told us we’d need to wait even longer. The pressure just got too much but Jayne helped so much by being there. I could moan to her and get it out as I’m one of those people that needs to talk,” says Anna.

Andy is self-employed so when he was helping with trips to the hospital he lost out on income so Jayne’s transport support has made a huge difference to the family. It also means he knows that Anna and Harvey are safe and won’t be any more stressed that they have to be. Jayne also spends time with Anna talking through any concerns and issues.

“The practical support was so helpful. You can’t underestimate how stressful the day can be. After waiting all day for treatment, Harvey would be feeling poorly so the whole day was exhausting. Without Rainbow Trust, “we would have got through but it would have so much more stressful,” says Anna. Anna said, “You can’t take the [Rainbow Trust’s] support for granted. I find it hard to ask for help but Jayne has been brilliant and a huge help.”

Here is a short report from one of our Family Support workers that highlights how important providing transport for our families is.

 

I am working with a family who have a 14 year old boy undergoing treatment for leukaemia and has his bloods checked at his local hospital.  Recently the family got a call to say he urgently needed a transfusion and could he be in Great Ormond Street Hospital at 8 am the next morning.

Mum rang our 24 hour helpline and asked for help as her car had broken down and hospital transport could not be arranged at such short notice.  I arranged to pick them up at 6 am the next morning to take them to GOSH and stay with them until the transfusion was done.   We finally left for home at 9.30 pm that night.

 Without Rainbow Trust’s transport this boys urgent transfusion would have been delayed and put his recovery at risk.

 

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Organization Information

Rainbow Trust Children's Charity

Location: Leatherhead, Surrey - United Kingdom
Website: http:/​/​www.rainbowtrust.org.uk
Project Leader:
Jenny-Anne Dexter
Leatherhead, United Kingdom

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