By Jayne Dickens

*some names have been changed*

I started working for Rainbow Trust in September 2007 so I am celebrating my 15th anniversary this year. The families I have supported and currently support are all very different: they have different needs, the children’s conditions are varied, the families’ situations are diverse and living with childhood illness and the trauma and stress this may cause manifests in many contrasting ways.

Sometimes, there are also cultural, religious and language differences that we have to manage because we want to support every family that needs us in the way that works for them. We listen and help practically without judging. We are there when families who are going through immense pressures and difficulties need us the most.

I like to look after and comfort people and that is what makes caring for and supporting seriously ill children and their families so rewarding to me.

"You listen, you just care." Mum supported by Family Support Worker Jayne

NOAH is four years old with a heart condition and complex needs. Noah was born with his organs back to front and has just had major surgery which will hopefully see him into adulthood.

Noah’s mum, Clara, has some support from family and I mainly provide face to face emotional support, two hours every week. It is very stressful and isolating to have a child with such complex needs. Emotional support is mainly about listening rather than giving my opinions. I am a sounding board and can suggest techniques to cope with difficult situations, manage negative emotions and I can offer potential solutions that may help in some instances. Sometimes a cup of coffee or getting out of the house with somebody like me could be just what is needed to help keep everything together.

We also talk on the phone twice a week, usually for about half an hour, to discuss anything that may be worrying her, and I go to some hospital appointments with them too.

DANIEL very sadly died from cancer in 2018. He was 12 years old and I had been supporting the family since 2016, following his diagnosis. They needed practical and emotional support as, at the time, Daniel’s mum, Sandra, was pregnant with her third child.

Both Sandra and her husband Ryan gave up work when Daniel was diagnosed. Ryan did most of the driving to and from their home in Brighton and the Royal Marsden Hospital in London. Because Sandra doesn’t drive, I took Daniel when Ryan was not able to.

I used to go to the house and spend time with Sandra giving her emotional support and helping with household chores whilst Daniel went to London for treatment.

Six months after the funeral Sandra told me that she would like to have a stone and plaque for Daniel’s grave. Ryan found this very difficult to cope with so I went with Sandra to the stonemasons to organise the delivery and unveiling.

I now pick Sandra up from home every month and take her to the cemetery to tend his grave. We used to do this every week but this is less frequent now that she is better able to cope. Sandra has no gardening tools so, when we go, I take mine. While we tend the grave we talk about her feelings, her grief and about when Daniel was alive. I know she gets a lot of comfort from these visits.

For some of the families that we support they feel that medical professionals become almost like a second family to them. And yet, after the death of their child
this medical provision stops immediately because it is no longer needed. This can be very difficult for families, who suddenly feel they have nobody to go to who knew their child and their situation.

"You’re the only professional that is still with us and that means the world to me." Sandra, mum to Daniel

I have been supporting CAITLIN’S family since March. Caitlin is 10 years old and is being treated for a severe heart condition at the Evelina London Children’s Hospital.

Caitlin and her mum, Andrea, had a whole day of appointments at Great Osmond Street Hospital (GOSH), involving lots of tests, meetings and check-ups to see if she is eligible for a heart transplant.

I drove them to this appointment, leaving home at 5am to pick them up at 6am. Whilst I drove, I listened to Andrea, who was very concerned about what was going to happen at the appointment. We arrived 20 minutes early which allowed me to show her around and try to make her feel more at ease.

Caitlin is scared about what’s going to happen, she knows her heart is not working well. Andrea is very upset because Caitlin may not be able to have a transplant. They both need support to be able to cope with this very traumatic situation.

"I’m scared Jayne, I’m scared." Andrea, mum to Caitlin

BEN, six years old, had a brain tumour and his mum, Corina, needed support. She was heavily pregnant and Ben was having treatment in Southampton Hospital. I
used to take Ben there for treatment accompanied by his dad. Whilst Ben was having treatment, Corina gave birth to baby Ava in the same hospital. Sadly, Ben’s
treatment was unsuccessful and when Ava was only weeks old he died.

Some weeks after the funeral Corina was really struggling so she now has professional bereavement counselling from the hospice where Ben died. I look after Ava and her three-year-old sister, Lily, whilst Corina goes to these appointments. I try to arrive at their house at least half an hour early so if Corina needs to she can talk to me before she goes so that she can better organise her thoughts and priorities for her counselling session.

POPPY is two years old and had cancer. It damaged one of her kidneys which had to be removed and Poppy needs dialysis at hospital four times a week.

All of the London and South East Care team is involved in transport support for Poppy once a week to help Poppy’s mum. She is a single parent who doesn’t drive and also has two sons to look after, one six and the other nine years old.

Two people need to be in the car at any one time: one to drive and one to sit with Poppy. She is being treated at GOSH which is a three hour round trip and starts with Poppy being picked up at 6am.

I cover a large geographic area which includes East and West Sussex so I have to plan every week carefully to make the most of my time supporting families. This means in a week I could be in Hastings, Bexhill on Sea, Worthing, Hove, Ewell, our Leatherhead office for our team meeting and the Royal Marsden or GOSH in London.

Some days are very rewarding: a family may have positive news, or I can see that my help is really making a difference. It may even be that a family doesn’t need me anymore, which is always lovely because it means that they are doing well and able to cope. But some days can be very challenging. You can’t close the door and forget about what families are facing whilst living with their child’s illness. I am a keen gardener and my garden is my sanctuary; gardening is my coping mechanism.

As Family Support Workers we are provided with specialist supervision from a professional external counsellor once a month. Of course, I can access this
support more often if needed. Seeing the counsellor is really good. They ask about my caseload, anything I would like to talk about in particular, how I am in general, and offer advice if I need it.

I also have monthly supervision with my manager and, once a week, we have a team meeting, where we share and support other team members. Being a Rainbow Trust Family Support Worker is a wonderful and very rewarding job.