We first heard about Rainbow Trust through our community nursing team at our local hospital. Cleo was just three months old and we were preparing for her second open heart surgery when we were introduced to Nicki Phelan, our Family Support Worker. She started visiting us just before Cleo’s second operation so Nicki spent time getting to know Cleo.
Nicki spent time with us, helping me out at home and getting to know all the family. She’s never looked after Cleo while I’ve slept or anything, we’ve always enjoyed activities together. She and Bo get on really well, Bo really likes her. It’s good that Nicki can spend that time with her. She sometimes collects Bo from school as well if Cleo is having a bad day.
Nicki helps us with hospital visits. The stress of going to those meetings, knowing what your child will be put through and how stressed she will be is so difficult. The journey to the hospital is always so worrying - it’s great to be able to share that with someone. Rupert is self-employed so any time he takes off work means lost income for us. And, someone needs to be at home for Bo. Having Nicki support us means that he can continue working, and I don’t have to go to appointments by myself, and Bo is still looked after.
I don’t think people understand the logistical problems of taking a child to a hospital appointment. You’re thinking about routes and traffic jams and parking tickets and at the same time, you’re thinking of what you’re going to ask the doctor when you’re there and how you’re going to get your toddler to sit still during an assessment or treatment. Nicki comes to all appointments with me. She’s there when Cleo needs blood taking, she sits with her and calms her down and also listens when doctors are talking about Cleo’s condition. Because I’m so close to it, it’s good to have a third party there, you can perhaps be a little more objective when she’s listening.
I was made redundant when I was on maternity leave so finance is a major issue for us. I can’t really go back to work when I’ve got a child with complex health needs in the same way I worked before. The reality is you do need more money when your child is sick. For example our heating bills are massive because we’ve got to make sure Cleo is warm enough. She has bad circulation so we don’t want her using energy and losing weight trying to keep warm.
Besides practical support at appointments and with Bo, Nicki’s also there with me when things just get on top of me. She’ll sit with me and just be there when I’m crying. She’s there to just give me a hug when I need one. The weeks before Cleo’s last operation were really tough – Nicki and I would just sit in the kitchen together and talk things through. As much as she could, she emotionally prepared me for whatever might happen. Each time your child has an operation you worry that she might die. You need someone to talk to, who knows that, so you don’t need to keep saying it.
Before each operation, it’s harder. Now that she’s older and has such a great personality, the thought of losing her is so much harder. This little person who brightens my day, I love her company – we are so inextricably intertwined. I am her protector and her crutch and I love her to bits.
Rainbow Trust makes life easier by us knowing that there’s someone there who can help you practically and emotionally when times get tough. Knowing that someone else is there who you can turn to.
Nicki and I get on so well, we’ve really clicked. We’ve known Nicki three years now, and the whole family love her. It’s good for me to know when Nicki picks Bo up from school, that Bo is looking forward to seeing her and doesn’t feel like she’s being left with someone she doesn’t like. She’s been a constant during most of Cleo’s life. We’ve built a really good relationship with her. Few people have been there with us every step of the way but Nicki has seen that 360 degree view of our life and she understands and I know that our conversations are confidential and that means so much to me.
Before Cleo’s third operation, we thought we were going to lose her so I wanted her christened and since then I have been attending church. I have found comfort and support in the community. It’s given me some peace and fulfilled a spiritual need within me.
Nicki makes me laugh when I need to and supports me when I need to cry. When you’re living with a very sick child you need someone like that in your life.
For Jo, accepting her lot in life is her way of coping. She knows that none of us have any control over our lives. When asked what she missed, she said, “There’s nothing I miss, I’d rather have Rex [her still born child] back for one day. Focusing on Cleo and making sure she has the best possible life is a massive job in itself. It’s changed me, it’s focusing on a simple life and what that means to us.”
You’ve got to have hope. I am continually hoping that things are positive for Cleo.
The following report from one of our family support workers shows what a difference being able to transport our families to and from hospital appointments makes to them.
My support for Karen and her family sometimes involves transporting the family to and from the hospital for appointments. On this particular day, I was visiting Karen in hospital, she was an inpatient and had been admitted with an infection. Karen is 12 months post heart transplant and has to be monitored during any infection.
She had been in hospital for a week. Dad informed me that Karen was being discharged that afternoon. He told me that he could phone mum who would have to get Karen’s sister ready before coming to pick them up (mum and sister have cardiomyopathy) and would take a while before they could come to collect them.
I advised dad that I had two other visits but if he wanted transport home, I could take them on my way to my next visit. Dad was very appreciative and accepted my offer.
On the journey home, dad was able to discuss concerns about his partner and daughters condition. I enabled him to talk and I listened.
This shows how Family Support Worker’s can be flexible with the support they can offer families. This support meant that the family were home within half an hour of being discharged instead of hours waiting for hospital transport or Karen’s mother.
It also allowed mum to relax and not rush to leave the house. Both her and Karen’s sister were able to be at home, waiting for Karen and dad’s long awaited return home
Not long ago Rainbow Trust’s Family Support Worker, Val, had to reschedule appointments due to changes in several family circumstances. Instead of visiting two families in their homes as was originally planned, she rearranged to provide support in the hospitals where the children were receiving treatment. All was going well, in fact too well as both children had finished their treatment by lunchtime and were on their way home, leaving Val with the rather appealing option of going home a little earlier than usual.
Being Val though, she decided to pop in and say hello to Danny who was an inpatient in the hospital. Danny’s immune system was so low that he had spent the last year in hospital due to his susceptibility to pick up infections and viruses which were potentially life threatening. (His body had no natural way of fighting off the infections).
For Danny it was frustrating because as soon as he was feeling better, his hopes of being discharged would be short lived as, within days, he was being readmitted with another infection, with the prospect of another six weeks in the same bed, in the same ward, feeling the same as countless times before. Equally if not more so frustrating was the fact that he and the family were continually being told that despite all the tests in the world, no-one could actually diagnose what it was that was stopping his body from building an immune system. So for Danny it meant that the same pattern was likely to continue for as along as ‘don’t know’ was the answer to his questions.
To cut a long story short, Danny underwent a Bone Marrow Transplant, and six weeks on, his body seemed to be starting to build an immune system. Every time his immune level went up by even 0.1, for Danny it was a step in the right direction - it was getting closer to the 5.0 he needed to be safe enough to leave for home.
Just at the very moment Val popped in to say an impromptu hello, the consultant also walked in to the ward and said that provided Danny had a safe way of travelling home [the family don’t have a car and would have had to use public transport which was not deemed safe for him] he could pack his bags.
Danny jumped up, pointed at Val, and shouted ‘Val is my transport!’
Within minutes Danny was pulling off monitor leads, packing his bags and telling nurses to hurry up with the medicines he needed to take home with him, whilst his mother was so thankful to Val for deciding to say hello instead of going home early. Mother and son were driven home by Val; they knocked on the front door of their home which was opened by an unsuspecting father and sister, followed by a moment’s disbelief, then absolute delight and hugs all round because their son was, at last, home.
Sometimes, not always, but sometimes a Family Support Worker is in just the right place, just at the right time!
Thanks to your generosity, Rainbow Trust Children's Charity were able to provide the following in 2013.
1,368 Families supported around the Country.
882,000 miles driven by our Family Support Workers to homes, hospitals and schools - almost the equivalent to driving to the moon and back TWICE !
3,273 hours of Sibling Support, mainaining school attendance, arts & crafts, cinema trips, days out at the zoo, fun and laughter.
10,749 hours of home support, including emotional support, respite, countless meals cooked, baths run and story books read.
6,804 hours of helping to organise appointments, explaining illnesses and treatment, looking after siblings and staying with sick children.
851 hours of bereavement support for the entire family, face to face and over the phone, at any time of the day or night.
Please help Rainbow Trust to support even more families who have a child with a life threatening illness in 2014.
The following case study shows the ways that support is given, how the type of support can change depending on the situation and how the relationship between a family and their Family Support Worker can develop, sometimes in a short space of time.
A TIME LINE OF FAMILY SUPPORT WORK
I first met Sophie’s family in hospital where she was receiving chemotherapy and within two months of her diagnosis of osteosarcoma (a rare type of bone cancer).
I listened as the parents safely and honestly expressed their mixed emotions of anger and frustration, together with their concerns (particularly as they considered there had been a delay in obtaining a diagnosis). Being able to voice these feeling/thoughts helped them to process and start to come to terms with the turmoil in their lives and it was humbling to realise they had been able to do this within the first hour of my introduction.
It soon became clear about the additional difficulties they were experiencing - both non drivers, managing two other children (one school age, one preschool age), main treatment being at a hospital some miles from home, serious financial restraints - all this together with the understandable disbelief of the situation they and their previously very healthy daughter were now in.
Initially, my support was to co-ordinate my visits between hospital and their home. Sophie’s dad was resident at hospital with Sophie for many weeks but it was important for the family to have opportunities to be together as much as possible and also for the parents to have ‘time out’ together. During this period I spent time getting to know Sophie and her siblings - giving them individual attention with games, crafts and activities or just watching DVDs together.
It was then planned for Sophie to have major surgery to remove part of her hip and thigh bone, at another hospital even further away, so I remained with Sophie at hospital on the day her parents travelled to London for an in depth pre-surgery consultation, maintaining telephone support with the parents throughout the day.
Since Sophie’s diagnosis it became clear that the family’s accommodation was totally unsuitable for her needs, her father had to carry her up a flight of stairs to their council flat and once inside, space was limited and would not be suitable for wheelchair access. This situation became more urgent once the date of surgery was known and my support was given by liaising with the Occupational Therapist to encourage to ‘keep things moving’.
During the time that Sophie was in London for her surgery the family were allocated suitable accommodation, Dad returned home and it was my privilege to take him to the new
address to start preparations for the relocation.
By this stage I had been supporting the family for two months.
Sophie’s intensive treatment was continuous between her local hospital and the specialist oncology ward for the next four months and the strain of the family being split (mum remained resident in hospital with Sophie) was taking its toll on them all.
My support during this period was varied, depending on the priority needs of family members at any one time, for example:
About two months later, Sophie’s parents were given the devastating news that her cancer was spreading in spite of the chemotherapy treatment and there may be the possibility of more surgery. Extra emotional support was necessary at this stage and it later followed that I upheld the parents’ wishes for Sophie to continue as normal life for a child of her age as possible; so in the following months I spent quality time with Sophie and her siblings on outings, art and games activities including taking family on a couple of trips to animal shelters as they had promised Sophie a dog on completion of her chemotherapy!
As Sophie was attending school part time and her brother was also a pupil at the same school, support to the staff was given by close liaison and joint meetings (including parents and multi disciplinary staff) to ensure maintaining a consistent way of handling the situation and avoiding inappropriate information being shared with the close local community.
After about three months of keeping life as normal as possible the parents were then informed that there were no other treatment options and that there was only a short prognosis of time. Again emotional support was increased particularly at this time as the parents experienced mixed feelings of shock, disbelief, anger, failure, fear and hopelessness and were in need of much reassurance and encouragement.
I worked alongside the family, helping - by listening to their thoughts/feelings, acknowledging their fluctuating emotions and in particular one poignant shopping trip was with Sophie’s parents and grandmother when we were looking for Christmas decorations, the parents having realised this would be Sophie’s last Christmas and they naturally wanted to make it extra special not only for Sophie but for their memories too.
L-R: Siblings Ben, Emily with Sophie taken a month before she died
It was three weeks after Christmas that one morning I received a phone call from the school (the result of close liaison) advising me that the family wanted my help as Sophie had been admitted as an emergency to hospital after collapsing at school just an hour earlier. I was able to initially speak to Sophie’s siblings in that phone call to give them reassurance and tell them I would see them later in the day.
I then made contact with the family and confirmed care provision for the siblings and arranged to meet Sophie’s parents at the hospital.
Due to Sophie’s sudden deterioration my support changed to ‘end of life care’ and arrangements were hastily made with the hospital at the parents request to return Sophie home where she could remain with her family.
Sophie’s father and I went on ahead to prepare and bring Sophie’s bed down to the living room and collect the siblings from a relative. This was all completed in time for Sophie’s return by ambulance. As she was on high medication and very very sleepy I prepared the siblings on how she would be and encouraged them to still speak to her as they would normally – Sophie’s parents also appreciated knowing this as they were afraid, shocked and unaware of what to expect.
I remained with the family until late and offering to support them overnight but as they became more in control of the situation I left arranging to contact them in the morning.
This contact came much sooner however and was made by Sophie’s father through Rainbow Trust’s 24-hour telephone service to inform me that Sophie had passed away. When I returned the call he was naturally very upset and shocked and told me that Sophie had died about an hour previously and he did not know what to do or what to tell the children, I responded by encouraging him to ensure the family have this precious time with Sophie, no need to rush anything and I would visit straight away to help them.
That day I remained with the family all day and the support given covered a full range of emotional and practical issues:
At the family’s request and based on their needs my support over the following ten days involved daily visits and included helping with registering the death and close liaison with the funeral director on behalf of the family. I also accompanied the family during a visit to see Sophie in the Chapel of Rest and prepared the siblings about what to expect at the funeral and attend the funeral.
Support then continued as bereavement support, beginning with regular weekly visits encouraging the parents to:
Visits were then given fortnightly and practical issues were addressed, in particular the financial difficulties then being faced due to a large reduction in benefits and debts from the extra expenditure incurred giving Sophie a good Christmas. With the parent’s permission I liaised with a Community CAB worker who then frequently visited the family and negotiated on their behalf which has led to some feeling of stability for the parents.
Support has continued with intermittent visits and phone calls especially when Sophie’s birthday anniversary approached some three months after her death and arrangements were made then to mark the occasion.
Bereavement support will continue with visits as necessary, both for the parents and the siblings, together with telephone calls and in particular support will especially be given at Christmas and the anniversary of Sophie’s death
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