Rainbow Trust supports families like the Khans. Daughter Anisah was diagnosed with bone cancer when she was nine years old. Rainbow Trust Family Support Worker Linda has supported Anisah's brother Ismael and four sisters Sameena, Maryam, Humayra and Zahra through Anisah's chemotherapy treatment and life changing operation to remove the tumour from her leg.
Her parents Zafar and Sarfraz explain the difference Rainbow Trust makes to their large family.
"The cancer wasn't just Anisah's illness, it affected the whole family. Every one of us has changed as a result of the experience. Rainbow helped us go through this ordeal as a family, together and stay as strong as possible.
"All of Anisah's siblings help with her care. They go to hospital appointments with her and help support her around the house. Her older sisters have been especially busy with her care over the holidays, putting her to bed during the day if she feels tired and making sure she is never alone in case she faints or falls. We know it impacts on their social lives but we need their help to look after Anisah.
"Anisah's sister Maryam has just finished her A-levels, but she hasn't done as well as we thought she would. Maryam used to love college and she was predicted really high results and wanted to be a pharmacist. The stress and emotion of Anisah's illness meant that she didn't want to go to classes and struggled to concentrate on college work. She's so close to Anisah, and struggled to deal with what was happening to her and what could happen in the future. She'd sit in the library day after day, not knowing what to do. She needed our help and support and because we were away at the hospital with Anisah, we just weren't there for her.
"Linda provides the best kind of support for Maryam and Anisah's brother and sisters, she laughs with them and takes their minds off what is going on for a couple of hours. She listens to any concerns they have. Linda is just trustworthy. We're always wary of talking to outsiders about Anisah and what we're going through but both of us and the children feel very comfortable talking to Linda."
Anthony was admitted to hospital urgently, needing brain scans and a number of emergency operations to remove part of a brain tumor. This operation did not go as well as the medics wanted and he spent 5 weeks in hospital in a serious condition undergoing different operations on his brain.
During this time his 8 year old sister, Carolyn, stayed with her grandparents. Carolyn had become extremely withdrawn during this time. She was grieving – her mother, father and brother had left her for 5 weeks, she hardly saw them and this left her feeling isolated and worried. Do they love me? Am I important? Why don’t they come and get me?
Once Anthony was home, he was the centre of attention and had all of his relatives rallying round him and buying him new toys. Mum and dad needed to talk about what had happened and Carolyn noted and heard everything that was said. She didn’t feel important anymore. Even in the school playground, her friends, their mums, and her teachers all talked to her about Anthony.
Mum spoke to a social worker about her concerns for Carolyn. She recognised what had happened and that Carolyn needed some support. The Social Worker referred her to Rainbow Trust and a Family Support Worker came to visit the house to see Carolyn, not Anthony, nor her mum or dad.
Carolyn enjoys doing art and craft activities and is happy if Anthony joins in but knows that Carla is there for her. Carolyn also enjoys going out to the park playing games and sometimes Carla picks her up from school and they go out for their tea. Carolyn is beginning to settle down, she will talk to Carla about some of the events that have taken place but often just likes to talk about general things.
Anthony’s parents have recently been told that the tumor is continuing to grow and the medics are unsure what they can do. Carolyn sees Carla on a regular basis, who continues to work with her and support her throughout the period that she needs that special someone just for her.
Last year Rainbow Trust spent 3,259 hours supporting siblings of terminally ill children.
At Rainbow Trust we recognise that it is not only the sick child who is affected by illness - it impacts on everyone in the family. We know that siblings feel worried about their brother or sister and fearful about illness changing their family life. Rainbow Trust Family Support Workers get to know all the family members and spend time with brothers and sisters, helping them to understand their siblings' illness and providing the opportunity to ask any questions they may have. Playing games, day trips and one to one support are ways in which our Family Support Workers reduce sibling stress and increase opportunities for leisure activities.
Rainbow Trust's unique and individual support benefits siblings by improving their relationships with sick brothers and sisters through increased communication between parents and brothers and sisters about their worries and illness. Family Support Workers empower siblings with the skills to help themselves at difficult times by giving them time just for themselves.
Beth is 7 years old, and lives with her mum and her little brother, who has very complex care needs and whilst Beth loves John dearly, she also has times when she really wishes she did not have a brother, any brother but especially a poorly brother.
Beth’s family was introduced to Rainbow Trust by John’s community nurses, who recognised that Beth’s mum was clearly finding it hard to balance her time between Beth and her very ill son.
Beth’s mum was very open with the Rainbow manager and said she was at a loss at how to cope with a very sick child who needed her constant attention and all the visitors who came to see him, and to find time to be with Beth.
Mum gave examples of Beth coming home from school, bursting to tell her about her day at school only to find herself saying I am busy with your brother, but once I have fed him we will talk about it, only to find as soon as she sat down with her daughter the door bell would go and it would be the occupational therapist calling to discuss the new hoist; then the visual impairment worker; then her son would have a large epileptic seizure, and Beth would go to bed not having been able to share her special news from school.
Mum had noticed that Beth was slowly changing into a sullen and withdrawn little girl.
Various possible options of support were discussed with mum, whether our worker would support the brother, so mum could spend more time with Beth or whether the worker would become Beth’s special person and spend time with her. As well as being there for mum. Mum decided that a special person just for Beth was the answer. How right she was.
Our support worker was introduced to the family and was in the family home when Beth came home from school. She had arrived earlier to get to know mum and her son, and had in fact read to the sick boy, so mum could prepare his feeds and also have a soak in the bath – a very rare treat. So when Beth came in mum did have time to listen to what had happened at school, and then introduced the worker to Beth, Beth was delighted to hear that someone had come into the family home for her not her brother!
Our worker has become a life line for the family, she regularly collects Beth from school and they have “adventures” together visiting local libraries, something Beth pointed out she could not do with her brother, as he makes too much noise! So her homework is now always handed in on time, trips to the pet corner at the local garden centre, again something Beth cannot do with her brother, as he is highly allergic to pet hairs!
When her brother had to go into hospital for planned surgery, our worker, with mum’s full permission, was able to explain what was going to happen. Beth took this in her stride, and decided having to stay with her grumpy Aunt would be alright for the three days as our worker would take her to and from school each day and to visit mum and brother in the hospital.
Beth has become a much happier little girl. Mum is more relaxed knowing her daughter has an outlet for her energy and worries she did not have before, and that she has a “professional friend” there for her as well, just don’t tell Beth though!
Dominic and Sarah live with their mother and sick brother Bradley. Their father does not have any contact with the family. The maternal grandparents’ live about 10 minutes drive from the family home and Granny is very supportive to the family, however her husband, the children’s grandfather, has a form of dementia, so at times it is difficult for her to help her daughter as she has to care for her husband.
Dominic is 7 and attends the local primary school and Sarah is 3, she attends a local preschool for a few sessions a week. Bradley is 5 and has a serious cancer affecting the nerve cells.
Rainbow Trust's Support
The family were referred to Rainbow Trust by the CLIC Sargent social worker at the treating hospital, which is about 40 miles from the family home. Mum is a very independent lady who takes pride in being a good mum, especially after the difficult break up of her marriage. As Bradley was having to be admitted to hospital for a long period of treatment, that was going to make him very ill, the social worker and mum identified that there would be a need for some extra help with Dominic and Sarah during this time. Mum was reluctant to accept help from social services, as she feared that she would lose control of her children, but she felt having heard about Rainbow Trust that we may be the right sort of support for her and her family.
A Family Support Worker was introduced to the family, and they very quickly built a great rapport. Dominic and Sarah really enjoyed the company of our worker, playing games, dressing up, messy play, trips to the park etc., having been slightly “pushed out of things” as Mum put it. Granny was a little apprehensive at first, and explained that she felt she should be able to support her daughter. The worker carefully explained that she was there to help everyone and certainly not to take her place! But maybe there were times when Granny would welcome some help with the grandchildren. Granny soon warmed to the worker too!
Bradley sadly became very unwell as a result of the treatment and became very clingy to his mum, who had to stay with him in hospital. Granny had become “mum” to Dominic and Sarah. Dominic and Sarah moved in with Granny, who soon realised the difficulties of getting a 7 year old to school and having a 3 year old at home with her for most of the day, as well as caring for her husband. This was when our worker worked in partnership with Granny, our worker taking the children to school or preschool so Granny had time to get her husband up in the morning. Taking the children to visit mum and brother in hospital, again giving Granny time for herself to “recharge her batteries” to care for Dominic and Sarah again, however after a busy time out with the Rainbow worker the children were usually ready for bed. The children shared their concerns with their Rainbow worker, who helped them understand why mum could not be there and the children were not in their own home. Our worker took the children to spend time in their own home, to change toys and play in their garden. Our worker also developed a good relationship with Bradley, so at times Bradley would let our worker stay with him, so Mum could spend time at home with Dominic and Sarah.
Bradley is now doing well and at home with his mum, Dominic and Sarah.
Our worker still visits the family and supports in many different ways, for example listening to mum’s concerns about a possible relapse for Bradley,. Our Family Support Worker stills cares for Dominic and Sarah when mum has to take Bradley to hospital for checkups with Granny’s blessing!
Outcomes as a result of Rainbow Trust’s support
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