A Kent mother is making an urgent call for immediate psychological support for families of children with cancer as her daughter struggles with the trauma of gruelling cancer treatment.
Kate Munday-Hoctor, from Whitstable, says the current system is failing families like hers. ‘Parents and families should be able to access immediate psychological support when their child receives a cancer diagnosis, and this support should be ongoing throughout their family’s journey,’ she insists. ‘Currently, parents are left with next to nothing while trying to navigate the shock, trauma and heartbreak of the situation they’re faced with, at the same time as caring for their poorly child and family.’
Kate has been through the ordeal herself and now helps parents in a similar situation. In 2018, her daughter Amber, then eight years old, was diagnosed with an extremely rare cancer – synovial sarcoma. Amber had reported pain in her right foot but was discharged by medics who suggested it might be just a sprain.
Eventually, Amber couldn’t put weight on her foot, and a swelling appeared. She was sent for imaging and was misdiagnosed with a benign ganglion (cyst).
Kate said: ‘We attended multiple GP and hospital appointments for nearly a year, and Amber was initially incorrectly diagnosed with a benign ganglion. She underwent surgery, and six weeks later, we were given the terrible news that Amber had synovial sarcoma and that some of the tumour remained in her foot.’
There are an average of 79 cases of synovial sarcoma diagnosed every year in England. Synovial sarcoma makes up 2% of all soft tissue sarcomas and is so rare that it accounts for 0.03% of all cancers.
Amber has since undergone five surgeries, six weeks of radiotherapy and numerous other traumatic procedures. Even though, now aged 15, she has been cancer-free since 2020, her struggle is ongoing as she has PTSD.
Kate said: ‘Amber is a miracle; she has beaten the odds. But, if she had the correct procedure the first time around, she would not have had to endure those invasive procedures, and there would have been less risk of recurrence.’
Kate soon came to realise that there is precious little support for parents like her. ‘There is much research that shows parent wellbeing correlates with child wellbeing. Yet parents are having to manage their wellbeing while being confronted with their worst possible nightmare – there is a 12-week waiting list for psychological support from the NHS. For the first few weeks after Amber was diagnosed, I felt I could barely function.’
Motivated by her own experience as a parent, Kate founded the Sarcoma Parents Support Group in March 2024. Since then, the group has grown to more than 20 members who meet every month virtually and share their experiences. There are also regular expert speakers, and opportunities to engage in therapeutic support. It is a vital network for parents facing such an ordeal.
Kate is also currently working on the development of a local parent support network for parents of children with cancer as part of her role at Changing Minds Kent and has founded the Synovial Sarcoma Fund in collaboration with Sarcoma UK to fund research into her daughter’s cancer subtype.
Kate has also been shortlisted for Support Group Champion of the Year in Sarcoma UK’s Shining Star awards, which will be held on 26 November at Mansion House in London.
Asked what she would like to see made available to the parents of child cancer patients, Kate said: ‘There should be a fast-track service for parents and families that has immediate access and offers ongoing specialist support for parents, children and families.’
On late diagnosis, she said: ‘If you are a health professional and a parent returns to you over and over again, concerned over their child’s health, they must be taken seriously. We may not be medical experts, but we are experts on our own children; it astounds me how often we are disregarded.
‘Sadly, we are not alone with Amber’s story, with many sarcoma patients receiving a mis or late diagnosis, meaning survival rates are much lower than they could be. As sarcoma and its many subtypes are so rare, less funding is invested in research, which means a lack of treatment progression.’
Sarcoma UK Support Line Advisor Carly McDonald, who attends the Parents Support Group that Kate founded, said: ‘We recognise the immense challenges faced by families dealing with sarcoma diagnoses. Our support line is a vital resource, offering expert guidance and emotional support. However, we agree with Kate that more extensive, comprehensive, immediate and ongoing support is needed. The psychological impact on patients and their families can be profound and long-lasting. We’re committed to advocating for enhanced support services within the NHS to meet these crucial needs.’
