News posted 25 April, 2024

Children’s cancer ward which many patients call ‘home’ recognised for their ‘world class care’

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Greater Manchester Children’s Neuro-oncology Service, run in partnership between The Royal Manchester Children’s Hospital (part of MFT) and The Christie, has been named as one of six NHS Paediatric Neuro-Oncology Centres designated as a ‘Centre of Excellence’ by Tessa Jowell Brain Cancer Mission.  

A Mossley family has spoken about how the service helped them and praised the high level of care their youngest child received.  

Grace was diagnosed with a brain tumour on 20th December 2019, when she was just 5 years old.     

Sam, Grace’s mother, said: “She was admitted to Royal Oldham Hospital and was blue lighted to Royal Manchester Children’s Hospital that very evening. It all happened so fast. She wasn’t poorly for very long at all”.     

Tragically, she had suffered a bleed on the brain. Grace spent Christmas in the intensive care unit and moved to the oncology ward, known as Ward 86, in early January 2020. Here, both she and her mother lived together for six months.    

Sam said: “Grace was critically ill, and we were told to expect the worst throughout her cancer diagnosis. The type of brain tumour she had meant that her entire body was affected because it involved her central nervous system.     

“She remembered who her family were, but she couldn’t articulate anything. She lost her short-term memory and had to learn to walk and talk all over again”.     

Grace had surgery but due to the severity of her tumour, she also had to undergo very high doses of chemotherapy and radiotherapy on her brain and spine at both Royal Manchester Children’s Hospital and The Christie Hospital – all on top of daily occupational therapy sessions and physiotherapy sessions.     

Sam said: “I look back at pictures of her now, and she was so frail. We were living from one MRI scan to the next.    

“Because of the rules during lockdown in Covid, people on the ward were told that whichever family member is here must be the one to stay for 12 weeks – but we didn’t even know whether she will make 12 weeks.  

“Grace couldn’t be left on her own and she couldn’t eat or swallow her medication. I couldn’t go anywhere so the staff literally used to bring me food. All the nurses became my family, and the ward became my home – it saved us. I still miss all the staff to this day”.    

Despite the tragic circumstances, Sam and the staff on Ward 86 wanted to create a positive atmosphere for Grace. Sam said: “The oncology ward is actually a really happy place. They were doing everything they could for Grace, and for us as a family. Nothing was too much trouble to keep all the kids entertained”.     

“Our bed space was definitely the best dressed. Grace is obsessed with pandas. If you mention pandas to anyone on Ward 86, I’m sure my Grace is the one who springs to their minds”.    

The family live in Mossley, just half an hour from Royal Manchester Children’s Hospital. Sam said: “In spite of our circumstances, I see myself as one of the luckiest women in the world. Some people travel hours for treatment, but we have world class care on our doorstep, especially a consultant like JP (Professor John-Paul Kilday).     

“JP often tells me when he’s gone to a conference to see new developments in treatment. It’s amazing to see that kind of passion in someone and he treats you as if you’re his only patient”.  

Grace came home in June 2020, with both temporary and permanent physical and cognitive side effects from her treatment. Sam and her family have made adjustments for her new additional needs, and she has now returned to school.    

Sam said: “Grace is full of character. She’s a good example of living in the moment. She doesn’t have the memory to remember the bad stuff or worry about the future.    

“My daughter is doing amazing, and her tumour is currently stable. Everything medics have predicted; she has proven them wrong and I’m so proud of her strength.”   

Each year, around 420 children are diagnosed with a brain tumour in the UK. After a detailed review process across the UK, the Tessa Jowell Brain Cancer Mission (TJBCM) has announced a new network of 15 brain tumour centres for children, of which six have been designated as excellent, including Manchester.  

The launch of this brand-new initiative marks the first stage in a national effort to further elevate the treatment, care and research for children with brain tumours. Funded and supported by the National Institute for Health and Care Research and the Mission’s partner charities, TJBCM will use these findings to launch new programmes aimed at further elevating services across the country.  

Manchester has a highly-organised shared care network across both Royal Manchester Children’s Hospital and The Christie Hospital which delivers excellent imaging, chemotherapy and radiotherapy services as well as play therapy opportunities and an impressive national and international research portfolio.  

Dr Stephen Lowis, who led the review process, said: “In every team in every city, we found remarkable examples of exceptional and compassionate care. This initiative will support all centres across the UK to develop their services, through national collaboration and sharing of examples of excellence”.  

Professor John-Paul Kilday, Consultant Paediatric Oncologist at The Royal Manchester Children’s Hospital, said: “We are very proud to join a select few centres nationally to be designated as a Tessa Jowell Centre of Excellence for Children’s Neuro-oncology.   

“This accolade celebrates the hard work and dedication shown by every member of our multidisciplinary service. Working closely with our partners at The Christie, we strive to provide an exemplary level of care to children diagnosed with a brain or spinal cord tumour.   

“This accreditation assures patients and families of the standard of care they can expect from the Manchester Neuro-oncology service, whilst serving as a professional benchmark for our team to both uphold excellence and nurture future progress.”