Lewis Scarth was first told his cancer was actually a slipped disc – and spent months going back to hospital before rare cancer was spotted.
Katrina Robinson and her son Lewis, 23 who is autistic and is suffering from cancer(Image: ChronicleLive)
A Northumberland man with autism and his mum spent months fighting for answers after initially being told his incurable cancer was a “slipped disc”. Lewis Scarth, 23, has a rare form of cancer called and epitheloid sarcoma.
This initially saw his back damaged – and he had to have invasive surgery of the spinal cord. However after this had been seemingly successful, devastatingly the incredibly unusual form of cancer returned and has now spread – including to his chest where a tumour is touching on his heart and lungs.
Lewis was initially told by the GP that he had a slipped disc, and mum Katrina Robinson told ChronicleLive she believes he wasn’t taken seriously due to his autism. She said: “He was originally diagnosed about four years ago. That was only after being misdiagnosed by the GP for six months. They were saying he had a slipped disc. Then four years ago he had major surgery to remove a section from his spine. He had spinal cord damage.”
The tumour had effectively contributed to a broken back – and Lewis needed several surgeries followed by proton beam therapy – which is a form of radiotherapy and required them to stay in Manchester. Devastatingly with the cancer having returned, the family have been told it can not be cured, only managed.
Katrina is hoping that there may be a clinical trial Lewis can take part in, and also wants to raise awareness of how autistic people are treated in healthcare. She added “With his cancer being as rare as it is, they are treating it day to day.
Katrina Robinson whose son Lewis, 23 is autistic and is suffering from cancer(Image: ChronicleLive)
“With it being a sarcoma, they are rare, but the kind Lewis has is even rarer. He is alright in himself but obviously he has been told it is incurable and that is a difficult thing for him to get his head around.”
She added: “We are just hoping that the treatment moving forward might mean Lewis is entitled to go on a clinical trial to give us as much time as possible.”
Speaking about Lewis’s missed diagnosis, Katrina said that while she recognised how busy and under-pressure NHS staff were and how rare his condition is, it was something that had had a real impact on them. She said: “For me, it’s really hard to speak about. So much went on. For me, it’s that I want to ensure that children and adults with autism are taken seriously. When we have been at the RVI, that’s been fantastic, but not at Cramlington or the GPs.”
Lewis Scarth rang the bell at the end of treatment for cancer the first time around(Image: ChronicleLive)
A spokesperson at Northumbria Healthcare NHS Foundation Trust said: “We are committed to ensuring that all patients, including people with autism, receive compassionate, equitable and person-centred care.
“We have a team that supports patients with autism to access hospital services. The team works with patients, families, and staff to ensure appropriate support and reasonable adjustments are in place to meet individual needs. We apologise if the patient and their family did not feel supported in this instance.”
A spokesperson for the Bedlingtonshire Medical Group added: “We always strive to provide the very best care for all patients. We cannot provide details of the treatment and management because of our professional duty to protect the confidentiality of our patients.”
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