Ella Wilson says her son Luke was diagnosed with severe brain damage, known as periventricular leukomalacia, after months of her concerns were dismissed by NHS staff. According to Wilson, Luke's medical records suggested he suffered from sepsis at birth, an issue she alleges was never mentioned to her. Olivia Matyus claims her daughter Ingrid's seizures were dismissed as 'maternal anxiety' by a consultant, leading to months of untreated episodes.
Additional cases reveal delayed diagnoses for serious conditions in both children and adults. Jemma Douglas says her son Jack was diagnosed with Ewing sarcoma of the spine after initial doctor visits attributed his leg pain to a football injury, growing pains, or sciatica. Emily Cable reports that Frank Cable was diagnosed with a rare brain tumour after three GP visits misdiagnosed his symptoms as infections.
Multiple reports indicate that Myla Lilly Broadey-Meears died from an aggressive diffuse midline glioma after her headaches and dizziness were initially attributed to eye strain from tablet use. Further examples include respiratory and spinal issues being initially misattributed. Jordan Penfold says her son Louie-James has obstructive sleep apnea and tracheomalacia, and she felt 'fobbed off' by her local hospital, which initially attributed his respiratory issues to viral infections.
She has shown incredible courage and strength for a 10-year-old girl and has been through more in the last 6 months than some people go through in a lifetime.
James Lewis says he was diagnosed with an 18cm benign spinal cord tumour after waking up paralysed; he had previously been diagnosed with scoliosis. Rare and complex medical cases with unique diagnoses have also emerged. Sarah Mckeown says Mason Hogg was diagnosed with multiple meningiomas behind his eyes and other areas, with doctors calling it a 'world's first' in a child for these specific locations.
A first-person account describes a 52-year-old man diagnosed with a bone tumour on his pelvis after years of back pain and clear MRI scans, with an oncologist stating it likely meant six months of life. In another case, Amanda Chester alleges that Kit Chester-Canavan was diagnosed with acute lymphoblastic leukaemia after doctors initially brushed off his symptoms as a viral infection or musculoskeletal problem. An eye test revealed fluid behind the 10-year-old's eyes, and it was soon discovered that she had a large brain tumour.
When the family from the Isle of Harris were travelling in their caravan across the country during the summer holidays in July last year, Lydia started having headaches and her parents noticed she was turning her head and favouring one eye. The family were sent to Forth Valley Hospital where she had a CT scan which showed a large brain tumour. Lydia was swiftly taken by ambulance to Glasgow and had an operation that night to relieve the pressure, followed by further surgery a few days later to remove as much of the tumour as possible.
The facilities were fantastic and Lydia's younger brother Rory especially enjoyed the soft play. The staff were all so lovely and supportive, it really is a brilliant service available to families.
She was diagnosed with a rare type of chondrosarcoma. Lydia spent a month on Ward 3A before being transferred to the hospital’s Schiehallion Ward, to begin chemotherapy. So far, Lydia has had 10 rounds of chemotherapy and 42 sessions of radiotherapy.
On the Isle of Harris, where community spirit is at the core of island life, friends, family and loved ones rallied around to support Lydia, her parents, and little brother Rory. For five weeks, Lydia’s family stayed at Crossbasket House, and although it was an incredibly stressful time for the family, the service allowed them to stay close to the hospital. Proud mum Peigi has praised her community of friends and family on the Isle of Harris for their kindness and support during the family’s time in Glasgow.
Lydia has also had input from the Glasgow Children's Hospital Charity Play Team during her time in hospital. For the first few weeks, her mobility was very restricted, and the Play Team supplied her with lots to do in her room when she was unable to move too much, aiding both her physical and mental wellbeing. Family friends have taken on a few challenges in aid of Glasgow Children's Hospital Charity.
A huge rainbow Highland cow teddy was one of the raffle prizes, and our
The first 'Legs go for Lydia' was completed in September last year, with teams walking the equivalent distance from Harris to Glasgow and back. Peigi shared the idea behind Hallie the Highland Cow, who has became a special someone during Lydia's journey. In a positive outcome case, Olivia Matyus says Ingrid was diagnosed with a rare PHACTR1 gene mutation and has undergone stem cell therapy abroad, which has improved her condition.
A family have praised Glasgow's Royal Hospital for Children and its services provided to them whilst their daughter underwent intense treatment following a shock brain tumour diagnosis. Through step challenges and an adventurous Highland Cow, their community have made an incredibly difficult time that little bit brighter. It remains unclear what specific actions or investigations have been initiated by NHS or other health authorities in response to the alleged misdiagnoses and dismissals reported by families.
The current medical outcomes or prognoses for the patients mentioned, aside from Lydia who is undergoing treatment and Ingrid who has improved, are not publicly known. How common such cases of delayed or missed diagnoses for serious conditions like brain tumours, cancers, and rare diseases are in the UK healthcare system is also uncertain, raising questions about systemic issues. What support or compensation mechanisms are available for families who experience alleged medical negligence or delayed diagnoses has not been detailed in these accounts.
Are there any official statements or responses from the hospitals or doctors involved in the cases where families felt dismissed or misdiagnosed remains unanswered.