Gary was looking forward to his retirement when, in the autumn of 2020, he opted to retire early from work to free up extra hours for his fellow drivers. “I retired because of the furlough system. I was a Tesco supermarket delivery driver. A lot of the drivers were younger people whose partners had been furloughed and they were desperate for extra hours. We were alright financially, so I brought my retirement date forward five months to September 2020, so that my hours of work could be distributed between the younger drivers. “Then, in November, I had a very small, pastel-sized, white and red growth inside my cheek. In those days you took pictures and submitted them to your GP. My GP didn’t know [that I had cancer] at that stage but she did a referral to the maxillofacial department at the Royal Berkshire hospital. “I was called into the clinic for a Monday morning appointment in December. The doctor had a look and asked if I could wait because the clinics were so busy at that time. Fortunately, I was retired and could wait in the waiting room for him to do a more thorough examination. So, I waited two and a half hours and then the doctor called me back in again and said that they were going to cut the growth off and send it for a pathology report. I said that was okay. It was only two or three stitches inside my cheek.” Failure to act on histopathologist’s warning leads to stage 4 cancer The doctor sent the biopsy sample from the lump to the hospital’s histopathologist to review. The histopathologist reported that the biopsy sample had some unusual features and verrucous carcinoma (cancer) could not be ruled out. A histopathologist at a more specialist hospital then reviewed the sample and reported that cancer could not be ruled out, but recommended that Gary’s case should be reviewed at the hospital’s head and neck multidisciplinary team (MDT) meeting. No MDT review took place. Instead, Gary was told that the lump was a non-cancerous wart which was probably caused by an injury to the inside of his cheek from a sharp tooth. “We received a letter from the doctor saying that it was only a wart and everything was fine, so we were relieved and we carried on making plans for our retirement. Then 18 months after that, when we were away visiting relatives, I had what I thought was an abscess under my tooth and it was a bit smelly on my breath. When we came back to Reading, I contacted my dentist as an emergency because I wanted antibiotics. As soon as she looked into my mouth, she mentioned the C [cancer] word, and then said, “Oh I’m very sorry. I don’t think you know.” She took photographs inside my mouth, which by now was all black with stage 4A cancer. We were whipped into the hospital almost the next day. We didn’t realise when we came into the room that there was a Macmillan Nurse sat behind the door. The consultant oral and maxillofacial surgeon immediately said that it was cancer stage 4A. It didn’t register. As soon as he mentioned cancer, everything was just a blur.” Major surgery removes the extensive tumour and uses bone grafts to reconstruct jaw Gary had another biopsy, which confirmed he had buccal mucosa squamous cell carcinoma, and MRI and CT scans revealed that a jawbone tumour had extended into his cheek, tonsil-to-tongue area and floor of his mouth, with metastatic spread to his lymph nodes. After an MDT review of his case, he was referred to a specialist hospital for surgery to remove the tumour and reconstruct the jawbone. “The operation was scheduled for the 26th October but we were contacted by the consultant who said he must bring it forward two weeks because “in a week’s time you won’t be here”. The cancer was that aggressive. “So we went in on the 12th October very early in the morning because it was a 16-hour operation. I spent three weeks at the Churchill Hospital in Oxford in the Blenheim Ward with all the other head and neck cancer people. That was quite bad because I was hallucinating from all of the painkillers they put me on. It was very worrying." Radiotherapy – a brutal but necessary treatment “I saw the consultant a few times and because he was confident that he’d removed 100% of the cancer we were debating whether to avoid radiotherapy, because it is very brutal. My wife and I discussed it quite a bit and then we talked to the consultant. He said that if there were any cancerous cells in there, he would like me to have radiotherapy. They never say to you, “You must have radiotherapy”. It’s very strange thing to have to do but, in the end, I decided to have the radiotherapy. “I started radiotherapy on the 2nd January 2023. It was 30 sessions, Monday to Friday for six weeks. The first two weeks were fine and I was actually going there on the bus. Weeks three and four, I was very tired at the weekend and spent all day Saturday in bed, and Sunday I would get up and go downstairs and just do some little bits. But weeks five and six were horrendous. The radiotherapy was so brutal. I persevered and completed weeks five and six but the recovery after radiotherapy was still almost three months out of the other end of it.” The combination of the extensive surgery and radiotherapy left Gary with permanent facial disfigurement, impaired control of his mouth and jaw, and an inability to fully close his lips. He has impaired speech, difficulties with swallowing, tinnitus, neuropathic and musculoskeletal pain (from the jawbone surgery and the bone grafts taken from his shoulder). However, despite the devastating stage 4A cancer diagnosis, extensive surgery and brutal effects of his radiotherapy, Gary was still able to adopt a positive approach to the side effects from his treatment. “When the consultant surgeon came to see me the day after the surgery, he asked me to lift my arm. He was so over the moon with how far I could lift it, that he arranged for the physiotherapist to come and do my exercises straightaway. “They were also concerned about the effect of the operation on my voice box, as I had a tracheostomy in my throat. A doctor came at 8.15 on a Saturday morning, dressed in jeans and an open neck shirt, and said he’d come to remove my tracheostomy. I had to sign something and then he whipped it out and put a pad over it and asked me to press the button every time I wanted to speak. At 9 o’clock after the nurses’ changeover, my regular nurse came to me and asked me how I was. I answered her, forgetting that I was meant to press the button to call for help, but she thought that was great news and they were all over the moon. “Since then, we’ve watched a surgery programme about exactly the same operation as mine, 16 hours. So knowing even more about the operation now, I know that I was right in insisting to the surgeon that he must take the bone graft from my shoulder blade and not my leg, because that would leave me with a mobility problem. If I lost the use of my left arm, I’m right handed, so it wouldn’t be so bad, but fortunately there’s no problem with my left arm. I still can’t chew. That’s to do with the alignment of my jaw. But I don’t do too badly.” The importance of the duty of candour When mistakes are made or things go wrong during NHS treatment, the NHS trust and the clinicians involved must inform the patient about incidents which have affected their care. This is known as the duty of candour. In cases such as Gary’s, a doctor’s understanding of this duty can be the difference between the patient assuming that his stage 4 cancer was unavoidable or understanding the impact that a mistake has had on the outcome of his healthcare. Gary recalls the moment when his consultant surgeon realised that his small lump had been allowed to develop to stage 4 cancer because the specialist doctor didn’t call for his help in assessing the lump (in the same clinic) or refer Gary’s case for MDT review. “We had kept the photograph [from the original GP appointment] of the lump inside my cheek, which could be measured against my finger which was holding my lip down. When I pushed the photograph across the desk and showed it to him, his face changed immediately. I could see by his facial expression that he knew just from the photograph that it had been cancerous. I can still his face. He was so shocked that the previous doctor hadn’t called him in, if he had been in clinic. He told me, “I’m only here as a clinician. If anybody comes into a clinic with something like this, they are to come in and disturb me and I would go and look at it.” So the consultant instigated an internal investigation. If he hadn’t instigated the internal investigation, it would have just been left as it is.” Investigation reveals multiple mistakes in Gary’s care Gary and his wife were then invited to attend a meeting at the hospital where they were told that the investigation had found multiple mistakes in Gary’s care. The specialty doctor, who was actually a dentist, should have asked Gary to come back the next day for review by the consultant who would have been in clinic that day. The second histopathologist’s report of the biopsy sample should have highlighted more prominently the possibility of cancer, which was only mentioned within the text of the report, and was not acted upon by the specialty doctor. The investigation also criticised the doctor’s failure to refer Gary’s case to the hospital’s head and neck MDT meeting which would have resulted in a consultant review and additional scans, following which the lump would have been surgically removed. This would have involved only a small incision but would have avoided the spread of the tumour, the extensive surgery needed to remove it and the bone and tissue grafts needed to reconstruct his jaw, the radiotherapy and his disfiguring and distressing injury. Gary recalls, “It would have only been 2 cm around it and the whole thing, the lump and the root, would have been removed. And it would have either been stitched and would have retained all of my cheek, but if it was too big it would have only required a filler. That’s taken from your wrist or fleshy hip area rather than your back. He said it might have even healed on its own.” Looking for a solicitor to help make a medical negligence claim After hearing that his devastating injury could so easily have been avoided but was caused by mistakes in his care, Gary decided to find out if he could make a medical negligence claim to ensure that the hospital would learn from their mistakes. “When we completed the meeting, they apologised to me. I asked about the next steps and they said there would be no next steps. I said, “Well unfortunately, because of the outcome there will be next steps.” It was the process I wanted to pursue, so that they would make changes. So that this would never happen to anyone else. Because when you start talking to people, the NHS is in a sorry state. I’m sorry to say it, but it is… We feel that because we’ve gone to the clinic and we’ve sat in the waiting room, and because of all we’ve been through, we know what’s coming. And when a person comes to the counter and says they have an appointment with the doctor, we look at each other as if to say, ‘best of luck with that’. That doctor is still practising and has been looking in patients’ mouths for years.” Gary and his wife were convinced that they had a case for medical negligence but, like many patients, they were a little daunted by the thought of legal proceedings. They knew they needed to find the right solicitor. “We had a friend whose neighbour is a solicitor, so we asked for a recommendation for somebody in Reading who could deal with the case. Ben Ireland’s name came up, so that’s where we started. At our very first meeting, Ben’s empathy impressed us so much as well as his understanding of the case. It’s a difficult scenario, but we both felt the meeting was relaxed. He explained things for us to understand. Never any legal jargon. We’re not legal-tech. We’re laymen but he explained it all in layman’s terms. We were so relieved when he came back to us saying that we had a case. That made us very happy and we definitely got the right person. He put us at ease right from the first minute and now we’re like old friends. That’s how it’s been.” NHS Trust’s admission of liability but lack of empathy? As the legal investigation proceeded, Ben supported Gary and his wife through some emotionally challenging meetings, as they learned from our medical experts about the failings in Gary’s hospital care and how different his treatment and his outcome should have been. Gary recalls, “When the Professor said that I wouldn’t have required radiotherapy, that really tipped me over. Anybody who goes through radiotherapy then hearing the expert saying I wouldn’t have required it… I nearly had to run out of the room. I was so upset.” The letter of claim was served on the NHS trust responsible for the hospital, which admitted liability and provided a formal apology. Despite this, Gary never received an explanation from the hospital as to why the specialist doctor hadn’t acted on the possibility of cancer that was flagged in both histopathology reports, or referred his case for MDT review as recommended by the second histopathologist. In addition, the defendant’s formal response to the claim didn’t fully acknowledge the impact of Gary’s injury. Gary recalls, “It was almost dismissive. As if they plucked something out of the sky.” Seeking and giving psychological support after cancer Gary’s out-of-court settlement means that he is more financially secure as he plans to make the most of his retirement, but his greater freedom comes with a heavy personal cost and will never be the future he envisaged when he opted for early retirement. The psychological impact of his injury was such that he didn’t leave the house for nine months after his surgery. Going out now involves being questioned by children about his appearance, or adults assuming that he has suffered a stroke. His confidence about the future is naturally overshadowed by fear that he could develop a recurrence of the cancer or secondary complications from the radiotherapy, such as osteoradionecrosis. Attending the Heads Together support group for people with similar cancers has helped Gary process what he’s been through and acknowledge the progress he has made, whilst helping others realise that they are not alone. “The first time I went on my own into a room with strange people, I don’t mind admitting I burst out crying. So, when a new person came in, I could say to him, “Don’t worry, I was exactly the same two years ago”, and I could see that by me saying that to him, it relieved it for him. What you find when new people come in is that they’re so overwhelmed, but when you explain what you’ve been through and see the relief on their face, it is so satisfying for me to think I’ve passed on my experiences and now he’s seeing me two or three years later and everything I am doing. The best statement I ever heard was that you’ve got to be a patient patient. And once you get that over to them it’s like a rollercoaster. There are good days and bad days, but if you look back at where you were three months before, you’ll be surprised how much you can now do. And when they go out, they’re relieved that they’re not the only one. You feel like you’re the only one, but you’re not. “At the meetings, there are people that are further advanced than me. So, someone has osteoradionecrosis and in ten years’ time that could be me. But my condition is slightly different and I feel I could go a bit further, maybe 15 years before I get the bone deterioration, but in the course of that time I’m getting older anyway. The other one is carotid artery stenosis, where radiotherapy causes the artery to deteriorate and causes stroke. So, that’s why we’re living life now. I have kept money back for use on care and everything, but let’s also get some pleasure from the money now. “I am still a bit frustrated because of what happened, so through our Macmillan Cancer Care Nurse I’ve booked to see a nurse psychologist to see if that will help with my frustration. I didn’t accept the help earlier on because I was so positive I didn’t really feel it, but because of the anger I may now need help from that side a bit more. As this lady works at the hospital, I am going to take the letter of apology and the hospital’s letter of response, so that she can understand. This is another opportunity to say ‘Look, this is what happened, so what are you going to do to sort it out’ so this doesn’t happen again.” Non-smoker questions mouth cancer link to lifestyle choices Like many cancer survivors, Gary has looked back and asked, ”Why me?” As a life-long non-smoker who doesn’t drink alcohol, he wonders whether his mouth cancer could be linked to his regular consumption of aspartame, an artificial sweetener commonly found in sugar-free drinks and chewing gum. Having met other mouth cancer sufferers with similar stories to tell, Gary fears for the future of others like him, particularly young people who routinely consume large quantities of diet and energy drinks. “I’m convinced that my cancer was caused by aspartame, the artificial sweetener, but I accept that others may not agree. I do accept that I overdosed on it with sugar-free energy drinks every day and I always had chewing gum in the car. When you look into it, this artificial sweetener was put into drinks and everything else in the 1980s. All these youngsters have been brought up on these zero drinks, artificial sweetener, chewing gum. It’s even in toothpaste! I wonder whether we are sleepwalking into a big problem.” Time will tell, as will better research, but for now Gary must live with the certainty that with better medical care his stage 4 cancer would have been avoided. If you or a family member have suffered severe injury as a result of medical negligence or have been contacted by HSSIB/MNSI or NHS Resolution you can talk to a solicitor, free and confidentially, for advice about how to respond or make a claim by contacting us.
