Stuff that matters

A woman lost her husband of 38 years after a hospital made a series of mistakes that meant he was taken off surveillance despite having a condition that is known to turn into terminal cancer.

Diane Dean, 59, met her husband Nicholas when she was 13, as he was two years older than her and a student at the same school and the pair hit it off, started dating a short while later, and were married in 1983.

They were together ever since and had two children together, and Diane was sitting by her husband’s side in 2017 when she was told he had terminal cancer and had just six months left to live.

Diane soon learned that Nicholas had been wrongly diagnosed, incorrectly taken off cancer surveillance, and never had a follow-up appointment despite being at high risk of developing cancer.

Adding insult to injury, Nicholas, also known as Nicky, couldn’t have visitors for the last few months of his life due to the pandemic so the pair were robbed of their last moments together.

Diane, a palliative nurse from Ripley, Surrey, said: “It should have been our 40th wedding anniversary next year. We met at school when Nicky was 15 and I was 13.

“Nicky was looking forward to early retirement from his job as an electrician and we had so much planned after all the hard work we’d put into marriage and kids. Now that’s all been taken away.

“We were together for 46 years, I lost all my hair because of it, I lost my job, I had to give up work to look after him full time – I’m on heavy meds now.

“At the end of the day, my husband had to die due to some stupid mistakes that should never have happened in the first place.

“There were four to five errors at the hospital, there was an investigation that was set up by the hospital and the findings were pretty awful.”

Nicholas passed away in September 2020 aged 58 following a three-year battle with cancer of the oesophagus.

He initially suffered from Barrett’s oesophagus, a pre-cancerous condition where the cells change to resemble the lining of the intestine due to acid reflux.

But, despite being at risk of developing cancer, he was taken off screening by a junior doctor at the endoscopy department at Royal Surrey County Hospital, who misdiagnosed Nicholas.

They were also unaware of his previous history of high-grade cell changes and failed to properly read the admission form which clearly stated ‘this patient is on Barrett’s oesophagus surveillance’ at the top of the page.

After suffering from heartburn and indigestion for some years, Nicholas was diagnosed with stage 4 Barrett’s in 2005 while in his early 40s. Barrett’s has four stages before it then turns into stage 1 cancer of the oesophagus.

Dianne continued: “There are so many reasons why people could get acid reflux, the diagnosis needs to be correct.

“He was taken off surveillance, they didn’t even read the paperwork – an inexperienced doctor put the camera down his throat, and the senior doctor didn’t notice that and pick up on his mistake.

“With Barrett’s oesophagus, there are four stages – after stage four comes stage one cancer, then two, three, four, then death.

“If that consultant who was training on that day had read the paperwork she would have done the right thing. I understand she must have been busy, but that’s no excuse.”

Prior to 2005, it was discovered that Nicholas had a faulty valve at the end of his oesophagus which was causing more acid to leak up.

Repairing the valve would have meant risky, invasive surgery, so Nicky was advised to continue taking medication to keep the acid down and reduce any stresses in his life, which can be a major contributor to aggravating stomach acid levels.

He was also put on a surveillance programme to monitor his condition.

The endoscopic surveillance started at every three months, then as improvements were identified it reduced to six months, then annually, and then every two years before he was discharged in 2013.

But what the family have since found out is that people with Barrett’s should never be taken off surveillance, even if their condition has seemingly improved, according to the British Society of Gastroenterology guidelines.

For Nicholas, a lack of monitoring meant his worsening dysplasia went unnoticed for more than three years before he went to his GP in 2017 with trouble swallowing.

A large, ulcerated lesion measuring 38cm was found in his oesophagus as well as another at the top of his stomach. Biopsies and a PET scan confirmed this was cancer that had also spread to his lungs, liver and bones.

He was given six to 18 months to live.

Diane continued: “Nicky had to accept that he was going to die because of someone else’s mistake.

“He used to say, ‘life deals you blows and sometimes you’ve just got to deal with it. Mistakes have been made but I can’t change that now.’

“If he was angry, he never showed it as he didn’t want to upset us. He worried more about the family he was leaving behind who were suffering more than he was.”

On receiving his diagnosis, Diane began to question the last few years. Having been a private community nurse for over 30 years, specialising in palliative care for patients with multiple sclerosis, she knew something wasn’t right.

She added: “How could they say he didn’t have Barrett’s and then tell him he was terminal? I wasn’t taking any of it. I had a lot of pent-up anger and wanted it looking into, but Nicky never wanted it to become a witch hunt.”

After Nicky’s diagnosis, an investigation was launched by the trust into the failings that occurred. The Serious Incident Cause Analysis report in September 2017 apologised for the level of care provided by the trust was not to the usual standard and assured the family that they would learn and make improvements as a result.

The report flagged up five failings that needed addressing by the trust, and following the report, the Deans had sought out legal advice from Yorkshire-based specialist clinical negligence law firm, Medical Solicitors.

The trust admitted breach of duty of care in relation to Nicholas being discharged from observation in 2013.

Before his death, Nicholas had planned to climb Kilimanjaro himself to raise funds for the hospital, but unfortunately, he was too weak.

Diane now intends to climb the mountain in his memory, and is raising money for the Royal Surrey Charity in the process, with funds split equally between the endoscopy and oncology departments at Royal Surrey County Hospital.

Diane said: “I’m doing this for me, but more for Nicky really as it was really important to him that the hospital changed their ways. The hospital is really amazing, but the endoscopy department made a horrendous mistake and they’re very sorry for what they did.

“I admit they’ve no doubt done good things, and I’m pretty sure they might have been stretched due to lack of resources, funding and training.

“I don’t want the money being spent on posh chairs when the hospital is cutting back on certain services that impact patient safety.

“I’m the oldest on the trip and still don’t know if I’ll get to the top, but I’ll definitely be coming back down on my backside! We know climbing a mountain won’t bring Nicky back to us but it will help our healing process and, with him in our hearts as we climb.

“We hope to raise awareness of this common condition so that other people will be able to live their lives to the fullest. If you have acid reflux for an extended period, go and get checked by your doctor.

“Tablets are not always a long-term solution. If your doctor isn’t listening, make your voice heard and get help. It could save your life.”

Bill Jewsbury, medical director for Royal Surrey NHS Foundation Trust, said: “We would like offer our continued sincere apologies and heartfelt condolences to the family and friends of Nicholas Dean.

“The safety of our patients is always our paramount concern and I would like to reassure Mr Dean’s loved ones that this matter was fully investigated at the time and a number of changes were implemented as a result of the findings.”