BY TOBY PORTER
A mother who started writing about her late daughter’s life battling bowel cancer found her medical records were lost – and is now going to the High Court to get them and find out how they went missing.
Irene Morris, from Kennington, is trying to find out exactly why daughter Alexis died in 2011, six years after she found out she had two tumours – and after a string of misdiagnoses.
She lived for another six years after medics had given her no chance of survival – withdrawing food and giving instructions not to resuscitate her, against the wishes of her Catholic parents.
Irene might have to spend up to £50,000 fighting to force St Thomas’ Hospital to hand over the records – or reveal how they were lost, and find out what staff have done to prevent it happening again.
Irene said: “I want St Thomas’ to recognise how serious this is, to accept responsibility and put it right – and to publicly apologise to patients and their families who have been adversely affected.”
The court has already recognised the case is arguable and worthy of a full hearing, granting permission for Irene’s judicial review despite the objections of Guy’s and St Thomas’ Trust and the NHS watchdog – the Parliamentary and Health Service Ombudsman (PHSO).
Mr Justice Murray, at a hearing on November 6, 2018 granted permission for a judicial review and the case will proceed to a full hearing before the Administrative Court on February 20.
Irene has already used her own savings and pension pot to fight the case.
She is now raising money in case costs are awarded against her and to fund her own lawyers.
She has been fighting for seven years to get Alexis’s medical records, but St Thomas’ has failed to produce her two oncology paper files, chemotherapy records and electronic chemotherapy pharmacy records covering five and a half years.
Irene said: “This is unacceptable, given that Alexis was admitted for cancer surgery and received cancer treatment.”
The PHSO initially refused to investigate.
She challenged that in the High Court and lost but the PHSO agreed to undertake a further investigation anyway.
Its probe took from 2014 to 2017 and found maladministration, but was unable to obtain the records.
The trust could not say what had happened to the missing notes or produce documents about its records policies.
Irene said: “Alexis was adamant this should not happen to anyone else. “My daughter and I are entitled to understand what has happened to her medical records, simply finding that there has been maladministration is not enough.
I want the trust and the ombudsman to recognise the seriousness of this type of maladministration, and for the Trust to publicly accept responsibility, and to make sure they change their processes to ensure this cannot happen again.
“The hospital has failed to put its house in order over the past seven years, and have continued to fail to produce evidence to back up their claims that satisfactory improvements have been put into practice.”
Alexis suffered with stomach problems from the age of 16 and by the age of 20 was in serious pain, was bleeding and drastically losing weight. At one stage she weighed just 2st 7lb.
She was diagnosed with IBS, then a fissure to explain the increasing bleeding and then anorexia – though she was not told that – and referred to a counsellor.
She was finally properly diagnosed in November 2005 with bowel cancer at the age of 23.
She was told she could have died in less than four weeks if medics had not finally found the right diagnosis.
Irene said: Alexis was extremely independent, despite being dyslexic, and worked four days a week to support herself whilst studying, but was unable to complete her Theology and Education degree because she was too ill to give it her full attention, which upset her greatly.
“But she still managed to land herself her dream job which was with a well-known post-production film company.
“Her world imploded with the cancer diagnosis – but only for a few minutes, and then, ridiculous as it may sound, an incredible sense of relief wrapped itself around her. She actually started to laugh.
The doctors could no longer imply that it was all in her head.”
Alexis had surgery to remove two tumours and spent the next five-and-a-half years as an inpatient at St Thomas’ Hospital, because of further complications and misdiagnoses.
She spent five years in a hospital room, treated by her mum, because she needed one-to-one care 24/7.
In 2009 she had recovered enough to go home for long weekends.
Irene contacted a top bowel surgeon in the USA. He agreed on an operation which she had been repeatedly denied by her UK hospital surgeon.
The US surgeon requested a simple dye test but Alexis came out of the operating theatre in so much pain that she could no longer go home for the weekends, let alone get to the USA.
Irene said: “It was then that she knew she would not leave that hospital until she died.” She died on July 12, 2011, aged 29, in the intensive care unit.
Irene said: “I held her in my arms while her dad was on the other side of her bed holding her hand.
“Inadequate record-keeping and maladministration will have affected those before her and will affect those who have come after.
It is seven years since she died but nothing has changed and patients continue to be put at risk.
“A private apology is not enough. The hospital needs to be publically accountable for its failures, identify the reasons for them and to make a public apology.
“We don’t blame the NHS, in spite of what happened. I will continue to support this incredible public service.
However, where there are wrongs they must be put right for the sake of the patients and the staff who dedicate their lives to helping others.”
A spokeswoman for Guy’s and St Thomas’ NHS Foundation Trust said: “It wouldn’t be appropriate for us to comment ahead of the legal proceedings.”
To contribute to the family costs, go to https://www.crowdjustice.com/case/i-am-alexis/