Chloe Every

Chloe’s story

Chloe had learning disabilities and myotonic dystrophy (“MD”), and was 27 when she died in Queen’s Hospital, Romford. In the 2 years before her death, she had multiple health appointments following reports of increased tiredness and neck lesions. She also had blood tests that started to pick up her ill health.

In May 2019 she became very unwell and needed urgent hospital treatment, and she was found to have untreatable advanced bowel cancer. We believe there was an over-reliance on Chloe self-reporting her symptoms, which meant opportunities to diagnose earlier may have been missed - a common problem for people with Disabilities. This would have contributed to the delay in diagnosing the cancer and therefore her poor prognosis by the time she was finally diagnosed.

She was sent home after the initial diagnosis but asked to return for further tests a day later. On readmission she was placed on a medical assessment unit, where she stayed for 7 days despite the maximum time for being on that unit being 24 hours.

Chloe was never assigned to a consultant so that no treatment path was created for her appropriate to her needs, and crucially her long-standing neurologist was not made aware of her admission, nor were they consulted on the interaction of her underlying MD condition with the plan for investigating the cancer. She was also not admitted under the NHS Trust’s learning disability admission pathway.

Without the input of consultant-led care or discussion with her family as what benefit a biopsy would bring Chloe, and what risks such a procedure might carry, a decision was made by the medical unit that she was to have a sigmoidoscopy, so a biopsy could be taken. She was also in pain. To manage her pain increasing amounts of morphine were being given in the lead up to the procedure. The morphine was given without consultation with the pharmacy department or her Neurologist, and therefore without appreciation for any risks associated with giving Morphine to patients with MD.

The morning of the planned sigmoidoscopy, the nursing records noted she had an irregular heartbeat by the nursing staff overnight just before, no doctors were notified of this. The attending nurses went ahead with giving her an enema to prepare her for the sigmoidoscopy, and shortly after doing this, Chloe stopped breathing and had no pulse. She had gone into cardiac arrest while being given the enema. Chloe’s aunt was present at the time. CPR was administered, and after 6 rounds of CPR Chloe became responsive and was moved to a high dependency ward. Chloe stabilised over the following days.

Chloe’s aunt had barely left her side since her admission, and she was advised to go home for a break as Chloe’s condition was stable. However, tragically, a few hours later, Chloe was found unconscious and unresponsive. It was found that she had died as a result of an unwitnessed second cardiac arrest.

The NHS Trust’s Medical officer advised the coroner that, following the Mortality Review, there were no issues for the Coroner to investigate, the cause of death was established, and was the Advanced Bowel Cancer, contributed to by the underlying condition of Myotonic Dystrophy. There was no mention of the cardiac arrests, nor the missed observation and management of the irregular heartbeat just prior to the first arrest. They did not recognise as failures their handling of Chloe’s admission or non-involvement of her neurologist in her care. Unsurprisingly, the Coroner determined there would be no Inquest.

The Hospital Trust conducted a level 2 Serious Incident inquiry in response to the family’s complaints about Chloe’s care. This investigation failed to explore the causes of Chloe’s cardiac arrest, in addition to overlooking the impact of the morphine prescription and was an inadequate exploration of the care leading up to Chloe’s death by the hospital Trust. Chloe’s aunt complained to the CCG (now Integrated Care Board - ICB) about the inadequacies of the investigation and they eventually commissioned a Level 3 Serious Untoward Investigation. That investigation was also conducted by the NHS Trust. This report found various failings in the care that Chloe received including that:

  • She was left in the initial assessment unit for 6 days too long, which prevented her from receiving care under one consultant and an appropriate care plan in light of her needs.

  • She had an inadequate pain management programme.

  • She was given drugs without clinical rationale.

  • The staff failed to notify or consult with her treating specialist who had worked with her for many years. This was likely to have impacted the care she received as a patient with Myotonic Dystrophy.

  • She was not observed in line with her needs by the nursing team prior to being given the enema. When an irregular heartbeat was noted by staff, this was not relayed to a doctor. She was also not properly observed when she was later transferred to the high dependency ward and just before her second cardiac arrest.

  • The causes of her cardiac arrests were never investigated as part of either

  • The Learning Disability Admission Pathway at the NHS Trust was not properly implemented or followed when Chloe was admitted.

Our input

Lisa Every was referred to Rachel’s Voice by Mencap, to advise her on what the Level 3 Serious Investigation report might mean and what else could be done to help the family find out why Chloe had died in the way she and when she had. Our first steps were to break down the dense information in the investigation and help Lisa to understand what it said. She had all her niece’s medical records, so we also reviewed those and cross referenced them with what the report was saying. We identified a detailed list of questions to be asked of the Trust arising out of the report, highlighting aspects that we felt needed further exploration, and we supported the family in seeking a meeting with the local Integrated Care Board and the Trust. This proved to be extraordinarily difficult to achieve, and initially the ICB and the Trust said they were not prepared to and referred Lisa Every to the Healthcare Ombudsman.

Undeterred and working as a team, we engaged support for her from a number of sources. At the time we were working with the BBC on a Panorama programme about healthcare inequality for people with learning disabilities and we put Chloe’s case forwards for coverage. They ran with the story and Lisa was a compelling historian of her niece’s story. We engaged the support of her former local MP, Dame Margaret Hodge, which has been very powerful. We pushed for a meeting through the ICB and Mencap’s strong relationships with NHSE and this led to the first of three meetings with the ICB and the Trust. At those meetings we worked through the Report, changes the Trust has effected to learn from Chloe’s death, and further lessons to be learnt.

We set out for the Trust and the ICB a detailed Agenda of what we wanted to discuss at those meetings and kept the focus on the dual issues of what had been learnt and consequent changes, and what still needed to be learnt.

Part of the “what still needs to be learnt” aspect of the case is ongoing, in that as at July 2023, Chloe’s case had been re-referred to the Area Coroner for East London by the Trust and that the Area Coroner is considering the request.

What can be learned?

Chloe’s case has many examples of healthcare inequalities that people with learning disabilities suffer. Chloe was a young woman who enjoyed her live and lived a very full life. She developed cancer that in another person, who may have picked up on some of the symptoms of tiredness, blood in stools etc themselves and self-reported them, could have been diagnosed earlier. It is still hard to understand how the cancer was not diagnosed earlier though, when Chloe had regular check ups for the Myotonic Dystrophy and an annual GP health check.

Once she was admitted to Queen’s for her cancer care the lack of joined up communication between the current admitting team and long standing treating medical team is a familiar problem, and not listening to Chloe’s family, who kept asking when her neurologist, who was working in the same Trust and was on duty when Chloe was there, was going to review her.

What was fantastic about this case was being able to work collaboratively with the Trust, once we got a meeting, to examine what they were doing to support people with learning disability - they have an excellent learning Disability lead nurse in place and are working with the local ICB to put in place the new mandatory Oliver McGowan Training. Being able to achieve a re-referral of Chloe’s case to the Area Coroner as a collaborative effort rather than having to go via a Court route keep channels of communications open. We are expecting that once there has been an inquest all parties will be able to come to the end of this process having learnt lessons about how to improve both the investigation process when there have been a hospital death of a person with a learning disability, and avoid similar mistakes and a death like Chloe’s again. We can, moreover, use this case as an example to other Trusts and ICBs and coroners of how to approach investigations of such deaths, so that families do not have to campaign for years like Lisa Every has had to.

Chloe’s case was included in BBC Panorama: Will the NHS Care For Me? which aired in October 2022.

BBC Panorama: Will the NHS Care For Me? - BBC Documentary - YouTube