Woman who died from ME seeks GP help after hospital ‘did nothing’

A young woman who died from ME pleaded with her GP to keep her alive after her hospital “did nothing to help”, an inquest has heard.

Maeve Boothby O’Neill died of myalgic encephalomyelitis (ME) in October 2021 at the age of 27.

Ms Boothby O’Neill has suffered from ME since she was a teenager, but her illness became more serious in her mid-20s, with her condition deteriorating significantly in the last seven months of her life. He was admitted three times to the Royal Devon and Exeter Hospital (RD&E) during 2021, but he refused a fourth admission because there was no treatment available to alleviate his condition.

ME, also known as chronic fatigue syndrome, is a chronic disease that damages the nervous and immune systems and energy production, making it difficult to perform physical and mental tasks and causing pain and extreme fatigue.

The case of Ms Boothby O’Neill has become emblematic of the struggle of ME patients and their families to have the condition taken seriously and receive specialist care, with her parents Sean O’Neill and Sarah Boothby fighting against the stigmatization of the patient by medical professionals.

An inquest into his death, which opened on Monday, heard that his condition had left him so paralyzed that he could only eat liquids through a straw with the help of his mother.

‘NHS at its worst’

The first time he was admitted to RD&E, he was discharged the same day, with the doctor writing in the notes: “They (hospital staff) could not find anything medical – felt functional, could drink if he wanted, he could go home but mother did not very happy.”

His early loss caused Boothby O’Neill’s mother to tell one doctor it was “the worst NHS”.

After being discharged from RD&E for the second time on June 3, 2021, he dropped from 54.4kg to 50kg in a week. Shortly after Ms Boothby O’Neill wrote a desperate email to her family GP, Dr Lucy Shenton, asking for help in trying to eat and maintain weight.

He wrote on June 18, 2021: “I know you’re doing the best for me, but I need help with food. I don’t know why the hospital didn’t help me when I came in, I’m hungry. I want to eat. I can’t sit and chewing since March. The only one who helps me eat. I can’t get enough calories from the syringe. Help me get enough food to live.”

Ms Boothby O’Neill then refused to be fed through an intravenous (IV) tube because she felt it was too painful and not helping her, prompting Dr Shenton to write in her GP notes on 7 September 2021: “If I could do anything I would . It breaks my heart. She is an intelligent woman and the only autonomy she has left is to make this decision.

In a moving note written four days before her death on October 3, 2021, Ms Boothby O’Neill texted Dr Shenton, saying: “I want you to know that you were the first doctor who tried to help me get better. It means everything to me. thank you.I just wish I could be a more treatable patient.

Ms Boothby O’Neill was described in a pen portrait by her parents read at the hearing as “loving” and “bright”. His mother wrote: “He likes to learn languages. He has an active and active interest in world affairs. He hopes to travel beyond England after finishing school,” adding that he has been robbed of opportunities due to his circumstances.

Mr O’Neill, a journalist with the Times, wrote: “Maeve was bright, creative, artistic and opinionated. She was academically gifted.”

‘Many doctors don’t believe ME is a medical problem’

During Dr Shenton’s four years treating Ms Boothby O’Neill, she found there was a lack of specialist care and therapy for ME sufferers. When he reported his death to the local coroner, he said that “some of the doctors involved in his care stated that they did not believe that ME was a medical problem”.

This inquest to Dr Shenton was left depressed and traumatized by Ms Boothby O’Neill’s deteriorating condition and the apparent inability of the NHS to provide her with specialist care who is now suffering from PTSD and has not been able to work since her death.

He had been expected to be a central witness at the inquest, but it appeared that he was too ill to attend, with his GP telling Exeter Coroner’s Court in a written statement: “He felt that attending the inquest would cause mental ill health.”

Dr Shenton’s evidence will instead be read at the inquest and he will be asked to answer a number of written questions which will be put to him by the coroner and the parties involved.

The initial hearing was told of the lack of specialist services for people with severe ME which Dr Shenton had encountered when trying to find help for the patient.

Dr Anthony Hemsley, RD&E’s Medical Director, submitted written evidence to the pre-inquest stating: “The trust was not commissioned, and therefore not resourced, to provide inpatient care for severe ME.” He said there was “no chance of referring Maeve to a specialist inpatient centre”.

He added: “There is a lack of dedicated specialist services for severe ME locally, regionally and nationally. To correct this situation, action is needed at the highest level.

Giving evidence, Dr Paul McDermott, Dr Shenton’s colleague, was asked by Mr O’Neill whether the practice had received help from RD&E to treat his daughter.

Dr McDermott said: “We’re hoping for more help. All I can say is I’m a bit surprised he got out on the same day. I know the hospital is full of sick Covid patients, but I’m surprised.

The GP said he had not received formal training from the NHS in treating ME since he qualified as a doctor in 1995. In response to questions from RD&E’s legal advisers about why he was surprised Ms Boothby O’Neill spent her first day in hospital, Dr McDermott said: “Looking at Maeve at the time she was hydrated and even though her blood wasn’t good, that was the whole situation.

“I’m hoping someone will take it and go deeper and realize that as a GPS, we’re going to run out of options — and then ‘boom — they’re out the same day.”

The hearing continues.

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