My daughter, 27, went to hospital 3 times but still died from ‘starvation’ after doctors ‘refused a feeding tube’

A MUM has claimed her daughter went to hospital three times but died from “starvation” after doctors refused to give her a feeding tube.

Sarah Boothby-O’Neill told an inquest her 27-year-old daughter Maeve’s death was “wholly preventable”.

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Maeve had suffered from myalgic encephalomyelitis (ME) since she was 13.

She was being treated at the Royal Devon and Exeter Hospital before she died at home in Exeter , Devon on October 3, 2021.

Sarah told the inquest: “I believe the evidence shows Maeve is likely to have died from malnutrition and dehydration because she had severe ME.

“I therefore believe her death was both premature and wholly preventable.

“I am hoping the inquest into her death will explain how she died. She did not want to die.

“Death from ME is extremely rare. Malnutrition in severe ME is common.”

Maeve had been admitted to hospital three times for treatment for malnutrition.

Sarah said: “I am hoping the inquest will try to ascertain how three separate admissions to the Royal Devon and Exeter Hospital failed to save her life.”

The mum told how her only child Maeve was “unable to sit up, hold a cup of tea to her lips or chew” by March 2021.

She told the inquest Maeve could have been “treated by tube feeding in hospital”.

But Sarah said the “appropriate form of tube feeding was never provided”.

She added: “At home it was impossible for me to get enough calories into Maeve from a liquid diet.

“Without special nutritional intervention, Maeve’s deterioration could only continue.

“Yet her continual deterioration across and throughout three admissions seemed to go unnoticed by the hospital.”

Maeve’s dad Sean O’Neill said: “In her last few weeks Maeve showed great courage.

“She knew there was no cure for ME and she faced up to the fact she was going to die.

“She did not want to die. She was desperate to live and was full of dreams and hopes.

“But nor did she want to live a life in the shadows, confined to bed being fed through a tube. I feel her loss every hour of every day.”

Sean, who has been a journalist for The Times for almost 20 years, said he did not seek to blame doctors for Maeve’s death.

But he told assistant coroner Deborah Archer: “I have little faith in the ability of institutions to ‘learn lessons’.

“Experience has taught me they tend to guard reputations, individual and corporate, rather than embarking on reform.”

‘DESPERATE TO LIVE’

Sarah, who was Maeve’s full-time carer, told the inquest that her daughter did not want to die in hospital.

She said: “If she had to die from starvation with severe ME, she wanted it to be in the familiarity of home and the care of those she loved.

“Maeve might have died. It’s the ‘how’ I want on the record. The whole system did not work for Maeve because she died.”

Sarah told the inquest that Maeve wanted nothing more than a “loving hug”.

But it was “too late for that” – as hypersensitivity made all touch “excruciatingly painful” for Maeve.

Lawyer for the hospital Rhys Hadden said the trust did not accept Maeve’s death was preventable.

Hadden said: “The trust disagrees that it failed in its duty of care or missed important opportunities.”

The inquest in Exeter continues.

NHS: what is ME?

Here is the official NHS guidance on myalgic encephalomyelitis:

Myalgic encephalomyelitis, also called chronic fatigue syndrome or ME/CFS, is a long-term condition.

ME can affect different parts of the body. The most common symptom is extreme tiredness.

The cause of ME/CFS is unknown. ME/CFS can affect anyone, including children.

The 4 main symptoms of ME/CFS are:

• feeling extremely tired all the time (fatigue), which can make daily activities like taking a shower, or going to work or school, difficult
• sleep problems, including insomnia, sleeping too much, feeling like you have not slept properly and feeling exhausted or stiff when you wake up
• problems with thinking, concentration and memory (brain fog)
• symptoms getting worse after physical or mental activity, and possibly taking weeks to get better (also called post-exertional malaise, or PEM)

Some people with ME/CFS may also have pain in different parts of the body or flu-like symptoms, such as high temperature, headache and aching joints or muscles.

The symptoms of ME/CFS are similar to the symptoms of some other illnesses, so it’s important to see a GP to get a correct diagnosis.

There’s no specific test for ME/CFS, so it’s diagnosed based on your symptoms and by ruling out other conditions that could be causing your symptoms.

The GP will ask about your symptoms and medical history. You may also have blood and urine tests.

The symptoms of ME/CFS are similar to those of many common illnesses that usually get better on their own.

A diagnosis of ME/CFS may be considered if you do not get better as quickly as expected.

While there’s currently no cure for ME/CFS, there are treatments that may help you manage the condition and relieve the symptoms.

Living with ME/CFS can be difficult. Extreme tiredness and other physical symptoms can make it hard to carry out everyday activities.

You may have to make some major lifestyle changes.

ME/CFS can also affect your mental and emotional health, and have a negative effect on your self-esteem.

As well as asking your family and friends for support, you may find it useful to talk to other people with ME/CFS.

ME Association is a charity that provides information, support and practical advice for people affected by the condition.