Family calls for feeding change to save Exeter ME patient

The family of a woman with severe myalgic encephalomyelitis (ME) fear she could die from starvation if her treatment is not changed.

Alice Barrett, 25, is at the Royal Devon and Exeter Hospital (RDE) and cannot sit upright and feed herself.

Her family said they have taken expert advice and claim Ms Barrett should be tube fed lying down.

They want the RDE Trust to deviate from a policy of tube feeding patients at an angle of 30 degrees to avoid choking.

A spokesperson for the RDE Trust said it was a "deeply upsetting time" for the family and "the complete focus of Alice's clinical team is to provide her with the safest possible care".

They added the team is "drawing on NICE (National Institute for Health and Care Excellence) guidance and the expertise of national specialists to do this".

Ms Barrett was diagnosed with ME in November 2020 and had the disease moderately, before a major deterioration at the end of April 2022.

She has been in hospital for the last three weeks.

Her sister Rosie Barrett said: "She loved life and had many friends. She was a generous, kind and a passionate person."

She claims her sister is only getting 600 calories a day on the current feeding plan and that she told her earlier this week "her body is starving".

She said: "There will be a devastating long term impact on her health if she has to be at an angle.

"All her symptoms would get worse and she is at such a critical point at the moment that her body would start shutting down.

"We are taking too long to actually get a feeding plan in place for Alice. Her body will shut down and we will miss the boat."

The family has spoken to Dr William Weir, who has helped develop clinical guidelines and has experience of treating severe ME.

He said: "They [patients] tend to want to lie flat to circulate blood volume and there is scientific evidence from a number of patients that show this to be the case.

"In the first instance the important thing for any patient in this situation is to feed them."

A petition started by the Barrett family online to change the way she is being fed has reached more than 10,000 signatures.

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