Father of woman with ME/CFS scared she will “die in hospital”

A man says he is terrified his daughter will die in hospital due to what he says are failures in care by NHS staff.

Pierre Naoum, 62, from Hounslow in west London, says his daughter Carla, 23, who was diagnosed with myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), is in severe pain and now weighs about 5st 9lbs (35kg) – down from 8st 3lbs (52kg) – after being admitted to West Middlesex Hospital due to problems with her feeding tube.

Even though there are no ME/CFS specialists at West Middlesex University Hospital (WMUH) in Isleworth, west London, Mr Naoum says a psychiatrist assigned to oversee her care has insisted on removing accommodations for her condition such as reduced light, has suddenly reduced her opioid dosage to nothing, and told them she needs to “calm down”.

A spokesperson for Chelsea and Westminster Hospital NHS Foundation Trust said it was working “alongside Carla and her family to provide the best possible care and support”.

The BBC has gained Carla’s consent for her parents to tell her story.

Warning: This article contains details that some readers may find distressing

The NHS says ME/CFS is a long-term condition with a wide range of symptoms including severe fatigue, chronic pain and cognitive issues – and Carla is towards the upper end of symptom severity.

Mr Naoum said his daughter used to be “a normal girl” who loved school and was “quiet, intelligent”, but “full of life”.

“Twenty-four hours she would have her face smiling; now she has not had a smile for two or three years,” he told BBC London.

After Carla was diagnosed by specialists in Ashford and St Peter’s Hospital about eight years ago, she was treated at University College Hospital on a specialist ME/CFS ward for young adults until she became too old to qualify for the service and was discharged.

Other NHS hospitals and services have tried to treat her, but Mr Naoum says they told him Carla’s condition was too severe to be handled within their service and also discharged her.

During the pandemic Mr Naoum says Carla’s condition “dramatically deteriorated” and she now struggles to see, speak, move and eat without pain, needing strong painkillers to get through the day.

Since January, Carla has required a nasogastric feeding tube but he says there were repeated delays in changing her tube and Carla was experiencing extreme pain, screaming and vomiting when she was fed.

The family took her to WMUH in March when her tube had not been changed for almost six months by another service.

Mr Naoum says he questioned the quality of care at WMUH when a staff member read Carla’s notes soon after her admission and asked him if she “screamed all the time”, to which he replied “only if she is in pain”.

Shortly afterwards Mr Naoum says the hospital transferred oversight of her care to a hospital psychiatrist, and he alleges several “serious mistakes” followed.

The first of these came when the NHS team changed her feeding tube to one “thicker than the first one” – from a size six to a size 10 – and increased the amount she was fed from almost nothing to 1.5 litres within a week.

Mr Naoum said his daughter “started to scream, scream, scream” from the “pain of the tube, pain of the sudden huge quantity, with the stress”.

The team also altered the method and dosage of her lorazepam and oxycodone pain medications, injecting them all at once rather than via tablets spread out across the day.

Shortly afterwards Mr Naoum said his daughter suddenly “lost consciousness for about six hours” and then the psychiatrist decided to stop the medications altogether, “straight away, suddenly”.

Mr Naoum says this is against National Institute for Health and Care Excellence (NICE) guidelines for drug withdrawal.

After three days without these medications, Carla was losing consciousness “every day” for up to eight hours and it was only at this point her medication was reintroduced, at a dosage 75% lower than before.

Mr Naoum says when he challenged the psychiatrist about this, he and his wife were told Carla’s pain medication would not be increased because Carla’s pain would not respond to any medication and there was no painkiller that would stop her pain.

Dr Charles Shepherd worked in a variety of hospital posts and is a medical adviser to the ME Association as well as being a former member of the 2018-2021 NICE guideline committee, which helped develop the current guideline for ME/CFS.

He has told BBC London much of the guidance for pain management in ME patients refers to other NICE guidance for neuropathic (nerve) pain but is clear about the need to taper off opioids like oxycodone.

“As far as withdrawal or changing pain medication, then this always has to be done in a very sort of gradual, step-wise way,” he says.

“It is a gradual process and not a sudden process.”

Dr Shepherd says a lack of specialist ME/CFS treatment centres means patients with severe ME and feeding problems “are often being admitted to hospital under the care of a physician and a team who may well have no knowledge or experience of dealing with people with severe ME”.

Such ME/CFS complications are “being misdiagnosed as being an eating disorder and as psychological, instead of a physiological medical condition, so the treatment is then based on a psychiatric approach – and this is where things really run into problems,” he adds.

As part of Carla’s ME/CFS, she also experiences a painful sensitivity to light and sound, so her parents covered the window on the door and bed guardrails in her private room to stop the light coming in – but the psychiatrist took the covers down.

When Mr Naoum complained, he said the psychiatrist told him they needed to try leaving Carla like this.

Although Carla’s parents eventually replaced the covers, after several days they were removed again.

“Carla was screaming, screaming and she said to the to the doctor: ‘I am dying, please, my head will explode,’” Mr Naoum says.

On one occasion he says the psychiatrist and an assistant removed tape and red bags blocking light around Carla’s room blinds, while she groaned in pain.

When her parents asked the psychiatrist why the coverings could not remain, Mr Naoum says they replied it was impossible for the light in the room to be affecting her if she was wearing an eye mask, adding the light was not causing an issue and they should remove her mask altogether.

Mr Naoum says when they told the psychiatrist Carla cried when they tried to remove her mask, they responded by saying Carla also screamed when the team fed her through her nasogastric tube but they kept doing it anyway, so they had to do the same with light until she calmed down.

After several days with the covers removed Carla began losing consciousness again, Mr Naoum says, until she was having seizure-like episodes and passing out 10 to 20 times a day for nine days.

The BBC has seen videos of these episodes, including one where Carla is unconscious and not responsive to medical checks by staff, and another where her eyes roll back in her head, her face drops on one side, and she displays involuntary jerking movements for a short period of time.

Mr Naoum says it was not until a locum was called to the hospital, who advised staff the light and sound measures did not work with Carla, that the covers were reinstalled.

When asked if there is any NHS guidance stating ME/CFS is a psychological condition, NHS England referred BBC London to the current NICE guideline.

Dr Shepherd says in cases where doctors are convinced ME patients need to increase their tolerance or learn to calm their reactions, “I think they ought to read what we put in the NICE guideline”.

“One of the specific things we put in the NICE guideline was that people with this – especially at the severe end of the spectrum – are very hypersensitive to light, to sound, to touch, to movement, temperature, changes,” he explains.

“All these things must be taken into consideration if someone goes into hospital, so they really need to be in a very low-intensity environment.”

He adds that if a loved one or carer had already explained to medical staff “what is going to upset that patient, make them worse”, then “these things have to be taken into consideration” as advised in the NICE guideline.

Carla’s father says he and his wife have resorted to staying with their daughter as much as possible, because they fear what will happen to her if she is alone.

He is now calling for her to be moved to a hospital “where she can be treated well from this, and to respect her CFS”.

“I am worried. Every single day something always, always a new thing,” Mr Naoum says.

“I want to protect my daughter [and] they damage her life, they damage her future.”

BBC London put Mr Naoum’s concerns in detail to Chelsea and Westminster Hospital NHS Foundation Trust.

A spokesperson said: “While we cannot disclose any patient information or individual care plan, we continue to work alongside Carla and her family to provide the best possible care and support.”