Carla Naoum's father is unhappy with care she is receiving at West Middlesex University Hospital.
Carla Naoum's father is unhappy with the care she is receiving at West Middlesex University Hospital, saying she now weighs only 5st 9lbs
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. 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.
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". 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.
He has told BBC London much of the guidance for pain management in ME patients refers to other NICE guidance for neuropathic pain but is clear about the need to taper off opioids like oxycodone. 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.
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. "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.
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