The Times reports on two hospitalised people with severe and very severe ME/CFS whose families say they are at risk of death through malnutrition as the healthcare professionals are not aware of the nature of their conditions. This article is behind a paywall but can be seen from the link below. Dr Charles Shepherd, Honorary Medical Adviser to the ME Association comments below on this report.
**Trigger Warning – Upsetting Content **
By Kat Lay, The Times Health Editor
Alice Barrett, 25, has severe myalgic encephalomyelitis (ME) and is being cared for by Royal Devon University Healthcare NHS Foundation Trust. Her father, Mark, said that doctors were ignoring advice from family and ME experts on how best to treat her. “Alice will die. And we haven’t got much time at all,” he warned.
Barrett is being treated at the same hospital as Maeve Boothby-O’Neill, the daughter of the Times journalist Sean O’Neill, who died of ME two years ago. Barrett needs to be fed via a tube, and the hospital has said it is NHS policy that she must be inclined at 30 degrees for this to happen. However, her family say her condition means she cannot tolerate being anything other than horizontal…
Meanwhile, relatives of Sami Berry, a 43-year-old mother of three, fear she is close to death in Royal Berkshire Hospital (RBH). Berry, a mother of three, has multiple illnesses including epilepsy, Ehlers-Danlos syndrome (EDS) and severe ME. “I am slowly watching my wife die in front of my eyes,” Craig Berry, her husband, said. “The doctors at the hospital are refusing to provide her with drugs that previously helped her regain nutritional levels. Her epilepsy has returned after three years.” He said that her NHS consultant had refused to take the advice of outside specialists in EDS…
A spokesman for Royal Berkshire Hospital said: “Our clinical teams are in ongoing talks with Ms Berry and her family about her condition and most appropriate treatment. We cannot comment on the specifics to preserve patient confidentiality. However, as a trust, our highest priority is always providing safe, appropriate and high-quality care to Ms Berry.”
Professor Adrian Harris, chief medical officer at Royal Devon University Healthcare NHS Foundation Trust, said: “ME is an incredibly complex and poorly understood disease. It is recognised that there is a global lack of evidence for the safe treatment and maintenance of people living with ME. This was highlighted in recent Nice guidance, particularly when it comes to those with severe ME. “The safety of all of our patients is of paramount importance to us. We are always focused on providing the best possible care and experience for all of our patients, in line with national clinical guidance.”
ME Association Comment
This is a distressing account of the way in which 2 women with severe and very severe ME/CFS are being treated in hospital. The new NICE Guideline on ME/CFS has laid down clear recommendations for people who are severely and very severely affected, including how they should be cared for by the NHS at home and when they have to be admitted to hospital.
We would strongly suggest that both hospitals get in touch with ME/CFS specialists within the NHS, and with charity experts, so that appropriate care and support can be determined. Enough is now known about this neurological condition for clinicians to be able to provide a high standard of care and management advice.
While individuals should receive care that is tailored to their needs, having additional diagnoses like epilepsy, PoTs, and EDS, is not uncommon for those with ME/CFS and each should be treated accordingly. To hear of the distress from the families of Alice and Sami is deeply shocking.
We hope that The Royal Devon University Healthcare NHS Foundation Trust and The Royal Berkshire Hospital will deliver the care and support that is clearly required, and we wish both families the very best.
Dr Charles Shepherd
Trustee and Hon. Medical Adviser. The ME Association.