Mr Blackburn told Exeter Coroner’s Court that such a placement would have been made easier to obtain had Boothby O’Neill been suffering from an eating disorder or mental health problems.
In an email written to an NHS colleague a few weeks before her death, and submitted in evidence to the inquest on Tuesday, Mr Blackburn stated: “If [Ms Boothby O’Neill] is admitted then it would likely be a long admission unless there is a plan to get her transferred somewhere else once stabilised.
“I expect that placements at specialist ME units are very hard to get, if this was treated as an ED [Eating Disorder]/MH [Mental Health] presentation then it might be easier to get her a long term bed.”
Mr Blackburn, who did not see Boothby O’Neill in person, told the hearing he feared she would go into rapid decline if she was treated at home by her mother, administering nutrition via syringe every couple of hours, with no specialist care.
“If there is no admission somewhere soon there is going to be a tragic outcome,” he wrote in his email.
However, Mr Blackburn also said his team rarely carried out home visits because of a lack of funding and long waiting lists. Last week, Dr David Strain, a consultant and ME expert who reviewed Boothby O’Neill’s case for the RD&E, warned the inquest there would be “more Maeves” if the NHS did not drastically improve its approach to the condition.
He said that even now there are no hospital wards in the country specifically designed to treat patients suffering from ME and that “the level of research for this condition is woefully inadequate”.
The inquest has also been told about a culture of disbelief among some senior NHS professionals who believed ME is a mental and not physical illness.
Boothby O’Neill had suffered with ME since her teens, but her illness became more serious in her mid-20s, with her condition deteriorating sharply in the last seven months of her life.
She was admitted three times to RD&E over the course of 2021, but she refused a fourth admission because no treatment was available to alleviate her condition.
Boothby O’Neill wrote an email in June 2021 begging her GP, Dr Lucy Shenton, to help her live, after her hospital “didn’t do anything to help”.
In it she stated: “I know you are doing the best for me but I really need help with feeding. I don’t understand why the hospital didn’t do anything to help me when I went in. I am hungry. I want to eat. I have been unable to sit up and chew since March. The only person helping me eat is my mum. I cannot get enough calories from a syringe. Please help me get enough food to live.”
Dr Shenton told her family that she had “never seen anyone so poorly treated as Maeve was”.
ME, also known as chronic fatigue syndrome, is a debilitating disease that affects the nervous and immune systems and energy production, making it difficult to perform physical and mental tasks and causing severe pain and fatigue.
Doctors have struggled to find any cure for the disease, which is estimated to afflict at least 250,000 people in this country, if not many more, because there is no agreement over what triggers the condition.
While there is no cure or even a test for ME/CFS, the NHS says there are treatments that may help sufferers manage the condition and relieve their symptoms.
These include advice on making the best use of what energy a patient has, and medicine to control symptoms such as pain and sleeping problems.
The inquest continues and is due to last a second week.
