The UK's only dedicated hospital-bed service for people with ME is to close within the next month or so because too few patients are being referred to it from around the country, Barking Havering and Redbridge University Hospitals NHS Trust confirmed yesterday evening (Tuesday).
The decision to close the inpatient unit at the Queen's Hospital, Romford, Essex, was condemned by The ME Association as “completely unacceptable”.
About 250,000 adults and children in the UK have ME, which is also called Chronic Fatigue Syndrome. The charity's medical adviser, Dr Charles Shepherd, said about a quarter of everybody diagnosed with ME/CFS were housebound, bedbound or needed to use wheelchairs at some stage in their lives.
“The closure of this vital service means that there will now be nowhere in the UK for people severely affected to obtain this type of clinical assessment and management and will perpetuate the neglect of this group of patients. It is completely unacceptable”, he said.
“We are also extremely concerned at apparent failures to consult fully over the closure. The Trust itself acknowledges inadequacies in its consultation procedures.”
The decision was announced in a statement dated July 8 – but only released yesterday evening – by the NHS Trust.
A Trust spokesperson said:
“Our review identified that NHS commissioners would like to care for patients with CFS/ME closer to home, rather than them coming into hospital here in Romford. As a result, we will look to use the 2-5 CFS beds we currently have to provide improved neuro-rehabilitation for patients in our local area instead.
“At the moment, many local people who have head/spinal injuries have to wait some time for specialist treatment or travel a long distance away.”
The outpatient clinic will continue.
On this, the trust said: “We heard from many patients and their representatives that they value the service Queen's has offered for CFS. As a result, we will look to continue to offer a neurological assessment and specialist occupational therapy service for CFS as an outpatient service.”
The matter was considered by the trust last Wednesday (July 6) when it rejected two other options – continuing with both inpatient and outpatient care or cancelling both services completely.
According to internal reports seen by the ME Association, there were only 14 new admissions to the inpatient service in the last financial year when the service cost £937,000. And, while eight CFS beds were moved from Oldchurch Hospital when the service transferred to Queen's, only 3-4 of these beds had been used in the last year.
The retirement of the lead consultant, Professor Leslie Findley, and an associated specialist and the heavy dependence on specialist therapy and counselling staff – in many cases expensive agency staff – were also factors.
The trust said 26 emails, four letters and an online petition signed by 1,190 people were received when the future of the service was put out to review. A smaller number of representations were made in confidence.
One report revealed that there had been “some criticism” of the nature of the review – with some patients complaining that it had been difficult to respond within the six weeks allowed, there had been inadequate publicity and that the board appeared to have pre-empted the decision by announcing it at a meeting four months earlier.
And staff at Queen's complained that too little effort had been made either to replace the associate specialist or find a new lead consultant, after Professor Findley decided to reduce his hours in January.