Appropriate ME Treatment

Matthew Offord Excerpts

Thursday 24th January 2019 Commons Chamber

[Carol Monaghan]

Actually, NICE has taken a very positive step in reviewing the guidelines—it is listening to the community—but until they are published in 2020, we need NICE to make a public statement about the potential harm of graded exercise; patients must be made aware of the risk. It is a big ask to request that the Minister talks to NICE and encourages it to make that statement, so that this information can be added to the current guidelines while we are waiting for updated guidelines in 2020.

Care programmes for people vary greatly. Some with ME describe medical professionals who are sympathetic, but others talk of being disbelieved and forced down treatment paths to which they have not consented. Coverage of ME in many medical textbooks remains potentially misleading and inadequate, even non-existent. Health professionals must be equipped with clear guidance on diagnosing ME early and accurately, and with appropriate basic management advice.

At the end of last June’s debate, the Minister for public health resolved that

“as a result of the debate I will redouble my efforts to”

raise awareness among medical professionals concerning ME, and said that

“as part of my role as Minister for primary care, all GPs certainly should be aware of ME”.—[Official Report, 21 June 2018; Vol. 643, c. 229WH.]

That was a welcome statement; I would now like to understand what concrete steps have been taken since that promise was made. Furthermore, I would ask the Minister to ensure that ME clinics and treatment centres are aware of the risks of graded exercise and are not forcing this on patients.

Some of the worst cases we hear about are children with ME. ME affects an estimated 25,000 children in the UK. Many experience significant distress when disbelieved by medical and teaching staff, often when these professionals do not understand how ME affects the child’s ability to attend school.

[Dr Matthew Offord (Hendon) (Con)]

Is the hon. Lady aware that one in five families looking after children with ME have been referred to child protection services?

[Carol Monaghan]

Yes. The statistics are terrible, but I want to describe one such case, which is really quite harrowing. It involves a girl, B, whose name cannot be disclosed. B became ill at the age of eight. A diagnosis of probable ME was made, but it was suggested that the underlying issues were psychological. To show willing, her parents took her to a child psychiatrist, who then involved social services. B’s parents were warned that if they did not fully comply, child protection proceedings would be initiated. Social services specified graded exercise, despite being warned of the dangers. As a result, B deteriorated rapidly until she became wheelchair-bound. Under threat of court action, B’s parents were then forced to take her to a children’s hospital, having been warned that they were “not under arrest just yet.”

B’s parents found what they presumed to be a safer option in an ME unit run by a consultant who appeared to view ME as an organic illness, but this was disastrous. B arrived wheelchair-bound but still able to sit upright and read and write, but under the activity programme, she deteriorated. Her mother was banned from visiting, but other parents in the unit observed B unattended in the wheelchair, in constant pain, unable to sit upright, with her head hanging down the side and crying in distress. This treatment continued for five months. Her parents were threatened that if B did not progress, she would be transferred to a psychiatric unit or placed in foster care. Desperate, they turned to Dr Nigel Speight and the Young ME Sufferers Trust. B was finally allowed home, and her name was eventually removed from the at-risk register. However, by the age of 15, she was bedridden, paralysed, unable to feed or wash herself and utterly dependent on carers. Doctors, psychiatrists and social services all failed her when she was eight. As the hon. Member for Hendon (Dr Offord) suggested, this is the case for one in five families living with a child with ME.

A firm diagnosis of ME protects the child from these proceedings, but unfortunately, paediatricians are often reluctant to give this, simply because they do not understand the condition. This leaves the child open to social service intervention. Often, paediatricians phone a so-called expert on ME, who immediately prescribes graded exercise, without even seeing the child in person. I say to the Minister that this is a national disgrace and it needs urgent action. Children who are already blighted by ME must not be subjected to this trauma. I ask him to consider this issue with the utmost seriousness, and to give the House an assurance that parents will not be prosecuted simply for caring for a sick child.

ME has been disregarded for far too long, and it can be fatal. In the UK, there have been two patients, Sophia Mirza and Merryn Crofts, whose deaths have been attributed by coroners to ME. However, the actual number of deaths due to ME may be much higher, and we cannot wait for more. The ME community have waited decades for their voices to be not only heard but believed. The Government have the power to make radical changes, and I invite the Minister to meet groups of patients who would welcome the opportunity to describe their experience. Little progress has been made in the 20 years since the 1999 debate. Surely, Minister, in the 21st century we can do better for those suffering from this devastating illness.