Appropriate ME Treatment

Debate between Carol Monaghan and Robert Goodwill

Thursday 24th January 2019 Commons Chamber

[Carol Monaghan]

Yes, ME receives far less research funding than other similarly prevalent conditions. That, I fear, reflects the attitude of some in the medical community who consider it to be behavioural rather than a pathological condition.

[Mr Robert Goodwill (Scarborough and Whitby) (Con)]

Will the hon. Lady give way?

[Carol Monaghan]

I shall have to keep going. I apologise, but a great many Members want to speak.

The psychological view of ME led to the controversial and now debunked PACE trial—PACE is “Pacing, graded Activity, and Cognitive behaviour therapy; a randomised Evaluation”. The researchers reported that with cognitive behavioural therapy and graded exercise therapy—in which patients were encouraged to attempt increasing levels of exercise—approximately 60% of patients “improved” and 22% “recovered”. The treatments were labelled safe. Patient groups, however, were saying the opposite. Many who were able to walk when they embarked on a course of graded exercise dropped out of the treatment in wheelchairs or bedbound. Furthermore, patients were pressurised to describe improvements that they did not feel. As the trial progressed and the results did not meet the authors’ expectations, they simply lowered the threshold to define improvement. In some cases, those whose condition had deteriorated were classed as “recovered”. That is simply not good science.

The recommendation of graded exercise has caused untold physical damage to thousands of people. In fact, a 2018 survey found that 89% of ME sufferers experienced worsened symptoms after increasing activity. If graded exercise were a drug, it would have lost its licence.

The blatant ongoing refusal to accept ME as physiological doubtless explains the lack of proper research. Of course it is the Medical Research Council that allocates funds, but the Government can demonstrate their true commitment to improving the lives of ME sufferers. The Scottish Government have committed £90,000 for a PhD scholarship to support research into the causes, diagnosis and treatment of ME, and I would ask that the UK Government follow this lead.

During the debate in June, the Minister for public health, the hon. Member for Winchester (Steve Brine), who is in his place, said that £2.62 million had been spent on ME research since 2011. Let me be very clear: this money was spent on behavioural studies. We need money to be spent on biomedical research, and we are looking for a solid commitment from the Minister.

Until we have developed effective treatments, however, we must ensure suitable care plans are in place to respond to patients’ varying needs. Many US agencies are now removing their recommendations for graded exercise. However the National Institute for Health and Care Excellence guidelines continue to advocate this, despite patient surveys consistently indicating its harm. The risks are not acknowledged in the guidelines, undermining patients’ ability to give informed consent, and some patients are being threatened with being sectioned if they do not commit to a programme of graded exercise.

[Mr Goodwill]

Will the hon. Lady give way?

[Carol Monaghan]

Very briefly.

[Mr Goodwill]

Many consider the NICE guidelines to be completely inappropriate. Does the hon. Lady agree that the timescale for that review, which will end in 2020, is far too long for these patients?

[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.

Childcare for Fostered Children

Debate between Carol Monaghan and Robert Goodwill

Tuesday 19th December 2017 Westminster Hall

[Mr Goodwill]

I am happy to. There are two situations here. There are the parents whose child is already in a nursery and who need to update and renew their code. We have engaged in communication, including by sending text messages to parents, to encourage them to do that. The nurseries themselves have been on the frontline of getting this to happen. Many of the children starting in January are already in paid-for places at the moment. It is very important that we continue to stress to parents that this is available to them. I am pleased that the uptake is in line with—and, indeed, exceeds—our expectations.

Hon. Members raised the issue of whether foster carers will fall foul of the spare room subsidy, as we like to call it on this side of the House. Foster carers are permitted to have a spare bedroom for the year following their approval or where they have a foster child within a year. That is not something that foster carers should worry about. I hope that allays the fears of anyone who has heard that.

[Carol Monaghan]

It is useful to hear that from the Minister, but I talked about when there are siblings involved. There are sometimes two, three or four children. How will that impact foster carers if they are allowed to have one spare room?

[Mr Goodwill]

Some foster carers specifically specialise in taking sibling groups. That is taken account of, in terms of the bedrooms that are available, to allow that person to take up their fostering places.

The hon. Member for Wigan, who instigated the debate, made a point about the cost of delivery and how many would benefit. I agree that the number of children who may be eligible is likely to be relatively small, given that we are talking about three-year-olds only. It would not be appropriate in every case and we want to ensure that our discussions with local authorities, The Fostering Network and others help us understand that further. We want to move as quickly as possible to delivery, which is why we will be continuing engagement in the new year.

A very important point was made about foster carer recruitment. It is right that foster carers get the support they need to meet the needs of the children they look after, including flexibility to work when that is right for the child. As I mentioned earlier, we have introduced a foster family-friendly employer policy, and the national fostering stocktake will look at recruitment and retention and will report at the end of the year. The message I get from social workers up and down the country is that when we look at the numbers of foster carers, we appear to be in a reasonably good position, but for certain specialisms—large sibling groups, children with particular needs or disabilities—we need to ensure that we have the foster carers in the right place with the right skills.

I will talk a little about the kinship care children, who were mentioned by one contributor to the debate. We want children in foster care to be able to take up the additional hours when it is in their best interests to do so. That may well be appropriate in kinship care arrangements with approved foster carers. However, it would not be appropriate in every case, which is why we have said that we need to do further work on how we deliver this, as in the other cases.

Oral Answers to Questions

Debate between Carol Monaghan and Robert Goodwill

Monday 6th March 2017 Commons Chamber

[Carol Monaghan (Glasgow North West) (SNP)]

My constituent, Robert Makutsa, who is a well-known figure on the Scottish music scene, has now been in detention for 38 days, which is taking a brutal toll on his mental and physical health. I wrote to the Minister for Immigration on 16 January, but have yet to receive a response. Will he now meet me to discuss Robert’s ongoing detention?

[The Minister for Immigration (Mr Robert Goodwill)]

We do not, as a rule, comment on individual cases, but I would be more than happy to meet the hon. Lady as soon as possible.