ME: Treatment and Research

Debate between Liz McInnes and Carol Monaghan

Thursday 21st June 2018 Westminster Hall

[Carol Monaghan]

Indeed. Many people have written to me about their experience of GET, but some of the most upsetting examples are of children who were forced through a programme of GET and ended up with life-changing disabilities as a result.

[Liz McInnes (Heywood and Middleton) (Lab)]

I am grateful to the hon. Lady for mentioning my constituent, Merryn Crofts, whom I will speak about later. Merryn’s mum, Clare, said to me that Merryn was put on GET and that it made her condition worse. Everything that the hon. Lady says is backed up by the testimony that Clare gave me—I just wanted to share that with her.

[Carol Monaghan]

I thank the hon. Lady for her intervention. Merryn’s is not an isolated case, and neither are those of my constituents—I am sure that Members present have all heard constituents describe the same situation.

The PACE trial, which recommended CBT and GET, influences how health insurers and the DWP make their decisions. Insurance companies refuse to pay out unless a programme of GET has been undertaken, and many people who apply for benefits are told that they must carry out GET—or, indeed, that they appear well enough to work. PACE is unique in UK medical history, in that it was part-funded by the DWP. The links of some of its main authors to health insurance companies are troubling. One of those authors, Professor Michael Sharpe, states in his briefing for the debate:

“Several of the investigators had done small amounts of independent consultancy for insurance companies, but this was not relevant to the trial. The insurance companies played no part in the trial.”

I will leave hon. Members to make up their own minds about that.

Healthcare professionals worldwide are starting to take note. The US Centres for Disease Control and Prevention and the Health Council of the Netherlands have both abandoned GET. If those countries acknowledge the flaws of GET, why are ME sufferers in the UK having to fight so hard for similar acknowledgement? The ME community hopes that GET will not feature in the NICE guidelines for ME treatment after they are revised.

Some argue that CBT is provided as a treatment for many illnesses, including heart disease and cancer, and that ME patients’ rejection of it is irrational. The key difference is that cancer patients receive biomedical treatment in addition to CBT, rather than having CBT to the exclusion of biomedical interventions. Biomedical treatment for ME is woefully lacking. There are reports from the US that certain antiviral drugs improve the condition, but without properly funded research to identify biomarkers for ME, we do not have the answers.

Diagnosis is currently based on a patient presenting with known symptoms. Although there is no biomarker for ME, that does not mean there is no biomedical test for it. The two-day cardiopulmonary exercise test, which can objectively document the effects of exercise, could be used as a diagnostic tool. In simple terms, people with ME perform adequately or even well on the first day but have reduced heart and lung function on the second. That relates to the point made by the hon. Member for Alyn and Deeside (Mark Tami) about the DWP and the fact that someone’s presentation may be good one day but not the next.

That protocol involves two identical tests separated by 24 hours, the collection of gas exchange data and the use of an exercise bike to measure work output accurately. That type of testing reveals a significant performance decrease on day two among people with ME, in terms of their workload and the volume of oxygen they consume before and during exercise. Results from a single test may be interpreted as deconditioning, which may lead to harmful exercise being prescribed. However, the objective measurements of the two-day test remove the issues of self-reporting bias and the question of effort—in other words, the results cannot be faked.

Those results support the strong and consistent patient evidence of the harm that can occur as a result of inappropriate exercise programmes. However, there are moves afoot to categorise ME as a psychological condition. NHS guidelines on medically unexplained symptoms class ME as such a condition. The Royal College of Psychiatrists states:

“Medically unexplained symptoms are ‘persistent bodily complaints for which adequate examination does not reveal sufficient explanatory structural or other specified pathology.’”

Education, Skills and Training

Debate between Liz McInnes and Carol Monaghan

Wednesday 25th May 2016 Commons Chamber

[Liz McInnes]

I do not agree with the hon. Gentleman, and that is certainly not what is going on in my constituency, which I will elaborate on. The number of part-time students and mature students applying to go to university has plummeted since the introduction of tuition fees.

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

I cannot let the comment about Scotland pass. It is true that if we look at direct routes into university, Scotland has slightly lower numbers going from disadvantaged backgrounds, but if we look at more interesting routes into university through further education, Scotland is doing extremely well with children from disadvantaged backgrounds.

[Liz McInnes]

I thank the hon. Lady for that intervention. I will go on to talk about further education, which is a key part of my speech.

The Minister for Universities and Science is no longer here, but I would like to point out that Labour is not opposed to new universities, despite the Minister’s assumption. For his information, it was the Tory press that dubbed University College London “cockney college”, not anybody from the Labour Benches.

What was missing from the Queen’s Speech was the vital link between schools and universities—further education. Not a mention of it, yet it provides a vital service to our young people, giving them opportunities, skills, training and the possibility of using FE as a stepping stone to higher education. Hopwood Hall College in my constituency, which serves Heywood and Middleton and the wider borough of Rochdale, has its own particular issues, none of which were addressed in the Queen’s Speech. The lack of literacy and numeracy skills is a massive issue in the borough, and some students require an extra year at Hopwood Hall to improve on English and maths, but funding reduces once the learner hits 18, with no allowance made for that catch-up year.

The borough of Rochdale was one of the most affected by the cut to education maintenance allowance and by reduced payments to disabled learners. At this stage, I should declare an interest: my partner used to teach at Hopwood Hall College. When the coalition Government scrapped EMA, my partner had students coming to see him to say that, although they were enjoying the course and the opportunities it gave them, they simply could not afford to keep attending—without EMA, they could not afford the bus fare to college. What a lamentable state of affairs to leave our students in—denied an education because of the cost of a bus fare. With the area review of post-16 education, the problem is likely to be exacerbated, as courses are forced to combine. Some students could find themselves having to travel 30 to 40 miles to access their college courses.

The Greater Manchester area review is causing great concern in the Department for Business, Innovation and Skills and the Department for Education because of ongoing delays. The chair of the steering group—the chief executive of Tory Trafford Council—warned that the process would lead to

“a fragmentation of the colleges in Greater Manchester”.

The borough of Rochdale also has one of the lowest rates of people going to university. Replacing maintenance grants with loans, and the thought of a £50,000-plus debt, have served as a massive deterrent. Students in England leave university with more debt than students anywhere else in the English-speaking world. They now owe an average of £44,000 on finishing, while Americans run up half that debt, and Canadians a third of it. When maintenance grants are abolished, the poorest students will end up owing more than £50,000, or over half the average price of a terraced house in my constituency.

How many working-class parents will talk their children out of ending up with such a huge debt? Well-off parents, who can afford to pay private school fees, will simply see the cost of a university education as a continuation of those fees, and their children will continue climbing the ladder, untroubled.

While we are talking about student debt, I would like to mention the proposal in the BBC White Paper to close the so-called iPlayer loophole. Doing that will force students living away from home who do not have a television but who access online BBC content to spend yet more money purchasing a yearly TV licence—as if our students were not in enough debt. A Change.org petition against the proposal, which was started by a student at Loughborough University, has now reached a staggering 16,847 signatures. I have asked the Culture Secretary to consider the particular situation students are in; so far, he has evaded my questions, but the petition shows the strength of feeling among students and their families, and I hope he will agree to be bound by it.

Hopwood Hall College provides many innovative courses to help students who aspire to go to university. However, while students continue to face ever-mounting debts, there will be no answer to the social mobility problems in my constituency. The formation of new universities is not the solution, and the Government’s own assessment shows that the number of FE college students applying for higher education will be lower than it is at present.

Further education is sandwiched in the middle of schools and higher education, with key stages 4 and 5 massively underfunded. Yet Hopwood Hall College and many FE colleges like it continue to succeed, seemingly against all the odds. We have 4,000 people in the borough doing vocational courses or A-levels who would previously have travelled outside the borough. We also have a lower level of NEETs—people not in education, employment or training—than neighbouring boroughs. Demand for courses in science and technology, and in health and social care, is increasing, and the college is responding to this, but there is a real challenge across the FE sector in attracting good teachers, especially in maths.

It really is time that this Government recognised the essential role of the FE sector and took some genuine action to address gaps in funding and the problems of recruiting and retaining good-quality teachers in order to achieve their stated aim of educational excellence for all—and that includes for my constituents in Heywood and Middleton.