Appropriate ME Treatment

Baroness Morgan of Cotes Excerpts

Thursday 24th January 2019 Commons Chamber

[Nicky Morgan (Loughborough) (Con)]

It was a pleasure to apply for this debate with the hon. Members for Glasgow North West (Carol Monaghan) and for Ceredigion (Ben Lake) and others. [Interruption.] How could I possibly forget the hon. Member for Ealing North (Stephen Pound)?

Like other Members, I will speak about my own constituents’ experiences. As we have already heard, so many Members are here on a Thursday afternoon to talk on behalf of their constituents. We held out for a debate on the Floor of the House, and we are debating not a “take note” motion but a substantive motion. This House debates many contentious issues, passions can run high and there can be many points of order, but hopefully we will see the House of Commons at its finest this afternoon as we do our job of bringing to the attention both of Ministers and of the wider public an issue of real importance that devastates the lives of our constituents and their families.

We have already heard about the issues of funding for biomedical research, and it is clear that, given the prevalence of the condition, there must now be an increase in funding not only to help advance our understanding of its underlying biology but to develop new diagnostic tests and better, more targeted treatments. The problems and dangers of graded exercise therapy and CBT have already been powerfully set out. My constituents have also called for NICE to take their concerns into account and to remove those treatments from its guidelines. We have heard the call for NICE to issue an immediate public statement on the harm that may be caused by the current guidelines for the period they remain active.

It is right that we want GPs and health professionals to know more.

[Paula Sherriff]

My constituent has to travel 40-odd miles to Manchester for treatment. With a condition such as ME, that is particularly distressing. Does the right hon. Lady agree that we need many more specialists throughout the country?

--- Later in debate ---

[Nicky Morgan]

I agree with the hon. Lady. We all know that resources may be constrained, but we want our constituents to be able to see specialists who really know about a condition. One of the most powerful things that we have heard is that not only are sufferers fighting a condition that makes them feel terrible, but they are not believed when they say what they are going through. That must compound the difficulties of the condition. Having a GP who not only believes them, but wants to help and understand, would make a huge difference. The same is true of other health professionals.

We have talked about children being affected. One of my constituents wrote to me to say that she had had ME since 2013, and had been left housebound. She added:

“As if having this illness wasn’t devastating enough, in 2016, my then 10 year old son became unwell and never got better, he has also been diagnosed with ME.”

We have heard today about the potential involvement of child protection services. In addition, some schools can deal with the condition, but some schools will struggle. I was contacted only this week, as the debate was being advertised, by another constituent. She talked about her daughter, Elisha, who is now 11 years old and has had ME for four years. Elisha has been discharged from the community paediatrician, physiotherapist and occupational therapist and left with no support or medical help, because there is no funding for paediatric ME care in Leicester or Leicestershire. She has missed most of her schooling in the last four years. Clearly, with children as well as with adults, people must be believed and the condition must be investigated. It is a considerable source of stress for parents and carers, but of course it has a negative effect on the child’s personal development and future life chances.

I have family experience of ME, but I want to pay tribute to the constituent who first brought the matter to my attention, Sarah Reed. Some Members, particularly Opposition Members, will know her as the wife of the former Labour MP, Andy Reed, who was my predecessor in Loughborough. Sarah has been a tireless campaigner for ME Action and for sufferers.

There are 250,000—a quarter of a million—sufferers of ME, or chronic fatigue syndrome, in the UK. With any other condition, we would not allow a situation in which people continue to struggle to have their voice heard, and the NICE guidance takes so long to be delivered. There are many examples, and it is time for the Government to respond.