Universal Credit Bill

Baroness Scott of Needham Market Excerpts

2nd reading & Committee negatived & 3rd reading
Tuesday 22nd July 2025 Lords Chamber

[Baroness Scott of Needham Market (LD)]

My Lords, I have a long-standing interest in ME—chronic fatigue syndrome—having seen at first hand its awful impacts on people’s lives. It is good to be able to say something this evening, because today we saw the publication of the long-awaited delivery plan on ME. It is very welcome to see that. The Ministerial foreword says that we need

“a better understanding of the condition”.

I think patients with ME would certainly agree.

For context, an estimated 400,000 people in the UK are living with ME, and around a quarter of those are disabled to the extent that they spend most of their lives in bed. The remainder have symptoms on a very wide spectrum. As we heard from the noble Baroness, Lady Brinton, it is estimated that around 381,000 people have serious post-viral symptoms that have lasted for more than two years as a result of long Covid. Long Covid is not the same as ME, but there are some similarities.

The sad truth is that for many people ME is a lifelong condition. Its severity and impact vary enormously, not just between individuals but for the same individual, both over the long term and as part of a pattern of symptoms in the short term. Flare-ups are common, relapses occur, and it is entirely unpredictable.

For claimants, that means tasks that can be completed on some days cannot be completed on others, or simply cannot be sustained. I had a look at the training module for assessors, which says, “This training will take you approximately 30 minutes to complete”. The training is not bad, but I suggest to the Minister that 30 minutes is wholly inadequate to train an assessor in determining the condition of someone who is presenting such a complex set of conditions.

The delivery plan, which I referred to, says that we need

“to ensure that … the right decisions are made the first time”.

Amen to that, but the briefing from Scope tells us that around 49% of universal credit decisions reaching appeal are overturned. I cannot help but wonder whether that is related to the level of training on the part of the assessors. It would be very good if the Minister could say a word or two about that.

From April next year, new claimants will get a reduced limited capability for work rate, even if they have the most severe form of ME. Although it is lifelong and often seriously disabling, because it fluctuates and has an uncertain prognosis, many people will simply fail the “severe, lifelong condition” criteria. Many will not reach the strict “no improvement expected” test and thus will be locked out of the enhanced support.

Current regulations refer to

“the majority of the occasions on which the claimant … attempts to undertake the activity”.

The new regulations refer to “all occasions”. That is highly problematic for anyone with a fluctuating condition. I am talking this evening about ME, but we have heard from many other organisations and from individuals who have fluctuating conditions.

Freezing for four years means that disability support will not rise with inflation while other basic costs such as food and energy keep rising. It is a fact that many ME patients carry on working—life is tough, but they do it—and there are many others who aspire to work. They want to recover enough to one day go back to work, but it is complex and unpredictable. Their general health and well-being are key if they are to get back to work. Being pushed into poverty by measures in the Bill and by other measures will simply further disadvantage people with this condition.

Although not in the Bill, there is consultation on removing the health element of universal credit for under-22s. That is causing widespread concern, particularly among families and carers of young people with ME. The median onset age for ME is 15.

I agree with the comments made by Steve Darling, my colleague in the House of Commons, that the key to achieving the Government’s aspirations for welfare reform is genuine engagement with the people affected. I say to the Minister that, from reading the briefings from the organisations, it is very clear there is a huge gulf between the picture that she has painted today and the understanding of the organisations, and, perhaps even more importantly, the testimony from many hundreds of people who are now desperately worried about what the future holds for them. We need collectively to do much better to offer them not just a financial leg-up but some reassurance that we have their back.