On Tuesday 22nd July, Members of the House of Lords will debate the Universal Credit Bill (previously the Personal Independence Payment and Universal Credit Bill), a piece of legislation that has generated significant concern across the chronically ill and disabled communities. Two weeks ago, Stripy Lightbulb CIC submitted a request to Lords members to raise four specific issues during the debate. We can now confirm that three of those four points, numbers 2, 3 and 4, will be raised.
While this is a welcome development, it’s important to understand the limitations of the process. The Bill has been classified as a Money Bill, which restricts the scope of parliamentary scrutiny in the House of Lords.
A Money Bill is defined as legislation dealing solely with national taxation, public money, or loans. Once passed by the House of Commons, it must be sent to the Lords at least one month before the end of the session. If the Lords do not pass it without amendment within one month, it automatically becomes law.
Crucially:
- The House of Lords cannot amend a Money Bill.
- There is no committee stage or detailed scrutiny.
- The debate is limited to raising concerns and placing them on the record.
This means that while points 2, 3 and 4 will be acknowledged during the debate, they cannot be debated in full or lead to amendments, a significant procedural barrier given the seriousness of the issues involved.
The following concerns will be voiced during Tuesday’s session:
2. Systemic Bias in DWP Training
Internal training materials for DWP assessors continue to misrepresent M.E./CFS. Embedding this misinformation into training creates a systemic bias that undermines fair assessments. We understand this is the case with other chronic fluctuating illnesses too.
3. Ignoring the Post-Viral Reality
The Bill appears to overlook the long-term disability implications of Long COVID. Around 50% of Long COVID cases meet the diagnostic criteria for M.E./C.F.S., and 75% of people with M.E./C.F.S. are unable to work. Our 2022 written evidence (JES0075) warned of the economic impact of failing to support this group. The current policy direction suggests a narrowing of access rather than preparation.
4. Unrealistic Diagnostic Barriers
The Bill’s emphasis on NHS diagnosis presents a major obstacle for patients with poorly understood conditions. Due to decades of underfunding in research and specialist services, many are forced to seek private care. This requirement effectively penalises those already underserved by the system.
While we would have preferred these points to be debated in full and considered for amendment, we recognise the value of having them formally raised and recorded. This ensures they become part of the legislative history and can be referenced in future policy discussions, legal challenges, and public discourse.
Stripy Lightbulb CIC will continue to monitor developments and provide updates as the Bill progresses. We remain committed to ensuring that the lived experience of people with M.E./C.F.S. and other fluctuating conditions is reflected in policy decisions.
