Welfare Reform: One Major Win, More Work Ahead
July 2, 2025
Last night, MPs voted to approve the Welfare Reform Bill at its second reading - but not before campaigners secured a major victory.  After weeks of pressure from disability rights organisations, charities, and supportive MPs, the government has made a dramatic U-turn: Clause 5, the proposal to tighten PIP eligibility rules, has been withdrawn.
 
This is no small change. Clause 5 was the most punitive part of the bill, and its removal represents a huge concession by the government - both politically and fiscally. It was this clause that would have introduced a new rule requiring claimants to score 4 points in a single activity to qualify for PIP. Experts warned this could have stripped support from hundreds of thousands of people with complex or fluctuating conditions, including ME/CFS and Long Covid.
 
The ME Association Welfare Reform Project has worked closely with partners across the disability sector to expose the risks of this approach - and to amplify the voices of people with lived experience. Through public briefings, detailed policy submissions, and our national campaign survey, we made clear that these changes were unjustified, unsafe, and would deepen health inequality.
 
As part of this wider project, we have also been meeting with MPs and their representatives, disability organisations, and key stakeholders to engage, educate, and campaign against the proposals. These conversations have been central to building momentum and challenging the flawed assumptions underpinning the reforms.
 
Notably, Ella Smith, MEA Welfare Rights Consultant, was invited to meet directly with Stephen Timms, the Minister for Social Security and Disability, to challenge multiple aspects of the proposed reforms. She raised fundamental concerns about the treatment of fluctuating conditions, the logic behind the 4-point rule, and the wider risks to people with ME/CFS. These issues were heard - and have contributed to a major rethink.
You can read how this meeting went.
 
Now, Clause 5 is gone.
This wasn’t quietly shelved - it was dropped because the government was forced to listen. Ministers have now committed that no changes will be made to PIP eligibility, activities or descriptors until a full review has taken place. This review - the Timms Review - is expected to report by autumn 2026, and will be co-produced with disabled people and their organisations.
 
This is a landmark moment. Not only has the government backed away from the most harmful part of the bill, but it has conceded that major reform must start with the people it affects most. It is a direct result of coordinated pressure, evidence-led advocacy, and the power of collective voice.
 
What’s still in the bill?
Although Clause 5 has been removed, the bill still includes wide-reaching changes to Universal Credit. These include:

• Halving the UC health element for new claimants from April 2026
• Freezing the health element for current claimants in real terms
• A new “Right to Try” Guarantee (still being developed), which aims to let disabled people trial work without risking their benefits
• Over £1 billion in new employment support, including £300 million ringfenced for disabled people

These changes remain a serious concern. They risk entrenching a two-tier system, where the level of support someone receives depends on when they claimed - not how unwell they are. This will disproportionately impact people with fluctuating and poorly understood conditions like ME/CFS, many of whom already struggle to access consistent support.
 
What’s not in the bill: Unemployment insurance and the Work Capability Assessment
While the Welfare Reform Bill introduces major changes to PIP and Universal Credit, it’s important to clarify what the bill doesn’t cover.
 
There are currently no confirmed changes to contributory ESA or unemployment insurance in this legislation. The government has previously proposed replacing contributory ESA and new-style Jobseeker’s Allowance with a time-limited unemployment insurance model, but this remains at the consultation stage, with implementation unlikely before 2028/29. These proposals would require new primary legislation and are not part of the current bill.
 
Similarly, although the government has announced its intention to abolish the Work Capability Assessment (WCA), this change is also not included in the bill. Instead, the WCA is being phased out through administrative changes, with health-related support under Universal Credit expected to rely more heavily on PIP entitlement or a severe conditions exemption.
 
This presents a serious concern for people with ME/CFS and other fluctuating conditions. The WCA, while flawed, currently provides important protective mechanisms - particularly through Regulations 29 and 35 - for people who may not meet standard criteria but are nonetheless unfit for work. There is no clear legislative replacement for these safeguards, raising fears that many could fall through the cracks if PIP becomes the sole route to support.
 
The ME Association will continue to monitor and respond to any future developments around these proposals. We are particularly concerned about the lack of legislative detail on how people with fluctuating or invisible conditions will be assessed and protected once the WCA is removed.
 
These issues are not resolved - only postponed. We will remain vigilant.
 
Why the fight isn’t over: the risk of secondary legislation
While Clause 5 has been removed from the bill - which is primary legislation, requiring full debate and approval by Parliament - there is a real risk that similar proposals could be reintroduced in future through secondary legislation.
Secondary legislation (also known as delegated legislation or statutory instruments) allows ministers to make significant changes under the authority of an existing Act, without the same level of scrutiny or debate. It cannot be amended and is rarely blocked. This means that major changes to PIP — including those recommended by the Timms Review - could be implemented quickly and with minimal public or parliamentary oversight.
 
If the government decides to revive proposals like the 4-point rule after the Timms Review concludes in 2026, they could do so via secondary legislation - without a new bill, and without any guarantee of a meaningful vote. That makes the shape and governance of the review itself all the more important.
 
What happens next: the road ahead for the bill
Now that the Welfare Reform Bill has passed its second reading, it moves into the committee stage, where MPs will scrutinise each clause in detail and consider possible amendments. This stage is critical for shaping the final content of the bill, but it’s not the end of the process.
After committee stage, the bill will return to the full House of Commons for the report stage and third reading. At that point, further amendments can be made before MPs take a final vote.
If it passes, the bill then moves to the House of Lords, where it goes through the same sequence of readings, debate, and scrutiny. If the Lords make changes, the bill will ‘ping-pong’ back and forth between the two Houses until they agree on the final wording.
 
Once agreement is reached, the bill receives Royal Assent and becomes law. However, different parts of the bill may come into force at different times, depending on government decisions about implementation.
This means there are still several stages ahead - and multiple opportunities to push for improvements, raise concerns, and influence the detail. The ME Association will continue to engage throughout, making sure the voices of people with ME/CFS are heard at every stage.
We are calling for full transparency, meaningful co-production, and a review process that recognises the realities of living with ME/CFS, Long Covid, and similar complex conditions. We will also continue to highlight the democratic importance of how future changes are made - and to campaign against any attempt to push through reforms that harm disabled people via the back door.
 
This campaign victory builds on the ME Association’s wider policy work. As part of the Welfare Reform Project, we submitted detailed evidence to the Work and Pensions Select Committee and a formal response to the government’s Green Paper. Both documents highlighted the serious risks posed by the proposed reforms for people with ME/CFS and Long Covid and helped to shape public and parliamentary debate around Clause 5 and beyond.
 
This is not the end of the story - but it is a clear demonstration that campaigning works. The MEA Welfare Reform Project was created to ensure the voices of people with ME are heard at the highest levels. This week, they were.
 
Thank you to everyone who has written to their MP, shared their story, completed our survey, or supported this campaign. We will continue to speak out, stand firm, and fight for a fairer system - one that protects, not punishes.
 
Clause 5 is gone. Let’s keep going. We are proud to have campaigned so hard on this issue, and we will continue to ensure our community’s voices are heard every step of the way. #ListenToME #WelfareReform #DisabilityRights
 
You can check how your MP voted on the Bill below:
Vote Breakdown
 
Ella Smith
Welfare Rights Consultant,
The ME Association
Further Information

• The Guardian: How did your MP vote on the welfare reforms? | July 1st, 2025

•  Benefits  •  Government U.K. 
•  M.E. Association  •  MP 
•  National Newspapers  •  Parliament U.K. 

Proposed Welfare Reforms - ME Association’s Position Statement, 
Action for ME’s response to Government’s Spending Review. 
 
 
The ME Association (MEA) launch an urgent survey.
Fighting for Fairness: We Need Your Voice to Challenge Benefit Reforms
June 19, 2025
The ME Association has launched a major project to respond to the government’s proposed welfare reforms - and we urgently need your help.
By Ella Smith, Welfare Rights Consultant & Paul Jones, Policy and Public Affairs Consultant
 
The ME Association has launched a major campaign to respond to the government’s proposed welfare reforms - and we urgently need your help.
The government is planning significant changes to Personal Independence Payment (PIP) and the wider disability benefits system. These changes are likely to hit people with ME/CFS and Long Covid especially hard. Many risk losing their benefits due to new rules that do not reflect the reality of living what can be a fluctuating* (whereby symptoms are always present ranging in severity), and misunderstood disability.
We believe these reforms are unfair, unworkable, and deeply damaging to our community. That’s why we’re taking action.
*N.B. Where the use of the word ‘fluctuating' is used, this is to align with DWP terminology.
 
What the MEA is doing
We are working on several fronts to make sure the voices of people with ME/CFS and Long Covid are heard. We are:

• Submitting evidence to the Work and Pensions Select Committee
• Responding in full to the Pathways to Work Green Paper consultation
• Meeting with MPs, policymakers, and key influencers
• Building a coalition with other charities, academics, and campaigners
• Engaging the media to raise public awareness
• To strengthen our voice, we need concrete, real-world data - and that’s where you come in.

 
Why your story matters
We’ve created a comprehensive survey to gather both personal experiences and detailed data about the benefits system with a particular focus on Personal Independence Payment (PIP) – the benefit that will be hit the hardest. We want to know:

• What benefits you receive - or have been denied
• How many PIP points you were awarded for each activity
• Whether you had to appeal, and if so, what happened
• How PIP affects your ability to work
• Whether you’ve been put off applying for PIP and your reasons
• If you had access to help with the process, and how easy or difficult that was

This information is vital. It will directly inform our submissions to government and help us challenge flawed policies that fail to recognise the lived experience of people with ME/CFS and Long Covid.

Take survey
 
Why the focus on PIP?
We know that many people with ME/CFS and Long Covid also rely on other benefits like Employment and Support Allowance (ESA) or Universal Credit.  However, our immediate focus is on Personal Independence Payment (PIP) because the government’s proposed reforms are centred on tightening PIP eligibility and using it as the new gateway to other support - particularly after the Work Capability Assessment is scrapped.
These changes could cause thousands to lose both PIP and the health element of Universal Credit. That’s why we’re gathering detailed evidence now - to defend access to PIP and stop a domino effect that would put lives, health and livelihoods at even greater risk.
 
Why we’re running a separate survey
You may have seen the Long Covid Support et al (2025) campaign and its excellent survey gathering personal stories about life with ME/CFS. We fully support their campaign and its aims. Our survey complements this work by focusing on a specific need: collecting detailed, technical data about benefits - especially Personal Independence Payment (PIP).
This includes information such as how many points people were awarded in each activity, whether they had to appeal, and how receiving (or losing) PIP affects their ability to work. These insights are essential for our submissions to government and parliamentary committees and will allow us to argue more forcefully and credibly on your behalf.
 
Take the survey - make your voice count
We need your help to amplify and build on this campaign. If you're sharing your experience or encouraging others to complete the survey, please use the hashtag #ListenToME on social media. It helps raise awareness, build momentum, and show the government just how many of us are affected. And don’t forget to include the survey link:

Link to Survey

Survey PDF Copy
 
Please don’t wait - the deadline for submitting evidence is fast approaching, and we need your input as soon as possible.
Together, we can push back. This is one of the most important policy moments in recent years to affect our community. With your support, we can push back against harmful changes, demand a fairer system, and work to ensure that no one is left behind.
 
Survey Information & Accessibility

• The survey has 47 questions with a range of multi-choice (required), free text spaces (which can be skipped) and form questions to submit information on Mobility and Daily Living Components
• The survey is in dark mode (where this is possible) to account for people who may have light sensitivity or have problems with the light from screens
• Survey Planet allows the survey to be paused after most questions, if using the same device. Please note: Questions asking for text need to be fully completed and submitted before pausing the survey.
• We have provided a PDF that allows you to preview the questions in advance. This can help you prepare for text options, should you wish to complete any free text questions.

 
 
The MEA explain their position
The ME Association’s Position Statement on the Proposed Welfare Reforms
June 18, 2025
By Ella Smith, Welfare Rights Consultant & Paul Jones, Policy and Public Affairs Consultant
 
The ME Association strongly opposes the series of reforms set out in the government’s Pathways to Work Green Paper.  We believe that the government will not achieve its objective to increase the number of disabled people returning to the labour market by implementing these harmful reforms.
We call on the government to extend and expand the Pathways to Work consultation process, to co-produce all reforms with stakeholders, and provide a full impact assessment immediately - before these proposals are put to a vote in the House of Commons.
The government's proposals, including increasing the conditionality threshold for PIP, threaten to erode vital support for people living with ME/CFS and Long Covid by failing to consider the impact of fluctuating* - where symptoms are always present but range in severity and impact on functional capabilities - and varying conditions.
 
If implemented, as currently outlined, these reforms would exclude many people with ME/CFS and Long Covid from the social security system: plunging more disabled people into poverty or further into poverty, worsen health outcomes, and drive more disabled people away from the labour market.
The ME Association will continue to engage with the government’s consultation process through to July 2025: maintaining a strong presence at Westminster; attending meetings with the Minister of State for Social Security and Disability; and continuing to brief parliamentarians who are concerned about the impact of these reforms on people living with ME/CFS and Long Covid.
We are currently drafting a response to the Green Paper consultation. In addition, we are one of a handful of organisations chosen by the Work and Pensions Select Committee to produce a written submission which will be delivered later today. We are committed to working with government and other key stakeholders throughout the consultation process.
We will publish online the Work and Pensions Committee submission next week, and the full response to the Green Paper consultation after 1 July 2025.
 
Please be assured - we will continue to stand against any reforms or measures that threaten the safety, dignity and wellbeing of people living with ME/CFS and Long Covid.
*N.B. Where the use of the word ‘fluctuating' is used, this is to align with DWP terminology.
 
 
 
MEA give Government’s Announcement
GOV UK Announcement: Welfare bill will protect the most vulnerable and help households with income boost
June 19, 2025
 
Additional protections for millions of vulnerable people on benefits are set to be written into law, under new measures being introduced to Parliament yesterday (18 June 2025).
GOV UK
GOV UK Summary

• New welfare legislation to ensure there are robust protections in place to support the most vulnerable and severely disabled.
• Nearly 4 million households to benefit from uprating of Universal Credit standard rate, the largest, permanent real-terms increase to basic out of work support since 1980, according to the Institute for Fiscal Studies (IFS).
• More than 200,000 people with most severe, lifelong conditions to be protected from future reassessment for Universal Credit entitlement.
• 13-week period of financial support for those affected by PIP changes as part of upcoming welfare reforms.
• Comes alongside £1 billion employment support package that will unlock opportunity and grow the economy as part of the Plan for Change.

 
Extracts
The Universal Credit and Personal Independence Payment Bill will provide 13-weeks of additional financial security to existing claimants affected by changes to the PIP daily living component,
The Universal Credit and Personal Independence Payment Bill will provide 13-weeks of additional financial security to existing claimants affected by changes to the PIP daily living component, including those who their lose eligibility to Carers Allowance and the carer’s element of Universal Credit.
The 13-week additional protection will give people who will be affected by the changes time to adapt, access new, tailored employment support, and plan for their future once they are reassessed and their entitlement ends.
This transitional cover is one of the most generous ever and more than three times the length of protection provided for the transition from DLA to PIP.

Link to Announcement
 
MEA Comment
The ME Association is deeply concerned by the government’s continued claims that its proposed welfare reforms will “protect the most vulnerable.”  For people living with ME/CFS and Long Covid - many of whom face complex, fluctuating* symptoms (whereby symptoms are always present ranging in severity) - the proposals risk cutting vital support.
Changes to Personal Independence Payment (PIP), including the new “4-point rule” and the removal of the Work Capability Assessment (WCA), could result in many losing access to both PIP and health-related elements of Universal Credit.  The protections currently built into the WCA - particularly Regulations 29 and 35 - are crucial for people whose health would be seriously harmed by work or work-related activity.  These safeguards are not included in the PIP assessment and have not been replaced.
 
We are also concerned that some of the most serious proposals, such as the new impairment threshold, have not been consulted on. It is unclear how the government believes these changes will support disabled people to work or live independently - especially when support is being removed without appropriate alternatives in place.
In response, the ME Association is launching a national survey to gather direct testimony from people affected by these changes.  This includes people with ME/CFS, Long Covid, and those who care for them.  We believe disabled people must be at the heart of this conversation - and our survey is one way of making sure their voices are heard.
 
We have submitted detailed evidence to the Work and Pensions Select Committee and will also respond in full to the government’s Green Paper consultation. In every part of this work, we are calling for reform that is led by lived experience, grounded in evidence, and shaped with disabled people - not imposed upon them.
We urge the government to pause and listen.
*N.B. Where the use of the word ‘fluctuating' is used, this is to align with DWP terminology.
Ella Smith, Welfare Rights Consultant,, The ME Association
 
Further Information

• The ME Association’s Position Statement on the Proposed Welfare Reforms  | June 18, 2025
• Fighting for Fairness: We Need Your Voice to Challenge Benefit Reforms | June 19, 2025
• The ME Association: Parliamentary Debate: Disabled People in Poverty | June 19, 2025
• The ME Association: Welfare Reforms: The ME Association strongly opposes government press release! | June 20, 2025

 
 
Action for ME (AfME) announce -
The UK Government sets out its Spending Review - our response
11 June 2025
Earlier today, the Chancellor set out the Spending Review and we are encouraged to hear the Chancellor’s plans to invest in the NHS. It is clear that this investment is needed, alongside a greater understanding of ME amongst healthcare professionals.
 
However, the Government’s proposed welfare reforms pose serious risks to people affected by ME. The views and experiences of the community, as part of the Green Paper consultation, must be listened to and acted on to prevent vital support being taken away from those who need it.
Furthermore, the Chancellor confirmed that annual funding for research and development will rise to £22 billion by the end of the spending review, representing a record level of public investment in UK R&D.
Biomedical research into ME is urgently needed to understand the disease, develop diagnostic tests and find treatments. We are calling on the Government to take urgent action to ensure a strategic approach for research into ME and associated post-infectious illnesses, including long Covid.
We will continue to work closely with our Parliamentary Champions and the APPG on ME to ensure that your voices are heard.
 
 
 
Have you contacted your local MP explaining your concerns?
Further information, plus the MEA’s template letter is available on our website, at -
Welfare benefits - Stricter PIP eligibility, and Changes to ESA assessments

•  Action for ME  •  Benefits 
•  Government U.K.  •  M.E. Association 
•  MP  •  Parliament U.K. 

Have you contacted your local MP explaining your concerns?
The MEA received a letter from the Secretary of State for Work and Pensions.
 
The ME Association’s website contains a template letter for your use,  -
Write to your MP about the recent announcements on Welfare Reform 
May 29, 2025
 
On Tuesday (18.03.25), the Rt Hon Liz Kendall MP, Secretary of State for Department of Work and Pensions (DWP) announced the governments plans for welfare reform.
Over 120+ organisations and charities are concerned that these changes, especially the decision to change the eligibility criteria for PIP and make it even more difficult to obtain, will have a devastating affect on disabled people and the communities they represent, pushing many into financial hardship.
 
We know from a Scope report (2024) that life costs more for disabled people. Many people who have ME/CFS and Long Covid, which can both be a disabling and very debilitating condition already live in poverty as a result of these extra costs. Therefore the impact of disability benefits cuts would be disastrous.
The ME Association is actively challenging the government’s proposed welfare reforms and has launched a major project to defend the rights of people with ME and Long Covid.
We will shortly be publishing a formal position statement, meeting directly with key policymakers including the Minister for Disabled People, and launching a national survey to gather vital evidence from our community.
This work is a priority for the charity, and we’re committed to ensuring the specific needs and experiences of people with ME and Long Covid are clearly represented and heard.
Write to your MP
 
Ella Smith, Welfare Benefits Adviser to the ME Association has kindly drafted a template letter which can be used to write to your MP.  Please consider writing to your MP (List of Herefordshire and Worcestershire MPs) to express your personal concerns using our Template Letter available for your use. 
 
 
The ME Association (MEA) wrote to State for Work and Pensions.
MEA writes to the Rt Hon Liz Kendall,
Secretary of State for Work and Pensions  - The ME Association
March 17, 2025
Summary

• The ME Association (MEA) raised concerns to Liz Kendall about press reports indicating cuts to welfare benefits, stricter PIP eligibility, and changes to ESA assessments, which would negatively impact people with fluctuating conditions like ME/CFS and Long Covid.
• Despite years of collaboration with the DWP, assessment procedures for people with fluctuating conditions remain inadequate, often leading to unfair denials of benefits.
• The MEA calls for the government to reconsider proposed welfare reforms, as they could push individuals with ME/CFS into poverty and debt, and urges consultation with medical charities before implementing changes.

The MEA has written to Liz Kendall to express our deep concerns about press reports which indicate that she is about to announce cuts to some welfare benefit payments along with making it far more difficult to claim PIP/personal independence payment. We have since received acknowledgement of this letter from Liz Kendall's office.

Letter to Liz Kendall
15 March 2025
Dear Secretary of State
Welfare benefit reform
Along with representatives from several other medical charities that represent people with fluctuating and long term medical conditions (examples include AIDS/HIV,  inflammatory bowel disease, multiple sclerosis and rheumatoid arthritis), the ME Association (MEA) has worked with the DWP over many years to try and make the eligibility criteria and assessment procedures for sickness and disability benefits more fair and effective for this group of people.
 
In particular we have taken the view that where people are clearly unable to work they should be supported by the benefits system and not forced into trying to obtain work that they cannot do and that employers do not even want to offer to them. 
Equally, where someone is or may be able to carry out some form of work there must be far more incentives for employers to take on people who may require periods of sick leave and modifications to their duties in order to work along with flexibly in the benefit system to allow for a flexible or part time return to work or a failed return to work.
 
For your information I attach of copy of the very comprehensive report that the DWP Fluctuating Conditions Group produced on the challenges facing people with these conditions when it comes to applying for work related DWP benefits and the use of the Work Capability Assessment – which we understand will form part of the government review.
Unfortunately, despite our efforts over the years, which have also included working with Professor Malcolm Harrington on his major review of the Work Capability Assessment, the procedures for assessing and claiming ESA and PIP are still not fit for purpose if you have a fluctuating medical condition – where the severity of ill health and disability often varies throughout the day, from day to day and from week to week.  
As a result of having assessment procedures that do not meet the needs of people with fluctuating medical conditions, many people with moderate or severe ME/CFS, and Long Covid, are still being refused sickness and disability benefits.   They are only succeeding when there is a reconsideration of their case or they go to appeal - where the high rate of success helps to confirm that the initial assessment procedures are just not working.
People with ME/CFS and Long Covid are therefore fearful and frightened by the press reports this past week which indicate that the government is about to announce major welfare benefit reforms and spending cuts which will include stricter eligibility criteria for PIP, a reduction or freeze in the level of payments, changes to the ESA Work Capability Assessment, and reductions in payments relating to Universal Credit.
 
We are also surprised and disappointed to find that medical charities representing people with long term conditions have not been consulted about these changes.
The purpose of PIP is to provide people who have significant problems with care or mobility with the financial support which helps them to improve their quality of life and in some cases with the costs of returning to some form of employment - something that the government is obviously keen to encourage.  
Making it even more difficult to claim PIP, or reducing the financial support it provides, is going to have a very detrimental effect on people with ME/CFS and will result in some of them being forced into poverty and debt.
 
We are therefore calling on the government to listen to people with fluctuating medical conditions like ME/CFS and urgently reconsider the adverse effects of making these changes to PIP.
At the same time we do obviously recognise the case for reforming some aspects of the welfare benefits system.  So we are very willing to collaborate with the DWP to achieve meaningful change that will help people with ME/CFS. However, this must involve understanding and addressing the diverse needs of people who are ill and disabled, and not with cuts that could undermine their security and dignity.
Thank you for considering our concerns.  
We look forward to hearing from you and hopefully working with you on a benefit strategy that will help people with fluctuating medical conditions who are capable of returning to work and not penalise those who are genuinely unable to work.

Yours sincerely
Dr Charles Shepherd,
Trustee and Hon. Medical Adviser to the ME Association,
Member of the 2018-2021 NICE guideline on ME/CFS committee,
Member of the 2002 Chief Medical Officer's Working Group on ME/CFS

DWP Replies to Dr Charles Shepherd’s Letter
Regarding Welfare Cuts  The ME Association.
April 3, 2025
On the 15th of March, 2025, Dr Charles Shepherd, MEA Hon. Medical Adviser, wrote to Rt Hon Liz Kendall to express the ME Association's deep concern around press reports indicating she would announce cuts to welfare benefits. This letter was sent prior to the the parliamentary announcement and the release of the Green Paper on 18th March.
The ME Association intends to send a follow up letter to Rt Hon Liz Kendall and provide a response to the Green Paper consultation.

Letter
On the 3rd of April, the DWP replied - as follows:
Dear Dr Shepherd,
Thank you for your recent correspondence about benefit reforms.
The Pathways to Work: Reforming Benefits and Support to Get Britain Working Green Paper was published on 18 March 2025. The consultation sets out plans and proposals to reform health and disability benefits and employment support.
 
The Green Paper is an important staging post on a journey of reform, building on the vision and approach set out in the Get Britain Working White Paper in November 2024. It sets out our vision, strategy and proposals for change.
The Government wants to improve and refine its plans by consulting on certain measures as described within the paper. It is committed to putting the views and voices of disabled people and people with health conditions at the heart of everything it does.
 
The consultation - Pathways to Work: Reforming Benefits and Support to Get Britain Working - can be responded to via a Microsoft Form using the following link:  Green Paper Consultation
By emailing [email protected] or; by post at: Pathways to Work Consultation, Disability and Health Support Directorate, Department for Work and Pensions, Level 2, Caxton House, Tothill Street, London, SW1H 9NA.
Further details about the Green Paper can be found by accessing the following link: Information on Green Paper
 
Yours sincerely,
Head of the Ministerial Correspondence Team
Dr Charles Shepherd,
Trustee and Hon. Medical Adviser to the ME Association,
Member of the 2018-2021 NICE guideline on ME/CFS committee,
Member of the 2002 Chief Medical Officer's Working Group on ME/CFS

Further Information

• GOV UK: Biggest shake up to welfare system in a generation to get Britain working | 18th March 2025
• DWP: Pathways to Work: Reforming Benefits and Support to Get Britain Working  | March 2025
• MP Jo Platt: Parliamentary Question to DWP: Employment: ME/CFS and Long Covid  | 17th March 2025
• The ME Association: MEA signs Scope’s open letter to the chancellor regarding welfare cuts  | 18th March 2025
• Disability Rights UK: Green Paper published – £5 billion cuts proposed by scrapping the WCA and changed PIP assessment  | March 2025
  
• Guardian: Councils and NHS could face millions in extra costs due to disability benefit cuts | 24 March, 2025
  
• Disability Policy Centre: Welfare reforms likely to deliver no significant savings in “all pain and no gain” scenario, according to new analysis. | 24 March, 2025
  
• The ME Association: Science Norway: Almost no ME/CFS patients return to work | 25 March, 2025
• GOV UK: Government to listen, learn and deliver as consultation on transformational welfare reforms begins | 7 April, 2025
  

The ME Association (MEA) give explanations for everyone, including people on various benefits.
 
Following the Chancellor’s Energy Payments announcement last month -
New energy payments announced by Chancellor
May 26, 2022
The Chancellor has just announced an extensive package to assist households struggling with the cost-of-living crisis.
 
This package will affect all households to some extent, dependent on circumstances, and some may be eligible for multiple payments.
The controversial £200 energy loan that was to be applied to all household electric bills in the autumn has been cancelled and replaced with a £400 non-repayable grant.
The Household Support Fund has also been increased to £500 million for anyone struggling to apply to their local councils for assistance.

• Low Income Payment: Benefit claimants will receive a £650 payment, made by the DWP direct to their bank accounts in 2 lump sum payments in July and later in the Autumn.
• Pensioner Payment: Pensioners who receive the Winter Fuel Payment are eligible for a £300 payment.
• Disability Payment: Disabled people who receive non-means-tested benefits such as DLA, PIP or Attendance Allowance will receive a £150 one off payment.

 
What does this mean for me?
Help with cost of living will apply to the whole of the UK. The maximum payment that you could receive if on means-tested benefits and PIP/DLA/Attendance Allowance (non-means tested) would be: 

• £400 (discount on all domestic energy bills (paid in October): The Energy Bills Support Scheme),
• + £650 (means-tested benefits (Universal Credit, Tax Credits, Pension Credit and means-tested legacy benefits such as Income Related ESA) with a first payment in July, the second in the Autumn), 
• + £150 (non-means tested disability benefits (PIP/DLA paid by September), 
• = £1200 
• + £300 if you are a pensioner (paid as part of Winter Fuel Allowance in November/December).
• And, you should have received - or will soon - a £150 rebate in Council Tax as part of the help being provided to cope with cost of living increases.
• Please read the Government's press release below to learn more. Payments will be made automatically to your bank account. 
• Housing Benefit does not qualify you for additional payments beyond the £400 discount that all households will receive. If you only receive Housing Benefit with no additional means-tested benefit then consider applying for the Household Support Fund which is administered by your local council.

 
BBC News -
Every household to get energy bill discounts of £400 this autumn
 
Government Press Release -
Millions of most vulnerable households will receive £1,200 of help with cost of living
 
-   Ella Smith,  MEA Welfare Benefits Adviser.
 
 
During June, Ella Smith, the MEA’s Welfare Benefits Adviser, gave us two ‘Cost of Living Payment’ explanatory announcements.
 
First Instalment of the £650 payment for qualifying low income households.
Cost of living payment 
June 15, 2022
 
The first instalment of the £650 payment for qualifying low income households in England, Wales, Scotland and Northern Ireland will be paid into bank accounts from 14 July 2022. This instalment will be an automated payment of £326 and the second payment later in the autumn will be £324. The government states that the payments are deliberately unequal due to the time periods used to decide who is eligible, in order to minimise fraud risks.
 
Anyone with an existing claim of the following benefits by 25th May 2022 will receive a payment: Universal Credit, Income-based Jobseekers Allowance, Income-related Employment and Support Allowance, Income Support, Working Tax Credit, Child Tax Credit and Pension Credit. Tax credits claimants will receive their payment slightly later than other DWP benefit claimants to avoid duplicate payments to the same household.
 
This payment will be tax-free, will not count towards the benefit cap, and will not have any impact on existing benefit awards.
Qualifying households do not need to do anything to apply for this payment; it will be made automatically into the bank account they usually receive their qualifying benefit in.
The payment dates for the other cost of living assistance payments to pensioners and to those on qualifying disability benefits will be announced shortly.
 
Government Information -
Cost of Living Payment
 
-   Ella Smith, MEA Welfare Benefits Adviser 
 
 
Cost of Living Payment: Who is eligible for the £650?
June 22, 2022
 
Phoebe, one of the MEA champion bloggers discusses the Cost of Living Payment in a recent blog and highlights that not everyone seems to understand who is eligible to receive the payment and those who will not receive it.
“The £650 for people on benefits does not include disabled people who are on Contribution Based Employment and Support Allowance (CB ESA). This however isn’t being made immediately clear, and I have spent a large portion of today trying to stop the spread of misinformation on Twitter, with many people confidently stating that everyone on Employment and Support Allowance (ESA) will be eligible for the £650, which is not the case. Only those on Income Related Employment and Support Allowance (IR ESA) will receive the £650.
It would be a mistake to assume that the government will help the most vulnerable first, despite them saying that they will help the most vulnerable first, but I can understand why it’s nice to think so.  With this new information, you might be hoping that once people realise that people on Contribution Based Employment and Support Allowance (CB ESA) are being excluded, they’ll make a fuss and it will be corrected?  Again, I can understand why it’s nice to think that will be the case. Disabled people on ESA have been here before.”
 
Phoebe's blog ('Puffins and Penguins') is entitled: Rishi Sunak’s Cost of Living Crisis Measures - Disabled People on ESA Are Losing Out, Again 
 
MEA Comments -
Ella Smith, Welfare Benefits Adviser provides the following information in relation to Phoebe's blog:

• People on Contribution Based Employment and Support Allowance will not be transferred to UC, only those on Income Related Employment and Support Allowance will be put on the new system. This is exactly because Universal Credit is a means-tested benefit that replaces the old, means-tested legacy benefits like Income Related Employment and Support Allowance. As Contribution Based Employment and Support Allowance is contributions-based and not means-tested, it sits outside the Universal Credit scope.
•  This is important when it comes to the cost-of-living payments because someone could be living in a household with a very high income or a lot of capital and still be able to receive Contribution Based Employment and Support Allowance (CB ESA). This is not the case with means-tested benefits because the household circumstances are considered. 
• If someone on Contribution Based Employment and Support Allowance (CB ESA) has no other income or capital coming into the household, it is very likely that they can also claim a means-tested benefit alongside their Contribution Based Employment and Support Allowance.
• Claiming a means-tested benefit is the only way to qualify for the £650 cost-of-living payment because this payment is targeted at LOW INCOME households. As discussed, someone on Contribution Based Employment and Support Allowance (CB ESA) may not be living in a low-income household but everyone on means-tested benefits will be.
• Regarding the information discussed about the Warm Home Discount, this has only been reported in the Mirror newspaper as a potential change. No legislation or further details have been announced as yet by the government. The likelihood of this happening in the current climate is still uncertain but people who claim means-tested benefits in addition to disability payments such as Personal Independence Payment (PIP) still seem highly likely to be able to receive the Warm Home Discount.  The Mirror article is here, with no real details being given. 

 
 
The Worcestershire M.E. Social Group’s website gives links to Social Media sites which maybe helpful to many people to discuss situations, or just to look and read other people’s postings.

•  B.B.C.  •  Benefits  •  Government U.K. 
•  M.E. Association  •  Worcestershire M.E. Social Group

The Worcestershire County Council’s recent Covid-19 announcement -
Coronavirus (COVID-19)
Update situation from the Worcestershire County Council -
Update - 30 June 2021 
Latest figures show Bromsgrove once again has the highest COVID-19 figures in the county.  Public Health in Worcestershire has been monitoring the situation. They have found cases are spreading in residents who are under 30.
Public Health advise everyone to keep following the rules, continue taking a regular rapid flow test and for anyone 18 and over, to get vaccinated.
Councillor Karen May, Leader of Bromsgrove District Council and cabinet member with responsibility for Health and Wellbeing said:
“We have come such a long way over the last year. Bromsgrove has worked hard to reduce the spread off the virus and keep everyone safe. We mustn’t let our hard work go to waste.  The numbers are rising in people who have not been vaccinated. Please don’t put off booking yours.  It's the best way to keep your family and friends safe.  I know, together we can do this, and get the numbers down."
The Worcestershire County Council also gives National Restrictions Update information following the Prime Minister’s announcement on 14 June.
 
The Worcestershire County Council’s Worcestershire COVID-19 situation dashboard -
The 7 day rate per 100,000 - given on the morning of 4 July:
Bromsgrove - 143
Worcester - 133
Malvern Hills - 119
Wychavon - 85
Wyre Forest - 81
Redditch - 79
 
The Worcestershire County Council Covid-19 website also gives Advice and Guidance on -
Get a test;  Self-isolation;  Vaccinations;  Traveling abroad;  Report cases;  NHS Test and Trace and using the App;  Test and trace support payment;  What is a contact?;  Face coverings;  Social distancing;  Advice for the clinically extremely vulnerable;  Need support?;  Help for businesses;  Easy read;  Information in other languages .
 
Plus our county’s two dashboards -  Worcestershire COVID-19 vaccinations dashboard , and Worcestershire COVID-19 situation dashboard
 
The ME Association’s (MEA) Covid-19 Free Resources.
MEA ME/CFS & COVID-19 Free Resources
During the unprecedented Covid-19/Coronavirus pandemic, we have ensured that people with ME/CFS - and those who continue to experience symptoms following infection - are kept informed of the latest guidance and related information.
All the leaflets and template letters relating to the Covid vaccination are free to download.  We periodically review and update them when new information emerges or the situation regarding the national restrictions are changed.  Please note these leaflets are downloads. You can read them on-screen and save to your computer, phone or other device and can attach them to any email you might need to send. But you will need access to a printer if you wish them printed.
 
See the MEA website for downloadable guidance leaflets and letter templates -
 
Covid-19 & ME/CFS Guidance:
Long Covid & ME/CFS: Information & Management May 2021
Covid-19 & ME/CFS Vaccine Update May 2021
Covid-19 & ME/CFS Reducing the Risk of Infection - November 2020
 
Letter Templates: Covid-19 & ME/CFS
Covid-19 & ME/CFS Clinical Vulnerability Adults
Covid-19 & ME/CFS Clinical Vulnerability Students
ME Association Covid Vaccine Eligibility Template Letter (V5) (19 March 2021)
MEA Letter to CCGs (England) & Health Boards (Wales) - 19 March 2021
 
Take care, and stay safe everyone.


•  Benefits  •  Coronavirus (COVID 19)  •  Local News  •  M.E. Association  •  N.H.S.  •  Post COVID Syndrome (Long COVID)  •  Worcestershire  •  Worcestershire County Council

On Wednesday of this week 7 October, MPs will be discussing welfare benefits.
Encourage your MP to attend this virtual meeting and become involved on behalf of their constituents.
The ME Association and Action for ME have articles giving full details
Please email your own MP and ask that they attend this important meeting.  Please ask your MP to contact the APPG on ME Chair, Carol Monaghan MP for details on how to join.  Contact details for all Worcestershire MPs. 
Information about previous APPG on ME meetings this year are available in our blogs.

•  Action for ME  •  A.P.P.G  •  Benefits  •  M.E. Association  •  MP 
•  Parliament U.K. 

• ME Association Guidance. 
This week the ME Association (MEA) launched a new leaflet, plus an update to add to the range that the MEA have been publishing since the very beginning of the coronavirus pandemic and national lockdown.  The MEA’s recent Covid-19 leaflets and letters are all available to download at the beginning of their latest update,

1. 12 page Covid-19 and ME/CFS Weekly Update - Coronavirus (COVID-19/Cv19) and ME/CFS leaflet
2. 4 page MEA information on reducing the risk of infection -  Reducing the risk of catching Coronavirus if you have ME/CFS leaflet by Dr Charles Shepherd.
3. 8 page MEA information on PVF / PVFS / ME / CFS following Covid-19 Infection - Post-viral fatigue (PVF) and Post-viral fatigue syndrome (PVFS) following Coronavirus Infection.  
4. MEA statement, signed by Dr Charles Shepherd, in Letter: Asserting your vulnerable status.
5. 4 page detailed leaflet - Your Benefits during the Coronavirus Crisis. 

 
Further details of ME Association Guidance (1 to 5) below:

1. MEA leaflet - Coronavirus (COVID-19/Cv19) and ME/CFS
This week’s update, explains the Easing of Lockdown.
The various items of relaxation announced by the Prime Minister mean that changes in relation to exercise, education and employment are moving faster in England than elsewhere in the UK.
But none of these changes are going to have any significant affect on most people with ME/CFS - unless someone is planning to return to work or school.
As far as education in England is concerned, the key point here in relation to ME/CFS is that any return to school is not compulsory - the government has simply issued guidance on returning to school for certain groups of children.
My understanding is that nobody is going to be in trouble, or even fined, if they choose to continue to keep their children at home.
For people with ME/CFS who may now be asked to return to work, or choose to return to work, this has to be on the basis of people being able to travel to work safely. And all aspects of the workplace must be safe in relation to hygiene and social distancing measures.
Employers have a clear duty under Health and Safety legislation to provide a safe working environment.
The Health and Safety Executive has opened a hotline for people to call if they are not happy about what an employer is proposing or doing: 0300 790 6787, Monday to Friday 8.30am to 10.00pm.
If you have concerns about working arrangements you should discuss them with your trade union or professional body representative…
 
2. MEA leaflet - Reducing the risk of catching Coronavirus if you have ME/CFS by Dr Charles Shepherd 
The basis for this guidance -. People who are infected pass on the virus in tiny droplets that are spread from the mouth during coughing, spluttering and even breathing.
Viral droplets can also be passed on by people who are displaying no obvious symptoms. So, a friend, or neighbour, or caller at the door, who looks and feels well could still be infected and spreading the infection.
These virus laden particles then land on surfaces where they remain (for up to 72 hours on some hard surfaces) and can be picked up if someone touches the infected surface. An infected hand or finger then touches the eyes, mouth or nose and the virus enters the body.
 
This leaflet contains a10-point guide to the most important measures that will help to prevent you catching this infection.
1. Stay at Home
2. Social Distancing
3. Don’t touch surfaces outside the house
4. Don’t touch your face
5. Wash your hands regularly with soap and water
6. Post, parcels and shopping
7. Stay safe away from home
8. Take a vitamin D supplement
9. Face masks
10. Meeting a friend or relative
 
3. MEA leaflet - Post-viral fatigue (PVF) and Post-viral fatigue syndrome (PVFS) following Coronavirus Infection.  
Our group’s recent blog Coronavirus (Covid-19): Post Covid-19 Rehabilitation  tells you about this MEA 8 page leaflet, and also gives information on a Daily Telegraph article, and Physios for ME.
 
4. MEA Letter: Asserting your vulnerable status
Go to our group’s update blog of 20 April for further information.    This update followed the Government announcement on 16 April -
".. .. the government has determined that current measures must remain in place for at least the next 3 weeks".
 
5. MEA leaflet - Your Benefits during the Coronavirus Crisis. 
The MEA Benefits leaflet has two sections - the first covering benefits for people tested positive for Covid-19 or have the symptoms or for those who share a household with someone in this situation;  followed by a section for people on Universal Credit or ESA who have been treated as having limited capability for work but not limited capability for work-related activity (ie “work preparation group” or “limited capability for work” respectively).
The information provided in this leaflet was correct at the time of writing - April 15 - but please be aware that the regulations and guidance are changing daily.
 
• Action for ME (AfME) have a 'Coronavirus and M.E./CFS' page - which has been set up to keep track of up-to-date advice regarding Coronavirus, and support available from Action for M.E.  AfME are monitoring this page, and it gives the time when it was last updated.
 
AfME explain that it remains essential that people with M.E. follow existing advice about social distancing “to reduce social interaction between people in order to reduce the transmission of Coronavirus.” It is intended for use in situations where people are living in their own homes, with or without additional support from friends, family and carers. If you live in a residential care setting, other guidance is available. AfME advise - those who are at increased risk of severe illness from Coronavirus to be particularly stringent in following social distancing measures, pointing out that this means those who are: aged 70 or older, regardless of medical conditions, and those who are aged under 70 with a listed underlying health condition [...including] chronic neurological conditions, such as Parkinson’s disease, motor neurone disease, multiple sclerosis (MS), a learning disability or cerebral palsy diabetes.
Given that M.E. is listed as a neurological condition by NHS England, SNOMED (the system used by GPs in England for electronic health records) and the World Health Organisation, we include people with M.E. in this category of increased risk of severe illness from Coronavirus.
 
• ME Research UK are asking you to Chop for M.E. and raise funds for research.
With the UK government encouraging those who cannot work from home and whose workplace has appropriate measures in place to counter the COVID-19 threat to return to their workplaces, a novel issue has arisen - the urgent need for a haircut.
Likewise, for those of us at home - time may seem to have stood still but follicularly-speaking - it has not. It may be that a trim or even something more drastic is needed.
ME Research UK issues a challenge - Chop for ME - to raise funds for our charity. We hope that it can be shared widely and we hope that photos posted with #ChopforME will inspire others.  Get a home haircut, donate £10 by mobile phone, and challenge a friend.  Please remember to observe all social distancing and health guidelines pertaining to your location.

Become involved in Chop for M.E. 
Just Chop your Hair, and donate £10 to ME Research UK.  Text CHOPME to 70085 to donate £10;  Texts cost £10 plus one standard rate message;  Post a photo using the hashtag #ChopforME; and challenge your friends.
(This section amended on 27 May 2020)
 
• #MEAction continue to add information to their Covid-19 Resources page, giving information about the coronavirus outbreak and its effect on people with ME. It includes links to useful governmental sites regarding the outbreak as well as resources and articles particularly developed for people with ME. 
 
• The 25% M.E. Group has leaflets available to download for people with severe M.E. on its website.

• Message from Dr Willy Weir and Dr Nigel Speight, Medical Advisor to the 25% ME Group - Coronavirus Update 7 March
• Message from Dr Nigel Speight, Medical Advisor to the 25% ME Group
  Coronavirus and members of the 25% ME Group

 
Take care, and stay safe everyone.

•  25% M.E. Group  •  Action for ME  •  Coronavirus (COVID 19)  •  M.E. Association  •  #MEAction  •  MERUK  •  Post COVID Syndrome (Long COVID)  

From ME Association news.

PIP Medical Assessments with CAPITA | meeting at House of Lords next Tuesday | 21 October 2016

I will be at a House of Lords meeting with the Countess of Mar on next Tuesday (October 25) where there will be a representative from CAPITA attending to give a presentation and answer questions about the medical assessments they carry out for Personal Independence Payments (PIP) on behalf of the Department for Work and Pensions (DWP).

If you have any comments or questions – positive or negative – that are relevant to a DWP medical assessment that has been carried out by a CAPITA health professional that could be made use of in this meeting please post them here, or to me via: [email protected]

I will need them by 9pm next Monday (October 24) 9pm at the latest.

Information on PIP outcomes from the
September MEA website survey on PIP:

Have you applied for a Personal Independence Payment (PIP) from the DWP? If so, what was the initial decision on your claim?

Refused at initial application (24%, 53 Votes)
Refused on appeal (5%, 10 Votes)
Awarded care and mobility at either rate (26%, 57 Votes)
Care only at enhanced rate (0%, 1 Votes)
Care only at standard rate (7%, 16 Votes)
Mobility only at enhanced rate (1%, 2 Votes)
Mobility only at standard rate (5%, 12 Votes)
Application in progress (8%, 18 Votes)
I’m not applying for PIP (24%, 53 Votes)
Total Voters: 222

Dr Charles Shepherd
Hon Medical Adviser
The ME Association