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Petition – STOP the new 4 point PIP rule -Change.org

BySteve

Note: Content below copied from Change.org

https://www.change.org/p/stop-the-new-4-point-pip-rule

The Issue

I am a chronically ill Independent PIP Consultant with the goal of providing the kind of support and awareness I WISH was available when I first became chronically ill (I was 29 years old, I am now 47). 

I am entitled to and do claim PIP myself; this funding changed my life. The Government’s recent decision to introduce a new rule is threatening this lifeline for those who have fought through the invasive, degrading assessment process and finally won. They/we depend on this support. 

They are saying you now need a MINIMUM score of 4 points in at least ONE daily living activity to keep/get the daily living funding from 2026 (new claims and on reviews). This change WILL deny access to the daily living component to those who are genuinely in need but cannot score the 4 points in a single activity. We know through our experiences the way the scores are allocated rarely match our daily life, many should have had 4 points but do not get this result.

The Government must reconsider this change. We MUST protect the most vulnerable among us and ensure their dignity through compassionate support. Therefore, we need to urge our Government to reassess this new rule. 

We need 100,000 signatures and then this (legally) must be discussed in parliament. I am not trying to be our spokesperson but I am trying to unite us. We need to raise our voices so loudly that activists and specialists can continue fighting on our behalf. This is how we help ourselves and those that cannot fight for themselves.

Remember, YOU, your family, friends, neighbours and co-workers CAN all sign this petition

It is NOT acceptable to target a vulnerable community WE MUST SPEAK UP and be HEARD

Please, sign this petition now, please sign for the chronically ill, sign for fairness, and sign for justice.

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  • A personal Email from me to Munira Wilson about Benefits cuts

    BySteve

    Email sent on: 24/03/2025 20:23

    Dear Munira,

    I am writing to express my deep concern regarding the recently proposed cuts to disability benefits, which are expected to reduce the benefits bill by £5 billion by the end of the decade. As someone affected by Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS), I fear these changes will have a significantly detrimental impact on people like me, who rely on this support.

    The proposed tightening of eligibility criteria, especially now rejecting summation of different incapacities for Personal Independence Payments (PIP) means that only the most severely disabled will qualify, potentially leaving up to 1.2 million people without essential support. This is particularly concerning for those with ME/CFS, a broadly debilitating neurological condition affecting at least 250,000 people in the UK. Many have developed ME/CFS following COVID-19, further increasing the number of individuals requiring assistance.

    Below is an illustration (adapted, please see note below) showing the unfairness of the new points scoring system proposed, where combinations of incapacities would not be considered equivalent e.g. to the proposed score of four or more in one specific incapacity:

    PIP Eligible vs PIP Ineligible

    The reduction in benefits not only threatens the financial stability of disabled individuals but also risks increasing strain on local councils and the NHS. As people lose access to PIP, they may be forced to rely more heavily on council-funded care services, overwhelming already limited resources and leading to increased administrative and emergency service costs.

    I urge you to consider the following actions:

    1. Oppose the proposed cuts to disability benefits: Recognize the long-term consequences these reductions will have on disabled individuals and the broader community, and advocate for policies that protect the most vulnerable.
    1. Continue your support All-Party Parliamentary Group (APPG) on ME: Your participation is already helping to ensure that the voices of those with ME/CFS are heard and that their unique challenges are addressed in policy discussions.
    1. Advocate for the implementation of the 2021 NICE guidelines and the forthcoming Department of Health and Social Care (DHSC) Delivery Plan for ME/CFS: These documents provide comprehensive recommendations for the diagnosis, management, and support of individuals with ME/CFS.

    I would be grateful for the opportunity to discuss these concerns further personally and to hear your stance on this critical issue.

    I would like to request a face-to-face meeting at one of your Twickenham surgeries in the near future please, if not perhaps a Zoom or a telephone call.  Please let me know if and when this would be possible.

    Thank you in advance for your attention to this matter.

    Yours sincerely,

    Steve

    Note: Image included above adapted from (totally unrelated) Neurodiversity article by “Teaching Times Group”

  • #ThereForME publishes first UK Ecosystem report for ME and Long Covid

    BySteve

    The #ThereForME team have published the first version of their UK Ecosystem Report for ME and Long Covid, created in collaboration with CrunchME. This report maps out key stakeholders and initiatives across the UK, aiming to inform advocacy efforts, policymakers, and potential funders of research and care.

    The report tracks active and future ME/CFS research projects within the UK. Following each overview slide like the one below, are detailed additional slides showing the technical nature of the work and interventions being trialled.

    Following slides go in to show research projects for Long Covid within the UK, Clinics and Clinicians, Biotech resource, and forthcoming conferences.

    The full UK ecosystem report for ME and Long Covid can be found here

    Everything about the #TherForME campaign can be found on the TherForME website

  • | | | | |

    #Justice4ME Campaign Update No. 3

    BySteve

    Quote from Sarah Boothby on Social Media

    We have now taken legal advice, thanks to your donations, and instructed our lawyers to proceed with sending a letter before claim to the Department of Health and Social Care (DHSC).  This does not mean there will be a claim (an application to the court for Judicial Review of the Final Delivery Plan for ME/cfs) it means there are inconsistencies within the Plan that make it vulnerable to legal challenge.

    We doubt this vulnerability is what was intended in the drafting of the Plan.  We know people with ME/cfs have had cross party political support for decades.  We know hundreds of people contributed their knowledge, lived experience and expertise to developing the Plan, so we hope these snags will be resolved without a court hearing being necessary.  People living with ME, and the NHS staff trying their best to deliver safe clinical care without clear, succinct, safe clinical guidance to follow, deserve nothing less.

    If the reply from DHSC to our letter is not satisfactory, and the inconsistencies we have identified in the Final Delivery Plan persist, we must apply for Judical Review by 21 October at the latest.

    At this stage, we cannot share with you the advice we have been given but we will explain everything the very first chance we get.  Sorry if that’s frustrating; it is for us!  If the case does come to court the legal arguments will be made public that way but we hope the DHSC will make the changes needed sooner.  The changes needed are not huge, they are efficient, and they will not cost the NHS more money than is already being wasted on catastrophic mismanagement of ME.

    This is a first step, made possible only by your generosity and the long history of injustice that got us here.  We are honoroued by so many of you sharing your time, comments and money with us.  We could not have got so far without you.  We rely on your feedback on social media to be sure the aims of #Justice4ME reach the widest audience possible.

    More updates will follow in the coming weeks, including additional endorsements and images on our homepage.  Meanwhile, please keep on sharing our campaign with everyone you know, however unlikely!  Since we met the initial fundraising target in our launch week, the campaign to raise the final third for this first phase will continue throughout October.

    Thank you, thank you, thank you for helping make #Justice4ME a serious proposition. Let’s have our NHS knowing what to do about ME without doubts, indecision or delays – all over the UK, please.

    #JusticeforME

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