Welfare Reforms and leukaemia patients: What you need to know

Announcements have been made in the last 2 weeks that covered several benefits – Universal Credit, Employment Support Allowance and Personal Independence Payment (PIP). All have elements that are only paid to people with ill health or a disability. Here is a list of potential changes to the system.

We know it is a worrying time for many of you who may receive these benefits. Please note that these are all only possible at this stage – each proposal is being looked at separately and there are opportunities for MPs and the public to disagree before it takes effect. We may not be able to tell you how they affect you personally until we have more details.

Changes this year, subject to a vote in parliament:

1. Only the standard allowance part of Universal Credit will go up with inflation this April. The limited capability for work portion will be frozen this year.

Potential changes later down the line, subject to consultation:

1. Next year, the money received by people in Universal Credit limited capability for work group will be cut in half from next year, then frozen for several years.
2. In 2028, the assessment for people to get the limited capability for work payment on Universal Credit will be scrapped altogether. Instead, anyone who needs extra money due to a health condition will be expected to apply for PIP, and then will be given PIP and/or extra universal credit depending on whether they meet the criteria.
3. In 2026, Employment and Support Allowance, paid to people unable to work for health reasons, and Job Seekers Allowance, for anyone unemployed for any reason, will be merged to provide a higher amount for people who are unwell but may be able to work in the future. This new insurance will only be available for a certain period of time. Additionally, anyone under 22 will not be eligible for this new unemployment insurance.
4. The other benefit affected is Personal Independence Payment (PIP). The changes here will focus on the assessment process. Some people will be assessed more often, with others never assessed more than once if their health will never improve.
5. The criteria for qualifying for PIP may also get harder. PIP works on a scoring system, where people who need more help get a higher score. There is a proposal to increase the minimum score you need to get PIP.

Overall, the government have announced a package of additional support for people who want to work and can work. This includes advice and coaching to find work. In positive news, it has been announced that people who take up work whilst on benefits will be able to access their benefits for a while afterwards and not need to reapply.

There appears to be no change in the amount of PIP paid. Additionally, the wait times for applying for all benefits have not been addressed directly. Some changes suggested by the previous Government have been scrapped, so PIP will not be changed to vouchers instead of cash and PIP will not be based on income.

These changes will likely also apply to Wales and Northern Ireland if they are approved, as their benefits systems are more affected by any changes made by the UK Government.  It is more difficult to say at this point how the changes to benefits will affect Scotland, which has its own set of  Scottish benefits.

• Personal Independence Payments (PIP) are currently paid in England, Wales and Northern Ireland – but not Scotland.
• Universal Credit, on the other hand, is a UK-wide benefit. Therefore, changes in yesterday’s statement will affect claimants across the UK if it comes into effect.

We know it is a worrying time for many of you who may receive these benefits. Please note that these are all only possible at this stage – each proposal is being look at separately and there are opportunities for MPs and the public to disagree before it takes effect. We may not be able to tell you how they affect you personally until we have more details.

The Government has published some documents looking at how these changes will affect the general public.  We are disappointed that many of the changes are expected to affect those with health problems and disabilities. Many people with leukaemia experience lifelong challenges with not enough emotional, practical and financial support.

Only half of the households who will be better off under the changes proposed include someone with a disability. From the people who will now be worse off, 96% of these household include someone with a disability. It’s estimated that the changes in the Statement will put between 250,000 and 400,000 more people into relative poverty. The Government has said it expects this to be prevented by its employment support programme, but offers no figures on whether these people can work. As a charity, we remain concerned that people affected with leukaemia could struggle even more to have the time, space and support they need to recover thanks to these changes. However, we are not yet clear exactly how the changes will affect people with leukaemia specifically.

Whilst we welcome that people who don’t expect to recover will not face more stress and assessment, creating a hierarchy of people who are unwell is not a helpful narrative when people are seeking support. For example, we have seen that those with chronic leukaemia are less likely to receive emotional support, due to a link being made, incorrectly, that a person’s emotional response to cancer is higher based on how clinically severe it is. We feel these changes have missed other chances to make the process of benefits easier, like making the forms simpler and shorter, and improving the wait times for benefits. It’s also important for decision makers to remember that ‘working-age’ does not automatically mean ‘able to work.’ Many leukaemia patients experience long recovery periods, and some may never fully regain their previous capacity to work. For example, some CAR-T and transplant patients are left with a reduced immune system for life. These people need flexibility in their work life to deal with these long-term consequences.

Recent comments from the Secretary of State for Health and Social Care, and the focus in the various proposals on people with mental health conditions, are of concern. We echo comments of charities such as Mind, who warn that this could increase stigma for people with these conditions. Many people with leukaemia have mental health issues as a result, and support for this is lacking in the NHS, so it is no surprise that some may end up unable to work if they do not receive treatment for their condition.

At Leukaemia Care, we’re actively working with other charities to make sure the welfare system recognises the unique needs of cancer patients, including leukaemia.

Our advocacy service continues to hear from people who need support in work and communicating with their employer. Our data shows that 21% of leukaemia patients receive no income at all after diagnosis, and a large number lose most of their income.  We have already seen a third more cases come to our welfare advice service between January this year and today, compared with the first 3 months of 2024.

Leukaemia Care are advocating for a system that acknowledges this reality and provides fair, compassionate support. We’re pushing for policy changes, including most recently campaigning for increasing sick pay just last week, to automatic benefit entitlement during active treatment and faster processing times to prevent financial distress. Your experiences matter, and we use your stories to advocate for a fairer system.