chat
At Leukaemia Care, we understand that a leukaemia diagnosis brings not just medical and emotional challenges but also financial worries. Our data shows that more than a quarter of patients with leukaemia lose up to 60% of their monthly income after diagnosis, and 21% receive no income at all. Many patients rely on welfare benefits to help them after diagnosis, and we know that recent changes to the system may feel confusing or overwhelming. Here we explain how the changes could affect you.
Today’s announcement covers 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 disability.
Firstly, in 2028, extra universal credit paid to people who have “limited capability for work” will be changed. The assessment will be scrapped. 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 if they meet criteria.
Employment and Support Allowance, paid to people unable to work for health reasons, and Job Seekers Allowance for anyone unemployed for any reason, will now be merged to provide a higher amount for people who are unwell but may be able to work in the future. This will be dependent on people taking part in support activities. Additionally, anyone under 22 will not be eligible for this unemployment insurance, when changes take effect in 2026.
The other benefit affected is Personal Independence Payment (PIP). This is given to people who are assessed as needing extra help due to a long-term condition, affecting them for a year or more. 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 not improve.
Overall, the government have announced a package of additional support for people who want to work. This includes advice and coaching to find work. Importantly, 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 changes 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.
The devil will be in the detail and there will be more information needed before we can say for sure what the impact of the changes will be.
We know that waiting for financial support can be incredibly stressful, especially when you have urgent expenses such as travel costs for treatment or household bills. These are the among the most common financial pressures that people with leukaemia report to us. We are disappointed that waiting times have not been addressed, joining other charities in calling for change here, such as Young Lives Versus Cancer’s recent report.
The benefits reform also does not look at changes to the process for applying, such as the length of the form, another cause of many of the queries we receive. Despite recent comments suggesting otherwise, our role is not to show people how to ‘game the system.’ Instead, we are here to help those already overwhelmed by a serious health condition access the support they are entitled to. The form’s length, and its focus on physical symptoms, can make it very challenging for patients with leukaemia to explain their very real challenges. Placing all the emphasis on PIP without additional changes may not be enough.
It is not clear whether people with leukaemia will benefit or lose out from changes to the assessment processes. If you’re struggling with treatment side effects like fatigue, nausea, or weakened immunity, these assessments can feel frustrating and unfair. However, assessments can provide a way for you to show the impact in more details that in writing.
Today’s proposals suggest that reassessments to encourage people to work when they feel well are needed, but it may not be that simple. For example, it can take leukaemia patients up to 12 months for their immune system to recover, with some CAR-T patients left with a reduced immune system for life. These people need flexibility in their work life to deal with these long-term consequences. It may help to have more supports outlined today, such as coaching and advice and additional money for temporary unemployment, but this needs to be matched with an understanding employer too.
Recent comments from the Secretary for State for Health and Social Care, and the focus in today’s 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. 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.
The changes proposed today are disproportionately focused on health-related benefits for working-age people, but it’s important 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.
The system is also not well set up at present to deal with people who are sick in the short term; statutory sick pay (SSP) is too little to live on and wait times for additional benefits are high. We are not clear how today’s announcements will help this situation, although cutting the assessment to get Universal Credit may help.
Additionally, we know that the needs of disabled people in work are not always met. Our advocacy service continues to hear from people who need support in work and communicating with their employer. As a system that is binary and marks people as fit or unfit is unhelpful without incentives for employers to support people. Some people even use PIP to pay for extra costs to get to work, such as adapted transport, so it is not as simple as benefits being for those unable to work.
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.
You’re not alone
It is also important to note that some benefits are controlled by the Scottish Government, meaning the impact of these cuts may vary across the UK. However, because overall welfare spending affects the amount allocated to devolved nations, these cuts could still reduce available funding in Scotland, Wales, and Northern Ireland. We will continue to monitor how these changes unfold and provide updates on how they might affect you.
Welfare reforms may feel daunting, but you don’t have to navigate them alone. Together, we can make sure that no one facing leukaemia has to worry about financial security.