Pathways to Work-What the Government’s Green Paper Means for People Living with Inherited Metabolic Disorders:
The UK Government has published its “Pathways to Work: Reforming Benefits and Support to Get Britain Working Green Paper”, outlining significant changes to welfare support. These reforms aim to encourage employment and simplify benefit processes, but they also raise concerns for those living with inherited metabolic disorders (IMDs), who rely on these benefits for essential support.
Living with an IMD often involves complex health management which can incur financial pressures. This was shown in our “Cost of Living with an IMD” report which found that 87% of respondents experienced financial strain due to their condition with many struggling to afford specialist foods, medical equipment, and travel for hospital appointments.
This financial strain can be magnified by the fact that people living with IMDs may experience fatigue, pain and/or fluctuating symptoms. There may also be a lack of knowledge or published cases of adults with specific IMDs too. All of this can lead to discrimination due to a lack of understanding from employers, meaning it can be hardto maintain a job. As a result of this, individuals living with IMDs may have to rely on financial support to cover additional costs or simply to survive.
The proposed welfare reforms could further impact people with IMDs, who may struggle to work due to their health conditions. While the overarching message of the paper sounds positive, the changes must consider the unique needs of those with complex health issues to avoid additional hardship and ensure continued access to vital financial support.
This article covers the key takeaways from the Green Paper for people living with IMDs, includes examples from families with lived experience and provides opportunities to respond to the Green Paper to ensure your voice is heard!
What do the proposed changes mean for our communities?
Respondents to our Cost-of-Living support stated that despite being eligible for benefits, they found the application process was “lengthy”, “stressful” and “startling”. Due to the length of these processes, and the high burden on those affected juggling work/caring/living with the condition, 35% of respondents did not claim benefits and those who did, did not receive their full entitlement.
Under the new proposals, from 2026/27, only individuals who score at least four points in one daily living activity will qualify for the daily living component of PIP. This could mean between 800,000 and 1.2 million people losing between £4,200 and £6,300 per year. For people with IMDs, this could be a significant blow, potentially making the application process more difficult for families who are already under a great deal of pressure and meaning some individuals could lose out on essential financial support.
Another major proposal is the introduction of a new benefit combining Jobseeker’s Allowance (JSA) and Employment and Support Allowance (ESA). This will provide £138 per week for a limited time, requiring recipients to actively seek work. While this might support those in temporary difficulty, people with IMDs could face pressure to find work quickly, even if their health condition makes employment challenging.
The Government plans to raise the standard Universal Credit allowance for all claimants, increasing the weekly rate for a single person over 25 from £92 in 2025/26 to £106 by 2029/30. While this could provide some financial relief, the increase may not be enough to offset other cuts.
One of the biggest concerns is the reduction of the health element of UC for new claimants. From 2026/27, this will drop from £97 a week to £50 a week, while for existing claimants, it will be frozen at £97 a week until 2029/30. Around 2.25 million families who currently receive this support will lose an average of £500 a year. For people with IMDs, who’s ability to work may be limited by their condition, this reduction could make everyday life more difficult.
These cuts will also affect younger people. Under new rules, under-22s with long-term illnesses or disabilities will no longer be eligible for the health top-up, further narrowing the support available to those who may already face significant barriers to employment and independent living.
The Government has committed £1 billion to expand employment support services, aiming to help more people with health conditions enter the workforce. This investment could be beneficial if it leads to tailored job opportunities and workplace adjustments for those with fluctuating health needs.
A proposed “right to try” scheme would allow individuals to attempt work without immediately losing their benefits. While this could be a positive step, safeguards are needed to protect those who are unable to sustain employment due to their condition.
One positive proposal is the commitment to protect incomes for people with lifelong or progressive conditions. The Government has promised no future reassessments for individuals with ongoing benefit awards, reducing stress and uncertainty. However, the success of this measure will depend on how it is implemented and whether people are given clear information about their entitlements.
The planned abolition of the Work Capability Assessment (WCA) by 2028 is intended to simplify claims. Instead, people’s eligibility for a health element of Universal Credit will be determined by their Personal Independence Payment (PIP) assessment which has been made more difficult because of the tightening of eligibility criteria. This could further reduce household income should applicants fail to meet the eligibility for PIP.
Real-Life Impact: Examples from our community
One of our community members told us that they have a life-limiting condition and received PIP continuously. ‘The proposed changes don’t concern me too much, I’ve not really looked into it, but because of my condition I just get PIP, and it seems from the changes that, for me, that won’t change.’
Another community member told us that they have already found the process challenging and the proposed changes bring a lot of fear andanxiety. ‘It’salready been hell. I don’t really understand my condition, nobody does, and certainly the person assessing it doesn’t. I have fatigue, pain, I can’t get out of the house most days, and it’s devastating – but to an assessor anyone could say that. I don’t trust the assessment process and now they’re looking to make it harder for people to claim – Idon’t know how we will get through that and what will happen if we end up with nothing, I don’t know how w
Have your say!
These proposals are still in the consultation phase, meaning individuals and advocacy groups have the chance to provide feedback. Metabolic Support UK will continue to monitor developments and advocate for fairer policies that protect those living with IMDs.
If you are affected by these changes, we encourage you to share your experiences via the survey we’ve developed. We will use the results of this survey to contribute to the government’s consultation on these proposed changes, ensuring your voice is heard.
You can also respond to the consultation directly!
