Young Lives vs Cancer responds to the UK Government’s Health and Disability Green Paper Consultation

The UK Government Department of Work and Pensions held a consultation between April and July 2024 on the “Modernising support for independent living: the health and disability green paper”.

The green paper proposed potential changes to Personal Independent Payment (PIP) – a disability benefit that many people, including young people with cancer over 16, can apply for to support with increased daily living costs as a result of their condition.

To ensure the needs and experiences of young people with cancer and their families were considered as part of this consultation, Young Lives vs Cancer submitted a response. Here’s what we said:

PIP Assessment Criteria

The consultation asked for views on the current PIP assessment criteria, and whether more emphasis should be placed on condition or medical evidence rather than functional impact.

We said that receiving a cancer diagnosis should entitle young people to access PIP straight away, removing the need for a lengthy assessment process, and could speed up the application process. But whilst this might be beneficial for young people with cancer and other conditions, having a confirmed diagnosis should not be the only way to access PIP, and those without a diagnosis or unable to access medical evidence should not be excluded from accessing PIP where they need it. We also said that these principles should apply to PIP award reviews.

PIP Eligibility

The consultation asked for views on the indicators and qualifying periods used to determine PIP eligibility through the current assessment process.

We said that the current indicators aren’t a good reflection of the extra ongoing costs that young people with cancer face, because they don’t reflect costs such as travel, food, and energy costs that can impact young people with cancer the most. We said it would be beneficial for young people with cancer to be eligible for PIP at the point of their diagnosis rather than following the current assessment process, but for those who do have an assessment, there needs to be better consideration of these costs. Because of the scale of these costs, we said it would be beneficial for all young people with cancer to be awarded the enhanced (highest) rate of PIP.

We also said that the current three month “qualifying period” should be removed for all young people with cancer so they can access PIP immediately following their diagnosis, and that the nine month “prospective test” (how long someone might be impacted by their condition) should be reduced or removed for young people with cancer, because of the severity and nature of their condition. If a prospective test is needed, it should better reflect the needs of young people with cancer.

What support is provided, and what for

The consultation asked about which costs PIP support should cover, how support should be provided, and how PIP links with other benefits.

We said that the extra ongoing costs that young people with cancer face, like travel, food, energy, clothing and others, should be covered as part of PIP, and that this support is best provided through the current cash payment system, rather than a new mechanism like vouchers, a shop scheme or claim-backs, as these wouldn’t best suit the types of costs young people with cancer face. If alternative options for getting support were introduced, the cash payment scheme shouldn’t be removed.

We also said that providing immediate access to PIP following diagnosis for young people with cancer would speed up access to other benefits which are dependent on PIP, like Carer’s Allowance. Automatic passporting should be in place between these benefits so people are also immediately able to access these.

Travel costs and a Young Cancer Patient Travel Fund

The consultation asked if any other support could be in place to help with the costs that young people with cancer face, so we took the opportunity to further advocate for a Young Cancer Patient Travel Fund to support with the significant costs of travel to their specialist treatment and care that young people with cancer face.

Young Lives vs Cancer will continue to influence decision makers, including government across the UK, until we have a welfare and benefits system that works for all children and young people with cancer and their families. This was one of our top priorities in our general election Manifesto.

For more information about Young Lives vs Cancer’s policy and influencing work, contact campaigns@younglivesvscancer.org.uk.