How the Government’s proposed benefits reform could impact people with cystic fibrosis (CF)

To claim the daily living component of PIP, disabled people will need to score at least 4 points in at least one activity, in addition to the current criteria of 8 points for the standard rate and 12 points for the enhanced rate. Currently, there are descriptors which score 2 points, which allows claimants to meet the threshold by scoring a few of these.

The Government has said that they are not asking for feedback on this change, but they are seeking advice on how to support people who will lose PIP payments as a result.

Any changes to PIP should be carefully thought through, especially for lifelong, fluctuating conditions like CF. We are concerned that this proposed change could make it harder for some people with CF to meet the criteria.

Research from the University of Bristol shows that CF costs families living with CF an average of £6,800 a year. For many, the money from Personal Independence Payment (PIP) is a vital lifeline, helping to cover the additional costs of living with a life-limiting condition and supporting people to stay as well as possible.

The Government will scrap the WCA and use the single PIP assessment to decide who is eligible for the Universal Credit (UC) health element. 

The Government has said they are not asking for feedback on this change. 

For people claiming UC (a means-tested benefit for those in low-income work or out of work), the health element will now be linked to receiving the PIP daily living component rather than being based on someone’s ability to work or their work status.

The Government is consulting on delaying access to the health element of UC until a person turns 22. This means people won’t be able to receive the health element until they are 22, but it won’t affect their entitlement to PIP. We are concerned about how this could affect people with CF between ages 18 and 22 as many need additional support with their treatments and diet to keep well. 

The Government is consulting on raising the age at which young people move from Disability Living Allowance (DLA) to PIP. New claims for PIP could be made from ages 16 to 18. We think this could be a positive change, but we will carefully review the details of the proposal.

Under the proposed reforms, people with the most severe long-term conditions will no longer have to face reassessments. However, it’s still unclear how "the most severe" will be defined. We will be working with policymakers and the CF community to understand how this could affect people with CF and will share our views on this issue.

The Government has said that they want to return to face-to-face assessments, which were replaced mainly with phone and video assessments during the pandemic. We will call for reasonable adjustments for people with CF when face-to-face appointments are not suitable, safe, or necessary.

The Government plans to create rules that ensure working will not automatically lead to someone being called for a reassessment or award review. We will review the details to understand how this could help people with CF.

The Government has made a commitment to invest an additional £1 billion a year by 2029/2030 to build towards a guarantee of personalised employment, health, and skills support. We will be looking at the details of these plans and feeding in the learning from the Trust’s Work Forwards employment programme, which provides specialist employment advice and support to people affected by CF. 

Contribution-based Jobseeker’s Allowance (JSA) and Contribution-based Employment and Support Allowance (ESA) will be combined into a new time-limited unemployment insurance, paid at a higher rate. You won’t have to prove you cannot work to receive it. While JSA is time-limited, some types of contribution-based ESA are not, so this may impact some people with CF, who would need to claim other benefits if they are eligible.