What does the Autumn Statement mean for people living with Inherited Metabolic Disorders?

28th November 2023

Foreword

At our annual community conference, we shared insight from our Cost of Living with an IMD report in which we found that people living with or caring for people living with Inherited Metabolic Disorders are unduly affected in times of economic uncertainty, as shown by the main themes below.

Access to a specialised diet:
86.6% stated that they had to maintain a specialised diet to reduce the negative symptoms associated with their condition.

93.3% of these respondents stated that they had been directly impacted by the rise in cost of living relating to groceries and food costs needed to maintain this diet. 

Access to benefits:
Due to the length of these processes, and the high burden on those affected juggling work/caring/living with the condition, 35% of respondents didn’t claim benefits and those that did, didn’t receive their full entitlement. 

Low income:
IMDs often result in fatigue, pain and can come with discrimination due to misunderstanding meaning it can be hard to maintain a job. Because of this, coupled with caring responsibilities, over 50% of respondents have a household income significantly less than the median for the UK. Further to this, Scope states that life is already more expensive when you’re disabled, with extra monthly costs of nearly £975 on average.

Missing experiences:
86% of respondents missed out on experiences due to financial constraints, heightening the loneliness and feelings of isolation felt by many people living with rare disease. 

Considering these insights, at the time of survey (December-January), 93.3% of survey respondents said the government isn’t doing enough to address the rising cost of living with 86.7% very/quite concerned about the cost of living having a direct impact on their family’s finances, with these individuals also stating that they feel worse financially than last year 

So, how will the Autumn Statement affect people living with Inherited Metabolic Disorders?

Benefits:
From April 2024, it has been confirmed that benefits will rise in line with inflation, this is an uprating of 6.7% meaning an annual increase of £470 in annual benefits for 5.5 million households. Despite this, as we know from our survey, many of our communities cannot access these benefits due to the administrative burden associated. More must be done.

Work Capability Assessments (WCAs):
From 2025
, the government wants to reduce the number of people who are declared unfit for work. This means people who are too unwell to work and have no requirement to look for work to receive benefits. With these changes, more people are expected to be declared fit for work and required to look for jobs or have their benefits cut. It will do this by changing some of the questions asked in the Work Capability Assessment.

This is unacceptable, as we know from our survey, IMDs often result in fatigue, pain and can come with discrimination due to misunderstanding meaning it can be hard to maintain a job and with over 50% of respondents reporting a household income significantly less than the median for the UK, this threatens to cut off what little support is available whilst pushing people into positions in which their health is at risk.

Back to Work plans for Universal Credit claimants:
From 2024
, as part of its Back to Work Plan the government say they will invest to help tackle long-term unemployment, including supporting and incentivising unemployed Universal Credit claimants to find work.

They are also proposing the following measures:

  • Phase 1: Unemployed claimants will be offered more regular support.
  • Phase 2: If after 6 months, a claimant hasn’t found a job they will be referred to the Restart programme. Restart is a 12-month intensive job search programme providing support to tackle barriers.
  • Phase 3: If, after 12 months on Restart, an individual has not found work, they will have a review with their Work Coach. This is to determine what future conditions might look like. If no suitable job exists locally, a claimant will be made to take on a time-limited mandatory work placement. If they refuse to accept this placement, their claim will be stopped. This will also end their access to additional benefits such as free prescriptions and legal aid.

We are concerned about phase three. IMDs are often misunderstood due to their rarity and as such the time-limited work placement may be unsuitable for the individual and if individuals living with IMDs are threatened with sanctions, this may create a situation in which people are forced into unsuitable roles that may worsen their condition. This must be addressed.

Note: These changes only apply to those who receive the Universal Credit standard allowance – not to those who also receive the health element of Universal Credit. No one in the Limited Capability for Work Related Activity or Limited Capability for Work groups will face benefit sanctions and all support offered will be voluntary.

Information from: Scope

Non-financial announcements

The Rare Disease Launchpad:
Genomics England, along with a consortium of partners, has launched a Rare Therapies Launch Pad generating evidence on whether a pathway for new therapies can be implemented in the UK for children with ultra-rare diseases. This is a government-supported pilot.

Clinical Trial Accelerator Networks:
The government has announced two new Clinical Trial Delivery Accelerators (CTDAs). These will involve multidisciplinary teams of around 20 people, embedded within existing infrastructure, to focus on delivering studies in innovative ways. They are designed to test new more efficient delivery models, addressing common problems, with a view to learning what works and then scaling the approach in the wider research system.

Have you been affected by the current cost of living pressures?

Please feel free to reach out to our individual support lead, Helen Morris, via helen@metabolicsupportuk.org or check out our benefits and money management section of the advice hub.

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Update by Jonathan Gibson

Hi, I’m Jonathan and I work as the Policy and Public Affairs Officer for Metabolic Support UK.

My background is in genetics and global health and I’ve also worked for the NHS within a busy biomedical science laboratory for over four years undertaking the analysis of samples to ensure you receive the right treatment and diagnosis.

As a creative and compassionate individual, this really is my dream job so I look forward to working closely with the team and our community to tell the stories of IMDs to the world.

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