The Autumn Statement and You

22nd November 2022

What does the UK government’s Autumn Statement mean for people living with Inherited Metabolic Disorders (IMDs)?

We know this is a difficult time for many people; 100% of the inherited metabolic disorders community members we asked have been affected by the cost-of-living crisis and the cost of energy was the biggest concern. Today, we share some details on the Autumn Statement that may affect our communities and share what we are doing to support you.   

On the 17th November, the UK government’s Autumn Statement was released, which provides an update on the Government’s plans for the economy. In light of the cost-of-living crisis and the controversial September mini-budget that resulted in financial and political uncertainty, many across England and the devolved nations waited in anticipation for the Autumn Statement.

We hoped to see action taken to restore stability and provide support for those who most need it. The Statement aims to focus on these issues, with the Chancellor citing his priorities are stability, growth, and public services. They suggest the Statement is providing “fair solutions” despite taking “difficult decisions” but what does this mean for you? 

Key points for people living with Inherited Metabolic Disorders

NHS and Adult Social Care
Up to a total of £8 billion of funding will be made available for NHS and Adult Social Care in England during 2024-2025, which will support emergency, elective and primary care services. £4.7 billion of this will support the adult social care system, including £1 billion to support discharges from hospital into the community to support the NHS. 

This may seem like a large number, however, in 2021/2022, £136.1 billion of the Department for Health and Social Care ‘s budget was passed to NHS England and NHS Improvement for spending on health services, with £22 billion spent on Adult Social Care, making a combined total of £158.1 billion. Considering the magnitude of the issues this £8 billion is setting out to address, and the level of current expenditure, this figure falls significantly short of what is needed.

Energy Bills
The Energy Price Guarantee (which sets caps on energy prices) will be maintained throughout winter, limiting typical energy bills to £2,500 per year, but rises to £3,000 from April 2023.   

Cost of Living
In 2023-2024, an additional Cost of Living Payment of £900 will be provided to households on some means-tested benefits, and £150 will be awarded to individuals who receive non-means tested benefits. 

Means tested: A means test is a determination of whether an individual or family is eligible for government assistance or welfare, based upon whether the individual or family possesses the means to do without that help. 

Non-means tested: These do not involve a detailed assessment of means. You will qualify if you meet the eligibility criteria regardless of your income or capital. 


The government will raise benefits, including working age benefits and State Pension, in line with inflation from April 2023, with an increase of over 10.1%.   

Our statement

Whilst we support the actions taken to reduce the impact of the cost-of-living crisis, we are concerned that there is a large difference in the financial support for energy bills offered to those receiving means-tested benefits versus those receiving non-means tested benefits, with those receiving non-means tested benefits (such as Disability Living Allowance or Personal Independence Payments), only eligible for £150 in relief rather than the £900 allocated to those who are receiving means tested benefits such as Universal Credit. 

Scope states:
Life is already more expensive when you’re disabled, with extra monthly costs of nearly £600 on average.” 

For our community, these costs are emphasised. Medical appointments are based at specialised treatment centres which are often not on the doorstep. Our annual survey found than on average people regularly travel 50.3 miles to their appointments, with 73% travelling by car and 21% relying on public transport. Further to this, many people with IMDs require specialised diets and rely on foods which are generally higher in cost and more difficult to access.  

As we approach winter, our community also faces a double hit. An increase in viral infections posing a risk to many with IMDs and for children illness means their parents/carers must take time off work to care for them, and for many this is unpaid. This is in addition to keeping the home warm amid extortionate rising prices to avoid illness and balancing the financial pressures of living with or caring for a person with an IMD. In 2021, 48.2% of our community had either been forced to give up work or reduce their hours citing that the impact of doing so had been poverty, less money for the family, and less money to participate in social activities. In 2022, these same people are now facing energy prices that are double and rising. 

Via our helpline we already know that the most vulnerable have already ploughed huge amounts of finances into care and management often due to unbearable NHS waiting times, with some having sold their home to pay for care and therapies, and others relying on friends for handouts. Particularly in rare, we know there is a distinct lack of wider awareness about these unsustainable costs faced by our community.   

We call for an urgent assessment of the cost-of-living support payments for people receiving non-means tested benefits as well as the most vulnerable, including people living with rare disease, ensuring support is offered to all and that no one is left behind. 

We also await developments for our communities in other parts of the UK; the Department for Work and Pensions benefits are devolved in Northern Ireland, with some benefits also devolved in Scotland. This means power over these benefits has been transferred from the UK government to the government to decision makers in Northern Ireland and Scotland. Considering this, we hope to see action taken in line with the UKs to minimise the effects of the cost-of-living crisis for those communities or else we risk a two-tier system of benefits.

What are Metabolic Support UK doing for you?

Our Monday-Friday advice line is open to support you (10am-4pm): 08452 412 173 or 

We are partnering with Genetic Alliance UK on a cost-of-living report asking you what matters most so we know how to help 

We are following UK government policy developments and sharing timely, accessible information with our communities. 

Our online communities provide a place to connect and share with people with similar challenges and needs. 

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Written 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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