What does the Spring budget mean for people
living with Inherited Metabolic Disorders?

We recently released our “Cost of Living with an IMD” report which documents the effects of the current economic climate on our communities.

Through the research undertaken to produce this report, we found that people living with or caring for people living with Inherited Metabolic Disorders are unduly affected, with the main themes identified 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 £600 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

Support with Energy Bills:
The Energy Price Guarantee, which is protecting households by capping typical energy bills at £2,500, will be maintained at the same level for a further three months over April, May, and June, worth £160 in total for a typical household.

The Energy Bills Support Scheme, which has been in operation since October 2022, reducing household energy bills by £66 or £67 through payments to suppliers is however coming to an end on Friday, 31st March 2023.

Childcare:
To support parents on Universal Credit move into work or increase their hours, the government will increase the amount of Universal Credit support for childcare costs by almost 50% & will pay this upfront instead of in arrears. Families will now be able to claim £951 for 1 child & £1,630 for 2 children.

The government will also offer 30 hours of free childcare for every child from the age of nine months, where all adults in the household work. Further to this Jeremy Hunt says he wants all schools to be able to offer wrap-around care from 8am to 6pm, either on their own or in partnership with other schools. He says the ambition is to have this in place by September 2026.

Access to work:
£400m will be allocated for mental health and musculoskeletal support to help people back into work and there will be a £3m pilot to help people with disabilities transition into the workplace labelled “Universal Support” in which up to £4,000 will be spent per person, and the scheme could help up to 50,000 people a year.

Further to this, disabled people will be able to seek work without fear of losing the support of benefits they currently claim.

Fuel duty:
This tax on petrol and diesel has been frozen for 12 months and the 5p cut at the pumps will remain, meaning the prices of fuel for vehicles will not rise significantly as was expected if action were not to be taken.

Although there have been movements from the government to generally improve people’s available income in terms of continued support for energy bills and fuel, as well as increasing people’s access to work, little has been done that will address the issues raised by our communities with regards to cost-of-living.

At Metabolic Support UK, we’ve heard your voice and are ensuring the issues you’ve highlighted to us through our cost-of-living research are raised to the highest levels and as such we’ve ensured our report has been viewed by the Department of Health and Social Care for England and The Scottish Government.

Further to this, we’re in conversation with other charities and NGOs to ensure the priorities of the most vulnerable addressed and have acted as signatories on open letters calling for cheaper energy and water bills for those living in low-income households. Additionally, over the last 3 months MSUK received 5 x more enquiries from families seeking financial support than during the same period last year and so far in March alone enquiries relating to benefits claims due to rising costs accounted for more than 1/3 of all incoming enquiries and as such have provided individual support relating to these enquiries.

Moving forward we will continue to work for you to ensure there is support made available to address the issues raised by our communities specifically. Your Rare Condition. Our Common Fight.

Contact out friendly team clicking the button below and completing the contact form and we’ll be in touch!

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.