Position statements

The budget and you: 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? 

Read our response here:

Our response to the innovative medicines fund


Details were announced this week about how patients in England can get early access to more cutting-edge medicines through a new fund, the Innovative Medicines Fund (IMF). The IMF will see up to £340million made available to fast-track promising treatments. As an extension to the existing Cancer Drugs Fund, it aims to provide access to potentially life-saving and life-changing drugs for rare and genetic diseases, including many inherited metabolic disorders (IMD).

It means that approved medicines could be prescribed before final recommendations are made on whether the medicine is deemed cost-effective for routine use on the NHS. Where there are significant uncertainties about the effectiveness of new treatments that limit their ability to be positively recommended by NICE at the time of their evaluation, the IMF provides funding for a time-limited period on a managed access basis whilst additional evidence is generated.

Read our response here:

Our response to the Queen's speech, 2022


The UK Government announced its legislative agenda in yesterday’s Queen’s Speech, with 38 Bills listed that the Government looks to introduce in the coming year. 

The Queen’s Speech focused on measures to grow and strengthen the economy, such as the Levelling Up and Regeneration Bill which looks to cement the government’s flagship policy of driving localised growth, empowerment and regeneration. The speech outlined plans to set levelling-up missions and publish annual progress reports, which will be key in measuring progress on the ambition to level up disparities in health outcomes, such as narrowing the gap between areas with the highest and lowest levels of healthy life expectancy. 

Read our response here:

Cost of living crisis


The cost of living is rising across the UK at its fastest rate in 30 years. Price increases are forecast to peak at 8.7% in autumn and the energy price cap is set to increase by 54% in April. Household incomes are predicted to see the largest drop since records began. 

Read our response here:

Rare in Conflict


At Metabolic Support UK we watched the events taking place across the globe this week for Rare Disease Day with a sense of pride but also frustration. For us, it felt uncomfortable to celebrate raising awareness for rare diseases when the background of the conflict in Ukraine was a harsh reminder that we are not doing enough.  

We are not doing enough for our metabolic community across the globe and want to change that. Rare Disease Day 2022 threw into sharp relief the responsibility we have to connect our awareness raising work to tangible policy changes with a focus on human rights for all.

Read our response here:

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