The Cost of Living with an IMD
A word from MSUK
Note: We've given our respondents an alias for privacy purposes.
We recently shared our Cost-of-Living survey which aimed to understand the effects of the current economic climate on our communities. This survey captured insights from people representing 12 unique Inherited Metabolic Disorders (IMDs) and the results are found in this report. We just wanted to let you know that we're here for you! Whether you're in need of practical advice, help with benefits or someone to talk to, we can support you through these times where everything just seems a bit much!
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Specialised diet Just as medication is used to manage other conditions, the maintenance of this specialised diet is imperative for many IMDs. Here's what our community said: 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.
The effects of this can be devastating, as described by Kathryn: "My daughter lives in a care home; we notice they use cheap sources of protein like cheese, bacon, sausages, and ham. She needs a low GI, cholesterol lowering, high protein diet, like lean meat, fish, pulses, fruit, and veg. Her seizures and behaviour are worse; we think she’s suffered cognitive deterioration." This is wholly unacceptable. The UK is the 5th richest country in the world so why are we letting the most vulnerable deteriorate over something so simple as food? More must be done.
Access to benefits Despite being eligible for benefits, many respondents stated that the process to claim benefits was "lengthy", "stressful" and “startling". This should be a process designed to make life easier, not harder. One of our respondents put this into context: Sandro dreads receiving their child’s benefits renewal letter because it is very in-depth, some of the questions are a bit strange and you’ve got to base the answers on your 'worst day’ to be considered.
Define benefits: Something that produces good or helpful results or effects or that promotes wellbeing. So why do benefits feel like a burden? 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. This is wholly unacceptable. 1948 saw the launch of the comprehensive system of social security recommended by the Beveridge report of 1942. If we were so far ahead in 1948, then why can't we make the processes easier for people to access now? More must be done.
Low income Living with, or caring for someone with, a rare disease like an IMD may affect the employment and income opportunities of family members This was highlighted by Neema who stated: ‘‘Having a chronic illness is almost like having a full-time job." And further demonstrated by our community's responses: 50% of respondents were working parttime. Only 1/4 of all respondents worked fulltime.
IMDs often result in fatigue, pain and can come with discrimination due to misunderstanding meaning it can be hard to maintain a job. Our community highlighted these issues: Sylvie works full time, is able to do so almost entirely from home and feels lucky that their work is ‘very accommodating' and ‘flexible’, although it still required them to make up the lost time which is difficult to do with fatigue and pain. Gerald changed roles at work to avoid discrimination and to allow for remote working; this has ‘helped quite a lot for [their] quality of life’ but has come with a decrease in salary. This is wholly unacceptable. 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. More must be done.
Missing experiences 86% of respondents missed out on experiences due to financial constraints. This heightens the loneliness and feelings of isolation felt by many people living with rare disease. Esme put this into context: "When you’ve already lost so much because of your health in terms of freedom, you really don’t want to be compromising on those small things."
Support must be given to the most vulnerable: When we think about how to help those living with rare disease there is often focus on helping people access medicines. Despite this, 95% of rare conditions have no approved treatment. We must help people improve their quality of life whilst treatments are being developed. This is wholly unacceptable. There is often focus on the extension of life but not the enjoyment of life for people living with a rare condition. We must remember one key thing...these are people, not just patients. As costs rise, we see a decline in people's limited disposable income. The first things to go are activities people deem as enjoyable. More must be done
More must be done 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. Our communities represent the most vulnerable and our results have shown that the current economic climate is unfairly affecting this group. The government must do more to ensure no one is left behind.
What are we doing to help? Metabolic Support UK, as always since 1981 are here for you. Below we've detailed the actions we're taking to address the issues you've raised: Signed open letters calling for cheaper energy and water bills for low-income households. Released cost of living resources. Influencing policy to better support you. Providing individual support for accessing benefits.
Metabolic Support UK is a charity registered in England and Wales (1089588) in Scotland (SCO44634) and a Company Limited by Guarantee (04267454).