Earlier this year, the CIIP submitted its first policy response. The Government Statistical Service (GSS) requested feedback on the categories they recommend for recording data about the types of impairment (disability) present in the UK population. Thanks to the excellent data our participants contributed, we were able to make a powerful representation on behalf of people with energy limiting chronic illness which received a positive response from government statisticians.
The problem of impairment disability categories
When we take part in surveys, or fill in admin forms, that ask what kind of impairment, disability or health condition we have, we commonly encounter the following, or similar, categories:
- Visual impairment
- Hearing loss
- Learning Difficulties
- Physical impairment
- Mental health condition
- Long term health condition
People with chronic illness typically select “Long Term Health Conditions”, and possibly “physical impairment”. However, none of these options clearly conveys information about the aspect of our condition that causes the most restriction in day to day life. Our focus group research, as well as our survey data, clearly indicate that fatigue, or limited energy are the most restricting feature for a broad range of chronic illnesses.
The UK’s Office for National Statistics does recommend the category “stamina, breathing, fatigue” (SBF) for use in surveys on disability, following WHO guidelines. However, apart from in the government’s Family Resources Survey (FRS), this category appears to be rarely used by either statutory authorities or non-governmental organisations in the development of policies and services for disabled people.
The problems are twofold:
- According to the FRS, the SBF category is the second largest impairment group among disabled people in the UK, (after mobility impairment) yet it is almost never captured or recorded by the disability sector. As a result, we remain invisible as a group of disabled people, and government policies don’t reflect or address our needs.
- Our research has shown that the terms proposed by the ONS are problematic. Poor stamina is seen as being associated with laziness and fatigue is associated with images of dramatic fainting couches and hypochondria. The language does not reflect that used in the chronic illness community.
Our submission to the GSS consultation
Our survey results showed that 69% of respondents selected the SBF category to describe their impairment. However, when we proposed the alternative term Energy Impairment, 87% agreed that this accurately described their condition some (15%) or all (72%) of the time. Further analysis showed that 22% of total respondents identified with the term Energy Impairment but did not select the SBF category when asked about their impairment type.
In our response to GSS, we welcomed a category of impairment that captures problems with stamina and fatigue, but we recommended the term Energy Impairment as an alternative to SBF, because it is better aligned with the self-identifying terms used by this significant group of disabled people.
Based on the arguments we made to the GSS, they have concluded that while the categories will not be updated at present, the next time they plan to review the language on impairment they will test the term Energy Impairment for potential inclusion in the new standard.
Why does this matter?
- The GSS does a lot of work to harmonise data. What that means is that they try to encourage all researchers and institutions (such as charities, or other government departments) to use standard categories and data types to record information. This is important because it makes research more powerful by making it easier to compare and combine existing data sets to uncover new results. Having the language of Energy Impairment as part of these recommended standards makes research about those with energy impairment easier, more likely, and more powerful. It also makes us harder to forget, overlook or ignore.
- While Stamina, Breathing and Fatigue is currently the second largest reported impairment category in the UK, the survey results indicate there may be some under-reporting due to the unpopularity of the terminology used. If we have standardised terms that reflect the self-identity of people with ELCI, we may have more accurate reporting of numbers. Equally importantly, we hope to persuade organisations of, and for disabled people, to adopt this category and to better include people with ELCI in their work.
3. One of the main goals of the initial research conducted by the CIIP has been to give chronically ill people a vocabulary to describe our symptoms and experiences that works for us and doesn’t encapsulate ignorant and damaging associations. If the language of energy impairment is included in a future version of the GSS categories that helps familiarise researchers, legislators, institutions and the public with that language and hopefully help improve the conversation around our illnesses and impairments.
By Victoria Clutton.