Disability

The Equality Act 2010 defines disability as a physical or mental impairment that has a ‘substantial’ and ‘long-term’ negative effect on your ability to do normal daily activities²². The Act defines ‘substantial’ as being more than minor or trivial – for example, if it takes much longer than it usually would to complete a daily task like getting dressed. ‘Long-term’ is defined as lasting for a period of 12 months or more – for example, a breathing condition that develops as a result of a lung infection.

Further guidance has been shared on the Equality Act 2010 and matters to be taken into account in determining questions relating to the definition of disability.

Historically, there has been a lack of data on disability and its collection is crucial in assessing how effective services are in their care and ensuring health and social care is inclusive of disabled people²³. Available research has shown that disabled people have reported barriers when accessing health services which in turn, can affect their health outcomes.

Ensuring that providers listen to the perspectives of disabled people is crucial in providing the appropriate reasonable adjustments for them to receive good quality care. Further information on the duty to make reasonable adjustments for disabled people can be found on the Citizen’s Advice website. NHS Digital and NHS England have additionally built a Reasonable Adjustment Flag in the NHS Spine to enable health and care professionals to record, share and view details of reasonable adjustments across the NHS, wherever the patient is treated.

Addressing barriers to the inclusion of disabled people requires an understanding of their experiences at a local level. Without this understanding, services risk contributing further to the isolation and stigmatisation surrounding disabled people and in turn, any disability-inclusive strategies would be ineffective.

A key point to consider in mental health services is when a patient’s mental health issues should be recorded as disability. The focus of this protected characteristic is the effect of the mental health problem, rather than the diagnosis itself.

Key points to consider:

1. An individual may experience poor mental health but if that lasts for less than 12 months and/or they are able to carry out normal daily activities, then that would not be defined as a mental health disability.
2. However, an individual’s mental health may cause them to be late for work or distract them from activities they are doing and would therefore have a substantial adverse effect and need to be reported.
3. If a person is receiving medication or treatment for their condition, they should ignore the effects of these when determining its effects on their daily activities, as the law looks at the effects without treatment or medication²⁶.

The guidance provided here summarises some of the key principles established by previous publications on collection of data on disability. Links to the full publications are also provided at the end of this section.

Before any data collection takes place, organisations should have developed an internal understanding on disability rights and perspectives, for example through policies or guidance. This will allow for the complexities of disability to be understood and the appropriate questions are asked to patients. When understanding how to ask these questions, disabled people should be consulted directly to gain the most accurate reflection of their lived experiences and questions can be tailored and amended following this. Where possible, these questions should be asked as part of regular data collection processes, as opposed to disability-specific activities, to not reinforce the exclusions patients may have already faced. This is particularly appropriate for children and young people as it can be empowering for them, increasing their confidence and allowing them to self-advocate and interact with decision makers²⁷.

It is important to ask about disability as soon as is appropriate, as the patient may be distressed if their disability is not considered in their care and this information should be identified by the patient directly²⁸.

‘The Hospital Communication Book’ has been developed by Surrey Health Action to help people who have difficulties understanding and/or communicating get an equal service in hospital, and has broader uses in wider health and social care settings.

When collecting disability data, it is important to explain why the data is being collected, how the data will be used, who will have access to the information and what the benefits to sharing this will be, all in a format the patient will fully understand. The people who use the service should lead this conversation. Healthcare professionals should create an inclusive, safe, and open space for people who use the service to allow self-reporting and talk openly about their disability to ensure it is accurately captured.

As referenced above, if an individual’s mental health problem causes them to have a long-term, substantial negative effect on their normal daily activities, it would be reported into the MHSDS under the Disability Code ’01 - Behaviour and Emotional’. Table 5 identifies the full set of data items required to record and flow this data to the MHSDS and IAPT Data Set.

Further guidance:

Inclusion counts: how to collect better disability data - Bond

Assessing a Patient with a Disability (nln.org)

Using disability data - GOV.UK (www.gov.uk)

Improving disability data in the UK - Office for National Statistics (ons.gov.uk)

Table 5

Extract from the Technical Output Specification; MHSDS table MHS007 and IAPT table IDS007 - Disability Type

Data item name - DISABILITY CODE

Intermediary Database (IDB) Element Name - DisabCode

Data item description - The DISABILITY of a PERSON.

This could be where the PERSON has been diagnosed as disabled or the PERSON considers themself to be disabled.