From cooking lasagne to meeting with friends: finding out what makes for quality of life amongst people with a learning disability

At Mencap, we centre our practice on the needs of the people we support: people with a learning disability. As a population they tend to have worse outcomes than other groups, so we wanted to ask all the people we support what would improve their quality of life – and then use that information to improve the support we offer them.

Some time ago we introduced a scheme called What Matters Most, which involved creating support plans for individual needs. For one person that might be attending football matches, for another feeling confident getting on a bus. It means that support plans are tailored to the individual needs of the person we support.

We built on this by introducing the Personal Outcomes Scale (POS), an internationally recognised tool for measuring quality of life in individuals with intellectual disabilities. Conducted using semi-structured in-person interviews, the scale consists of 48 questions ranging over eight domains: personal development, self-determination, interpersonal relations, social inclusion, rights, emotional wellbeing, physical wellbeing and material wellbeing. The aim is to provide a mix of qualitative and quantitative information about the domains that are widely agreed to make for a good quality of life.

The questions use a Likert scale, for example asking people how often they get to participate in social activities. The scores are then added to give a total for each domain. Other questions allow for free-text answers. Our overarching aim is to answer the question: “What make a difference to the quality of life for this person?”

Mencap is the only organisation in the UK to use the POS, and we intend to use the scale with all 5,000 of the people we support once a year. Because we prefer the interviews to be carried out in person, the pandemic slowed our efforts down considerably: we started before Covid hit, and so far we’ve managed to talk to approximately 400 people. Once we’ve reached our goal of 5,000 interviews, we’ll have a dataset that provides rich information about quality of life for people with learning disabilities. Each interview helps build the support plan for an individual but collectively they can also help change practice.

A long-term resource for improving quality of life

The Health Foundation funding we received enabled us to create a data analytics platform that we can use to identify themes and trends. Now that the platform is in place, we will continue to use it over the long term.

We’ve already identified some interesting findings, and the collective importance of food and cookery in everyone’s lives is emerging as a key theme. From learning how to cook lasagne, attending catering courses to having support staff that knew how to cook specific types of food. As a provider, we have practice frameworks relating to safe and healthy eating but is there more we can do to share best practice for individual needs and accessible recipes?

Similarly, we’ve found that technology now plays a major role in the lives of many other people we support, partly as a result of the pandemic. Some people talked about how important it was to be able to talk to friends and family online, and therefore needed better access to technology or the skills to use it effectively.

Small changes can make a huge difference

Now that we have that expanding dataset in place, we’re thinking about ways in which we could make the best use of it, both in improving our own practice and influencing policy by sharing what we’ve learnt with other charities and with public sector organisations. At Mencap, we have thought through our strategy with different lenses – individual, community and society. The data from the interviews can inform all three. So we could provide an individual with the help they need to cook lasagne, for example, but also look at the most common barriers are for people being able to access their local community – if we can provide an evidence base that helps influence change on those barriers we can help make changes to society.

We also hope that the dataset can inform more work that can help in teams across the charity. If the campaigns and advocacy team are looking at how the pandemic has affected to access to health care, we can look for conversations that highlight this. Similarly, someone in the technical team can access emergent themes around the use of digital tech in services to better provide equipment.

The result will be a resource that is both wide and deep, enabling Mencap and others to deliver better, more individual support to improve the quality of life for people with learning disabilities.