Co-Producing Outcome Measures with People and Families in Learning Disability Services

July 14, 2026

Outcome measures are more meaningful when people with learning disabilities help define what success looks like and how it should be recognised. Families can also contribute valuable knowledge about communication, history, health and relationships. The Learning Disability Services Knowledge Hub reflects the need to connect this lived knowledge with practical support and accountable service delivery.

Co-production strengthens learning disability outcomes and quality-of-life measurement because it prevents providers from defining progress only through professional priorities, completed activities or standard service indicators.

The process also needs to reflect the realities of the support arrangement. Housing, staffing, transport, compatibility and access to specialist services can all affect what outcomes are possible. Connecting co-produced measures with learning disability service models and pathways helps teams identify whether limited progress arises from personal circumstances or barriers within the system.

What co-producing outcome measures means

Co-producing outcome measures means developing the definition, indicators and review process with the person rather than presenting a finished framework for approval. The person should influence what is measured, why it matters and how evidence will be gathered.

Family members may contribute knowledge that helps staff understand subtle communication, long-standing preferences, health changes and the meaning of particular relationships. Their role is valuable, but it should not automatically replace the person’s own wishes.

Co-production is therefore more than consultation. Consultation asks for feedback. Co-production shares influence over the questions, decisions and interpretation of evidence while retaining clear professional responsibility for safety, rights and lawful support.

Why it matters in real services

Professionally designed measures can appear objective while missing what the person values. A service may count activity attendance when the person cares more about seeing one trusted friend. It may measure reduced staff support when the person’s priority is feeling secure enough to communicate choices.

Families may also see changes that services miss. They can recognise subtle signs of pain, emotional withdrawal or declining confidence because they understand the person’s history across many years.

However, disagreement is possible. A family may prioritise protection while the person wants greater independence. Staff may focus on assessed needs while relatives emphasise familiar routines. Strong co-production makes these differences visible and works through them rather than claiming agreement where none exists.

What good co-production looks like

Strong services demonstrate that involvement is accessible, repeated and connected to real decisions. Meetings alone do not prove co-production. People need information in forms they understand, enough time to respond and evidence that their contribution changed the outcome framework.

Providers should be able to evidence:

how the person communicates preference, satisfaction and refusal;
which outcomes were proposed by the person, family and professionals;
how different views were explored and resolved;
the agreed indicators of progress, stability or decline;
how daily staff practice contributes to each measure;
how the person and family receive accessible review information;
whether agreed measures remain meaningful as circumstances change.

Operational example 1: redefining a community outcome

Context: A man in supported living had an outcome to attend three community activities each week. Staff records showed high attendance, but his mother reported that he appeared tired and rarely spoke positively about the activities.

Different perspectives were gathered: Staff, the man and his mother reviewed photographs, daily records and his responses before and after each activity.
The meaning of participation was explored: The team identified that he valued familiar people and music more than the number of outings completed.
A new measure was agreed: Success would include choosing activities, showing anticipation and developing repeated social contact.
Daily support was reshaped: The timetable reduced generic outings and protected one music group and regular café visit with familiar people.
Effectiveness was evidenced: He initiated attendance more often, showed less fatigue and developed regular contact with two group members, demonstrating improved quality rather than simply higher activity volume.

Balancing personal voice, family knowledge and professional judgement

Co-production does not require every person involved to hold the same view. The task is to understand the reasons behind different positions and reach decisions that respect rights, evidence and the person’s own priorities.

The distinction within moving from support activity to genuine personal impact is useful here. Measures should test whether support changes the person’s life, not whether professional plans were completed or family expectations were followed.

Where the person communicates non-verbally, providers need several evidence sources. Familiar staff and relatives may help interpret behaviour, but interpretations should be tested across time, context and different people. No single observer should hold unquestioned authority.

Professional judgement remains necessary where there are health, safeguarding or legal concerns. Co-production does not mean avoiding difficult decisions. It means explaining them accessibly, recording disagreement and continuing to involve the person wherever possible.

Operational example 2: co-producing measures for emotional wellbeing

Context: A woman with profound learning disabilities could not describe her emotional wellbeing verbally. Her family and staff used different language to describe when she was comfortable, distressed or socially engaged.

Known communication was brought together: Family members and staff compared facial expressions, movement, vocalisations and responses to familiar people.
Observations were tested in context: The team checked whether the same indicators appeared consistently across home, family visits and community activities.
A shared framework was created: Measures included relaxed posture, active engagement, avoidance, recovery time and anticipation of preferred experiences.
Recording guidance was made practical: Staff described what they observed before adding interpretation, while family feedback was captured after visits.
Improvement was demonstrated: Following changes to noisy evening routines, positive engagement increased and recovery from distress became quicker, providing a shared and credible picture of improved emotional wellbeing.

Workforce systems and consistency

Co-produced measures need to reach frontline practice. Staff cannot deliver outcomes consistently if agreements remain within review minutes or are understood only by the key worker and family.

Supervision should test whether workers understand what success means to the person and how their practice influences the agreed indicators. Managers can use specific records and observations rather than relying on general discussion.

Handovers should highlight meaningful changes in communication, choice, relationships and confidence. Staff need to know what evidence is being gathered and which observations may indicate that the measure requires review.

Consistency does not mean dismissing different interpretations. Variation can reveal useful information. The person may communicate differently with family, at college or with particular staff. Teams should explore why rather than forcing all evidence into one account.

Approaches to practical quality-of-life measurement with people who have learning disabilities can help services combine structured indicators with lived experience, communication and family knowledge.

Operational example 3: reaching agreement around independent travel

Context: A young woman wanted to travel independently to a local café. Her father supported the aspiration but remained concerned about road safety and how she would respond if the bus route changed.

The desired outcome was clarified: The woman identified privacy, confidence and seeing friends without waiting for staff as the reasons travel mattered.
Family concerns became specific: Rather than a general objection, the review identified crossings, missed buses and mobile-phone use as the main issues.
A shared plan structured the risk: The team used a positive risk-taking planning framework to agree progressive stages, safeguards and escalation arrangements.
Evidence was reviewed together: Journey records, confidence ratings, problem-solving and her father’s observations informed each reduction in support.
The outcome was demonstrated: She completed repeated journeys with remote check-ins, managed one route disruption appropriately and reported greater control, while her father’s confidence increased through transparent evidence.

Governance and evidence

Governance should show who contributed to outcome measures, where views differed and how final decisions were reached. The audit trail needs to include accessible involvement, agreed indicators, support actions, responsible staff and review findings.

Quantitative evidence may include attendance, choices, prompting, incidents or frequency of contact. Qualitative evidence should capture personal meaning, communication, emotional response and family insight.

Providers should be able to evidence that co-production has changed practice. A signed review form is weak evidence if the measures, routines and support remain professionally controlled.

This creates a clear line of sight from the person’s priorities and family knowledge to agreed measures, staff action and outcome. Strong governance also records unresolved disagreement and any safeguards used to protect rights and wellbeing.

Commissioner and CQC expectations

Commissioners expect providers to involve people and families meaningfully while demonstrating credible outcomes. They may seek evidence that feedback influences service delivery, that measures are personalised and that providers manage disagreement transparently.

Providers should be able to evidence accessible review materials, anonymised examples of changed support and outcome findings that combine personal, family and professional evidence.

CQC will examine whether people are involved in decisions, whether families are engaged appropriately and whether care reflects current preferences. Inspectors may compare review records, daily practice and feedback. Strong services demonstrate that involvement has practical influence rather than serving as a procedural exercise.

Common pitfalls

Calling a process co-production when people only comment on finished measures.
Using meetings as the only method of involvement.
Allowing family views to replace the person’s own communication.
Ignoring family knowledge because professionals hold formal responsibility.
Assuming disagreement means co-production has failed.
Using vague indicators that different people interpret inconsistently.
Failing to explain professional decisions accessibly.
Recording involvement without showing how it changed support.
Keeping measures unchanged after the person’s life or priorities have evolved.

Conclusion

Co-producing outcome measures gives people with learning disabilities and their families meaningful influence over how success is understood. It brings together personal priorities, lived knowledge and professional responsibility without pretending that every perspective will always be identical.

Strong services demonstrate that co-production changes daily support and strengthens the quality of evidence. By making involvement accessible, testing different interpretations and linking agreed measures to real action, providers create a credible line of sight from shared understanding to better outcomes and quality of life.