NICE has recently published 2 quality standards aimed directly at those designing services for people with a learning disability and behavior that challenges and at improving care and support for people growing older with a learning disability.
Our team set itself an ambitious target to transform the formal process of developing the quality standards, which includes stakeholder and public consultation and two formal committee meetings, to make it accessible for people with a learning disability to take part.
For this the team recruited two lay members with a learning disability, referred to as ‘experts by experience’, to sit on each committee. Their involvement brought a lived-perspective to the discussions and decisions of the committees. Key information was presented to the committee in an easy-read format. An independent facilitator was also provided to support the experts by experience throughout the process.
During the 10-month development of these quality standards, NICE conducted user research with all key participants including the committee chairs, NICE technical analysts, independent facilitator, experts by experience and committee standing members. The evaluation included pre- and post-committee interviews and a survey of all committee members at the end of the process.
All participants in this research agreed that involving people with a learning disability in the discussion was important and beneficial to the committee, to the population covered and to the final published quality standards.
Elements of the process that the experts by experience found particularly positive were:
- Flexibility of the NICE quality standards team to action requests from the experts by experience, or to provide a clear explanation if it was not possible to accommodate their requests.
- An additional meeting with the facilitator prior to the committee meeting allowed for discussion and clarification. This helped the experts by experience articulate their thoughts better in the meeting and gave them more confidence.
- The facilitator being independent of NICE.
- Good chairing of the meetings and being treated equally with other committee members.
An important lesson the team drew from their experience is that there’s no standard approach to involvement. Alternative engagement approaches may have to be considered for example, to support individuals with more complex learning disabilities or those who are less familiar with working in guideline committee settings. The assistance of a skilled and independent facilitator was crucial both to support and give confidence to the people with a learning disability on our committees and as a source of advice to the technical team leading the development of these standards.
Both of the final, published quality standards emphasise to providers and commissioners the importance of an annual GP health check for people with a learning disability, which is likely to lead to the identification and management of underlying health problems at an earlier stage. This aligns with the objectives in the NHS Long Term Plan on improving health outcomes for people with a learning disability, and supporting them to better manage their health.
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