Abstract

Respiratory disease is one of the leading causes of avoidable death of people with a learning disability in England. Patients with a learning disability and/or autism who required reasonable adjustments for effective respiratory care during their Chest Clinic appointments, were being overlooked. They were high users of emergency/out of hours services. A specialist clinic / patient pathway was developed to empower the patients, encourage compliance, eliminate diagnostic overshadowing, ensure reasonable adjustments.
Aim- To empower the patient to manage/be involved in managing their own condition.
- Embed personalised care planning and shared decision making
- To improve compliance and improve quality of life
- To reduce admissions and use of emergency services.
The respiratory Nurse and HCA run the clinic. Each appointment is 30 minutes long ,adjustments are made to address sensory issues a patient may have. An accessible room is used and sensory lighting available. The first appointment is a ‘fact finding’ appointment, using the patient passport, establishing the patient’s preferences/ understanding. Follow up involves developing a management plan, including personalised material - easy read leaflets, self-management plans, incentive peak flow, visual aids and videos.
Findings- 25% reduction in ED/out of hours usage. 68% reduction in short acting beta agonist (SABA) use and 70% reduction in oral corticosteroid.
This could be due to improved engagement, concordance, greater understanding of self management, support availability or the reasonable adjustments being made.
Savings identified over £2000 during the 6 months of the project. Carbon footprint reduced due to less hospital attendances and less SABA use.

The development of the service has made a significant impact on the quality of care given to this group of vulnerable patients. It has empowered then to manage their respiratory disease. They have been issued with information at a level which is personally adapted to their literacy.