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Posted on 17 Jun 2024

During Learning Disability Week (17-23 June), the first Chronic Obstructive Pulmonary Disease (COPD) action plan in the UK, designed for patients with a learning disability, has been launched in Nottinghamshire. COPD is a common lung disease causing restricted airflow and breathing problems.

  Colleagues from Nottinghamshire Healthcare and Primary Integrated Community Services (PICS) have been working hard to bring to life a COPD action plan for patients with learning disabilities, cognitive impairment and poor literacy. With the aim of helping patients with a learning disability to have a better understanding of, and gain some control and autonomy over their condition.

The action plan includes details in an easy read format about how patients can look after themselves. This includes advice for what to do if they feel unwell, and how to use their inhaler. 

The planning for this action plan began when Hiedi Swift, Respiratory Nurse Specialist, Community Clinic Team Lead at Nottinghamshire Healthcare and Sarah Atkinson Learning Disability Nurse Practitioner, PICS,were working with a mutual patient who has a learning disability and COPD diagnosis, and they identified that an accessible COPD plan was needed. They started to look for one, but found that there wasn’t a plan locally, or nationally in this format.

Hiedi said: 

“We found that there were a total of 1,690 (8.28%) individuals with learning disabilities and/or autism with chronic respiratory diseases across NHS Nottingham and Nottinghamshire, and the LeDer Report 2022 sites respiratory conditions continues to be in the top (14.6%) causes of death of a person with a learning disability. These figures spurred us on to address this inequality and produce a resource that will help our patients have a much better understanding of their condition, and help to keep them as well as possible

“Sarah and I have worked really hard on this and we’re really looking forward to seeing the huge benefit this will have for our patients”

Service users were consulted throughout the project; and it is with their valuable feedback and advise that the resource was developed and created.

  Becky Sutton, Chief Operating Officer at Nottinghamshire Healthcare said:

  “We are really proud to see this fantastic resource launched this week and for us to be leading the way to be more inclusive to all patients with COPD.

  “Hiedi and Sarah have done a fantastic job and worked really well together to focus on how best to support patients, and help them to manage their condition. We hope the resource will eventually be used across the UK to the benefit of many more patients, after already gaining interest from Asthma and Lung UK; and from the Royal College of Nursing (RCN).

Brilliant job, well done Hiedi and Sarah”