Are healthcare professionals aware and trained in dealing with Adult Congenital Heart Disease patients with learning difficulties? A questionnaire-based study

Dear Editor-in-Chief

Children with CHD are at increased risk of cognitive and motor disabilities.^1,2 Those with complex CHD and, particularly, cyanotic lesions are at the highest risk for neurodevelopmental impairment.^3,4 With the increasing survival of patients with CHD into adulthood, consequently 10% of Adult CHD patients have some form of learning disability.⁵ According to NHS England Congenital Heart Disease standards of care⁵, all patients should be seen and treated in an appropriate adult environment, ideally within a dedicated ward or outpatient space, taking into account any learning or physical disability. All healthcare professionals dealing with these patients must take part in ongoing education and training on working with adults with learning disability.

We sought to understand the awareness of our multi-disciplinary staff of the services available across our West Midlands Adult Congenital Heart Disease Network for our patients with learning disabilities.

Anonymous questionnaires were distributed to healthcare professionals working in all eight Outreach Centres and the Level 1 Adult Congenital Heart Disease Centre (University Hospital Birmingham). The questions included information on their current position, place of work, the frequency of their encounter with patients with learning disability, their previous training, and the awareness of inpatient and outpatient facilities available for these patients. Data were analysed only from the information filled by healthcare professionals in the returned questionnaires.

Seventy healthcare professionals (25% nurses, 39% doctors, 20% cardiac physiologists, and 16% healthcare assistants) completed the questionnaires. The majority of staff (n = 54, 46%) were working in the outpatient areas and were encountering patients with learning disabilities weekly (n = 28, 41%) or monthly (n = 32, 46%). Only 11% of staff (n = 8) had received formal training in dealing with these patients, while a further 31% (n = 22) felt that they had received some informal training during their career. The formal training consisted of the General Medical Council online interactive learning module on learning disabilities. Only 56% of healthcare professionals (n = 39) were aware of their hospital’s policy on learning disabilities; however, the majority were familiar with one of more of the facilities available in the outpatient (n = 48, 69%) and inpatient setting (n = 43, 61%) for these patients, such as provision to prioritise their appointment, resource boxes, sensory room, patient passport, and the role of Learning Disabilities Specialist Nurse. Nursing staff were more likely to have received some formal training in dealing with learning disabilities than doctors (61 versus 48%) and were more aware than doctors of the facilities available in the outpatient (89 versus 59%) and inpatient (67 versus 59%) setting for these patients.

To the best of our knowledge, this is the first study evaluating the awareness of medical and nursing staff of the services available to Adult CHD patients with learning disabilities. Overall, healthcare professionals have some knowledge of the facilities available and have received sporadic training. However, ongoing training and education is required to ensure appropriate and lifelong holistic management of all these patients throughout the network.