Table 6 Staff perceptions of the barriers and facilitators to children and young people with learning disability gaining access to investigations, procedures and treatments

Staff

Lack of knowledge about needs of CYP, how to identify CYP

Knowledge of specific needs of CYP

Lack of access to specialist staff

Access to LD nurses, named paediatricians, play specialists

Lack of time – plan, meet needs

Preparation and planning

Lack of training

Access to LD specific training and information

Lack of power

Negative attitudes – not wanting to care for CYP, believing it is parents’ responsibility to provide care, CYP will disrupt other patients without LD

Trust recognition of need to focus on LD and staff ‘champions’

Reliance on parents

Environment

Lack of appropriate space – lack of cubicles, too cramped

Access to appropriate space: cubicles, wet room, sensory room

Lack of quiet space

Access to quiet space

Lack of wheelchair access

Service related

Lack of coordination between hospital services and between hospital and community

Streamlining/coordinating appointments and providing flexible services

Lack of specialist treatments and/or procedures

Lack of staff capacity

Cost – staffing

Waiting times

Disparity of care and services – within and across hospitals

CYP

Unable to cope with delays and disruption to routine

Anxiety

Feeling stigmatised

Parents

Lack of knowledge of what is available

Lack of ability to articulate child’s needs

Too embarrassed to ask for what they need

Having an LD themselves

Language barrier

Feeling overwhelmed or negative about what can be done

Do not bring in hospital passport

Listening to parents

Working in partnership with parents

Resources and equipment

Lack of communication tools

Access to communication tools and hospital passport

Lack of hoists

Access to hoists

Lack of beds

Access to specialists beds

Lack of bespoke equipment

Access to adapted eating equipment, developmentally appropriate toys