Companions in learning disability primary care consultations

People with a learning disability are commonly supported during their primary healthcare consultations by another person. This may be a family member, or it may be paid care / support staff from a residential care home or other supporting living arrangement. This support person is crucial in enabling the person with learning disabilities to get the most from a healthcare consultation. This study explored the companion role through literature reviews, interviews, and filmed consultations. Insights aim to guide good practices, identify barriers, and improve healthcare experiences for patients and their companions.

• Aims

  Research questions

  1. What do key stakeholders perceive to be ‘good support’ for people with learning disabilities in primary care consultations?
  2. What are the perceived barriers to giving or receiving ‘good support’ for patients with learning disabilities in primary care consultations? 

• Methods

  42 participants took part in focus groups. This included: 22 people with learning disabilities, 7 paid cares, 5 unpaid carers, and 8 social care service providers. Seven GPs took part in interviews. Participants were recruited from across the UK. All participants with learning disabilities had capacity to consent to take part. The focus groups and interviews took place in person and online, depending on the preference of the participants. The data was analysed using thematic analysis. 

• Findings

  Project Findings Report

   

  These findings are from a relatively small data set (49 participants in interviews and focus groups), and 17 filmed learning disability primary care consultations (11 primary care clinicians, 17 patients with a range of learning disabilities, and 19 companions. However, they suggest the following:

  • Companions play a central role in enacting successful healthcare consultations for people with learning disabilities. However, participants reported a lack of training or guidance for navigating the complexity of their role.

  • Successful support begins well before the consultation itself. Discussions regarding the reason for making the appointment, what will happen, what role the patient wants the companion to play, and what documents to take and who wants to hold them (medication lists, health correspondence, etc) can support patients to be actively involved in the consultation and reduce anxiety. This suggests the need for an accessible pre-consultation checklist for companions and patients to work through.

  • GPs play a vital role in putting patients at ease. This can be as simple as coming to get them from the waiting room, introducing themselves and outlining the structure of the consultation and what will happen.

  • Participants perceived a ‘misfit’ between health and social care services; the way healthcare appointments and access are structured often did not fit the reality of social care, or the needs of patients with learning disabilities. This can result in consultations being offered on days the patient does not receive social care staff support, leading either to staff attending on their days off, or potentially the person with learning disabilities not going, or going alone.

  • Companions play an important role in brokering understanding between clinicians and the patient.

  • Companions and GPs can momentarily exclude patients from the consultation by answering on their behalf; speaking about them rather than with them.

  • Who the GP asks the first question to can set the participation framework for whether the patient or companion is the interactional centre of the consultation.

  • Supporting decision making in practice is difficult for companions, balancing their own feelings, concerns and knowledge about the person with supporting autonomy and choice.

  • Companions often walked the line between supporting decision making and inadvertently influencing decision making. There is a lack of guidance and need for increased support for their role under the Mental Capacity Act (2005)