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New recommendations for primary care providers have been set out which aim to support the health of patients with learning disabilities. 

It follows a study, supported by the NIHR Applied Research Collaboration (ARC) North East and North Cumbria (NENC) and published in BMJ Open, which explored how to improve access to primary care and annual health checks for people who have a learning disability.

People living with learning disabilities experience more health vulnerabilities, and so prioritising their health needs is important. Annual health checks can uncover unknown conditions, reduce preventable emergency hospitalisations, allow monitoring, and support continuity of care.

However, people with learning difficulties can sometimes face challenges and barriers when trying to access GP appointments and annual health checks, meaning that they can often miss out on the care they need.

Barriers include fear, embarrassment, time, and carer unawareness of health problems. People with learning disabilities may also lack assertiveness and communication skills, or need a carer to support with an appointment.

Recommendations co-produced with service users

The study gathered views on ways to improve GP primary care access for people with learning disabilities, and worked with service users and professionals to co-produce recommendations for change.

The researchers worked closely with members of the Learning Disability Network North East and Cumbria throughout the project. They interviewed people with learning disabilities, and those who support them, to find out their views on how easy it was to access primary care and health checks. They also spoke to health care providers. All stakeholders identified issues or mismatches between patients’ needs and what primary care could currently offer.

The research highlighted several issues that have an impact on people with learning disabilities attending primary care appointments – and provided some recommendations for primary care.

The research led to the co-production of a set of recommendations for primary care, based around five themes:

• Prioritisation – including offering longer appointments and allowing enough time for thorough health checks for patients with learning disabilities
• Proactivity – including accurately identifying patients with learning difficulties, and reaching out to them
• Innovation and improvement – including better training for health professionals and sharing good practice
• Personalisation – people with learning disabilities valued seeing the same person, and it supports continuity of care
• Prevention and follow-up – after the appointment, supporting patients with information to make healthy choices, or supporting them to make any follow-up appointments.

Other recommendations from the research, included:

• Provide spaces for people with different needs
• Use health questionnaires
• Offer extra help for those living unsupported
• Having a proactive, flexible approach to suit the person
• Health professionals should use plain language and avoid jargon – including renaming ‘annual’ health checks to ‘yearly’ health checks

Lead researcher Dr Simon Hackett from Newcastle University said: “Our research highlights that improvements are needed in primary care to meet the needs of patients with learning disabilities. One key recommendation is that people with learning disabilities should be prioritised for annual health checks, and supported to attend them.

“This work, which was co-produced with patients and their carers, provides some clear recommendations for primary care providers to use and build on – and which can be used immediately, alongside existing guidance.

“We hope that the recommendations will help primary care providers to support patients with learning disabilities more effectively.”

This study was commissioned and funded by North East Commissioning Support (NECS).

Read the full research paper – published in BMJ Open