This article relates to the CQC key question: Is your practice effective? Is your practice caring? and Is your practice responsive to people's needs?
The CQC will look at whether practices provide care that is safe, effective, caring, responsive and well-led for 'people whose circumstances may make them vulnerable', which includes people with a learning disability.
People with learning disabilities are recognised as a particularly vulnerable group whose health outcomes have been shown to be far worse than those of the general population.
Our view is that it is important to look at the care provided to all people using a GP practice. On inspection we see that the quality of care provided to people with a learning disability is often an indicator of the quality of care provided for both other vulnerable groups and the general population.
People with a learning disability have far worse health outcomes than those in the general population:
- They are more likely to have poor nutrition and be obese. There is evidence that they are less likely to receive interventions for their obesity including screening for thyroid disease and diabetes.
- They die prematurely from amenable causes and there is a huge difference (approximately 48%) in amenable death rates in the non-learning disability population. Amenable death rates are those considered avoidable due to medical intervention. Preventable deaths are similar between the two populations.
- Attendances for screening in the three national cancer screening programmes (breast, bowel and cervical), is very low compared to the general population
- Uptake of immunisations such as for flu is very low and deaths due to respiratory infection rates as one of the highest causes of amenable death.
The prevalence of learning disability is often quoted as about 2.5–3% of the general population based on education databases. However, most GP learning disability registers indicate a prevalence of about 0.4%.
The ‘missing’ 2% might be those with milder learning disability, but some is likely to be other diagnoses that are on the disease register but not separately recorded as a learning disability (for example, people with Down's Syndrome, other syndromes, autism or cerebral palsy that also have a learning disability).
What do we expect to see in our inspections of GP practices?
From April 2014, as part of an enhanced service, anyone with a learning disability over the age of 14 should:
- be offered a specific learning disability related annual health check, and
- have a health action plan to address health issues identified in this check.
The practice receives £116 for each completed check.
GP practices delivering this enhanced service are required to:
- Have a nominated lead for learning disability who coordinates
- staff training and updates for other practice staff
- delivery of the enhanced service and the annual health checks.
- Check that the numbers of people on their registered list with a learning disability reflect the current prevalence per list size (at least 0.4%).
If a practice is not providing this enhanced service we expect them to inform patients that they do not offer this service and to support people with a learning disability to receive an annual health checks and to develop a health action plan.
Uptake of this annual health check nationally is about 50% of those on GP registers with a learning disability. The target is 75%.
There are legal requirements under equality legislation for GP practices to make reasonable adjustments to make sure the person with a learning disability can use a GP practice on the same basis as others. Reasonable adjustments should be considered for each person with a learning disability, some examples of possible adjustments include:
- Flag patient records where patients have a learning disability. This should include noting what reasonable adjustments are needed so that all staff are aware.
- Make reasonable adjustments according to the individual’s needs. Consider, for example, providing additional time for appointments, using telephone calls instead of standard letters or provide 'easy read' information.
- Share information about patients with learning disabilities with other care providers, such as outpatient services. This ensures that services are notified in good time about the reasonable adjustments they might need to make when providing care to these patients.
Given the poorer health outcomes for people with learning disability we also expect GP practices to support people with a learning disability to participate in screening and immunisation programmes. Reasonable adjustments may be needed to support people with a learning disability to participate. Where a person with a learning disability refuses it may be that their capacity to make that particular decision is impaired. In these cases we would expect GP practices to carry out a best interest assessment.
Some examples of good and outstanding practice for people with a learning disability
We have found the following good or outstanding practice examples from our inspections of GP practices so far:
- Working with charities/community groups to invite people with a learning disability to the practice to look at the practice's processes and suggest ideas for improvement.
- Using flagging systems to note reasonable adjustments so that all staff know what might be needed on opening the patient record.
- Adopting electronic templates for the annual health check to produce a Health Action Plan that is meaningful, easy to understand and is followed up.
- Including people with learning disability and their carers in patient forums.
- Pro-active systems to target people with learning disability for screening and immunisation.
- Developing processes and tools to maximise the likelihood of a successful annual health check, for example:
- check easy read questionnaires and videos
- flexible appointment times or offers of visits
- reasonable adjustments and creative approaches to communication or carrying out investigations (using anaesthetic creams for needle-phobic adults, seeking advice from community learning disability teams etc.)
- Working within their locality to share good practice and learn from each other.
- Confidential Inquiry into Premature Deaths of People with Learning Disabilities (CIPOLD)
- Improving Health and Lives Learning Disability Observatory
Professor Nigel Sparrow is senior national GP advisor and responsible officer at the CQC
More CQC resources
- View the full CQC Essentials series on Medeconomics
- CQC's recommended reading to help practices meet regulations and prepare for an inspection