This site is intended for health professionals only

Providing support to people with learning disabilities in primary care

A learning disability (or intellectual disability) is a lifelong condition that can make accessing healthcare difficult and lead to disadvantage and inequality.

People who have learning disabilities might be of any age and rely heavily on the services provided by doctors and nurses and other health and social care providers, especially primary care.

People with learning disabilities will need support from primary care professionals to understand information about their health and care needs. It is not always apparent that someone has a learning disability and therefore it will be important to always consider this possibility. Under the Equality Act (2010), healthcare services have a duty to address health inequality and ensure that reasonable adjustments are in place so as not to disadvantage people with learning disabilities.1

The number of people who have a learning disability has been increasing in the UK. In England specifically in 2013 there were 1,068,000 people with a learning disability.2 There are a number of reasons for this. Babies are being born earlier and surviving prematurity with the aid of improved technology and advancements in care, and many of these individuals will have a greater need for lifelong care and nursing support. Also, people are living longer. These developments are good news, of course, but people with learning disabilities still die prematurely compared with the wider community. Many reports have highlighted the need for health professionals to have greater understanding and awareness.2,3,4,5 Nurses are in a pivotal position to signpost to other services and make adjustments in their day-to-day work so these people can be supported to live happy, independent and fulfilled lives. 

Adjustments to services

One adjustment you can make is to check if your practice uses a flag system to alert staff that a person has a learning disability and to ensure these patients are provided with an annual health check. 

More specific adjustments include:

  • Easy-read materials that can be discussed with the patient and used to check understanding of a condition and treatment (see resources below).
  • Provide double-length appointments with a doctor or nurse to allow extra time for explanation.
  • Accommodating patients who are particularly anxious or agitated by giving them an early appointment at the beginning of a session or a late appointment when the clinic is quieter.

With these personalised adaptations, the patient is far more likely to have a better experience when accessing care services and have less fear of them.

Communication

Communication is especially critical. A learning disability can affect how a person interacts with healthcare staff. It is important for the clinician to have thorough knowledge about the person’s history, symptoms, medications and pre-existing conditions. It is also important to know how they usually act. It might be helpful to seek information from a care worker, family member or anyone who spends time with the patient on a regular basis – and they should be listened to.

Characteristic health problems

People with learning disabilities are more likely to be underweight or overweight.1 Constipation is a common problem and can be attributed to poor diet, lifestyle or medication side-effects. They are more likely to experience poor mental health and earlier onset dementia. Chest infections are not uncommon and can be attributed to dysphagia and difficulties with eating and drinking. They sometimes result in early death. Epilepsy is around 20 times more common than in the general population.6

It is important to make sure that you do not let the learning disability overshadow another clinical condition. This is called ‘diagnostic overshadowing’ and has contributed to premature and unnecessary deaths.6,7 Health problems are not always diagnosed correctly and sometimes too late. 

People who have a learning disability often find it difficult to express how they feel or where it hurts and healthcare staff must be mindful of this at all times. Distress affects the way people communicate and patients may present with aggressive behaviour, self-harm or aggression. 

Healthcare professionals must understand that these behaviours happen for a reason and may be related to a clinical condition. Staff must be calm and supportive in such situations.

On many occasions, patients with learning disabilities are admitted to hospital as an acute emergency for conditions that primary care services would commonly treat much earlier.

Patient autonomy

It is common for health professionals to believe that a patient with a learning disability is not able to consent, but this is often not the case. 

People with learning disabilities have the same rights to make their own choices as everyone else, by law. Sometimes a patient may find it useful to have an independent personal advocate – these can be sourced by a local authority or local advocacy group. It is equally important not to impose your own values on a patient and understand that if they wish to make an unwise decision, they do not necessarily lack capacity. 

The communication between healthcare staff and the patient with a learning disability must be clear, checked for understanding, and should be assisted by tools and resources to achieve the best outcome. Primary care is a perfect setting to address many of the needs of people with learning disabilities by being sensitive to their needs, offering earlier interventions, health advice and health promotion initiatives. This will improve the quality of life for these people, who may not always articulate their needs in an effective way. 

People with challenging behaviour are more likely to be prescribed anti-psychotic medication. This should be carefully reviewed.8 Practice guidance has been developed by the Faculty of Psychiatry of Intellectual Disability.9 Doctors and nurses must ensure that prescribed medications are regularly assessed for effectiveness and appropriate use. 

Strengthening the rights of people who have a learning disability is critical. Legislation currently exists to provide safeguards but is not universally understood or applied. This must be a priority. 

Most primary care staff already have the skills to care for people with learning disabilities in a positive, safe and effective way, but further support is available from the community learning disability team and the consultant learning disability nurse in your area.

Useful resources

mencap.org.uk For learning disability support, advice and resources.

improvinghealthandlives.org.uk/publications For learning disability specific resources and data.

easyhealth.org.uk For accessible information.

rcn.org.uk For professional nursing guidance.

nice.org.uk/guidance For guidance on learning disabilities and challenging behaviour.

rcgp.org.uk For mental capacity toolkit.

References

1. Emerson E, Baines S, Allerton L. Health Inequalities and People with Learning Disabilities in the UK 2012. tinyurl.com/healthinequalities2012. improvinghealthandlives.org.uk/publications/1241/PeoplewithLearningDisabilitiesin%20England2013.

2. Royal College of Nursing. Learning form the Past – Setting Out the Future: Developing Learning Disability Nursing in the United Kingdom. 2014. rcn.org.uk/profesional-development/publications/pub-00387.

3. Royal College of Nursing. Connect for Change: an update on learning disability services in England 2016. www.rcn.org.uk/professional-development/publications/pub-005525.

4. Michael J. Healthcare for All. Report of the Independent Inquiry into Access to Healthcare for People with Learning Disabilities. 2008 dh.gov.uk.

5. Royal College of Nursing. Meeting the Needs of People with Learning Disabilities. 2013. rcn.org.uk/professional-development/publications/pub003024.

6. Mc Carron M, O’Dwyer M, Burke E et al. Epidemiology of epilepsy in older adults with an intellectual disability in Ireland: associations and service implications. American Journal on Intellectual and Developmental Disabilities. 2014;119:253-60.

7. Mencap. Death by Indifference. 2007. mencap.org.uk.

8. NHS England. The Use of Medications in People with Learning Disabilities 2015. england.nhs.uk/2015/07/14/urgent-pledge.

9. Royal College of Psychiatrists. Psychotropic drug prescribing for people with intellectual disability, mental health problems and/or behaviours that challenge: practice guidelines. rcpsych.ac.uk/pdf/FR_ID_09_for_website.pdf (2016) FR/ID/09.