Learning disabilities - Improving access to healthcare

Patients with learning disabilities may need assistance to access care.

Photograph: JH Lancy

People with learning disability and their carers often find it difficult to access appropriate healthcare.

Evidence for this includes the low levels of screening services offered to learning-disabled women.

Take-up of other health promotion initiatives is also low, and people with learning disability experience more physical and mental health problems than the general population.

Barriers to healthcare
There are several potential barriers to access to healthcare.

  • Clinical problems may be attributed to the learning disability rather than illness - diagnostic overshadowing
  • Communication problems.
  • Behavioural problems resulting in difficulty attending the surgery.
  • Lack of participation in decision making for patients and their carers.
  • Pressure on practice resources leading to reduced consulting time.

Clinicians obviously have a duty to ensure that all patients with learning disability receive good medical care. There is also a duty under the Disability Discrimination Act to make 'reasonable adjustments' to enable people with learning disability to have proper access to primary care.

Health action plans
Health action plans are one of the strategies specified by the 'Valuing People' White Paper1 to address this.

A health action plan is an individualised plan drawn up by the patient together with a 'health facilitator', who is usually a community nurse but may be another healthcare professional or a carer.

The plan records the person's health needs and any specific targets that need to be achieved. The patient can then take the plan to all of their healthcare appointments, which should improve communication with health professionals, improve access to mainstream services and reduce health inequalities.

The role of the GP and the primary care team is integral to this process in terms of providing and updating information, and in meeting primary healthcare needs. However, health action planning is a shared responsibility and each agency or professional is expected to play a role.

Example of an accessible Health Action Plan
Area of health need What needs to be done Who will do it?
Ears Gemma's ears need to be checked every six weeks (wax can build up affecting her hearing). Gemma needs to use her hearing aids to hear things properly. Gemma needs to go back to the hearing clinic to get hearing aids (the old ones have been lost). Staff from Tower project will support her to attend, if needed.
Eyes Gemma needs to wear glasses to help her see well and keep safe. Gemma does not always use them. Sometimes they get lost. Gemma's mum supports her to attend the appointments.
Medical investigation

Gemma would like to know why she has some difficulties in some areas. The reason why these investigations are carried out is to be able to plan for the future.

What investigations?

  • X-ray of Gemma's back
  • eye examination
  • heart scan
  • neurology appointment for Gemma's tiredness and memory being a bit vague
Gemma is to attend the appointments at the Genetics Clinic at the Royal London Hospital. Tricia can support Gemma with these appointments.
Heart Gemma has a small hole in her heart. Gemma and her mother will see the doctors about this in August.

Enhanced accessibility
A health action plan must be accessible at some level to the person to whom it relates. Depending on the individual, this may mean the inclusion of simple text, or pictures and symbols (see figure, opposite).

Since it is a personal plan, developed with the individual and their carers, it can be a powerful tool for health education.

Some community learning disability services have developed multimedia health action plans using Microsoft Powerpoint, which include pictures, videos and the spoken word.

They have proved popular with patients, perhaps because of their enhanced accessibility and ability to be personalised.

Health action plans can be initiated by anyone, including the primary care practice or other professionals working with the patient.

Subjects that might need to be included are: medical problems associated with a specific genetic syndrome; management of epilepsy; physical disability and sensory impairment; behavioural problems and mental illness; substance misuse; problems related to physical or sexual abuse; and sexual health, including sexuality.

General health matters relevant to people with learning disability can also be addressed, such as: oral and dental health; continence; mobility problems; screening for cervical and breast cancer; hearing and visual problems; immunisations; and medication and side-effects, including OTC medications.

Implementing the plan
For each identified health issue, there should be a clear action plan that specifies who is responsible for delivery. Actions may include referral to secondary care, health screening, health education and lifestyle changes.

To implement interventions, support may be required from carers and staff from the community learning disability service.

This may include help in attending hospital appointments, explanation of the purpose and results of investigations, and assistance with the initiation and monitoring of treatment.

There should be an agreed date for review of the health action plan to ensure that actions have been implemented and identify whether any new issues need to be addressed.

The process of generating a health action plan requires time and commitment from those concerned but, if it is done well, it can help overcome barriers to healthcare and lead to improved medical outcomes.

  • Dr Ali is specialty registrar in psychiatry of learning disabilities and Dr Hall is consultant psychiatrist at Tower Hamlets Community Learning Disability Service, East London. Dr Hall is also honorary clinical senior lecturer at Queen Mary College, University of London

1. DoH. Valuing People: A New Strategy for People with Learning Disability for the 21st Century. 2001.



Books Beyond Words series: www.rcpsych.ac.uk/publications/booksbeyondwords/bbwtitles a-z.aspx

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