SCIE research briefing 2: Access to primary care services for people with learning disabilities

Published April 2004 (updated April 2005)

What is the issue?

Defining 'learning disability' is a complex and contentious issue. Recent policy defines learning disability as "a significantly reduced ability to understand new or complex information, to learn new skills with a reduced ability to cope independently which started before adulthood, with a lasting effect on development" (1). However, this may not resonate with learning disabled people's self-definition or that of their families. People with learning disabilities (PLD) experience higher rates of ill health (2, 3, 4) and have more complex health needs (5, 6, 7) than the general population, including epilepsy, dental problems (8), mental health and behavioural disorders and nutritional disorders (9). In addition to these difficulties, PLD have problems in accessing primary health care (10). Access is made more difficult because of communication difficulties and barriers in encounters between health professionals and PLD and practical issues such as long waiting times (11) and lack of consultation time (12). This can result in a failure to access primary health services such as men's and women's health screening, cervical screening (13, 14), genetic screening, dental checks and treatment (15, 16) and health promotion (17, 18). Basic health problems may be unidentified (5) or regarded merely as part of the learning disability rather than a medical problem (19).

Why is it important?

It is vital to tackle discrimination and inequality of access for people with learning disabilities so that this population has comparable access to health initiatives and services (including GPs, dentists, opticians and chiropodists) used by non-disabled people (1). Experts suggest that health and social care professionals need to be aware of social inequalities, risk, potential for abuse, vulnerability and the unique challenges experienced by PLD through the course of life, and harness the expertise of carers and support networks to increase access to services (1). Practitioners should work in partnership with PLD and their carers to translate the strategic statements in the Department of Health documents "Valuing People" (1) and the "NHS Plan" (20) into reliable, predictable and practical services, support and information. PLD still living in long-term care have particular difficulties in accessing primary health services such as immunisation (9).

What are the ethical considerations?

The ability of a PLD to give informed consent to services or treatment depends on them being given full (21) and relevant (22) information. This may not be easy in some decisions, such as whether to take HRT (23), contraception (3) or have screening (24, 25) or genetic testing (26). Guidance on consent has been provided by the Department of Health and by the Lord Chancellor's Department.

It is important that health professionals speak directly to the PLD in language they understand rather than by default or through a carer. The use of advocates, such as specialist nurses (27, 38), health visitors (38), and specialist GPs (7, 28, 29), and may be beneficial.Communication difficulties can be alleviated by the use of training programmes for health professionals and appropriate use of communication aids (30).

A number of studies have sought the views of PLD on women's knowledge of health issues (31), accessing health services with decision-making and consent (32), how they were dealt with by the primary care team (2), health screening and the attitudes of GPs (33) and access, health needs and how these were met and quality of care (5). However, there can be ethical problems in eliciting the views of PLD particularly when communication takes place via carers (5). Carers and families present a vital link between PLD and healthcare facilities (5), give support and information (23) and have the expertise about the person concerned. However, some PLD report feeling that opportunities for independence can be limited (2). Carers may miss health problems (34) or not recognise the importance of screening (9).

What are the views of users and user groups?

Common responses from PLD were that health professionals were helpful (5) and users had liked seeing them (33), but concerns were expressed about waiting times (5), anxiety whilst waiting (2, 33), the attitudes of health professionals (2, 5, 32), transport and surgery access problems (2, 5, 33), a lack of understandable information (2) and addressing carers instead of users (5, 32). Consultation with a user group in Sheffield found that users also wanted to be given more time during consultations, have the opportunity to ask questions and take information about the consultation home with them, available in different formats (written, visual, taped). Users also found the service provided by NHS Direct helpful.

What do I need to do?

Read the following Department of Health documents:

• You can make a difference: Improving primary care services for disabled people: Good practice guide For Primary Care Service Providers, Department of Health
  
  This guide is for those who own or run primary care health services such as GP or dentistry surgeries, community clinics, walk-in centres, out-of-hours services, pharmacies and specialists such as podiatrists. It is intended to help professionals understand their duties under the Disability Discrimination Act 1995 (DDA) and the action they can take to meet the needs of disabled service users.
• "Once a Day: one or more people with learning disabilities are likely to be in contact with your primary healthcare team. How can you help them?"
• "The Healthy Way: How to Stay Healthy - a guide for people with learning disabilities." This booklet details the responses of 500 PLD on healthcare issues.

Read:

• "Learning Disability Today: Key issues for providers, managers, practitioners and users" (Chapter 12 - Accessing health care: Being seen to be healthy!).
• Be aware of the health needs of PLD and the issues of choice and control (consent). Use this knowledge to contribute towards increasing access to healthcare and health promotion in your work. See Health Action Plans
• Be aware of Health Action Plans and the role of the health facilitator. See sections 6.12 to 6.18 of "Valuing People"

Who can I contact?

• Valuing People Support Team within the Department of Health
• Learning Disability Task Force within the Department of Health
• National Forum for people with learning disabilities
• The Home Farm Trust
• The Foundation for People with Learning Disabilities

Where can I find examples of innovative practice?

• Strathmartine Hospital in Dundee where a team of community-based nurses covers all aspects of healthcare for PLDs.
• The Wednesday Clinic in Dundee provides an access point to health services for women with learning disabilities.
• In the North West, five regional networks have been established to share information and best practice, develop care pathways, solve problems and encourage the involvement of service users and carers.
• St Georges' Hospital Medical School employs a number of PLD as training advisors and to teach medical students about treating PLD.
• Learning Disabilities Health and Social Care Partnership of Devon County Council provide a website for PLD giving comprehensive details of services.
• NHS Cancer Screening Programme has produced leaflets and picture books specifically for people with learning disabilities.

Resource sites

• See the Valuing People Support Team website.
• The Learning Disabilities pages in the Department of Health website has a list of other sites of interest at
• See the Appendix to "Once a Day" for details of publications and useful names and addresses.
• MENCAP Understanding Learning Disability
• See the National electronic Library for Learning Disabilities (NeLLD), part of the National electronic Library for Health
• Social Care Online
• Connects: the Mental Health and Learning Disabilities portal

Acknowledgements

Thank you to experts and service users for their contributions to this briefing.