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A Health Action Plan (HAP) is an individual plan, belonging to a particular person, that explains that person's health needs. It also describes what has to happen for those needs to be met. Some examples of Health Action Plans are linked to later in the article and also an outline health check for General Practitioners (GPs, Primary Care Physicians) and other Primary Care professionals to use as part of health action planning.

In England, the White Paper, Valuing People (Department of Health 2001), specified that everyone with intellectual disabilities should be offered the opportunity to develop a Health Action Plan. The plan is drawn up by the person themselves, supported by a Health Facilitator and in consultation with the primary care team and other relevant health professionals. It will usually be set out in a way that is accessible to the person. The person can then take the plan to health appointments. The aim is to produce a living document that is updated as the person's health changes. It can also be thought of as the health section of a Person Centred Plan or as a specific sort of patient-held medical record.

What is Health Facilitation?
Health facilitation describes the process of enabling people with intellectual disabilities to understand health issues and to access mainstream health services. This will include both service development work and person to person work with people with intellectual disabilities. The idea of health facilitation grew out of the work that many family members and care staff were already doing. Making sure a person can go to see a dentist if they have toothache, can attend regular dental checks, can have their eyes tested, can have a double appointment on a visit to the GP, and has the opportunity to take exercise, are all examples of Health Facilitation. So is liaison on behalf of people with intellectual disabilities with statutory health organisations such as the Patient Advisory Liaison services developed in each NHS Trust in England. Other examples are carrying out Clinical Audit to monitor and eliminate discriminatory practice, and ensuring that the information provided by health services is accessible. The Department of Health in England refers to service developments that improve access as "Level 1 Health Facilitation" and face to face work with service users who have intellectual disabilities as "Level 2 Health Facilitation".

What is a Health facilitator?
Anyone who is undertaking Health Facilitation is a health facilitator. The lead person who supports an individual to draw up a personal Health Action Plan is the Health Facilitator for that person. A Health Facilitator could be a relative, a partner, a paid care giver or a health-care professional, (Corbett et al. 2003; Department of Health 2002; Jukes 2002).

Background
Most studies of people with intellectual disabilities, internationally, show that although they experience more ill-health they actually consult their doctors less than the general population (e.g., Morgan, Ahmed, & Kerr 2000; Sullivan et al. 2003; Sullivan et al.2004; Baxter et al. 2006). People with intellectual disabilities are prescribed medication which affects the central nervous system more often than other people. Interestingly, they are less likely than the rest of the population to take other types of medication (e.g., Hogg 1993; Reiss & Aman 1998; Deb & Fraser, 1994).

When medication is prescribed it is less likely to be regularly reviewed. Repeated studies have shown that there are high levels of undetected morbidity in people with intellectual disabilities. (Morgan, Ahmed, & Kerr 2000; Baxter et al. 2006).

People with intellectual disabilities and their families often find it difficult to get health care in the first place. They may also experience problems with the standard of the care they get. (National Patient Safety Agency. 2004).For more information see two documents produced by the National Patient Safety Agency: Listening to People with Learning Difficulties and Family Carers talk about Patient Safety and Understanding the Patient Safety Issues for People with Learning Disabilities.

'Valuing People' (Department of Health 2001) acknowledges the many barriers to adequate health care that face people with intellectual disabilities. It requires the NHS to ensure that all mainstream hospital and primary care services are made accessible to people with intellectual disabilities. Disability Discrimination legislation also places new responsibilities on health services, (See You can make a difference: Improving primary care services for disabled people).

"Action for Health - How is it going?" on this site provides a useful summary of the development of UK policies and the degree to which they have been implemented, (Department of Health & Valuing People Support Team 2003).

In the developed world there is an increasing emphasis on people taking responsibility for their own health. Rather than "patients" people are described as "consumers" or "customers" of health services. People with chronic long term conditions are encouraged to become "expert patients" and take control of their own health care. People expect to be allowed to question health professionals and to be provided with accurate information to enable them to make informed choices about their health. People with intellectual disabilities, because they have had limited education and tend to be relatively disempowered, will be at a disadvantage in a system that expects well informed, articulate consumers. Health facilitation is one way in which these inequalities can be addressed.

The role of the GP and primary care team
Each primary care team should be aware which of the people who use their services have intellectual disabilities and should be prepared to become involved in the Health Action Planning process. If a patient has a Health Facilitator their name and details should be recorded in the patient's record. Any health professional coming into contact with that patient should ask to see their Health Action Plan and offer to add to it as necessary. Other forms of patient-held record such as epilepsy diaries, patient co-operation cards, anticoagulant records can form part of the Health Action Plan. Although the UK government does not say everyone with intellectual disabilities must have a Health Facilitator it does demand that one is offered. The Health Facilitator will often, but not inevitably, be a member of a local Community Learning Disabilities Team; (See also Department of Health 2002 Action for health - health action plans and health facilitation, detailed good practice guidance on Implementation for learning disability partnership boards. London: Department of Health)

It is good practice to ensure that every one with intellectual disabilities is offered regular health surveillance. This could involve a health related questionnaire, a screening examination or targeted checkups. Consent issues must be fully and appropriately addressed.

The St George's Health Check
At St. George's, University of London, a health surveillance programme has been developed which is administered by senior medical students as part of their primary care attachment. It consists of a questionnaire that can be completed by the person with intellectual disabilities with support from a care giver, or by the care giver if the individual 's degree of disability means that they cannot understand it. A simple physical examination follows, which can be extended if the answers to the questionnaire suggest a particular examination is indicated. This programme detects significant health problems in about 10% of those examined.

The primary care physician (GP) is sent a copy of the findings. You can view a copy of the St. George's Health Check here.

Person Centred planning.
It is important that the Health Action Plan is person centred. It should be drawn up by, or at least with, the person. Many people with intellectual disabilities have some sort of personalised care plan. The Health Action Plan forms part of this. Group work, drawings, photography, work books and drama can all be used to increase the health literacy of people with intellectual disability so that they can participate more fully in planning for their own health. For example, the 'Medication Matters' group at the Norah Fry Centre has developed work books to enable informed decision making by people with intellectual disabilities.

The Elfrida Society has a series of illustrated leaflets. 'Kramer on the Case' and 'Talk to Frank' present issues around substance misuse in an amusing but educational manner.

Books from the 'Books Beyond Words' series can be used to explore how people feel about particular health interventions. A list of useful materials and websites is appended. In some cases a health professional may realise that important areas of health have not been included in someone's Health Action Plan. This may be because the person, and possibly their named health facilitator, is not aware of the relevance of these issues. The health professional can offer advice on things like diet, exercise, smoking and alcohol, recognising that people whether or not they have intellectual disabilities, do not always take good advice. A few people with intellectual disabilities will be unable to make their own health choices in this way, usually because they do not have sufficient understanding of the implications. Different countries manage these issues differently.

The Care Programme Approach
In psychiatric services in the UK, service providers are required to record a Care Programme. (Simpson, Miller, & Bowers 2003). This is largely concerned with the identification, management and communication of risk, though it should also be person centred. 'Valuing People' (Department of Health 2001) suggests that for people using the Care Programme Approach, care planning and health action planning should be one and the same. It is not clear how this will work in practice.

For examples of Health Action Plans, see Department of Health 2002 Action for health - health action plans and health facilitation, detailed good practice guidance on Implementation for learning disability partnership boards. London: Department of Health, beginning page 13, Section 3.

Other useful articles on this site:
Action for Health- how is it going?
Assessment in Primary Care
Health Action Plans: Guidelines for General Practitioners and Primary Care Teams
Top Ten Tips
Clinical Communication
Consent
Health guidelines for adults with an intellectual disability
The St. George's Health Check Questionairre

Useful Titles from the Books Beyond Words Series include:
Food...Fun Healthy and Safe
Getting On with Cancer
Getting on with Epilepsy
Going to the Doctor
Going into Hospital
Going to Outpatients
Looking After My Balls
Looking After My Breasts - (Temporarily Unavailable)
Keeping Health 'Down Below'
Susan's Growing Up

Health Action Planning - References

Baxter, H., Lowe, K., Houston, H., Jones, G., Felce, D., & Kerr, M. 2006, "Previously unidentified morbidity in patients with intellectual disability", British Journal of General Practice, vol. 56, no. 523, pp. 93-98.

Corbett, J., Thomas, C., Prior, M., & Robson, R. 2003, "Health facilitation for people with learning disabilities. [Review] [32 refs]", British Journal of Community Nursing, vol. 8, no. 9, pp. 404-410.

Department of Health 2001, Valuing People, Department of Health, London.

Department of Health 2002, Action for Health - Health Action Plans and Health Facilitation. Detailed good practice guidance on implementation for Learning Disability Partnership Boards.

Department of Health & Valuing People Support Team 2003, Improvement, expansion and reform: ensuring that 'all means all', Department of Health, London.

Hogg, J. 1992, "The administration of psychotropic and anticonvulsant drugs to children with profound intellectual disability and multiple impairments", Journal of Intellectual Disability Research, vol. 36, pp. 473-488.

Jukes, M. 2002, "Health facilitation in learning disability: a new specialist role", British Journal of Nursing, vol. 11, no. 10, pp. 694-698.

Morgan, C. L., Ahmed, Z., & Kerr, M. P. 2000, "Health care provision for people with learning disability. Record linkage study of epidemiology and factors contributing to hospital care uptake", British Journal of Psychiatry, vol. 176, pp. 37-41.

National Patient Safety Agency. 2004, Understanding the patient safety issues for people with learning disabilities, National Patient Safety Agency, London.

Reiss, S. & Aman, M. 1998, "The international consensus process on psychopharmacology and intellectual disability", Journal of Intellectual Disability Research, vol. 41, no. 6, pp. 448-455.

Simpson, A., Miller, C., & Bowers, L. 2003, "Case management models and the care programme approach: how to make the CPA effective and credible", Journal of Psychiatric & Mental Health Nursing, vol. 10, no. 4, pp. 472-483.

Sullivan, S. G., Glasson, E. J., Hussain, R., Petterson, B. A., Slack-Smith, L. M., Montgomery, P. D., & Bittles, A. H. 2003, "Breast cancer and the uptake of mammography screening services by women with intellectual disabilities", Preventive Medicine.37(5):507-12.

Sullivan, S. G., Hussain, R., Threlfall, T., & Bittles, A. H. 2004, "The incidence of cancer in people with intellectual disabilities", Cancer Causes & Control, vol. 15, no. 10, pp. 1021-1025.

Kramer on the Case
'The DVD Kramer on the Case, is supported by an information leaflet. Both are available from the Baked Bean Theatre Company, Wimbledon Community Centre, 28 St. George's Road, SW19 4DP. Call 020 8944 0024 or write to the above address to purchase a copy for £30 (which includes P&P).