HEALTH ACTION PLANS: Some Guidelines for General Practitioners and Primary Care Teams
Malcolm McCoubrie, Sheila Hollins and Ruth Beckmann

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CONTENTS

I. OUTLINE
II. GENERAL NOTES
III. COMMON CONCERNS OF PEOPLE ATTENDING A HEALTH CHECK
IV. ORGANISATIONAL NOTES FOR PRIMARY CARE
V. HEALTH PROBLEMS AND KNOWN INTELLECTUAL DISABILITY SYNDROMES
VI. DOWN'S SYNDROME
VII. SAMPLE INVITATION LETTER
VIII. SAMPLE INVITATION LETTER (ILLUSTRATED)
IX. ST. GEORGE'S HEALTH CHECK QUESTIONNAIRE
X. ST. GEORGE'S HEALTH CHECK EXAMINATION NOTES

I. OUTLINE

Most studies show that although people with intellectual disability may consult their GPs for some acute illnesses, they do not consult with any regularity for pre-symptomatic care, and they do experience more ill-health than the general population.

Health Action Plans (HAPs), are one attempt to correct this. HAPs are in the process of being introduced in England, and primary care will very definitely be involved, as the Department of Health is encouraging all people with intellectual disability to agree a personalised HAP with their doctor. The level of involvement will vary between PCT areas, chiefly depending on the level of service agreed. In order not to lose Quality and Outcome Framework (QoF) points, practices will have to maintain a register of people with learning disability.

A Health Action Plan is part of a Person Centred Plan, drawn up by every man or woman with intellectual disabilities together with their carers, supporters and professionals. As well as health, each Person Centred Plan (PCP) will include strategies to deal in the long term with a person's aspirations and support needs e.g., in housing, education and employment.

There is a lot more to HAPs than mere performance of physical Health Checks (HCs). It will frequently be appropriate to consider a wide variety of factors which can impinge on health for which it will be better to use constructions other than bio-physical ones. The process of health action planning may be initiated by the Primary Care team by the patient or by the health facilitator.

Health Action Plan Stages:

Areas to be covered in Health Checks:

1. List of current health problems

2. Review of diagnoses

3. Physical Check - see IX and X - include consideration of:

i) general needs e.g., mammography, cervical cytology
ii) specific needs e.g., family history early vascular death, ca colon
iii) particular associations e.g., atlanto-occipital instability & Down's Syndrome

4. Health promotion needs e.g., swimming on prescription

5. Review of immunisation e.g., flu, pneumoccal and hepatitis A

6. Review of medication

7. Infection control e.g., Helicobacter

8. Dental review

II. GENERAL NOTES

1 Nomenclature
Internationally, "Intellectual Disability" is rapidly becoming the preferred term. The UK's current terminology is "Learning Disability" or "Learning Difficulties".

2 Obsolete
Synonym usage e.g., Mental Handicap, Low IQ, Developmental Delay, Special Educational Needs, is often offensive.

3 Registers
Practice, Primary Care Trusts and Social Services registers tend to be inaccurately low. You should expect to have 2 to 3% of your practice list to have intellectual disability. Be careful not to use Mental Illness as a primary diagnosis. Do not assume that people with Cerebral Palsy or Autistic Spectrum Disorder invariably have intellectual disability. Consider searching for specific syndromes e.g., Down's, Fragile X, Pierre Robin.

4 Associations
50% people with intellectual disability will have other significant health problems; 25% will have a physical disability, and 30% epilepsy.
Some associations e.g., hearing, visual deficits, and gastro-oesophagal reflux disorders are missed because people with intellectual disability are not listened to properly.

Established symptom patterns may be altered - e.g., acid reflux presenting as a cough rather than dyspepsia - and may result in under-recognition of disorders.

There are agreed general excesses of:

Obesity (and therefore of coronary heart disease, hypertension, stroke, metabolic syndrome and diabetes, sleep apnoea, degenerative joint disorder)
Psychiatric disorder
Behavioural problems
Self harm
Visual deficit
Hearing deficit especially from wax
Skin, nail disorder especially infection
Mobility problems
Gastro-oesophageal reflux
Dietary problems especially constipation
Podiatric problems
Pica

and reported decreases in

Substance Misuse
Alcohol and Smoking Related disorders

Around 50% of people with intellectual disability have no identifiable cause - the more profound the disability, the more likely is the aetiology to be identifiable. Genetic counselling apart, there are specific physical connotations which are briefly described in Sections VII and VIII.

5 Epidemiology
Diagnostic Overshadowing (the tendency to wrongly attribute all symptoms and signs to the disability, leading to the extension of the disability into other areas) makes many surveys suspect - don't fall into this trap at an individual level.

6 Administration
Staff training may need to include attitude examination and communication skills, particularly those suitable for people with sensory and other impairments; consultation times will probably need extending by a third; consider arranging sessions so they don't involve significant waits in surgery

7 Consent
At some time, the practice will need to discuss this matter at a practice meeting, perhaps with input from a specialist nurse.

8 www.intellectualdisability.info
See this website for more information, and discussion pointers

9 Overall
The views and opinions of the person with intellectual disability are paramount

III. COMMON CONCERNS OF PEOPLE ATTENDING A HEALTH CHECK

1 What's involved?

2 Will it hurt, embarrass, demean or will they get at me?

3 Do I have to?

4 Can I bring someone with me?

5 Do I have to bring someone with me?

6 Will they really listen to me?

7 Will they explain things I don't understand?

8 Is it being done just because they are told to, or is there some real benefit for me?

9 Will it mean pills, injections if they find something the matter?

10 Will it mean hospital if they find something the matter?

11 What are the risks of doing nothing?

IV. ORGANISATIONAL NOTES FOR PRIMARY CARE

1. Practice draws up Register of people with Intellectual disability; identifies Carer and Parents, and links this to existing recall systems.

2. Practice identifies Health Facilitator via Community Team or Primary Care Trust if the patient doesn't already have one (e.g., a carer).

3. Practice decides which screening tool to use; box-ticking exercises are best avoided. Consider the St George's Health Check Questionnaires (IX & X).

4. Questionnaire enquiry will need to be supplemented by a brief targeted clinical examination which responds to answers. Our experience at St George's suggests a one in ten significant pick- up rate, so build in time for referral, telephoning.

5. Have a supply of health booklets ready - the Community Team will probably have a supply. Use parts of the Books Beyond Words series.

6. Practice sends invitation to each person via carer with provisional appointment.

7. Health Screen completed.

8. GP reviews results, arranges any urgent action

9. GP reviews results with Health Action Plan facilitator, and
arranges referral if appropriate

10. Follow-up arranged

V. HEALTH PROBLEMS AND KNOWN INTELLECTUAL DISABILITY SYNDROMES

Commonly accepted are :

Apert
Gastrointestinal, urinary, congenital heart disease

Down
Sinusitis, otitis media, wax, hypothyroidism, congenital heart disease, leukaemia, celiac disease, testicular cancer, atlanto-occipital instability, Alzheimer's

Fragile-X
Congenital heart disease, connective tissue disorder

Klinefelter
Hypogonadism, ca breast, auto-immune disorder, osteoporosis

Noonan
Undescended testes, congenital heart disease, hypotonia

Prader-Willi
Hypotonia, scoliosis, skin artefacts, hyperphagia and obesity, delayed sexual development

Rett
Chest deformities and infections, motor deterioration

Tuberous sclerosis
Central nervous system, skin, chest, heart and lung, and renal involvement

Turner
Osteoporosis, diabetes mellitus

Williams
Renal problems

For further details, see 'physical aspects of learning disability' from the St. George's, University of London website.

For details of support Associations for the above syndromes, see Contact a Family.

Vl. DOWN'S SYNDROME

This very common cause of intellectual impairment is used as an example of the use of general and specific syndrome-related enquiries.

1. Review diagnoses

2. If known to have

Asthma
Chronic obstructive airways disease
Diabetes mellitus
Epilepsy
Ischaemic heart disease
Hyperlipidaemia
Hypertension
Mental health disorder (major)
Thyroid disorder

3. Men and Women

General enquiries

• physical and mental health, including independent living skills, mobility and exercise tolerance, appetite, interests, pleasures as well as standard questions such as weight loss, breathing, coordination, cognition

Specific enquiries for syndrome related disorder

• Cardiovascular problems: shortness of breath, chest pains, palpitations, ankle swelling, faints
• ENT disorder: deafness, dizziness, sinus pain, discharge
• Hypothyroidism: tiredness, weather preference, weight gain, hair loss, constipation, depression, concentration loss, skin changes
• Hyperthyroidism: weight loss, sweatiness, palpitations, anxiety
• Coeliac disease: weight loss or gain, diarrhoea, tiredness
• Alzheimers: tiredness, poor concentration, decline in functioning, memory problems, ataxia, falls, seizures, depression
• Cervical spine instability: torticullis, restricted neck movement, deterioration of manipulative skills, vertigo, gait disorders (and other cord compression signs), mastoid pain
• Sleep apnoea: tiredness, snoring, restless sleep, dry mouth

• General - prostatic symptoms - frequency, urgency, nocturia, incontinence, haematuria
• Specific - ca testis - swelling, pain

5. Women

• General - period problems, atrophic vaginitis symptoms. Family history osteoporosis, personal history bone fractures.
  Enquire about cervical smears (3/1 after 25yrs) and mammography (3/1 from 50-65)

6. Check family history - premature cardiovascular death, ca breast, colon

7. Health promotion interventions?

8. Review immunisation

9. Review any other medication; any non-prescribed?

10. Infection control - helicobacter, tinea pedis, intertrigo

11. Dental review done?

VII. SAMPLE INVITATION LETTER

VIII. SAMPLE INVITATION LETTER (ILLUSTRATED)

The Surgery High Street Anytown AB1 2CD Date Dear ... Please come and see your doctor/nurse facilitator for a Health Check. The doctor wants to check what help and advice you need to stay healthy. The health check doesn't hurt and isn't uncomfortable. It will be part of your Health Action Plan. Having your own Health Action Plan will show you what help you need to look after yourself and stay healthy. Please ring the surgery, or get someone to do it for you - the telephone number is…. Ask to talk to someone about Health Action Plans. You will be asked for your name and address. Then we will send you an appointment. We will also send you some forms to fill in and bring with you. When you come to the surgery, the doctor/nurse/health facilitator will do the check-up You can talk about things that may be bothering you. Then you will write your Health Action Plan together. You will get a copy of your Health Action Plan and your doctor/nurse/health facilitator will keep a copy. We hope to hear from you very soon. Yours sincerely, Name All pictures in this letter are from the Change Picture Bank.

IX. ST. GEORGE'S HEALTH CHECK QUESTIONNAIRE

X. ST. GEORGE'S HEALTH CHECK EXAMINATION NOTES

EXAMINATION STUDY

PEOPLE CHECKLIST

ACTION TAKEN

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