General management and advice to patient and family

• Reward effort. Allow disabled children and adults to function at the highest level of their ability in school, work and within the family.
• Teach the same set of social rules as to other children.
• Advise families that learning and practising skills will be helpful, but that ‘miracle cures’ do not exist. It is usually impossible to predict, at diagnosis, how a child with learning disability will function as an adult. However, with careful long-term follow-up, it does become clearer what an individual may attain, in terms of independence and need for support.
• Families may feel conflicting emotions - intense love, disappointment, anger, great loss - and may take time and continuing support to adjust to being the parent of a child with learning disability and to deal with the different life stages and transitions (eg leaving school, employment, social life and sexuality, death of parents). It may be helpful to talk things through with someone who has the same experiences (see Resources for patients and families).  Preparing a transition plan that involves the young person, their family and relevant services is good practice for when they leave school, whether or not the child has a statement of special educational need.
• Inform families that people with learning disability frequently under-report illness. Arranging regular health screening can be useful actively to seek out treatable sensory disorders, depression, obesity, skin infections, diabetes and other conditions. It is valuable to review health care at times of transition (eg school leaving) and of family illness. Creating a health action plan is one recommended way to be proactive in maintaining health (ref 264).
• Primary care teams should make a regular slot (eg every six months) to review patients with learning disability, and keep a recall register. There is evidence that these patients have health needs that are only detected by this kind of proactive contact.
• Encourage the patient to see the same doctor and nurse at every planned appointment, if possible, in order to build trust and reduce problems in communication.
• Invite a carer to come too; carers who know the patient well are invaluable as informants.
• Allow extra time for the appointment so that communication and examination can occur at a pace that suits both staff and patient.
• Use additional user-friendly literature to prepare the patient for examinations such as well-woman checks (see Resources for patients and families).
  

References

264 Action for Health, DoH publication about Health Action Plans, available from the Department of Health, PO Box 777, London SE1 6XH, UK.

Last edited: 20/1/2004

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