Many guidelines relate to the treatment of specific conditions and are based on evidence from randomised controlled trials. In primary care, however, our areas of endeavour frequently relate to topics that cannot easily be assessed by these methods, but are equally important and should not be overlooked.
An example of guidelines based on this type of evidence,which was sent to every practice earlier this year, is 'Once A Day' A Primary Care Handbook for People with Learning Disabilities.1 This is a health service circular, and well worth a read.
Ehere is good evidence for the existence of shortcomings in the care and understanding that disabled people and their carers receive from primary care.2 Many of us can probably identify only a handful of our patients with learning disabilities, although statistically 2% of our practice population have a learning disability, and one or more of these will be in touch with our primary healthcare team (PHCT) each day.
Society is moving towards giving more rights to the disabled, with the advent of the Disability Discrimination Act, and the Government 'mainstreaming' disability, i.e. considering the disability perspective in relation to all other activities.
It is very timely, then, for primary care to take a fresh look at its approach to patients with a disability in this instance, learning disability. I suggest that this topic merits a PHCT meeting to discuss its implications after all the members have read the circular. 'Once A Day' is very well conceived and simply laid out, with recommendations for action by the PHCT and examples of good practice under a series of headings.
Alongside the text are pertinent quotations from people with learning disabilities and their carers. It is suggested that it would be wise for a member of the PHCT to adopt a lead role in learning disability, taking a special interest, collecting and collating information,and advising other team members.
We are also encouraged to develop better links with the local community team for people with learning disability, with social services and with other organisations, and to liaise over our care of these patients. Involvement of service users and carers is also helpful.
Many aspects of the recommendations relate to awareness: awareness of the existence on our practice list of people with learning disability, of their special needs and those of the people around them, of the medical problems that may accompany learning disability, and of our colleagues' reactions to our patients with learning disability.
Another aspect that is brought out is the right of each person with a learning disability to health care and advice. The aim is inclusivity and equity of care.
Another booklet, The Healthy Way,3 issued by the DoH and written by people with a learning disability, is a very good way of teaching patients with a learning disability to look after their health, as well as being very instructive to us, and is well worth obtaining. We are reminded to speak to patients and avoid talking over them.
One suggestion is the use of patient-held records. If this is adopted, it would be wise to annotate the record with diagrams and for one of the team or a carer to go through the record with the patient, explaining the diagrams and their implications. The same principles apply to consent for procedures, which is also discussed in the circular.
Following the advice in these guidelines can improve the quality of life for many disabled people, and is well worth the effort.
- HSC 1999/103, DoH, April 1999; also available on the internet at http://tap.ccta.gov.uk/doh/coin4.nsf/
- Baker, M, Fardell J, Jones RHV (1997) The Case for Action Full Report. DARE Foundation, London.
- The Healthy Way, DoH, March 1998. Available from: DoH, PO Box 410, Wetherby, LS23 7LN.