While setting up a learning disability register will score a modest four points, this new quality framework domain from 1 April will help practices to identify patients with other problems, such as hypertension, epilepsy, obesity and diabetes.
The British Paediatric Association's 1994 definition is useful:
'A person with a learning disability/difficulty (often used interchangeably) is one who because of a developmental, intellectual handicap requires extra help to experience an ordinary life, maintain good health and... maximise skills and minimise deficits.'
Widening the focus
Often the focus of care is directed more to their social needs despite a higher than average incidence of ill health compared to the general public. A register will help to identify opportunities to improve the healthcare of this group. The Valuing People website www.valuingpeople.gov.uk is a good starting point.
Agree on how to code
There is much debate about appropriate terms to identify people with learning disabilities. Codes for learning difficulties are often used for children with a temporary difficulty during school years or a single problem such as dyslexia. Consider creating your own practice code if necessary.
Run multiple searches
Many terms are used to describe learning disability, so you need to create a list of searches to run - and will probably need to add terms along the way such as mental handicap, retardation, low IQ and behavioural problems.
People have often been coded under syndromes or complaints such as Down's syndrome or epilepsy. You still need to add a learning disability code to create a register. Re-run the searches every six months.
Some learning disabilities patients will not have been identified so will not be revealed by searches. Often they are very vulnerable adults with no support system. GP and nurse colleagues can help identify and code them.
Many children have not been formally assessed for learning disability in early life and are often identified under their health problems or syndromes.
Size of learning disability group
On average, about 40 people in a practice population of 2,000 will have learning disabilities, but only eight of these will be known to the specialist services. The group will include adults not formally assessed in childhood.
We often associate learning disability with a problem from birth but should also consider patients with a developmental problem who attend or have attended special schools. The spectrum is very broad, from the mildly disabled who can manage independently with support, to the profoundly disabled, requiring 24-hour care. The local learning disability team can help to carry out formal assessments.
Managing the register
You will identify a group who often have problems linking with other quality framework targets. Many in this group do not attend and are not offered routine healthcare. Inviting non-attenders for a simple health check can identify learning difficulties.
The practice can develop its own health check and the register will stand you in good stead if the domain is expanded. Make one member of the team responsible for the register and for keeping it up to date. An interest in helping vulnerable groups is important, although specialist knowledge is not required. It is more important to have understanding and time for these patients who have communication problems.
The team member can liaise with the learning disability team on a regular basis.
- Donna Wells is a nurse practitioner in Margate, Kent, and has a special interest in learning disability in the community
BENEFITS OF LEARNING DISABILITY REGISTER
Creating a learning disability register at my Margate practice has led to several developments:
- Learning disability computer template - This aids carrying out a health check and has links to commonly required targets such as BP, epilepsy and cervical cytology and routine checks on alcohol, weight, urine and smoking.
- Identifying commonly missed problems - The template includes additional checks for ENT, skin, mobility, incontinence and eye problems and has a link to the carers' register. Prompts suggest considering blood tests and optician assessment and checking if the patient undergoes routine dental treatment.
- Protocol for learning disability - This is on the practice intranet and has information about the local learning disability team and local user-friendly services, including opticians and dentists, for patients with communication problems.
- Educating practice staff - The local learning disability team can help if no team member is confident to train staff on learning disability issues.
The aim of our training is to make staff aware of how broad and individualised a health check is and understand issues of consent.