My project is about specialized services for people with a learning disability. Now are these specialized general health services (including mental health) or just specialized mental health services? And what makes health services for people with a learning disability special?
Let's look at general medicine first. People with learning disabilities may have problems with communication, social ability, understanding, remembering, generalizing knowledge to new situations and self-awareness. Depending on the severity communication using spoken language might not be possible and problems with reading require special written material supplemented by pictures ("easy read") or may rule out their use completely. I wrote before that mental health often the only source of information for clinicians are the patient's stories. While general medical problems might exhibit a pathology, this can be ambigious. Thus clincians still rely on additional information from the patient's documented history and their descriptions of the complaint to arrive at a final diagnosis. The deficits a learning disability can cause will at the least make a normal consultation much more difficult or even completely impossible. But what is a special service? Clincians who are trained to acknowledge and know how to compensate for the difficulties of people with a learning disability? Or somebody, possibly with a medical background, who knows with the patient well and comes along to an appointment to assist the clincian? The second approach would also target the issue that many people with a learning disability see their doctor far less regularly than the average patient. This might be due to the fact that scheduling an appointment and arranging transport are higher hurdles for people with intellectual impairments. Another explanation might also be that they take longer to realize it when they have a medical problem. Matters are further complicated by the large spectrum covered by what constitutes a learning disability. People whose diagnose is a mild impairment of intellectual function may be able to lead a normal life and if at all only require assistance in exceptional circumstances while people with a severe learning disability are likely to need consistent support. So while for the one end of the spectrum a regular GP, perhaps after having received some awareness training, can provide for their health care needs, severly impaired people will need specially trained staff. But what happens in-between? A recently introduced approach are facilitators - staff which special training who are e.g. placed in hospital wards to help clincians deal with the particular demands of a person with a learning disability.
A second issue are comorbidities. Having a learning disability increases e.g. the chances of having problems with hearing and many people with a severe learning disability also have physical disabilities. Another common problem for people with learning disability is poor motorical control which can cause problems with swallowing - a major cause of death. These comorbidities are further complicating access to mainstream health care. They call for an integrated approach, which is difficult to realize in services designed for people with average cognitive abilities and usually isolated problems. However the solution might be that specialist services provide a supplementary role, linking and facilitating mainstream services after an initial in-depth comprehensive assessment. Common problems which are an exception to mainstream health care providers, such as swallowing, might indeed call for a special service in order to provide best-value care.
A third issue are social care needs. Social deprivation can lead to an increased prevalence of learning disability and a learning disability usually leads to an increased need for social care services. Finding work is difficult or impossible, suitable accommodation is scarce and hard to find and professional carers may be needed. Good health is a prerequisite to e.g. finding work and if behavioural problems are not controlled carers may find it impossible to do their job. A suitable accommodation may need the input from an occupational therapist and they knowledge of a social worker to obtain funding.
Many of the above issues are also present when it comes to mental health problems, which are not uncommon among people with a learning disability. Stigmatization is probably less of a problem. However issues around communication are magnified and with intellectual impairment and possible comorbidities it becomes even more difficult to decide if someone is"cured".
So what are specialist services for people with learning disabilities? A focus on only mental health is too narrow. Discussions around human rights and the dignity of people with a learning disability are reflected in the idea to as far as possible rely on mainstream services and bring in specialist services only when neccessary and if possible as a supplement.
So our vision for a learning disability service is "to provide an integrated, wholistic service including, where neccessary, specialist general and mental health care."
One important theme will be "signposting", to both mainstream health and social care.