Specialist services

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.

Mental health

What is special about mental health?

Probably that it does not show a clear pathology, like e.g. a broken leg. What's "broken" is inside a person's mind. If it's visible there is a question of current research. Researchers increasingly find biological causes for mental health but in the daily practice mental health clincians have to rely on what their patients tell them, pick up the clues from their behavior and base their diagnosis on that. Also the question if and when a patient is cured is harder to answer. There are no tests you can run, you cannot look if all the cancer cells haved died or if the leg is mended again. Again you will have to rely on personal judgement.
The third big difference is stigma. There is no stigma attached to having a cold or a broken leg, but there is a stigma attached to having a mental health problem. Immigration forms ask about a history of mental disorders in the same section they inquire about a possible Nazi past. There are estimates that one in four people will suffer from a mental health problem within a year. But how many do not seek treatment out of fear of stigmatization?

"And where are we?"

Induction for new staff to the mental health trust - at the beginning the obligatory "my name is ... and I do ..." exercise. Of about 30 people in the room, myself and the community nurse next to me are the only ones who will work in learning disability services. In the following many colorful slides with smiling people and all the successes of the trust in recent years. Spotlight on the services the trust provides. At the end the nurse turns around to me "And where are we? He did not even mention learning disability."

believes and behavior

I went to an interesting talk yesterday. The main point made by the speaker was that many problems with safety in health care may be in essence just miscommunication.

Each of us has had experiences. These shape our believes which in turn affect our behavior. Our behavior on the other hand is experienced by others and will thus affect their believes and behavior. This can now lead to virtous or vicious cycles.

Person A has made a thoughtless comment, which to me sounds like an insult. This leds me to the belief that A does not like me, so next time I meet him in the cafeteria I don't say hallo. Now A who has already forgotten about the comment is puzzled. He though I was a nice gal but now I ignore him and he has heard that I made some comments about him. So his conclusion will be that I don't like him and in the future not greet me either, which only reinforces my (originally unfounded) belief.

I think the problem is simply that we don't think much about the believes we hold. We simply take them for granted. We are not aware of how they influence our actions and that we tend to see the actions of others with our own "belief glasses". We think that everybody thinks like us. But what if they don't? And if they don't, how can I find out how they think?

doctors

Well first of all, my PhD is about how to design services for people with learning disability (or intellectual disability). So besides managers and social care staff I deal with clinicians. My boyfriend happens to be a med student and every time we talk about my work we end up arguing. I tell him about some interesting ideas I read and he usually dismisses them as not being applicable to medicine - for various reasons.

Today I stumbled across an article outlining that the education medical students receive makes them very good at "single loop" problem solving, where the cause the doctor initially identified is not scrutinized but instead the treatment is changed over an over again to find something that works. The better approach would be "double-loop" learning where the own assumptions and behaviour are challenged and analyzed. Apparently it's the system which rewards people who efficiently fix things which breeds such a prevalence of "single loop" problem solving.

So is that the problem? Are doctors just conditioned to be stubborn and not willing to question previously made judgements out of fear for their authority? What does this mean for my research? Or are not all doctors this way and I am just badly stereotyping?