Tuesday, 15 August 2017

Still the unoffered chair? IAPT services and people with learning disabilities

Over 20 years ago, Mike Bender in a short article called "The unoffered chair: the history of therapeutic disdain towards people with a learning difficulty" documented the almost complete lack of attention paid by professionals towards developing and offering psychological therapies (broadly defined) that would be useful for people with learning disabilities. Then, the idea that people with learning disabilities could experience the same kinds of distress as everyone else, and that alternatives to heavy-duty drugs and restraint were both possible and necessary, seemed radical (and now???).

Since then, there has been more work around psychological therapies with people with learning disabilities experiencing various forms of distress, although as recent NICE guidelines reported there is a real inequality in the evidence available concerning how good a range of psychological therapies are for people with learning disabilities. 

There has also been a move towards trying to 'mainstream' support for people with learning disabilities, including support for people with learning disabilities in distress. For people with depression or anxiety, and increasingly other forms of distress as well, the main game in town in England is Improving Access to Psychological Therapies (IAPT). IAPT services have been established across England, and are designed to provide quick access to a (fairly narrow) range of psychological therapies for people in distress who don't need more intensive mental health service support. It is a huge enterprise, with approaching 1.5 million people referred to IAPT services every year. What IAPT services offer is pretty rigidly specified (the original rationale for IAPT was economic, in that in theory it would cost-effectively return people to work more swiftly) and a lot of standardised information is collected nationally.

Given that IAPT is supposed to be available to everyone, including people with learning disabilities (those pesky reasonable adjustments), how accessible are IAPT services to people with learning disabilities and do they help people with their distress? Historically, the picture has been very patchy, with the Foundation for People with Learning Disabilities working with IAPT nationally to try and help them improve their game.

NHS Digital produces a comprehensive range of monthly statistics about IAPT services, which they also summarise into quarterly chunks summarising three months' worth of information. I thought I'd take a quick look at the most recent quarterly information (for January to March 2017) and see if it could tell us anything about the accessibility and effectiveness of IAPT services for people with learning disabilities. 

The statistics can be broken down according to 'disability', which includes a category of 'Memory or ability to concentrate, learn or understand (Learning Disability)'. From January to March 2017 4,571 referrals (not necessarily referred people, as a person could have been referred more than once in the time period) were recorded under this Learning Disability category, which was 1.2% of the total number of people (374,553 people) referred to IAPT services during this time. Research suggests that overall around 2% to 2.5% of people are people with learning disabilities, so the 1.2% referral rate is around half the figure you might expect if people with learning disabilities were being referred to IAPT services at the same rate as everyone else. However, the rate of people recorded as having learning disabilities being referred to IAPT is much higher than the rates of adults with learning disabilities known to social services or registered with GPs (around 0.4% of the adult population). 

These statistics are reliant on IAPT services' recording of learning disability; some IAPT services may not be very good at asking relevant questions, and/or some people who acquired a learning disability label in education may not feel the need to re-acquire the label when accessing an IAPT service. So it is possible that there are more people with learning disabilities within IAPT services than the statistics are recording. In terms of accessibility, it's hard from these statistics to know if people with learning disabilities are getting equal access to IAPT services or not. However, it is clear that substantial numbers of people who IAPT record as having a learning disability are being referred to IAPT services, meaning that IAPT services need to ensure that working effectively with people with learning disabilities is part of their routine practice.

What happens to people with learning disabilities once they are referred to IAPT services? The graph below compares what happens to people with learning disabilities with what happens to everyone referred to IAPT, and generally shows marginally poorer journeys for people with learning disabilities. After being referred to IAPT, around two-thirds of people with learning disabilities (67.2%) actually start IAPT treatment, compared to almost three quarters of people generally (73.2%). The vast majority of people with learning disabilities (89.1%) and people in general (92.9%) start IAPT therapy within 6 weeks of being referred.  

Getting on for two fifths of people with learning disabilities (39.3%) and people generally (37.5%) who enter IAPT treatment only get as far as having one treatment session. Finally, nearly one fifth of people with learning disabilities (18.3%) and people generally (18.2%) who complete their course of IAPT therapy are reported to have 'reliably deteriorated' or not 'reliably changed' on the standard mental health/distress measured used by IAPT.

The second graph below compares people with learning disabilities and people generally on recovery rates achieved during IAPT therapy. Here there are bigger gaps between people with learning disabilities and people generally. Two fifths of people with learning disabilities (40%) had 'moved to recovery' on standard mental health/distress measures, compared to half of people generally (51%). Less than two fifths of people with learning disabilities (37.9%) had achieved a 'reliable recovery' compared to almost half of people generally (48.6%).

These statistics are only a snapshot of three months of referrals to IAPT, and my interpretation of them is likely to be pretty superficial. What do I make of them? 

First, it's good to see that people with learning disabilities are being identified (however imperfectly) within IAPT services, and that NHS Digital makes it possible for the public to investigate possible inequalities in IAPT services. 

Second, it's hard to know whether people with learning disabilities in distress experience inequities in getting referred to IAPT services (it's important to say here that people can refer themselves to IAPT without waiting for someone else to do so). However, in the course of a year substantial numbers of people with learning disabilities (maybe approaching 20,000 people a year?) are being referred to IAPT, so IAPT services across the country need to be routinely ready and not assume that people with learning disabilities are an ignorable niche.

Third, there are some signs that there are marginal inequalities experienced by people with learning disabilities at every step of IAPT services, ending up in quite substantial differences in recovery rates. IAPT services can clearly be doing more to make their services welcoming, accessible and effective for people with learning disabilities in distress. I find it encouraging, though, that approaching two fifths of people with learning disabilities in distress get some kind of demonstrable benefit from IAPT therapies, showing that some mainstream mental health services can adjust themselves to work well for many people with learning disabilities. More please.


  1. Our 21 yr old autistic son with severe learning difficulties, bipolar, catatonia and epilepsy was totally left behind with our Specialist Learning Disability Team after going through a significant and distressing breakdown when 17. I pleaded with them to give him psychotherapy but every time they just brushed this under the carpet. Underfunded/staff changes. He has been totally left behind, no one cared or wanted to help within the team. He suffered PTSD which was not addressed then developed bipolar at 19 due to all the trauma build up and confusion. He has been through hell and so have we as his parents. There needs to be a complete shake up in mental health services for people with LD.

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