Adverse experiences

To accompany #7daysofaction (see this superb post from @KaraChrome that pulls together the strands of the 7 stories shared during the week https://theatuscandal.wordpress.com/2016/04/25/just-want-to-go-home/ ), this week I’ve been writing a series of short blogposts looking at some of the statistics we have about inpatient services for people with learning disabilities in England. This is the last post in this series. It has a few more graphs than usual, to try and build a picture from national statistics of a few aspects of what happens to people once they are in an inpatient service. National statistics are the last place to really understand what people experience (the stories in #7daysofaction do that), but there are a few indicators of ‘adverse experiences’ and more recently medication prescription in the Learning Disability Census and, before that, the Count Me In Census (see here http://www.hscic.gov.uk/searchcatalogue?productid=19718&q=learning+disability+census+2013&sort=Most+recent&size=100&page=1#top , here http://www.hscic.gov.uk/searchcatalogue?productid=20487&q=learning+disability+census+2013&sort=Most+recent&size=100&page=1#top and here https://www.improvinghealthandlives.org.uk/publications/1161/A&T_and_other_specialist_inpatient_care_for_people_with_LD_in_the_Count-Me-In_census ).

What can we learn from these indicators about what happens to people in learning disability inpatient services? The first graph below shows what percentage of people in inpatient services experienced at least one instance of an accident, a physical assault, or self-harm, in the three months leading up to the census date. There is information for 2013, 2014 and 2015 in the Learning Disability Census. There is also combined information from the 2007, 2009 and 2010 Count Me In Censuses, just for those learning disability inpatient units that called themselves Assessment and Treatment Units (so not including people in general long-stay hospitals).

In the 2007/08/09 Censuses, over a fifth (22%) of people had experienced an accident in the previous three months – by 2015 this had slowly reduced to 18% of people. That’s 530 people in 2015 who had experienced an accident in the three months before the census – and there were 10 people who had experienced more than 10 accidents in this period.

Over a third of people (35%) in 2007/08/09 had been on the receiving end of at least one physical assault in the last three months. From 2013 to 2015, this was hovering at a consistent 22%/23% of people. That’s 665 people in 2015 who had been physically assaulted in the three months before the census. 45 people had been assaulted more than 10 times in this period and within these 45 people, 20 people had been physically assaulted more than 20 times in the last three months.

Finally, over a quarter of people (27%) in 2007/08/09 experienced at least one episode of self-harm. This gradually dropped to 24% of people in 2015. That’s 735 people who had experienced self-harm in the three months before the census. 110 people had experienced self-harm on more than 10 occasions in the last three months and within these 110 people, 45 people had experienced self-harm on more than 20 occasions in the last three months.

Overall, getting on for half of all people in inpatient units in September 2015 (1,375 people, 46%) had experienced at least one these ‘adverse experiences’ in the three months leading up to the census.

The second graph below shows how many people experienced the ‘restrictive practices’ of seclusion and restraint in the three months leading up to the census.

In the 2007/08/09 censuses, 7% of people in Assessment and Treatment Units had experienced seclusion in the last three months – this has been steadily rising since, up to 13% of people in 2015. That’s 380 people experiencing being put in seclusion at least once in the last three months, with 40 people being subject to this more than 10 times and, within these 40 people, 15 people being subject to seclusion more than 20 times in three months.

In the 2007/08/09 censuses, restraint was very common (41% of people had been subject to hands-on restraint in the last three months). While it has reduced, over a third of people in inpatient units in 2015 (34%) still experienced at least one episode of hands-on restraint in the last three months. That’s 1,030 people being subject to hands-on restraint at least once in three months. 220 people had been subject to restraint more than 10 times in the last three months, and within these 220 people 115 people had been subject to hands-on restraint more than 20 times in three months.

Overall, 1,070 people (36%) in inpatient units in 2015 had experienced seclusion or restraint (or both) in the last three months.

The final graph I want to share today is about another form of service ‘response’, medication. From 2013, the Learning Disability Census has been collecting information on how many people got antipsychotic medication in the 28 days leading up to the census. And from 2014, the Census has been collecting information on people getting rapid tranquilisation over the same time period.

Over all three years of the census, consistently, almost three-quarters of people in inpatient units had been ‘given’ (I’m struggling to find the right words here) antipsychotic medication in the last 28 days. In 2015, that was 2,155 people (72%), with almost all of them (2,025 people) getting antipsychotics on a regular basis.

The Learning Disability Census also records service providers’ reasons for administering antipsychotics to people. In 2015, apparently 1,420 people were being prescribed antipsychotics ‘for the treatment of a formally diagnosed mental illness’. Odd, because elsewhere in the census they report that just 440 people have at least one mental health diagnosis ‘severe enough to require treatment’ (and within this 400 people, 195 people have a diagnosis of psychosis ‘severe enough to require treatment’).

A further 645 people were being prescribed antipsychotics ‘for the management of challenging behaviour’. In 2015, 805 people were reported to have at least one ‘behavioural risk severe enough to require treatment’, but as these risks span violence, sexual risk, sexual risk to self, fire risk, self-injury risk, and property risk, it’s unclear to me why antipsychotic medication is such a widespread ‘treatment’ response within highly expert services.

Finally, from 2014 the Learning Disability Census has reported how many people have been subject to rapid tranquilisation medication in the last 28 days. In 2015, 11% of people in inpatient units (320 people) had been subject to this at least once.

By virtue of the method used, these indicators can’t tell us about the experiences of people with learning disabilities within inpatient services. But even from these sparse figures, what must these places be like to live in? (even if people are in a unit for months rather than years, they are still living there) You’re more likely than not to be on antipsychotic medication, and if you’re lucky enough to avoid seclusion or hands-on restraint, physical assault, self-harm or accidents, you’re still seeing this happening to the people around you on a presumably very regular basis. How therapeutic can such places be?

A quick final thought on the series of blogposts I've done this week for #7daysofaction. They have focused on trying to understand some of trends happening in inpatient services for people with learning disabilities, and (to the very limited extent possible) documenting the consequences of these services for people with learning disabilities and their families. 

As shown on the cover of the Mansell report (almost ten years ago now, and an official Department of Health document) inpatient services for people with learning disabilities are themselves a symptom, a symptom of a failure to develop local services that really support people and families to live fulfilling lives where they want, and with whom they want. While tackling the symptom, let's also address the cause.