The road to Fluster Gap

In her first blogpost as the new NHS England Director of Transformation – Learning Disabilities (see https://www.england.nhs.uk/learningdisabilities/2016/04/19/julie-higgins-2/ ), Dr Julie Higgins reported that the number of people in specialist learning disability inpatient units has started to fall, apparently from 2,795 people in March 2015 to 2,615 people in March 2016 (a reduction of 6.4%).

Obviously, this is an abiding preoccupation of the Transforming Care programme, and a question which I’ve returned to in this blog roughly every 6 months to check in on what’s happening. Is the tide really beginning to turn? Trying to answer this simple question is surprisingly difficult, for the reasons I outlined here 6 months ago (http://chrishatton.blogspot.co.uk/2015/11/impatient-inpatient.html ).

Basically, the Health and Social Care Information Centre (HSCIC) collect information at the end of every month from commissioners of these services (at the last count there were 219 possible commissioners of inpatient services in England – see http://www.hscic.gov.uk/article/6328/Reports-from-Assuring-Transformation-Collection ). Commissioners report how many people are in inpatient services at the end of the relevant month (and a whole host of other information about them too). However commissioners might not know about everyone at the time, so in later months’ returns they can add in information on people they didn’t know about at the time of their original report. So the number of people commissioners report can go up retrospectively (as they find out about more people admitted to inpatient services that they didn’t know about), and the number can theoretically also go down (if they find out that people have been discharged that they assumed at the time were still in an inpatient service).

As if this didn’t induce enough wobbliness in the reporting, all commissioners don’t reliably report their numbers every month. In April 2015 only 167 commissioners submitted information; by April 2016 this was 193. This might mean that the overall number of people reported to be in inpatient services goes up over time, as more commissioners provide information. It also means that as new commissioners report information for the first time (or after a gap of a few months), great wodges of retrospective information can bump up the numbers of people in inpatient services in previous months as well as in the month when they start reporting.

Given all this retrospective reporting, what (if anything) can we conclude about what’s happening to the number of people with learning disabilities in specialist inpatient units? To get some idea of this, we need to get a handle on the number of people being added by commissioners retrospectively. Without knowing this, comparing information from March 2015 (with 12 months’ worth of added retrospective information) to information from March 2016 (which just has information reported for that month without any retrospective additions) might not be very meaningful.

The graph below tries to show the retrospective extras being added on by commissioners after the first month of reporting, in three month blocks. So, the deep purple (no, I’m not going there) bars show the initial reporting of information at the end of April 2015 through to April 2016, in three-month blocks. For April 2015, it then shows how many extra people were added retrospectively 3 months later, 6 months later, 9 months later, then 12 months later. For July 2015, there is information up to 9 months later, and so on up to April 2016 where we just have the initial reporting.

[I’m hoping that this makes some sort of sense so far?]

What does this graph show?

Well, first, looking at the deepest purple bars, it looks like the initial reporting of the number of people with learning disabilities increased from April 2015 (2,445 people) to October 2015 (2,620 people), probably as the number of commissioners reporting information increased. After that (when the number of commissioners remains consistently fairly high) the number of people initially reported by commissioners drops very slightly from October 2015 (2,620 people) to April 2016 (2,565 people).

If we’ve got a stable, high number of commissioners reporting, does this mean that the initial reporting of numbers of people will more closely reflect the total number of people in inpatient services? Does this mean we can start to claim a (very gradual) drop in the number of inpatient service places for people with learning disabilities? Looking at the retrospective data, I think the answer is ‘not yet’.

In the information for April 2015, a total of 320 people have been added retrospectively, 130 in the first three months after initial reporting (and the numbers for April 2015 are not completely stable even a year on). In January 2016 (when the number of commissioners reporting was already high), 115 people were still being added by commissioners in the first three months after initial reporting, with presumably more to be added in the future.  

I think this means we can’t take the 2,565 people initially reported in April 2016 as a final figure. Based on previous numbers being reported retrospectively, even with a nearly full complement of commissioners, I think we can expect well over 100 people to be added to this total. This would put the April 2016 total (something like 2,700 people) well within 100 people of the April 2015 total of 2,765 people. 

Compared to the stated aims of Transforming Care, it feels (to steal a phrase) that we’re still waiting for the great leap forwards (https://www.youtube.com/watch?v=kjLXyqD3lvI ).

PS: The sign in the photo is on a road up and out of Heversham, a village near me, which does indeed have a house called Fluster Gap at the top of the hill.

Some statistics on children in learning disability inpatient services

The 2015 Learning Disability Census

From the Learning Disability Census 2015 (weblink here http://www.hscic.gov.uk/article/2021/Website-Search?productid=20487&q=learning+disability+census+2015&sort=Relevance&size=10&page=1&area=both#top ). This is run by the Health and Social Care Information Centre.

As of 30^th September 2015, in total there were exactly 3,000 people in specialist learning disability inpatient services.

Total number of children aged under 18 in learning disability inpatient services:

·        2015:     165 children

           2014:     160 children
2013:     160 children

Main treatment reason for needing inpatient care:

·        Need inpatient care:                     130 children (75 mental illness; 55 behavioural treatment)

·        Does not need inpatient care:      15 children (for 5 a community placement was being sought)

·        Other:                                           20 children

Treatment plan:

·        Not  dischargeable:                         35 children

·        Active treatment plan:                    60 children

·        Working towards discharge:           55 children

·        Delayed transfer of care:                10 children

Behavioural risks (multiple risks are possible):

·        Violence/threats to others:                          105 children

·        Sexual behaviour – risk to others:               30 children

·        Sexual behaviour – risk to self:                    35 children

·        Fire setting:                                                    5 children

·        Injury to self:                                                95 children

·        Property damage:                                          85 children

DoLS not in place:            160 children

Advocacy used (multiple advocates are possible): Yes – 110 children

·        Family:                                60 children

·        Independent person:            90 children

·        IMCA:                                 20 children

·        IMHA:                                 45 children

·        Non-instructed:                   20 children

Are patient’s family involved:       Yes – 145 children

Length of stay (to date – in current unit)

·        Less than 3 months:          65 children

·        3-6 months:                       30 children

·        6 months-1 year:               35 children

·        1-2 years:                           25 children

·        2-5 years:                           10 children

Distance of unit from home post code:

·        Less than 10km: 20 children

·        10-20km:                            10 children

·        20-50km:                            25 children

·        50-100km:                          30 children

·        More than 100km:              60 children

Incidents experienced in 3 months before census:

·        Adverse experiences only (accident, physical assault, self-harm):                    55 children

·        Restrictive measures only (seclusion, physical restraint):                                  25 children

·        Both adverse experiences and restrictive measures:                                          70 children

·        No incidents:                                                                                                       55 children

Antipsychotic medication in 28 days before census:

·        None:                                                 60 children

·        Regularly prescribed:                        85 children

·        Regularly prescribed and PRN:        20 children

Rapid tranquilising medication in 28 days before census:  

·        Yes:        45 children

·        No:        120 children

  

Assuring Transformation data

This is also collected by/creditable to the HSCIC (see weblink here http://www.hscic.gov.uk/article/2021/Website-Search?productid=20879&q=assuring+transformation+report+quarter+4&sort=Relevance&size=10&page=1&area=both#top ). The latest available information is collated for the quarter January - March 2016. Nearly all commissioners provide information now, which is an improvement, but a lot of them provide information late, so the current total number of people recorded in this dataset (2,615 people) will increase as people are ‘found’ by commissioners later on.

Total number of children with learning disabilities under 18 in specialist inpatient services: 170

·        Secure forensic:                                      60 children

·        Acute learning disability:                       40 children

·        Acute generic mental illness:                 40 children

·        Other specialist:                                      10 children

·        Other:                                                      20 children

Legal status:

·        Informal:             60 children

·        MHA Part II:     100 children

Time to planned transfer from the inpatient service:

·        0-3 months:                             20 children

·        Transfer overdue:                     5 children

·        No planned transfer date:      140 children

Length of stay (to date) in current unit:

·        Up to 1 year:              125 children

·        1-5 years:                    45 children

Total length of continuous stay in specialist inpatient services:

·        Up to 1 year:              115 children

·        1-5 years:                    55 children