Now you see me, now you don't - independent sector services and Transforming Care statistics

I’ve gone on about this subject so much in this blog that I’m sure you’re as heartily sick of it as I am, but once again I’ve been worrying away at statistics about people with learning disabilities and/or autistic people in inpatient services. To try and recap, pithily…

• Exhibit A. The Assuring Transformation dataset is produced and reported monthly by NHS Digital for the NHS England Transforming Care programme, based on health service commissioners’ reports on the number of people in specialist inpatient services for people with learning disabilities and/or autistic people.
• Exhibit B. The newer Mental Health Services Dataset (MHSDS) is also produced and reported monthly by NHS Digital, based on mental health service providers’ reports on the number of people flagged as learning disabled and/or autistic in any inpatient mental health service.
• There is some overlap between the two datasets but also some big differences, with Assuring Transformation recording fewer people overall, and a less transient group of people generally spending long periods of time in specialist learning disability inpatient services, about half of which are in the independent sector. The MHSDS records more people overall, including a more transient group of people spending short periods of time in mainstream NHS mental health inpatient wards (probably).

I think this matters, not just because of my itchy-under-the-skin desire for consistency, but in the real world. NHS England reports its progress on Transforming Care to the world in terms of Assuring Transformation statistics, yet these statistics (like the Transforming Care programme itself) are due to stop at the end of March 2019. After that, we will be left with the MHSDS – what will the picture be then?

Handily, the ever-excellent @NHSDigital have for some time been reported direct cross-tabulations between the Assuring Transformation and MHSDS datasets, stripping out people in inpatient services for ‘respite’ (I know – don’t get me started or this post will be even longer) to reduce this source of inconsistency. I’ve blogged on the general picture before – here I want to focus on the details according to specific independent sector inpatient organisations. What stories do the two datasets tell us about independent sector inpatient services over a one-year time period, comparing October 2016 to October 2017?

The first thing is that there are a lot of them – 47 organisations (which may include more than one inpatient unit) listed in October 2016. The number of organisations listed increased to 58 organisations in October 2017.

The second thing is that most of them are small (listing places for 10 or fewer people in either dataset) – 31 out of the 47 organisations in October 2016 fitted into this very small category. All these 31 organisations were still listed in October 2017, with the addition of 10 more organisations with small numbers of people listed (this list now includes two local authorities; Nottingham City and Wiltshire). A list of these organisations’ names is at the bottom of the post.

This leaves 16 organisations in October 2016 (with an extra one in October 2017) listing more than 10 people on either dataset. This is where I start to get seriously confused, so I’m afraid I’m going to share this confusion with you rather than make sense of things.

The table below shows the next eight organisations up in terms of number of people listed in their inpatient services (less than 50 people). Most of these organisations are listed by commissioners in the Assuring Transformation dataset as specialist inpatient services for people with learning disabilities and/or autistic people, but they are not listing themselves as hosting (I don’t know what the right word is) these people as people with learning disabilities and/or autistic people in inpatient mental health services. What happens when Assuring Transformation data collection stops in March 2019 – will all these people become invisible again and will commissioners (and the organisations themselves) feel no further pressure to reduce their numbers?

One organisation in this group (the Jeesal Akman Care Corporation) has added people in their services to the MHSDS dataset between October 2016 and October 2017 so they will appear beyond the end of the Transforming Programme (although confusingly they record more people in the MHSDS than commissioners record in Assuring Transformation). Even more confusingly, one organisation in this group (Livewell Southwest) has gone for the opposite strategy, with them recording increasing numbers of people as people with learning disabilities and/or autistic people in their inpatient mental health services even though commissioners aren’t counting them as such in the Assuring Transformation dataset. Does this mean that these people are invisible right now to the strictures of Transforming Care?

Name of organisation	Number of people in the service at the end of October 2016 according to…		Number of people in the service at the end of October 2017 according to…
	Assuring Transformation	MHSDS	Assuring Transformation	MHSDS
Equilibrium Healthcare	15	*	5	5
Curocare Ltd	20	*	5	*
Ludlow Street Healthcare	15	*	15	*
St George Healthcare Group	20	*	15	*
Livewell Southwest	*	5	*	25
Cheswold Park Hospital	20	*	20	*
Jeesal Akman Care Corporation	40	*	35	40
Brookdale Healthcare Ltd	35	*	35	*

This leaves the eight organisations in 2016 (nine organisations in 2017) with by far the largest numbers of people, according to either or both datasets. These organisations (some of which seem to be ultimately owned by an even smaller number of companies, and have been embroiled in a number of more or less obscure acquisitions) completely dominate – between them they are reported to host around 90% of all people with learning disabilities and/or autistic people in independent sector inpatient services. The number of people in these organisations overall doesn’t seem to have changed much from October 2016 to October 2017.

Some of these organisations (Priory Group, Lighthouse Healthcare, Danshell Group) are only recorded as hosting people in specialist inpatient services for people with learning disabilities and/or autistic people in the Assuring Transformation dataset (with some big changes over time possibly reflecting acquisitions/sell-offs of particular units?). Why aren’t these organisations (which commissioners clearly consider to be specialist units) registering these services as mental health inpatient services for the purposes of the MHSDS, and what do they consider them to be instead? When the Assuring Transformation data stops being collected in March 2019, will these 245 people become statistically invisible?

The new organisation in 2017 (Elysium Healthcare, partly formed through acquisitions from Partnerships in Care and the Priory Group) has gone for the opposite approach, recording themselves as the providers of inpatient mental health services for 125 people with learning disabilities and/or autistic people in the MHSDS with none of these people recorded by commissioners as in inpatient services according to Transforming Care. Are these all people with learning disabilities and/or autistic people in various forms of mainstream mental health inpatient service run by Elysium, even though they have a Learning Disabilities & Autism division?

Four other organisations record people in both datasets in 2017, although the number of people can vary greatly across Assuring Transformation and the MHSDS. For example, in October 2017 Cygnet were recorded as hosting 75 people in the Assuring Transformation dataset but 110 people in the MHSDS, and St Andrews were recorded as having 200 people in the Assuring Transformation dataset but 305 people in the MHSDS. Cambian Healthcare’s figure go in completely the opposite direction, recording 150 people in Assuring Transformation, 120 people more than the 30 people recorded in the MHSDS.

The illustration of how much these figures are a moveable feast is most starkly shown by the statistics for the final organisation in this table, Partnerships in Care. In October 2016, they recorded 280 people in Assuring Transformation and 390 people in the MHSDS. By October 2017, they still recorded 270 people in Assuring Transformation, but any people in the MHSDS had gone.

Name of organisation	Number of people in the service at the end of October 2016 according to…		Number of people in the service at the end of October 2017 according to…
	Assuring Transformation	MHSDS	Assuring Transformation	MHSDS
Priory Group Ltd	50	*	95	*
Lighthouse Healthcare	70	*	55	*
Cygnet Healthcare	75	115	75	110
Huntercombe Group	80	80	95	100
Danshell Group	95	*	95	*
Elysium Healthcare Ltd	n/a	n/a	*	125
Cambian Healthcare Ltd	135	30	150	30
St Andrews Healthcare	205	305	200	305
Partnerships in Care Ltd	280	390	270	*

Looking at this makes me feel distinctly wobbly. It seems clear to me that who gets included in the statistics is to a certain extent the end result of tactical decisions being made by commissioners and independent sector services, and that the services in particular can make decisions that change things quite drastically. If the MHSDS is to become the only source of information on the number of people with learning disabilities and/or autistic people in independent sector inpatient services after March 2019, then this needs to be sorted out urgently.

As it stands, the number of people with learning disabilities and/or autistic people in independent sector inpatient units (dominated by a very small number of organisations) is larger than either the Assuring Transformation or MHSDS datasets describe singly. In October 2017, I estimate this would be at least 1,365 people (looking across both datasets), rather than the 1,185 people reported in Assuring Transformation and the much lower 745 people reported in the MHSDS.

My worry is that over time more and more people in inpatient services (or services that might feel like inpatient services, like re-registered or newly built ‘care homes’ on the sites of existing hospitals) will become invisible in any national statistics. Will these people then be quietly forgotten about in ‘business as usual’ - until the next scandal?

Organisations listing fewer than 5 people in inpatient services (listed by commissioners or the provider):

• October 2016: Partnerships in Care (Hull); St Magnus Hospital; Turning Point (Manchester); The Woodhouse Independent Hospital; Vista Healthcare Independent Hospital; The Lane Project; Alternative Futures Group; Vision Mental Healthcare; Eden Supported Living Ltd; The Atarrah Project Ltd; Coed Du Hall; Choice Lifestyles; Castlebeck Care Teesdale; St Matthews Healthcare; Community Links (Northern) Ltd; Vocare; Making Space; City Healthcare Partnership CIC; Cambian Ansel Clinic Nottingham; Navigo; Virgin Care Ltd; Woodside Hospital; Alpha Hospitals; Modus Care; Breightmet Centre for Autism; Mental Health Care (UK) Ltd; InMind Healthcare; Glen Care; Turning Point; Raphael Healthcare Ltd; Care UK; .
• October 2017: All the above, plus: Shrewsbury Court Independent Hospital; Young Persons Advisory Service; Northorpe Hall Child & Family Trust; Newbridge Care Systems Ltd; Cambian Childcare Ltd; Youth Enquiry Service (Plymouth) Ltd; John Munroe Hospital; Here; Nottingham City Council; Wiltshire Council.