Uh oh, this Ferrero Rocher thing is getting out of hand. The ambassador has spoiled us with a veritable pyramid of material relating to people with learning disabilities and/or autism. This includes:
A first report of findings from the Learning Disability Census 2014 – following on from the 2013 Census (but with some revised questions), this gained information from providers about people with learning disabilities in specialist learning disability inpatient services on 30th September 2014 – available here http://www.hscic.gov.uk/catalogue/PUB16760
A report summing up in great detail what the ‘Transforming Care’ programme has been doing over the two years since it started, it also contains some information from the latest quarterly data collection from commissioners about how many people with learning disabilities are in specialist inpatient services. This also has an easy-read version https://www.gov.uk/government/publications/Winterbourne-View-2-years-on
A report setting out future plans for a rebooted ‘Transforming Care’ programme, based partly on a response to the ‘Time for Change’ report published last October - I’m trying to not give a certain person the oxygen of publicity. This is available here (I couldn’t find an easy-read version): http://www.england.nhs.uk/ourwork/qual-clin-lead/ld/transform-care/ As an aside, I still can’t decide if it was an oversight or a very subtle joke that ‘Time for Change’ is also the title of a song by Motley Crue http://www.azlyrics.com/lyrics/motleycrue/timeforchange.html
There are good summaries from David Brindle in The Guardian http://www.theguardian.com/social-care-network/2015/jan/29/winterbourne-view-two-years-on-report and Andy McNicoll in Community Care http://www.communitycare.co.uk/2015/01/29/learning-disability-care-fines-providers-stronger-right-challenge-placements-among-latest-post-winterbourne-reforms/ .
Like a pyramid of Ferrero Rocher I’ve found this welter of material hard to digest in one go. I had a first bite about the Learning Disability Census http://chrishatton.blogspot.co.uk/2015/01/unwrapping-first-ferrero-rocher.html In this one I’ll be sharing some thoughts, in no particular order or making any logical sense, on the rebooted ‘Transforming Care’ report. And like a Ferrero Rocher (work that metaphor!) there’s a shiny wrapper but a kernel of a nut that’s hard to crack – whether you like the product or not is probably a personal preference.
Generally, there’s still a lot to be worked out, with most of the more difficult issues kicked down the road in ‘Time for Change’ (see http://chrishatton.blogspot.co.uk/2014/11/the-times-they-are-not-changing.html ) still not (yet?) resolved. I must admit I’m a bit conflicted about this – I would much prefer that a bit more time is taken to really get things right rather than going for quick and pointless, but at the same time a lot of people’s lives have, are being and will continue to be blighted (or even ended) because of a lack of urgency. And the report is markedly short on timelines for getting stuff done – perhaps these will emerge as part of the mooted outcomes framework, but as the latest Census data show, policy aspirations without clear targets are blatantly ignored. Possibly the most promising vehicle for this in the plan is to get better, explicit standards into the NHS Standard Contract – it will be important to see how exacting these standards are, and whether any possible sanctions will be sufficient to change the behaviour of commissioners and providers.
Although it’s badged as a joint document from a whole bunch of organisations (the familiar whiff of concordat in the air), it seems to me that NHS England are making all the running and are the ones (possibly with the CQC) making any commitments about doing things differently. I don’t think I’ve seen anything in the document suggesting that the LGA and ADASS are going to push local authorities to do anything at all, beyond the usual vague statements about moving towards pooled budgets etc.
The Ministry of Justice seem dangerously disconnected/absent from this . They’re not one of the ‘authors’, and I think there were only a couple of mentions about how things are going to be discussed with the MoJ. But they’re obviously a really important piece of this jigsaw puzzle, given that 25% of people in inpatient services have MoJ restrictions on their discharge. How are offenders with learning disabilities being identified as such, how does liaison and diversion work, how are decisions made about MoJ restrictions (and is there any evidence that they’re doing a good job)? On the cost-shunting principle, is there a financial incentive for the MoJ to get people diverted into health systems rather than going into overcrowded prisons? And of course MoJ functions such as the Court of Protection are really important (and possibly more so if ‘rights to challenge’ are going to happen before people are admitted to an inpatient service?).
It looks like the Care Quality Commission are committed to getting tougher, particularly with regard to enforcement powers. But inevitably this will happen after damage has already been done – why are commissioners being let off the hook in terms of their responsibilities and leaving it to the CQC to be the bad cop? (and with regard to Foundation Trusts Monitor are nowhere to be seen). It would have been good to see a clearer statement that CQC will proactively state that they will not register certain types of services (all those ‘autism hospitals’ and suchlike coming up on the rails).
The document mentions at various points that ‘stakeholders’ including people with learning disabilities and/or autism, families etc will be involved, but not yet any detail on how this will happen. The organisational chart has “Stakeholder Engagement” as something of a floater – will there be real power for people with learning disabilities and families here?
There are also various mentions of consulting on measures to ‘strengthen rights’ – presumably this is the rumoured Green Paper (they could just adopt the upcoming second draft of the #LBBill and save themselves some time…). Is a Green Paper not mentioned as such to give the civil servants some wriggle room, either to kill it altogether or to upgrade it to a White Paper?
The programme places a lot of weight on Care and Treatment Reviews as the forcing agent to drive people coming out. The early numbers reported (1,032 Care and Treatment Reviews, of whom 566 people have been ‘discharged’ – as @DavidGilbert43 has pointed out, a delightful term) are encouraging, but will they be enough to drive the big changes needed in the absence of real changes to commissioning structures…
…Which leads me to our old friends, the commissioners. Although the document is far too polite to call it bluntly, it is damning about commissioners, saying that (I paraphrase somewhat) despite the fact it’s bleedin’ obvious (and has been for some time) what good looks like, some commissioners still don’t have a clue and want to be told exactly what to do in the form of a ‘service model’ which they can apply robotically. First, this is extreme dereliction of duty on the part of commissioners. Second, it seems the Winterbourne JIP (as I think an example of a more generally applied weak ‘influencing and sharing good practice’ approach) hasn’t been able to touch these particular commissioners – perhaps they’re not just ignorant, perhaps it’s because they don’t give a toss. Transforming Care doesn’t say that anything is going to change about current commissioning structures at all (beyond some general statements about encouraging CCGs and LAs to move towards pooled budgets). Also, NHS Specialised Commissioning Teams (which commission a lot of the people in more secure inpatient services) are pretty much absent from being mentioned in this plan.
This weak ‘influence’ model of supporting local areas (this works well when local areas want to be supported, but not when they’re really not interested) will continue, except in ‘The North’ [is this the North East and the North West? The North East has much higher numbers/rates of people in inpatient services than the North West, but the North West has Calderstones…] where there will be a ‘reconfiguration taskforce’. It will be very interesting to see if this is more directive and butt-kicking than what happens elsewhere, and if this is more effective in driving change. The geographical focus is also a bit odd when you look at the regional figures for people in inpatient services, where after the North East the second biggest region for rates of people in inpatient services is the East of England – is this a Norman Lamb nimby effect?
The plan discusses at length a ‘robust admission gateway process’. With legally enforceable rights for people and families to underpin this, it could be a very welcome development. As it’s couched at the moment, I’m concerned that the proposed process will allow admission to an inpatient service if there is no local available alternative – surely that is precisely the problem right now and is a bright shining get-out clause! I think partly because ADASS and the LGA haven’t stepped up to the plate there is little convincing detail here about how sufficient reliably good community supports are going to be developed (and paid for).
The emphasis on more personalisation and personal budgets (and personal health budgets) is very welcome if they are done right – how many people will these be for, who controls how they are done, at what level will these be funded (or what the processes will be to decide this), and will they include the equivalent to an ATU cost in the budget (rather than just being for ancillary extra stuff around a pre-determined residential component)?
The ‘social investment’ stuff from ‘Time for Change’ seems somewhat downgraded to me – there is now no mention of any contribution from government (Libor fund or otherwise) and the plans seem to be about finding a couple of local areas to pilot something (so no clear strategic direction about what, how or in what circumstances social investment would be a good idea). To get an idea of how such ‘investment’ might be spent it’s worth having a look at Appendix 2 of the Winterbourne View report (which I have largely avoided here as it’s largely a record of past activity and seems to have been strategically overtaken by ‘Transforming Care’) – this records area by area how £7 million of DH capital grant money has been used.
The document talks about every local area establishing an ‘at risk’ register of people who might have the potential to end in an inpatient unit. This is an interesting idea but potentially divisive in practice – do you want to be on the register to trigger some form of support or do you want to stay off to avoid a bad rep that will stay with you for a long time? And will this include children? (who are largely absent from this report).
That’s the end of my relatively undigested gobbets of reaction to ‘Transforming Care’. I share with @AliciaWood_HSA in her quite marvellous blogpost “Merry xxxxxxx Christmas” http://housingandsupport.blogspot.co.uk/ a feeling that celebrating and sharing the good only gets you so far, and misses the malignity of many systems (and people within them) when it comes to people with learning disabilities (and if you doubt this, just read @sarasiobhan’s blog https://mydaftlife.wordpress.com/ ).
I’ll finish with this quote from Nigel Evans, the MP for the constituency that includes Calderstones, about its phantom closure (http://www.lancashiretelegraph.co.uk/news/11756016.CLOSE_IT_DOWN__Expert_advises_national_NHS_chiefs_to_shut_down_Calderstones_Hospital/ ): “There is always going to be a need for secure units, so I don’t see how every patient can be released into the community quite frankly. And I don’t really see the benefit of moving patients to smaller units around the country, as I’d still say there’s a need for big and more centralised institutions so that economies of scale kick in. My belief is that Calderstones is essential.”
Just ignorance, or something else?