The earth is round (p<.05) – Personal health budgets and randomised controlled trials

The title of this post is from one of my favourite statistical thinkers (don’t judge me!), Jacob Cohen¹, in an article arguing that the logic of statistical hypothesis testing (the p<0.05 bit) simply doesn’t fit many important research questions, and that making a fetish of statistical hypothesis testing may actually impede sensible research that can make a useful difference to the world.

“Consider the following: A colleague approaches me with a statistical problem. He believes that a generally rare disease does not exist at all in a given population, hence H₀: P=0. He draws a more or less random sample of 30 cases from this population and finds that one of the cases has the disease, hence P_s=1/30=.033. He is not sure how to test H₀, chi-square with Yates’s (1951) correction or the Fisher exact test, and wonders whether he has enough power. Would you believe it? And would you believe that if he tried to publish this result without a significance test, one or more reviewers might complain? It could happen.”

Why am I telling you this? Well, with the announcement of a rapid expansion of personal health budgets have come repeated and influential calls for randomised controlled trials (RCTs) to test whether personal health budgets ‘work’ or not. My concern is that the RCT is becoming increasingly fetishised as the only valid research methodology, and applying an RCT methodology to the expansion of personal health budgets may not be the most effective use of scarce research funding to address the essential research questions. I’m writing not as a person who is opposed to RCT methodologies generally (I’m involved in doing one at the moment), and not as a person who thinks the expansion of personal health budgets shouldn’t be accompanied by rigorous evaluation. I should make clear that I’ve been involved in the collection of practice-based evidence concerning the early development of personal health budgets³, but as the report makes clear I see this as complementary to rigorous research on the issue.

The NHS Choices website, in their news glossary, provides a useful short definition of an RCT (and a judgement too):

“This is a study where people are randomly allocated to received (or not receive) a particular intervention (this could be two different treatments or one treatment and a placebo). This is the best type of study design to determine whether a treatment is effective.”

The logic of RCTs is simple, and has its roots in testing drugs but has much wider scope. You have a treatment X, and you want to see if it’s better, worse or the same in its impact than another treatment Y. Because we often (secretly or openly) want one of the treatments to ‘work’ better than the other one, we can’t trust ourselves to allocate people fairly across the two treatments (without even realising it, we might allocate all the people who we think might be more receptive to the treatment into our favoured condition). So we randomise people instead (in essence on the flip of a computerised coin) so that we can have no influence on who gets what treatment. We hope that this will result in two groups of people that will, on average, turn out to be evenly matched on anything that matters, although randomisation doesn’t guarantee this.

Sounds simple, and indeed the logic of the RCT is straightforward. So why don’t I think it’s the right way to evaluate a rapid expansion of personal health budgets?

First, RCTs assume that there is a more or less standard ‘intervention’, with an agreed standard ‘outcome’ (what the intervention is trying to have a positive impact upon). For me, there are a number of problems with applying this logic to personal health budgets:

·         The way I see them, personal health budgets in themselves are not an ‘intervention’ or ‘treatment’: they’re a different way of commissioning. This means that the ‘treatment’ is in principle not separable from the complex systems within which personal health budgets are embedded. This is important as RCTs typically start with what are called ‘efficacy’ trials (does the intervention work under ideal and controlled circumstances). If these show that the intervention is effective, then RCTs should (although these often don’t happen) to ‘effectiveness’ trials (does the intervention work in the real world), where unsurprisingly the effectiveness of the intervention is much smaller than under ideal conditions. For me, the nature of personal health budgets mean that an ‘efficacy’ trial is either in principle impossible, or at the very least would denature the personal health budgets so severely (in the name of creating standardised, controlled conditions) to make the findings meaningless. So, arguments that ‘proof of concept’ for personal health budgets needs to be established before their application in the real world are misplaced.

·         Related to this, personal health budgets will be a moving target. Because they involve complex changes (and challenges) to existing systems, the ways in which people can use them (and how receptive systems are to them) will be very different in 2015 than in 2020, say. Conducting an RCT that will be out of date by the time it’s completed, as the personal health budget ‘treatment’ will be quite different by then, severely reduces its utility.

·         Personal health budgets will be applied to hugely diverse groups of people with hugely diverse health needs who will use personal health budgets in hugely diverse ways, with hugely diverse parts of health and other systems. Such diversity is a real issue for RCTs – is a personal health budget for a person with mental health issues the same ‘treatment’ as one for a person with COPD, for example? (and variation usually means needing bigger and bigger numbers of participants)

·         Personal health budget holders will be using personal health budgets to achieve highly personalised outcomes for them. Any ‘primary outcome’ measure will have to be a measure of how people are meeting their individualised goals, rather than a standard health or quality of life type outcome measure, especially as for many people the goal of a personal health budget may be to preserve/maintain valued aspects of their lives for as long as possible rather than seeking to improve health/quality of life outcomes (back to diversity again).

·         The logic of the RCT requires that the form of the treatment must be standard for all research participants across the course of the project – this means that any learning about how they could be done better must be resolutely ignored by/withheld from participants while they are involved in the RCT.

·         The RCT requires a fairly standard comparison/control group that is completely separate to the treatment group. In the case of personal health budgets, what would this be, particularly as ‘treatment as usual’ is likely to change as a result of the impact of personal health budgets on health systems, even if a person isn’t getting a personal health budget.

·         For me, the RCT research question ‘Does Treatment X work better than Treatment Y?’ is not the most urgent or important question. When, how, why, in what ways, for whom do personal health budgets work (or not), and what can we learn as we go to improve the scope and coverage of positive impacts of personal health budgets, seem a much more relevant set of questions to me.

Second, having been involved in conducting a relatively small RCT, I’m acutely aware of the time RCTs take, the (potentially necessary?) bureaucracy that surrounds them, and how expensive they are. Even if my concerns above were ill-founded, there are good pragmatic reasons why an RCT would not be the best use of scarce research resources:

·         RCTs take a long time! Setting them up takes a while, decisions would need to be taken on what would be a sensible timescale for personal health budgets to ‘work’, and there would possibly be follow-ups too? As I’ve said above, I think this would mean that RCT findings would be assessing a historical moment in time by the time they came out.

·         The standardised nature of the RCT method would denature the actual application of personal health budgets over time, both for trial participants and for the service systems with which people engage.

·         As personal health budgets expand, I’m unclear how people would react to being randomised, particularly if they’re randomised to the ‘treatment as usual’ condition.

·         Methodologically, the risk of ‘contamination’ (charming word) across conditions is huge - people (even health professionals!) talk to each other which could compromise the RCT trial design in all sorts of ways.

·         With the diversity of people’s health needs, how big would any RCT have to be? Across how many areas of the country? How expensive would this get? This seems to me like we’re entering into the realms of ‘waste’ in research (http://www.thelancet.com/series/research).

So, what are the alternatives to RCT methods in this context? Personally, I think the research funding that is available could be better spent on a programme of implementation research⁴, with people using personal health budgets and those supporting them at the heart of decision-making about what the essential research questions are, and which research methods will yield relevant, timely findings that can feed into ongoing learning about how to do personal health budgets well. Too many good ideas have suffered when they have attempted to be scaled up – why not design a research programme that rigorously investigates such an attempt to scale up, while simultaneously supporting it?

References

1.            Cohen, J. (1994). The earth is round (p<.05). American Psychologist, 12, 997-1003. http://ist-socrates.berkeley.edu/~maccoun/PP279_Cohen1.pdf

2.            NHS Choices. News glossary. http://www.nhs.uk/news/Pages/Newsglossary.aspx

3.            Waters, J. & Hatton, C. (2014). The POET surveys 2014. Personal health budget holders and family carers. London: Think Local, Act Personal. http://www.thinklocalactpersonal.org.uk/_library/Resources/SDS/POET_health_FINAL_24_Oct.pdf

4.            Peters, D.H., Tran, N.T. & Adam, T. (2013). Implementation research in health: A practical guide. Geneva: Alliance for Health Policy and Systems Research, World Health Organization. http://who.int/alliance-hpsr/alliancehpsr_irpguide.pdf

My kind of high security

In my ‘Return of the Chunky Ninjas’ blogpost (http://chrishatton.blogspot.co.uk/2014/10/return-of-chunky-ninjas.html) a couple of weeks ago, I suggested the following:

Rather than having block contracts for big service providers, why not have guaranteed 10-year amounts for people’s IPCs (people could return some of their IPC if they thought it was too much, and there would be the option for the amount of the IPC to increase if necessary). The money always follows the person.

It got a bit lost in subsequent Twitter discussions, except for @neilmcrowther who commented  “imagine could make huge difference if someone got that age 14-24”

To be honest, I was a bit embarrassed that this thought had occurred to me some 20 years later than it should have done. But again, as @neilmcrowther commented “cos something that should be so intuitive runs completely counter to common custom?”

So, this is a quick blogpost to highlight this idea and hopefully get some discussion on it. Why do I think it could be helpful?

1) It could remove at one stroke a lot of the insecurity that people and family members have to experience about the amount of their personal budget, particularly in terms of arbitrary changes/cuts to the amount and the feeling of also having to justify yourself to the local authority/NHS all the time.

2) This security gives people the chance to really plan for the ‘imagined future’ (@sarasiobhan’s vital words), rather than being stuck in a perpetual, insecure present.

3) It places more power in the hands (both individually and collectively) of people, families and allies to shape what supports they want in their local area.

4) It also removes a lot of the petty and spiteful bureaucracy (I’m thinking particularly of the experiences of @MarkNeary1) that often seems to unnecessarily attend the way that local authorities administer personal budgets. Why not leave people to get on with it, with people simply producing a straightforward annual budget report every year?

5) It separates what should be a positive process of helping people work out what supports will work best for them from what is felt as a punitive process of deciding how much the budget should be, which I imagine would be a great relief to many social workers as well as to people and families.

Of course there are issues with this idea. The initial budget setting process obviously assumes huge importance. There also needs to be some way of checking for outright fraud that isn’t used as an excuse for bringing insecurity and spiteful bureaucracy back in (although how long can woefully underperforming/actively dangerous providers carry on with block contracts at huge cost?). Decisions need to be made about uprating the annual amount in line with inflation, whether any underspend is given back (without affecting the next year’s amount) or can be saved for later investment, and how the amount can be revised upwards as people’s needs may change?

If all this sounds too utopian and costly, I would ask you to consider the following:

Local authority returns and personal social services expenditure data suggest that there were 105,305 adults with learning disabilities subject to assessment/care management in 2012/13, at an average annual cost of £3,105 per person per year (my estimate is a total cost per year of £326.9 million). I think these proposals should drastically cut this expenditure.

I’ve been trying to do some estimates on the likely amount of NHS and local authority money being spent directly on adults with learning disabilities. At the moment (and there’s more work for me to do here), I reckon it comes to at least £6 billion per year. Surely much of this could be better spent?

Update: As @milton_damian and @MarkNeary1 have quite rightly pointed out on Twitter, this post assumes that people still have to prove themselves accountable to the state. They rightly argue that:
1) the state should have to prove itself accountable to people, not the other way round
2) Mechanisms of 'accountability' like those proposed above can be and are used as stickes to beat people with
3) Things like DLA, child benefit etc don't require such 'accountability'.

So - scratch that bit of the blogpost above!

Return of the chunky ninjas

This is kind of prompted by a passionate blogpost from @ProfRHastings “Challenging behaviour and learning disability in the UK – the three options” (available here http://profhastings.blogspot.co.uk/2014/10/challenging-behaviour-and-learning.html?m=1 ). This post clearly outlines some points of agreement on the major issues concerning the (mis)treatment of people with challenging behaviour. He calls for a systemic, comprehensive approach to change rather than a piecemeal focus on any particular element of this dysfunctional system, which on its own will be doomed to failure. The three options in the title of the blog are really two; to write another report restating what we already know; or to follow through on well-elaborated ideas from Richard and others for a challenging behaviour academy for England. His third option is really a challenge, to go on if you think you can come up with something better.

As I'm someone who has been on a protracted whingeathon about recent policy concerning inpatient services and support for people with learning disabilities generally, this challenge is well made. So, this blogpost is an attempt to put a bit more flesh on the bones of a post I wrote in June which included a ninja proposal about getting people out of inpatient services and making sure that people don’t go into them (available here http://chrishatton.blogspot.co.uk/2014/06/now-is-winterbourne-of-our-discontent.html ).

As ever, the ideas in the original proposal and their development here are in a real sense collective, as they’re the result of conversations with a lot of people and continuously inspired by the #justiceforLB campaign (all ridiculousness here is mine alone, however). They are also obviously a starting point for more conversations rather than an end-point. Although not ideal (nothing ever is, of course), these ideas also start from where we are (deep, huh?) in terms of current legislation and some major currents in policy.

I think the ideas that follow fit with the “We Have The Right” statement recently produced by people with learning disabilities (available here http://www.changepeople.org/wp-content/uploads/2014/10/CHANGE_Statement_01Oct2014.pdf ).

I also think the ideas here would have a much greater chance of making a real difference to people’s lives if they were underpinned by the #LBBill passing into law (see here for background information to the #LBBill http://lbbill.wordpress.com/2014/09/28/what-is-lb-bill-easy-read-overview/ ).

These ideas are agnostic about a national challenging behaviour academy – such an academy could fit here but isn't assumed – for me the question of the best ways to support people with challenging behaviour would be a matter for the national ninja taskforce.

The original soy skinny ninja proposal was this:

·         Close all of these services to new admissions.

·         CQC to make a clear statement that they will not register new services of this type, and that they will have a process of deregistration of existing services.

·         For all commissioners still funding people in these services, take that funding off them to be administered by a national ninja closure taskforce. This would give the taskforce a starting budget of over half a billion pounds per year (could add in the Winterbourne View programme money too?).

·         Put people with learning disabilities and families really in charge of this ninja taskforce, making decisions about who is appointed to work on the taskforce in which capacities, what the taskforce does, and how it operates.

·         The ninja taskforce works to develop local, individual supports for people moving out of these services – with new people, agencies and supporters rather than with the usual provider suspects (unless the usual provider suspects can come up with something really good that the person and family members want). Obviously this would be person-centred, with the person and family in charge.

·         Funding at its current ATU level moves with the person (howls of protest, two-tier Rolls Royce service, all true, but it would demonstrate what good looks like).

·         The ninja taskforce also help to develop local, individual supports for other people with learning disabilities who might have been sent to these places by commissioners, including strong local structures for self advocacy and family advocacy.

·         The ninja taskforce to help to develop ways of supporting people with learning disabilities in acute distress/crisis for short periods of time.

So, here come the chunky ninjas to describe in a bit more detail what might need to happen to help, focusing a bit more on stopping people going in rather than getting people out (the main focus of the original ninja taskforce proposal above).

Stopping people going in…

1) Start from the beginning. All children identified as having a learning disability will, in theory, have Education and Health Plans (EHCs, which unfortunately sound like a polite Yorkshire retch) which are supposed to support people up to age 25. Strong support and oversight of EHCs are needed if they aren’t to be inconsistently and patchily applied. National standards for the way these plans are produced and reviewed need to be to driven by children/young people and families. It is vital that these plans start from a position of identifying people’s strengths and encouraging/supporting the development of imagined futures (@sarasiobhan’s phrase) with children/young people. In support of this, plans also need to identify children/young people who might be at risk later on of becoming distressed, showing challenging behaviour or breaking the law (including identifying ‘public health’ risk factors like living in poverty and facing adversity early in life).

It is vital that parents and children/young people are the driving force for EHCs, particularly such that parents don’t have to highlight ‘problems’ for them to get good support. Children/young people and families need to have control over the aims of the EHC plan, there needs to be transparency and predictability about the resources underpinning each plan, and they need to control how the plan is to be delivered (with a minimum of bureaucracy).

Local areas should be required to produce regularly updated, publically available (and easy to find) information about the number and needs of children and young people up to the age of 25 in their area, and what is being done to help children/young people and their families to get the support they want.

It is also important that local areas have a really good handle on children/young people in residential special schools, whether in or out of area. A parallel process to inpatient service closure for adults (and the prevention of admissions to residential special schools) should be instituted for residential special schools.

An additional source of information and support should be annual health checks for people with learning disabilities, which are being extended to include young people with learning disabilities from the age of 14. Current financial incentives for GPs have only resulted in just over half of ‘eligible’ adults with learning disabilities receiving annual health checks. Strengthening the requirement for GP practices to register people with learning disabilities and to conduct annual health checks is needed. It’s also vital that health checks for young people with learning disabilities cover the important issues for this group, including potential signs of distress – these should be closely linked to and work with EHCs. National standards for the way that health checks are done need to be to be driven by children/young people and families, with professionals in support.

2) Don’t write anyone off. Each local area needs to have good, regularly updated and publically available information about:

a) Adults who already show behaviour that challenges and/or mental health issues.  

b) Adults who experience crises – they may not be known to health or social services and even if known, may not meet social care eligibility criteria until the crisis happens. This is obviously less easy to predict, but local areas need to have some idea of how many people in crisis are likely to emerge in any given timespan (and to offer this group of people low level support in advance of a crisis, including advance planning for if/when likely crises/changes in people’s circumstances occur).

c) There is the group of offenders who have been diverted from prison, and there are also prisoners with learning disabilities. Local areas need to have good information on these groups, including what their offences are, what the prison term would have been/is and what level of security is specified for them at the moment.

3) I think Integrated Personalised Commissioning (as far as I understand it, the ‘official’ NHS England term for personal health budgets, but they should draw in social care funding too) are important here, especially as NHS England are pushing this approach generally. Where will the money come from? Well, if personalised commissioning is taken seriously then existing boundaries between commissioners (NHS specialised commissioning, local Clinical Commissioning Groups (CCGs), and local authorities) need to be dissolved, as these boundaries  automatically create incentives for different commissioners to try and shunt costs on to someone else. Could funding from these sources be pooled, then commissioners would be much more about helping people (individually and collectively) to get the support they want rather than commissioning services that they then have to squish people into?

At a local level, it needs to be possible for people/families/allies/advocates to come together to specify what support they want and work with potential providers of that support so they can get that support. We need to avoid over-complicated tendering/procurement processes and block contracting so that people can get what they really want/need (potentially from new or very small organisations) rather than necessarily what existing big support providers already do (although some people will want what service providers already do, which is fine). In some places it might make sense for some support services for people across different local areas to band together?

Rather than having block contracts for big service providers, why not have guaranteed 10-year amounts for people’s IPCs (people could return some of their IPC if they thought it was too much, and there would be the option for the amount of the IPC to increase if necessary). The money always follows the person.

For individuals, Circles of Support or other ways of supporting personal budgets could be used as models for supporting people and families to make good use of their IPCs. Good independent advocacy and peer advocacy should also be available to all people who want it. There can be multiple vehicles for delivering IPCs (including but not confined to direct payments, broker managed budgets, provider managed budgets etc). The person/family/allies need to be in control of which vehicle suits them (and retain the option to change this), the whole process needs to be easy, transparent, reliable and fair, and require a minimum of paperwork to manage.

IPCs should include advance planning for potential crisis situations – what does the person/family/allies want to happen in those circumstances and how is that support going to be available?

People/families/allies need to have support/expertise/resources developed regionally/nationally to draw on if they wish to. The national ninja taskforce is definitely needed (led by people with learning disabilities/families/allies) to direct operations and keep everyone honest.

4) I think annual health checks (and more specialist health support) have a crucial role to play for everyone, in checking for health conditions that might be associated with discomfort, pain, and behaviours potentially viewed as challenging or indicative of a mental health problem and resolving the health condition. The issue of medication (particularly multiple medicines, particularly particularly psychotropic medication, and particularly particularly particularly antipsychotic medication) is obviously crucial as well. There needs to be a strong, enforceable way to ensure that medications are reduced and kept to a minimum.

5) Can anyone issue a blanket order preventing any new admissions to particular types of inpatient services? I suspect not, in which case there need to be strong contingencies such that it’s much harder for commissioners to get someone into an inpatient unit than to provide decent community-based support. The #LBBill is particularly important here. It’s also vital that people who have committed a crime but been diverted from prison, and residential special schools, are not left out (or more to the point, left in).

6) NHS England should impose tough, nationally specified contracting standards on existing commissioners (specialised commissioners and CCGs) setting out in very clear terms what is required in terms of commissioning places in inpatient services. This might include the operation of the #LBBill before a placement is decided, a complete health assessment and time-limited discharge plan set on arrival. And how about a person being placed in an inpatient unit triggering an IPC, with the amount set at a minimum at the inpatient service weekly fee and to follow the person once discharged?

7) The CQC making a clear statement about models of inpatient service they will not register, with plans for new inpatient services having to be submitted to CQC in advance to them for adjudication.

A quick word on getting people out…

I think pretty much everyone who is currently in inpatient services (with the possible exception of the 73ish people with learning disabilities in high secure services) could also plug into the way of doing things outlined above, with the money for the IPC following them (from NHS specialised commissioners and CCGs mainly). Even if people require a degree of security, there is no reason why a circle of support and an IPC would not apply to them, presumably with one aim among others of needing less security over time. As people move out of inpatient services, they could then plug into and become part of the local networks described above.

Where’s the money?

Changing the way any system operates always costs money, at least while the system changes. Although this is obviously not a fully costed proposal, there are some sources of potential savings that should arise from this proposal to help support the proposed changes, including:

1) The cost of specialist inpatient services for adults with learning disabilities, currently running at over half a billion pounds per year.

2) The cost of residential special schools for children and young people with learning disabilities. Although recent data are unavailable, there are likely to be at least 1,000 children and young people in residential special schools in England. If these are funded at similar levels of assessment and treatment units, closing residential special schools would save at least £150 million per year.

3) There are around 30,000 adults with learning disabilities in England in some form of residential or nursing care funded by social care, at a cost of approximately £2.1 billion per year. Assuming that half of these residential placements would not be the preferred option for people with learning disabilities would in itself provide £1 billion a year for re-investment.

4) There are some other ‘big ticket’ items of social services expenditure on services for people with learning disabilities that some people with learning disabilities may not choose to keep using, such as day centres (current cost over £700 million per year).

5) Finally, there are a number of smaller areas of potential savings (for example, less prescription of antipsychotic medication) that are all relevant when evaluating the cost implications of these ideas.

In total, I think £2 billion per year wouldn’t be a ridiculous figure in terms of funding for reinvestment in a new way of doing things, not to mention ongoing savings from putting in decent, early support so that fewer people end up in crisis in the first place.

Personally, I worry that for the short-term injection of cash, social investment models ask too high a price in terms of the amount of money that would be sucked out of supporting people with learning disabilities into the pockets of social investors. If an investment model of this type is needed (and I think new buildings are less important than building good support from good people), what about some kind of national or regional state investment bank, with guaranteed low rates of interest and the returns being used for the bank to make further investments in supporting people with learning disabilities?

Chunky ninjas

So, the ninjas have put on a little weight – what do you think?

The best defence is a good offence

I know, I know (thank you for ongoing twitter tutorials @FindlayEquality and @rich_w), I do my best to take to heart the Antonio Gramsci mantra of “Pessimism of the intellect, optimism of the will”. But as the Sir Stephen Bubb group’s task nears completion, there’s a worry that’s increasingly on my mind as I see the public manifestations of the group’s thinking and Jeremy Hunt’s response to the excellent question on ATUs posed to him by @BendyGirl and @People1stEng.

My personal nightmare scenario runs something like this:

1) The original Sir Stephen Bubb plan only proposes to work with around 1,700 people currently in inpatient services. As I’ve set out (and as the Jeremy Hunt response also implies), I think this means that the plan is only going to work with those people who are not in forensic inpatient services (around 1,600 people in total, although the majority of these people are in low secure services and very few – 73 in the 2013 LD Census – are in high secure services).

2) So, the plan goes forward working to get the non-forensic group of people out of existing inpatient services. A network of purpose-built residential services springs up for this group of people across the country (maybe some existing inpatient services will change their remit to fit?).

3) In the absence of enough decent local support for people with learning disabilities and their families, new cohorts of people will continue to become highly distressed, and/or show ‘behaviours that challenge’ (who knows, maybe even some of the people in the new purpose-built residential services?)

4) So, if you’re responsible for local services, what do you do if your previous option of Friday afternoon crisis commissioning is unavailable to you? Could there be a trend over time of seeing these behaviours as potential offending behaviour rather than challenging behaviour (particularly if it includes aggression or destruction of property) and calling the police in?

5) This would set the person into contact with the criminal justice system – if convicted, increasing and improving liaison and diversion schemes (which partly exist for the excellent purpose of trying to reduce the number of people with learning disabilities in hostile prison environments) would mean that the person would not go to prison.

6) So where would the person go instead? Maybe an ever increasing number of specialist forensic inpatient services (another way that existing ATUs can repurpose themselves?)?

7) In 2025, will we have a national network of expensive, new residential services with people compelled to stay in them under long-term contracts, that will be seen as anachronistic (and sucking money out of supporting people into the pockets of private investors)? Will we also have an expanded national network of ‘specialist’ inpatient forensic services for offenders with learning disabilities (say, for around 3,000 people?)?

Solves a problem for local commissioners (problematic people out of sight, out of mind, and paid for by someone else). Keeps inpatient services in business. Keeps the prison population down. Creating a whole new class of people with learning disabilities without strong legal rights, branded as ‘dangerous’, in a whole new(ish) class of institution – never mind.

I know this is beyond cynical and I’m quite ashamed of my brain for going in this direction. I really want to be persuaded that this won’t happen.

Transforming Care Steering Group update

The latest batch of papers from the Transforming Care and Commissioning Steering Group, chaired by Sir Stephen Bubb, have been made available by NHS England at the bottom of this webpage http://www.england.nhs.uk/2014/08/01/community-support/

There are the agenda and notes from a meeting held on 18^th August, a paper containing a draft of a ‘National Framework for Local Commissioning’ and a paper from Skills for Care on workforce development.

You will be relieved to know I won’t be going through these in depth – instead in a relatively short post I just want to make a few observations arising from my reading of these papers.

1) The social finance reference group. This group is supposed to be coming up with options for the social financing of the transforming care strategy. The person leading this group is the CEO of Social Investment Business. According to Debrett’s ( http://www.debretts.com/people-of-today/profile/24799/Stephen-John-Limrick-BUBB ), Sir Stephen Bubb has since 2008 been the Chairman of Social Investment Business. Furthermore, the meeting notes state that Social Investment Business and Big Society Capital are jointly funding a consultant to work on this. What is their expectation for a return on this investment?

2) The meeting notes also mention that NHS England have developed a draft stakeholder partnership proposal (this is not one of the papers published on the website). However, this proposal appears to have been knocked back by Sir Stephen Bubb (“SB noted that this is a proposal for extensive engagement and we must be careful not raise expectations unrealistically. The group has a discrete, time-limited task and finish activity to complete and we are not able to engage in full consultation.”). It would be good to see the proposal, but it sounds highly promising to me – why was it dismissed? This is particularly worrying, as the Steering Group are not managing to complete the very limited engagement goals they have set themselves (“SJ said that in either case he is finding it difficult to make contact with people we need input from on the Steering Group’s stakeholder engagement reference group.”).

3) The draft ‘National Framework for Local Commissioning’. The ostensible purpose of this paper is “To set out for discussion the key areas where clarity, work and contributions will be needed to develop a robust commissioning framework for community-based support for people with learning disabilities or autism”. The paper does indeed set out a number of fundamental questions to be addressed and the information that would be needed to inform answers to these questions. Why then, with so much uncertainty, does the paper only state one ‘preferred option’ when it comes to commissioning? “We need to agree criteria and work these through, but an attractive option (given the need to drive-up and assure quality, stimulate market development, secure good value for money, and enable genuine locally-led co-commissioning) could be a centrally procured, quality-driven nationally-procured framework from which local commissioners and users can call-off” (underlining in original). In terms of contract duration, the paper states “Needs to be long enough to enable investment to be re-couped and risk shared fairly and avoid frequent disruptive changes in providers – 7 years+?”. Why is this the only option on the table, why is it proposed before the fundamental questions in the rest of the paper are addressed, and what work is being done on alternatives?

4) The workforce development paper from Skills for Care. I would recommend you read this, as it takes a quite different approach to the Steering Group so far. Indeed, this paper states:

“Whilst we fully understand ACEVO’s remit, Skills for Care would argue that the contribution of all parts of the social care sector and specifically individual direct employers and small user led / family led groups and innovative PBS networks must be harnessed to achieve the outcomes needed.

We are aware that there is a belief in some parts of the social care and health infrastructure that the skills required to work with people in crisis or who may need very particular care and support can only be developed within health settings. This must be completely rebutted, We maintain that the skills can be developed anywhere so long as they are based around the individual people’s needs, hopes, situation and interests, and that the workers in question have been recruited for the values they hold.”

For fans of Freud, there is a revealing slip in the meeting notes. The action recorded in response to the workforce development paper is “All to send comments on commissioning framework proposal to HW and BR” – copied and pasted from the actions concerning the ‘National Framework for Local Commissioning’ and, of course, not referring to the workforce development paper at all. What, if anything is going to happen to this workforce development paper?

 In summary, it seems to me that the Steering Group is designed to enact the original plan put forward by Sir Stephen Bubb as soon as possible, with any good work that might challenge this being brushed aside. I hope I’m wrong. 

A gilded cage? Part 2

“A glided cage is still a cage” (Lady Hale, in the Cheshire West case)

Warning - this one's really long (there's a brief summary at the end though, so feel free to skip to that if you like).

This is Part 2 of a double-header focusing on documents made publicly available concerning the NHS England “Transforming Care and Commissioning Steering Group”. Part 1 (available here http://chrishatton.blogspot.co.uk/2014/08/a-gilded-cage-part-1.html ) focused on the terms of reference and minutes of the first meeting of the Steering Group. This post (imaginatively titled Part 2 will focus on the original ACEVO plan also made public on the same NHS England webpage as the ‘Scoping solution’ document (available here http://www.england.nhs.uk/2014/08/01/community-support/ ).

As Sir Stephen Bubb’s initial blog is remarkably faithful to the longer plan, many of my initial observations from reading his blog (available here http://chrishatton.blogspot.co.uk/2014/07/deja-vu-all-over-again.html ) still apply. This post will ask some additional questions arising from some of the details contained in the plan. 

I’m also aware that as I’m writing this a bunch of excellent folks on Twitter are digging out very similar questions to me, so apologies when I’m repeating what someone else has already expressed more pithily than me.

The sections of the four page document are as follows, providing a handy guide in themselves to the plan’s preoccupations:

·         Addressing the problem

·         Commissioning appropriate local placements

·         Capital Implications

·         Revenue Savings

·         Long term contracts

·         A National Framework locally delivered

·         Future Considerations for the NHS

Addressing the problem

To paraphrase, this states that:

·         The Winterbourne View programme has failed (“out of a total of 2,615 patients, only 256 have a transfer date”).

·         The voluntary sector are the people to sort it (with the “capability and aspiration”, “deep knowledge and experience of this client group”, and “extensive operational expertise and national reach”).

In terms of a plan, the final point is the crucial one, stating that:

“The numbers of clients (estimated at 1,702) are not impossibly high to deal with (between them, the charities represented at the ACEVO meeting alone support tens of thousands of people each year, including with supported housing) and the sector is in a position to directly develop local services that meet the needs of children and adults with a learning disability and behaviour that challenges.”

This final point makes me doubt where the group as convened does have the “deep knowledge and experience” required to make the task a success:

First, I’m not convinced they know their numbers. The 2,615 “patients” number they mention is from the latest commissioning returns, but this is likely to be an underestimate as some people in specialist inpatient services aren’t known to commissioners and the overall number of people in specialist inpatient services is going up, not down (see http://chrishatton.blogspot.co.uk/2014/06/now-is-winterbourne-of-our-discontent.html ).

Second and more worryingly, I don’t know where the suspiciously exact figure of 1,702 “clients” comes from. In a relatively recent post (see http://chrishatton.blogspot.co.uk/2014/07/how-low-can-you-go-how-many-people-with.html ) I tried to present what we know about the number of people with learning disabilities in various types of specialist inpatient services under the broad label used by NHS England. I also tried to tease out the implications in terms of how many people, with the right support available in the community, did not need to be in inpatient settings. Looking at these numbers again, I wonder if this plan is ignoring all those people with learning disabilities in various types of forensic inpatient settings (perhaps all those commissioned by NHS specialist commissioners rather than locality-based clinical commissioning groups?). To my mind (and others too) this group of people absolutely needs to be included rather than excluded from a national action plan.

Commissioning appropriate local placements

Again, to my mind this section also shows a misunderstanding of some fundamental issues. I know it makes for a long post, but most of this section is worth quoting directly:

·         Regardless of the reasons why patients have been classified as not appropriate for transfer to the community, it remains the case that people have ended up in long stay, large-scale hospital services because appropriate local services have not been effectively commissioned.

·         This has increased and perpetuated the use of long term hospital placements which are poor value for money and far removed from home. This is a key stumbling block for successful transfer.

·         It has therefore the view of the ACEVO group that the key to transferring current patients out of hospital placements is the development of cost effective and sustainable local housing and support solutions as soon as possible.

·         This will help to overcome other barriers to transfer that have been identified.

·         We understand that the numbers are debated and that they may be higher than the stated position, especially as patients in crisis continue to be admitted. This is largely the case because there is no other crisis support available

·         That is why we propose that as well as commissioning local placements for existing patients, there should be a two pronged approach to ensuring that there are no more inappropriate admissions. This will involve:

o   1. Strongly linking the national transfer programme to a national closure programme. This has the added advantage of reducing the risk of double-funding placements;

o   2. Creating a national crisis support service that local authorities can draw on instead of inappropriately sending patients into ATUs. The model that we are most interested in developing is small scale emergency support and care homes specifically for clients with a learning disability who are in crisis.

First, understanding the reasons why people have been judged to be not appropriate for moving out is, I believe, rather fundamental to achieving a successful closure. This is a particularly resistant part of the system that many Winterbourne View Joint Improvement Programme local initiatives have foundered on, and it needs to be understood and measures taken to do something about it.

Second, the inpatient services for people with learning disabilities being discussed here are absolutely not “long stay, large-scale hospital services”. This is a really worrying misunderstanding – we’re not talking about closing big, old institutions here that were designed to (ware)house people for life. These inpatient services are usually small, often quite new (indeed purpose built, which we’ll come to later), and have an ostensibly assessment and treatment rationale. Some ‘lessons’ (gah!) from other closure programmes are transferable but in many respects the terrain is quite different.

Third, I agree that the lack of provision of appropriate local services is a major reason for people ending up in inpatient services. I’m unconvinced that the magic bullet for overcoming all the ‘barriers to transfer’ (an aside: the dehumanising language of this document is quite astonishing) is only the “development of cost effective and sustainable local housing and support solutions as soon as possible”. It ignores completely the role of commissioners, the interests of inpatient service providers and the crisis of resources within public services and the devalued role of people with learning disabilities within our society, and it raises the very obvious question to me of if it’s so straightforward, why hasn’t it happened already? I also wonder how phrases like “cost effective and sustainable” will play out in terms of people’s actual lives?

The two prongs of the proposal mention firstly a ‘national closure programme’. No more attention is given to what this should be and how it could be made to happen. The Winterbourne View Joint Improvement Programme has been trying to do this for some time and not succeeded on its own terms, and the DH Minister Norman Lamb has stated he doesn’t have the levers of power to force it to happen. So this issue seems worth more attention than a throwaway line that suggests the closure programme is someone else’s job.

The second prong is to create a “national crisis support service that local authorities can draw on instead of inappropriately sending patients into ATUs. The model that we are most interested in developing is small scale emergency support and care homes specifically for clients with a learning disability who are in crisis.” Erm, I hate to break it to you at ACEVO, but word for word this is a description of what Assessment and Treatment Units would say they are currently doing.

Capital Implications

In my reading, this section is largely concerned with how to raise £10 million for voluntary sector service providers to build housing for people with learning disabilities moving out of inpatient services. The rationale for such a capital investment programme in purpose-built housing is that challenging behaviour is “strongly influenced by their environment and how it is managed”. My understanding of “environment” in this context is that it is much more about interpersonal environments than a built housing environment, and it is very individual. This plan also ignores the mental health issues and traumatic life histories that some people will be carrying with them.

Based on this understanding I am unclear why purpose built housing is necessary (will housing designs be individualised to each person? What happens if they move house?), rather than finding existing suitable housing in a place where the person wants to live and will afford active engagement with people’s worlds beyond their house. And how big will these purpose built houses be? Will people be “allowed” to move house? And if there’s then an empty “bed”, will someone else be slotted in, old-school? These sound like group homes to me, ignoring the hard-won insights from supported living, person-centred planning and personalisation (of which there is no mention in this plan).

I’m struggling a bit to understand the money/social investment bit, and I’m more than happy to be set straight on this. Even with my limited/absent understanding, I’m not completely convinced of the maths on this:

·         So – Mencap raised a £10 million bond (in my understanding, a fancy name for a loan?) which they used to provide housing services for ‘over’ 137 people with learning disabilities.

·         On this basis, the plan concludes that it costs £10 million to develop housing solutions for 150 people (not 137 people?), it will therefore cost £150 million for capital investment to house 2,000 people [er, wouldn’t this be 2,250 people?].

The plan is to raise 90% of the money, so £135 million, from ‘social investors’ (apparently the Treasury’s Libor Fund will stump up 10%). My knowledge of social investment is restricted to some googling today, and my simplistic view is that in this context social investors have funds (like venture capitalists) which they would lend to fund the capital programme at an undetermined rate of interest? (if these services are provided by big voluntary sector organisations I’m assuming they wouldn’t want an equity stake in them?). As with any loan/mortgage, this would mean no big public investment up front, but at the literal cost of interest paid to the investor (of which a little more in a bit).

Revenue Savings

There are a lot of figures here, but I think it comes down to the assumptions in the plan that existing inpatient services cost £3,500 per week per person, and that the voluntary sector could deliver community-based, purpose built services for the same group of people 40% cheaper (not a great deal of evidence is provided for the second part of this assumption).

So on their assumptions there are 1,702 people (or is it 2,000 people, or 2,250?) to whom this would apply. Currently, they are costing £309.8 million per year (or £364 million? Or £409.5 million? – think the differences in assumptions are starting to stack up).

The plan states that services could be provided for £185.9 million (saving £123.9 million) (or £218.4 million, saving £145.6 million? Or £245.7 million, saving £163.8 million?).

And over the 10-year cycle recommended in this plan as necessary for the contracts (never mind the assumptions made here about whether the people in these services will want to stay in the same house for 10 years, or whether they might want to stay in their house while changing how and who supports them?), even without inflation we’re talking about savings of £1.24 billion (or £1.46 billion? Or £1.64 billion?)

These savings are crucial for the social investment model mentioned earlier. Remember that this plan relies on social investors to invest £135 million at beginning for building the purpose built houses. My understanding is that the return for investors will come out of this notional ‘saving’. If this is right, then a major problem I have with this model is that a big slug of public money that could be reinvested into better community supports at a time when they’re really needed, ends up in the pockets of social investors. If social investors expect a return of only 2% over 10 years, then they make £29.5 million profit on their £135 million investment; 3% gets you £46.4 million profit; 5% gets you £84.9 million profit and 10% gets you £215.2 million profit.

Perhaps the most crucial line in this section is the final one: “This is a cashable saving that would be prioritised for repaying investors’ capital, but in theory a portion could be returned to the NHS.” [my italics]. So perhaps the model for the social investor is to take all the savings?

Long term contracts

This section has just four points, which are repeated in full below:

·         A key principle for the success of this project would be commissioning for long term contracts of around 10 years.

·         This supports the development of partnerships, reduces risk to providers and maximises efficiency and effectiveness for commissioners.

·         A short-term approach will limit the potential for social investment and therefore reduce the financial savings that can be achieved.

·         The other major consideration is the stability of clients. The consistency and continuity of their care is paramount and would be put at risk if providers changed regularly.

Essentially, this insists on 10-year contracts jointly cooked up with commissioners and providers, with no flexibility or autonomy for the people with learning disabilities living with them. People may want stability, they may not, and there is no Plan B for what happens if the service is failing (unless the plan assumes that such failures cannot happen in the voluntary sector).

A National Framework, locally delivered and Future Considerations for the NHS

On my reading, the final two sections of the plan essentially park all the difficult issues that the operational elements of the plan have resolutely ignored, including issues of accountability, what to do about commissioners, local authorities and social care generally, and supporting people with learning disabilities so they stop going into these services in the first place. To me, this reveals the essential nature of the plan. When looking at all sorts of plans and policies, I’m increasingly asking myself the “Cui bono?” question. To whose benefit? I’ll stop there.

A quick summary (if I put this at the beginning no-one would read it!)

·         It misunderstands the situation of people with learning disabilities in inpatient services

·         It ignores a large group of people with learning disabilities in inpatient services who really need to be included

·         It shoves the thorny issue of how to actually close existing inpatient services elsewhere

·         It aims to partly replace short term assessment and treatment units with, erm, short term assessment and treatment units

·         It misunderstands the nature of challenging behaviour and proposes expensive and unnecessary purpose built accommodation will is likely to replicate some of the shortcomings of group homes

·         The social investment model takes large amounts of scarce public money out of supporting people with learning disabilities, rather than investing that money into better support for people with learning disabilities

·         The plan ties commissioners and providers into collusive 10-year block contracts, recreating some of the worst aspects of the current system to the detriment of people with learning disabilities

·         The plan parks, hives off or ignores most of the thorny issues that prevented the Winterbourne View Joint Improvement Programme being successful, while extracting a significant amount of public money over a long period of time towards large voluntary sector providers and social investment

PS: The unconscious is a strange and wonderful thing. Exodus by Bob Marley and the Wailers has just come on my headphones...

A gilded cage? Part 1

I really don’t know how to start this post. To their credit, NHS England have published online what is presumably the original plan submitted to NHS England by Sir Stephen Bubb on “Bubb’s Challenge”, which as revealed in his blog (available here http://bloggerbubb.blogspot.co.uk/2014/07/the-winterbourne-view-concordat-and.html before any word from NHS England) caused so much consternation. The plan is available here http://www.england.nhs.uk/2014/08/01/community-support/ as the ‘Scoping solution’ document. Also available on the same page are the Terms of Reference for the “Transforming Care and Commissioning Steering Group” and the minutes of the first meeting of this group on 28^th July. As an aside, it’s revealing that this page of the NHS England website is completely separate to the NHS England pages about the Winterbourne View Joint Improvement Programme (available here http://www.england.nhs.uk/ourwork/qual-clin-lead/wint-view-impr-prog/ ), with as far as I can tell no connections between them.

I’m very mindful of @neilmcrowther’s comments and Philipa Bragman’s excellent blogpost (available here http://changepeoplephilipa.wordpress.com/2014/08/05/bubbs-breakfast-why-all-the-fuss/ ) about people in glasshouses not throwing stones in terms of making sure that people with learning disabilities, family members and allies are at the heart of decision-making, so I’ll try and confine myself to some questions that occur to me reading across these three documents. Sir Stephen Bubb’s blog is also remarkably faithful to the longer plan, so many of my initial observations from reading his blog (available here http://chrishatton.blogspot.co.uk/2014/07/deja-vu-all-over-again.html ) still apply.

I’m also aware that as I’m writing this a bunch of excellent folks on Twitter are digging out very similar questions to me, so apologies when I’m repeating what someone else has already expressed more pithily than me.

This is also turning out to be quite a long post, so I’m going to post it in two parts. This bit focuses on some questions arising out of the minutes and the terms of reference. Part 2 will take a look at the plan itself.

Timing

The documents between them give us some more clues on the timing of the process.

·         At some point before 29^th May, Sir Stephen Bubb had his meeting with Simon Stevens.

·         The breakfast meeting referred to in Bubb’s Blog occurred on 29^th May.

·         The plan is reported as being written in June.

·         Bubb’s Blog announcing the plan was published on 14^th July.

·         The NHS England news release on a “National group to drive improved healthcare support to people with learning disabilities” was published much later on 14^th July (available here http://www.england.nhs.uk/2014/07/14/learning-disability-support/ ).

·         Bubb’s Blog: the original post was updated on 14^th July and other relevant instalments were published on 22^nd July (http://bloggerbubb.blogspot.co.uk/2014/07/winterbourne.html )  and 31^st July (http://bloggerbubb.blogspot.co.uk/2014/07/roasting.html ).

·         The first meeting of the Steering Group was on 28^th July, with further meetings scheduled for 18^th August, 10^th September, 7^th October and 27^th October.

·         The Steering Group has a commitment to deliver a delivering a National Framework by the end of October.

So, from this timeline it seems that the plan was written six weeks before any public mention of it (I wonder how widely circulated it was around NHS England?). I also wonder whether there were any internal decisions that prompted Sir Stephen Bubb to write in his 14^th July blogpost that this was, in effect, a done deal? Without Sir Stephen Bubb’s post, when would the plan have been made public?

Who is the Steering Group?

There are some revealing differences between the membership according to the Terms of Reference and the actual attendance/apologies list from the first meeting of the Steering Group.

Names that appeared to have been ‘dropped’ from the Terms of Reference to the actual meeting include representatives from the CQC, The Local Government Association, a Clinical Commissioning Group,  the National Forum (i.e. a person with learning disabilities), ‘Families and carers’ (i.e. a family carer of a person with learning disabilities) and an additional family carer representing Mencap in addition to Mencap’s Chief Executive.

People attending the Steering Group who are not listed in the Terms of Reference include 5 people within NHS England and the Head of Health Commissioning for ACEVO.

So the people actually attending the first steering group meeting included two people from ACEVO, nine people from NHS England, three people from voluntary sector providers, one person from the NHS Confederation, one person from the Challenging Behaviour Foundation, one person with learning disabilities and an ‘independent psychiatrist’.

The meeting summary just below this list states “A new steering group combining expertise from the public, voluntary and community sectors will develop a national framework for improved services for people with learning disabilities or autism. Local authority and provider representatives will be invited on to the group”. The minutes also note some “confusion and upset about the steering group because stakeholders have not been clear about what the group is doing.” Various solutions are discussed in the minutes but actions from these discussions (beyond “arrange meetings with Winterbourne View families” and “NHS England will provide the map of learning disability groups”) are unclear.

I don’t want to labour the point, but it’s clear that the membership of the Steering Group isn’t fit for purpose. Two quotes from the minutes: “GH [the only person with learning disabilities on the Steering Group] emphasised the important [sic – I assume importance?] of talking to people with learning disabilities as they know best what services they need”; “DS…time may limit the amount of engagement we can carry out”. Finally, it would be good if the reasons for the ‘disappearances’ between the Terms of Reference membership and the actual membership were made clear – for example were organisations such as the National Forum and the National Valuing Families Forum not invited, or were they invited and refused to take part?

Update: Vicki Raphael of the National Valuing Families Forum (amongst many other things) has tweeted "...In interests of record straightening...not invited originally or aware of steering group place".

What is the Steering Group going to do?

And, most importantly perhaps, what is the status of the plan in relation to the work of the Steering Group? The terms of reference aren’t completely clear to me on this issue. Is the Steering Group there to work out how to put the plan into action, and/or using the plan as a starting point for the “delivery of a National Framework for commissioning that can be locally delivered in partnership…and create new pathways of care in the community to support PWLD/autism to live at or near home and not in hospital” (Terms of Reference, page 3).

From the evidence available in Bubb’s Blog and other publicly available descriptions of it up until now, many people have pointed out its limitations and its disconnection from other useful initiatives and sets of ideas, and indeed, all the available voluminous evidence built up over many years. These include (but are certainly not confined to, so many apologies to those who I haven’t mentioned here):

The four key proposals developed by people with learning disabilities with CHANGEpeople and Lumos, to be discussed at a summit on 3^rd September (available here http://changepeoplephilipa.files.wordpress.com/2014/08/summit-meeting-3rd-sept-2014.pdf )

The Winterbourne View Joint Improvement Programme, which has been meeting with commissioners all over England and will have learned a lot about how and why things are working or not in various places.

The Ideas Collective, which has produced a plan (available here http://www.theideascollective.org.uk/news/84-category/news-and-events/35-winterbourne-view-joint-improvement-programme-delivery-plan.html )and also offered some advice to Sir Stephen Bubb on available evidence http://www.theideascollective.org.uk/news/84-category/news-and-events/32-letter-to-sir-stephen-bubb.html

Proposals from the Housing & Support Alliance: available here https://www.housingandsupport.org.uk/site/hasa/templates/general.aspx?pageid=397&cc=gb

Proposals for an Access to Living Scheme from the Independent Living Strategy Group: available here   http://theindependentlivingdebate.wordpress.com/2014/07/09/making-the-right-to-live-independently-in-the-community-a-reality-a-new-way-forward/

Work on a change in the law with the working title of #LBBill http://rightsinreality.wordpress.com/2014/08/10/easier-read-what-lbbill-could-say-and-do/

I understand the pressure to do something quickly, given the history of the Winterbourne View programme. I do worry very much that the timescale of this Steering Group guarantees that it will have to be focused on working out the details of the Bubb plan (and what about that initial wasted six weeks, if there was such urgency?). This will not be based on what in my view is needed, which would include:

·         Putting people with learning disabilities at the heart of decision making, with family members and allies that people with learning disabilities choose.

·         Starting from what people with learning disabilities want to do with their lives and what people need to be supported in this, rather than tinkering with bits of service systems that are clearly not fit for purpose.

·         Understanding what hasn’t worked in the Winterbourne View Joint Improvement Programme (and places where good things have happened).

·         Understanding what the evidence tells us about what and is not likely to work.

·         Connecting and putting together funding streams across different bits of the system, and designing ways of funding people’s support that maximises people’s self-determination and minimises perverse incentives for services to simultaneously constrain and neglect people.

I also find it really saddening (which is I think one reason why I’m finding it hard to write this post) that so much positive energy being generated by people with learning disabilities, family members, allies and (dare I say it?) ‘professionals’ (including many good people in organisations such as NHS England) is being squandered by this plan and how the process has been conducted. Wouldn't it be great (for us all!) if I was writing positive posts about exciting new ideas rather than constant moaning...

In Part 2 I’ll have a look at the plan itself…