The disability rights agenda: too narrow, possibly lost, or both?

I fear we’re in danger of the disability rights agenda being too narrow, possibly lost, or even both.

I say this because of the following 8 impressions, which are by no means comprehensive:

  1. The emerging Green Paper from the Department of Health seems to be focused primarily on people with learning disabilities or autism [1]
  2. A related blogpost (which happens to be from my employer) calls for a progressive learning disability agenda across the sector and society that values “rights, independence, choice and inclusion for ALL people with learning disabilities” [my emphasis]
  3. Preserving the Independent Living Fund is presumed to be the same as preserving independent living, when I suspect in practice campaigning attempts will (if successful) preserve funding levels around individuals specifically related to care and support
  4. Welfare reforms and resulting campaigns have focused on specific issues like the Work Capability Assessment and who provides the assessment service, or the Bedroom Tax – both largely from a deficit-based, medical model perspective). There has been comparatively little focus on employment support for disabled people or what housing options are available
  5. There has been very little broad campaigning action beyond those interested in higher education on the proposed changes to the Disabled Students’ Allowance
  6. Lobbying and campaigning regarding the Children & Families Act has been largely confined to children’s charities and SEN-related organisations, and doesn’t seem to have reached the broader disabled people’s movement
  7. Disability hate crime appears to have dropped off the agenda
  8. Anything relating to “people with mental health problems” largely remains a separate consideration to issues regarding “disabled people”.

There are some brighter spots, of course: the Care Act (albeit “only” in the sphere of social care) and positive attempts to mobilise the “disability vote” are two.

But, whilst there are arguments which could be made for each of the things listed above being separately needed, to my mind there is no overarching framework within which all of them hang together. There is no agenda around which all people with a commitment to disability rights and equality for all disabled people can coalesce.

In this context, the apparent disappearance of the Office for Disability Issues, the most recent, relatively lacklustre attempt at any sort of disability policy agenda (Fulfilling Potential), and the loss of whatever momentum there was from the Paralympic Games, are all major causes for concern. Irrespective of how effective they were, they represented the last political, policy and institutional bases of the disability rights agenda.

What to do? Clearly, we need to wrestle back a disability rights agenda into the political sphere. There are at least two active suggestions as to how this can be done:

  1. Establish a Disability Rights Taskforce after the next general election
  2. We should consider disbanding the Department for Work & Pensions and shift to an approach that works on a themed basis that more specifically has responsibility for a wide-ranging disability rights agenda, e.g. a Department for Inclusion.


[1] – I haven’t included any reference to the LB Bill because I believe its intention is for it to apply to all disabled people, not just to people with learning disabilities.


“Personalisation is just a cover for cuts” – debunked

If there was a pound for every time someone has said that personalisation is just a cover for cuts in adult social care, then we could pay off the national debt.

For a moment, though, let’s assume that personalisation is just a cover for cuts. What would this actually involve? I think there are three things:

  1. Personalisation would have been introduced deliberately to achieve/deliver cuts to social care services
  2. Further, personalisation would have to have been introduced at the time the need for cuts was identified
  3. We wouldn’t see cuts in services that aren’t personalised or have the option of Personal Budgets.

Let’s look at each of these in reverse order.

No cuts elsewhere

Is it true to say that there haven’t been cuts in services that aren’t personalised?

Below is a table that captures social care expenditure over the last 9 years [1], including for different types of services – “personalised” (incorporating Direct Payments and homecare services) and “non-personalised” (Nursing care, residential care, supported/other accommodation, equipment and adaptations, meals, “other”) [2].

Figure 1 below charts gross levels of adult social care expenditure for all personalised and non-personalised services.

Gross ASC expenditure, 2000-1 to 2012-13

Figure 2 charts year-on-year changes in levels of adult social care expenditure for the same.

ASC expenditure year on year change, 2000-1 to 2012-13

What the table and figures 1 and 2 show that little distinguishes levels of spend or year-on-year changes for personalised and non-personalised services. Or, put another way, the data doesn’t show that personalised services are more likely to be cut that non-personalised services.


If personalisation was a cover for cuts, it would have to have been introduced at the time the need for cuts was identified.

It is agreed the financial crisis hit in 2007/08, though public sector spending increased from 2007/08 to 2009/10. Since the General Election in 2010 we know that public sector spending as a proportion of GDP has decreased, and that there have been real-terms cuts in local authority budgets.

UK public spending, 1940-2015

Personalisation would therefore need to have been introduced in at least 2008, and certainly by 2010, were it a mechanism for delivering cuts.

However, Putting People First – the key policy document that heralded the formal introduction of Personalisation – was published at the end of 2007. Before this, there had been the Individual Budgets pilots which ran from 2005 to 2007, as well as the Personal Health Budgets pilot that ran after, from 2009.

More pertinently, personalisation has a long history. Quite aside from campaigning efforts, Direct Payments legislation was first introduced in 1996 through the Community Care and Direct Payments Act 1996 and 2001’s Health and Social Care Act made it mandatory rather than discretionary to offer direct payments to those with an assessed need.  (See both the King’s Fund and SCIE’s excellent timelines of adult social care.)

What these timings therefore show is that personalisation, as enacted in legislation, pre-dates the financial crisis by at least 10 years, and that the introduction of the existing policy framework, Putting People First, pre-dates public sector spending cuts by 3 years.

A deliberate plan?

The final piece of ensuring personalisation is a cover for cuts would be for it to have been introduced deliberately to achieve/deliver cuts to social care services.

Anyone who has worked in government, in local government or in provider organisations – actually, anyone who has worked for any large-ish organisation at all – knows that the gap between what’s asked for and what’s delivered can be large. This is especially so if what’s asked for challenges existing behavior / culture.

In the case of personalisation we know the benefits of it haven’t flowed as far and as fast as people would like, mainly demonstrated by ongoing debates about how well it has been implemented and how true it is to any original vision.

Such a debate highlights to me there is simply not the level of command and control through the adult social care system – with its national policy from DH, distributed through 152 local authorities with their own local policies, decision makers and workforces, and 1000s of provider organisations supporting people on the ground – that can deliberately do anything very easily, quite aside from use personalisation as a means of achieving cuts.


I can understand why people think personalisation is just a cover for cuts in adult social care. This is especially the case for anyone who doesn’t have a more detailed, perhaps professional interest in the issue.

But, as demonstrated by this post, anything more than superficial thinking on the topic shows that saying personalisation is just a cover for cuts is wrong.

I close with the best observation I’ve seen on this topic:

Although the implementation of Self-Directed Support will be affected by funding cuts, personalisation brings challenges regardless of the financial context; cuts bring challenges regardless of the model of social care.

[1] – Gross social care expenditure, excluding Supporting People. Since SP couldn’t be personalised (see [2] below), these figures possibly favour non-personalised services

[2] – These are categorised according to what, in theory, can or can’t be personalised through a Personal Budget or Direct Payment.

Patient Opinion is your favourite band. Is NHS England the big record company? (Updated)

The Guardian this morning reports that NHS England will be setting up a “TripAdvisor”-style site to capture people’s feedback.

This has a number of implications in lots of different directions, but the one I wanted to briefly comment on is what this says about how markets arise in public services and are then distorted.

In social care, there were 44 care comparison sites at the last count. This “market response” presumably arose because there was a gap in the market: people weren’t getting the information they needed to make judgments about where is/isn’t a good care provider.

In the context of the NHS, and though not exactly equivalent to a comparison site, Patient Opinion has been doing a tremendous job over the last 7 years or so of enabling people to share their experiences of NHS services, aggregating that feedback and supporting NHS organisations to use this information to improve services.

Patient Opinion is a bit like* that really good band only you and a few people know about (a “few” being a relative term, here).

Patient Opinion needed to be created (and was done so very well indeed) because there was a gap in the market. It was an innovator at a time when no one else, including the NHS, was doing feedback particularly well.

Since today’s Guardian effectively says that NHS England is going to replicate Patient Opinion, it could be argued that Patient Opinion’s job is done. When the NHS adopts your idea, you’ve gone mainstream. It’s like EMI signing (or taking over) the band you love, and now all of your other friends and the general public will be listening to the band only you and your friends knew about.

But is this right? Is the presence of government here – in the form of the bizarrely-centralised-though-not-really-centralised NHS – a constructive or distorting market force?

I posed this question to myself when looking at social care comparison sites:

Is it appropriate to think that social care information / comparison sites should be centrally-led, guided more by a visible hand from government rather than by an invisible hand? Or is it ok for information about social care to be provided through the continued emergence of a demand-driven market, reflecting what we see in the film streaming and price comparison businesses around us?

@pubstrat has highlighted the same question using many other examples, such as MyPolice, fishing licenses and Patient Opinion itself, using the metaphor of government as elephant and others as small(er) creatures. He concludes:

I don’t, on the whole, think that government is obliged to leave the field completely clear for others where its own services and information are concerned. But I do think that the asymmetry of power and voice obliges it to take great care where it places its [elephant] feet.

In this case, my initial answer (with explanatory brackets for tortured simile purposes) is that there has to be joint work between NHS England (EMI) and Patient Opinion (your favourite band) to make the most of both unique characteristics they could bring to the question of feedback (your band’s music). NHS England brings scale, significant credibility and brand; Patient Opinion brings the platform, the independence and the learning/innovation of the last 7 years.

If both can work together, then the good music of feedback can be taken to the masses whilst maintaining its integrity. If not, we might end up with another Robbie Williams.

I really hope NHS England / EMI takes the opportunity to work with Patient Opinion.

*I generally don’t like argument by analogy, but make an exception here. Please don’t get too hung up on the band / record company thing.

Update (2 December): Paul Hodgkin of Patient Opinion has written an excellent post here on the topic, and @georgejulian has brought her characteristic “no bullshit” approach to the issue here. Both posts well worth reading.

GPs to arrange coordination of health and social care? Pfft. (Updated)

I’ve just read that under the new GP contracts for 2014/15, it is being suggested

GPs will oversee social care for vulnerable patients… Family doctors will “case manage proactively” patients with complex needs by developing and regularly reviewing personalised care plans that will cover health and social care needs.

As always, there are details to be worked out – not least of which is who actually does the care co-ordination. Nevertheless, let’s not allow details to stand in the way of some reflections:

  • The options of who does care co-ordination aren’t just within statutory services. There’s pretty good evidence (see, for example, this from the Office for Disability Issues on independent Support, Advocacy and Brokerage) that the best care co-ordination happens outside health and social care organisations in the public sector
  • This isn’t integration: this is health taking over social care. Goodness knows there are issues and problems in social care, but I’d suggest more learning about coordination and person-centred approaches can flow from social care to health than vice versa
  • If the Secretary of State really thinks this is about “fixing the long-term pressures on our A&E services, empowering hard-working doctors and improving care for those with the greatest need” then he’s (1) motivated by the wrong things at the wrong end of the system, (2) empowering the wrong people, and (3) putting last those people who should be put first.

This stuff is soggy trifle.

Update (22 November): Mithran over at Community Care does a nice summary of the findings of some research on GPs and social workers working together. The full research is here (pdf) – great study through those lovely folks at the School for Social Care Research.

#Coproduction = win (and Bill Shankly)

It was great to be at the launch of SCIE’s excellent new resources on coproduction today.  The resources are here and well worth a look through (including two great videos in Have I Got News For You style – 1, 2).

Here are 5 thoughts/reflections from the day and wider conversations on Twitter.

1. Quite a lot of people get hung up on the definition of coproduction. I find this takes up valuable time that could be used figuring out how coproduction can be a very effective means by which we change public services and the role real people play in this. It may be easier to agree on what coproduction isn’t (clue: two public sector professionals from different organisations meeting together isn’t coproduction)

2. The following question was posed by none other than Lord Michael Bichard (see point 3): What do we need to do to get those people/organisations who don’t get coproduction to see its value and use it? Of all the things that can be done, I think the best is to equip real people with (a) the drive/expectation that they can be part of the way in which public services are designed and delivered; and (b) the evidence that coproduction works with which to convince intransigent others. Creating this demand won’t be sufficient, but it is absolutely necessary.

3. Both SCIE’s Chair (Lord Michael Bichard) and Chief Executive (Tony Hunter – who hasn’t even officially started yet) were there today – a fine indication of both SCIE’s commitment to coproduction and the importance of coproduction more generally.

4. It was noted there wasn’t a session dedicated to coproduction at NCASC (notwithstanding the excellent way TLAP presented their work). There should have been.

5. Coproduction has come a long way, but we all have to work together to ensure it goes much, much further. There is great evidence and practice that coproduction works and is a means by which the immense challenges facing public services – not just in social care and health, but all services – can be collectively approached and solved (see, for example, the excellent Coproduction Practitioners Network for lots of case studies etc.).

As a final thought, I hope you won’t mind me paraphrasing Bill Shankly. Some people believe coproduction is a matter of life and death. I can assure you it’s much, much more important than that.

Payment by Results in mental health: introduction

By themselves, the topics of Payment by Results or mental health services are pretty complicated, but when you combine them the complexity more than doubles.

As a topic I’m interested in – both for work and personal reasons – I’ve brought together a series of blogposts intended to provide a brief introduction to Payment by Results in mental health.

These posts are by no means comprehensive, but hopefully provide a useful overview for anyone generally interested in this topic.

A bibliography / reading list of the documents used to inform this overview is included as a separate post, and will provide the interested reader with much more comprehensive and detailed information on the topic of Payment by Results in mental health.

The posts in this series are as follows:

Payment by Results and mental health: bibliography and reading

This post is one in a series on Payment by Results in mental health, written for both professional and personal reasons. The full series is introduced and linked to here.

Association of Directors of Adult Social Services (ADASS) (2009), Payment by Results for Mental Health as a driver for personalised services: Joint ADASS and DH position paper (available via here)

Association of Directors of Adult Social Services (ADASS) (2011), Position Paper: Recovery and Payment by Results in Mental Health (available via here)

Centre for Health Economics (CHE) (2009), Payment by Results in Mental Health: A Review of the International Literature and an Economic Assessment of the Approach in the English NHS (available here (pdf))

Department of Health (DH) (2010), Practical Guide to Preparing for Mental Health Payment by Results (available here (pdf))

Department of Health (DH) (2011a), A simple guide to Payment by Results (available here)

Department of Health (DH) (2011b), Payment by Results: Draft 2012-13 Mental Health Guidance (available here)

Department of Health (DH) (2012a), Draft Mental Health Payment by Results Guidance for 2013-14 (available here)

Department of Health (DH) (2012b), Mental Health Clustering Booklet v3.0 2013/14 (available here (pdf))

Department of Health (DH) (2013), Key steps for successful implementation of Mental Health Payment by Results (available here (pdf))

King’s Fund (2012), Payment by Results: How can payment systems help to deliver better care? (available here)

Mental Health Network, NHS Confederation (MHN) (2011a), Payment by Results in mental health: a challenging journey worth taking (available here (pdf))

Mental Health Network, NHS Confederation (MHN) (2011b), Mental Health Payment by Results Readiness Review (available here)

National Development Team for Inclusion (NDTi) (2012), Getting it together for mental health care: Payment by Results, personalisation and whole system working (available here)

Royal College of Psychiatrists (RCP) (2012), Payment by results for mental health (England): Position statement PS02/2012 (available here (pdf))

Sitra (2013), Report: Payment by Results (available here)

Payment by Results in mental health and personalisation

This post is one in a series on Payment by Results in mental health, written for both professional and personal reasons. The full series is introduced and linked to here, including a post with all references in it.

In theory, PbR should support personalisation and the introduction of personal health budgets. Early on in the process of introducing Payment by Results, some of those responsible for its implementation were positive that the clustering process gave them new information about the people they were treating, leading to a better understanding of where quality and outcome improvements could be made. Similarly, the currency model is focused on paying for individuals, not individual services, and so means that delivery may be provided by different organisations, such as those in the voluntary and independent sector, rather than “just” NHS providers (DH, 2013:18).

In the early days of PbR in mental health, it was noted that implementation needed to support the adoption of best practice in the delivery of outcomes, as set out in No Health Without Mental Health. Similarly, ADASS amongst others noted that PbR in mental health needed to take a whole-systems approach to mental health needs, or otherwise risk “unwittingly undermine some of the innovative partnerships, services and associated health and social care outcomes for people” (ADASS, 2009).

The potential was clear:

“The Care Pathways and Packages approach that is being used for mental health Payment by results has the potential for embedding personalisation into mental health services. By focussing on individual needs it potentially lends itself to commissioning for outcomes and this will be developed further. The “results” should ultimately be more personalised services and improved outcomes.” (ADASS, 2009)

However, people have felt unclear how PbR fits with personalisation and some concerns about PbR have been expressed about whether or not it will be a systems change that will in practice lead to real improvements, choice and control for people (King’s Fund, 2009).

These worries have included whether PbR may perpetuate a medical model of mental health rather than taking into account a range of social care outcomes. Similarly, by taking a deficit approach to mental health – through, for example, using HoNOS measures – the tools of PbR may not be geared towards promoting recovery-based approaches and increasing social inclusion (ADASS, 2011). The language currently used in the PbR Clusters and the allocation tool tends to focus on symptoms and problems” (NDTi, 2012:13). This is a concern echoed by the Royal College of Psychiatrist:

“The College recognises that social, economic and cultural influences will have a large impact on outcomes… Likewise, the College’s determination to support recovery principles and service user empowerment emphasises a focus on patients’ strengths and skills which are currently absent from the care clusters.” (RCP, 2012)

There is a concern that the Care Pathways and Packages approach reflected in the PbR currencies focuses on intervention and treatment (ADASS, 2009) and so potentially misses the opportunity for PbR to be an:

“added ingredient to make it possible to achieve a culture that embraces personalisation, recovery and a whole systems approach, with person-centred integrated planning, easily accessible personal budgets for health and social care, whole system creative commissioning in partnership with people and communities and recognising the contribution they make, and a personalised PbR system that will reward recovery and inclusion as well as activity and efficiency.” (RCP, 2012)

Currently, PbR is felt to be more about contracting, rather than commissioning mental health services (MHN, 2011b:15). For it to be successful it needs to evolve from “being an essentially ‘payment by activity’ model, to becoming a true ‘payment by results’ approach” (RCP, 2012:8).

Clearly, PbR in mental health is still a work in progress, and its impact on personalisation will be more apparent as PbR, and the framework to measure outcomes, begins to be further developed and implemented (ADASS, 2011).

As NDTi notes in its paper on PbR in mental health and personalisation:

“As with any development in public services, raising key questions in the development stage may avoid the danger of disappearing down a rabbit hole of systems development without coming up to see that on the surface nothing much has changed, and the burrowers have lost sight of important values and principles.” (NDTi, 2012:15)

As such, it is important to check the extent of understanding of those developing and delivering PbR in mental health care about personalisation in practice, and the culture, attitude and systems changes that it brings, and not leave this to chance (NDTi, 2012:13).

Practicalities of introducing PbR in mental health – Transition protocols, National / local tariff, Data quality, Link to social care

This post is one in a series on Payment by Results in mental health, written for both professional and personal reasons. The full series is introduced and linked to here, including a post with all references in it.

Transition protocols

One considerable concern regarding PbR in mental health is the possibility that a person may, during reassessment using the Mental Health Clustering Tool, have a lower recorded score because they are receiving effective treatment, but that if this treatment is stopped – by being discharged or allocation to a lower cluster – their needs may grow.

To specifically address this possibility, the Mental Health Clustering Booklet includes what are known as “Draft Care Transition Protocols”. These should be considered by the relevant clinician(s) before the final result of the MHCT score is recorded (DH, 2011b:6).

National / local tariff

In PbR in acute care there is a set national tariff, with a Market Forces Factor (MFF) index applied to reflect local variations.

A national tariff for PbR in mental health, however, does not exist. The commitment in Equity and Excellence: Liberating the NHS is for there to be clusters as the currency but with local prices, and that tariffs will be agreed locally between commissioners and providers.

Nevertheless, and though reaffirming the fact that a national tariff is not being introduced for PbR in mental health, some indicative cluster costs were published by DH (DH, 2012a:7), which are based on costs derived from 2011/12 data.

The future decision as to whether there will be a national tariff will fall to Monitor and NHS England (DH, 2012a:7). In preparation for this, Monitor is looking to base tariffs on costs submitted by organisations using the PLICS3 system and drawing on the Healthcare Financial Management Association’s mental health clinical costing standards (DH, 2012a:6).

Within clusters, the payment for each care cluster is generally an average payemtn. However, since variation of costs within clusters is not understood in great detail, there are likely to be requirements for top-up payments or alternative funding arrangements in addition to any average cluster payment (DH, 2011b:13).

Data quality

Very closely related to the question of determining a tariff (be it local or national) is the issue of data and its quality to inform developments and decisions. Any payment system needs to be underpinned by high-quality data and analysis, and risks a lack of compliance and/or unintended consequences if this isn’t in place (King’s Fund, 2012:vi).

There are concerns with data within the current system of PbR in mental health. Issues include:

  • Completion rates for collecting HoNOS scores are low, even though they should be collected as part of the mental health minimum data set (MHMDS)
  • Inconsistency in whether users are correctly allocated to clusters
  • Inconsistency in the use of care transition protocols
  • IT systems may not be well-enough developed to support the recording of assessment scores and cluster allocations (DH, 2010:14).

This picture is likely to become more complicated, since some quality metrics are being mandated in 2013/14, including:

  • Cluster caseloads (%age clustered)
  • Cluster caseloads (Client Numbers)
  • Adherence to cluster reviews periods
  • Adherence to Care Transition Protocols” (DH, 2013:17).

There is also a growing expectation that patient experience measures, such as PROMS, will feature in PbR data and its use (DH, 2013:17).

To address questions of data and its robustness, a significant project has been commissioned from Capita by the Audit Commission to explore the issue (DH, 2012a:6).

Link of Payment by Results in mental health to social care

It was noted early in the development of PbR in mental health that “the costs of social care and other provision should be identified and factored into the PbR work.” (ADASS, 2009:3).

The Department of Health moved in this direction: the costs of social care staff directly employed by a mental health provider or under formal Section 75 arrangements should be included in cluster costs (DH, 2011b:13). However, the same guidance noted that “non-NHS costs should [be] deducted to arrive at the cluster care price” and that “[t]he funding of interactions with social care will be subject to further national work” (DH, 2011b:13).

Though the scale of such a piece of work isn’t underestimated (see, for example, King’s Fund, 2012:40), there is confusion amongst health commissioners and providers about how to deal with social care in mental health PbR (MHN, 2011a:3).

Practicalities of introducing PbR in mental health – Defined interventions and packages of care for each cluster

This post is one in a series on Payment by Results in mental health, written for both professional and personal reasons. The full series is introduced and linked to here, including a post with all references in it.

As highlighted in the reasons why it may be harder to adopt PbR in mental health than in acute care, there is less clinical consensus on optimal care pathways, as well as there being considerable variation in what mental health services are available in any given area (CHE, 2009:1).

Nevertheless, some localities are taking the approach of defining interventions and packages of care for each cluster. Though initially mixed progress was made on this initially – by 2011 a third of trusts had made considerable progress and half had not started (MHN, 2011b:6).

Similarly, one specialist mental health trust has developed standardised care packages for each cluster. Each package:

  • Describes what activities are needed to meet identified needs
  • Has a core element, which all users in the cluster will receive
  • Has essential elements, which only some users in the cluster will receive
  • Has variance elements, that are occasionally required  (CHE, 2009:4).

The IMHSEC project / resource also takes a similar approach –

The care packages are designed to inform, but not supersede, clinical decisions (CHE, 2009:4); they are based on both clinical guidelines and NICE guidance. The Department of Health is more generally clear that clusters themselves shouldn’t define appropriate interventions and treatments, and draws attention to the fact most interventions are well defined by NICE / SCIE professional guidelines and associated standards and outcomes (including those of CQC) (DH, 2011b:6; DH, 2013:5). RCP is also clear on this point:

“Evidence-based interventions care packages and pathways must be based on the most effective treatments and these should be delivered in a way that offers the best value. This means supporting integrated care between primary, social and mental health specialist care and providing care that conforms to evidence-based professional standards and National Institute for Health and Clinical Excellence/Social Care Institute for Excellence guidelines.” (RCP, 2012:6)

The Department of Health is also clear that what care options are available to people are developed locally (DH, 2010:7).