LINks annual reports 2009/10

The annual reports of Local Involvement Networks (LINks) for 2009/10 makes for interesting reading. This is particularly in light of the fact LINks will become local HealthWatches under the proposed reforms of the government’s White Paper, and will be the major vehicle through which patient/user representation will be secured.

LINks are membership organisations which empower people in the community to have their say or influence local health and social care services. In 2009/10 there were 150 of them, with a total spend of £24.3m.

The numbers in terms of people engaged aren’t, I’ll be honest, particularly good. Even then, the data collected probably represents a slightly rosy view: as the report highlights:

Many LINks were not able to provide details of their finances, membership, activities or their effects.

It doesn’t inspire confidence, does it? Even so, we will plough on with what the annual reports tell us.

Across all LINks, the average number of members (both individuals and organisations) was 489. In total, around 192,000 people were engaged in their activities (of which 42% related to social care). Given the population of Essex alone, for example, is 1.4m, this doesn’t strike me as a great number. Nor does the number of LINks that report engagement directly with people from a BME background or disabled people: less than 60 and just over 50 respectively.

If the engagement numbers don’t grab you, then potentially of more interest is the headline finding that LINks provided a net return on investment of £4.10 for every £1 invested.

I’m afraid to say the data behind this is optimistic at best. On the basis of the average benefit for 4 – just four – case studies being of the order of £270k, someone has simply multiplied this benefit by the number of changes that were “inspired” in services by LINks in 2009/10 – some 463. This gets you to a figure of £126m gross annual benefit.

Whilst the veracity of the 4 case studies seems reasonable, it’s a leap of faith to suggest the same financial benefit applies on average across each of the service interventions LINks achieved, wouldn’t you say?

My overall impression of the report is that there are undoubtedly some LINks making a positive difference through engaging their local communities in issues relating to health and social care services. However, the level of this engagement isn’t particularly deep, isn’t particularly innovative and is really quite limited. Nor can the level of financial benefit accrued from changes made by LINks be considered realistic.

At best, the report reads as if the most optimistic of civil servants has written it, looking for good as a whole where it only exists in patches.

Given this forms the foundation for patient and user enagement under the new health reforms, I draw the following implications for HealthWatch:

  • Engagement is actually very low. LINks may have improved from 2008/09 to 2009/10, but the base was incredibly low in the first place. In particular, disabled people and people from a BME background were evidenced to be poorly engaged in LINks as a whole. HW will have to do much better than this.
  • The report indicates that the money allocated by DH for LINks was not ringfenced within LAs: £27m was allocated by DH to LAs, £24.3m was allocated by LAs to LINks. Will the DH require money allocated for HW to be spent only on HW?
  • The performance of LINks was patchy, but no enforcement mechanism seems to have been in place to address this. How will this be dealt with under HW?
  • Data collection for LINks was quite poor. Given it underpins so much of the work HW do, will there be standards and requirements that are enforced in order to understand the work HW do?
  • The annual report seems very keen to attribute financial benefits to the work of LINks in order to justify their works. Will a cost-benfit outcome be a key driver of HW, or is their value recognised as being one of engaging local communities in decision making on health and social care?

Reflecting on HealthWatch in the Health White Paper melee (updated)

Whilst the pandemonium about various changes proposed by the Health White Paper continue (rightly so, by the way), the issue of patient and user voice remains as high up the agenda as it usually does.

That is, not at all.

I’ve focused on this area in two previous posts – one on patient voice in the White Paper and another on the question of democratic accountability.

I have to confess I’ve not had chance to read the government’s response to the White Paper consultation (“Next Steps“) and what it says or updates about HealthWatch (HW). As far as I can tell, it’s strengthened issues around advocacy (particularly by saying advocacy services can still be contracted for directly by LAs, rather than sitting within HWs), strengthened HW representation on Public Health and Wellbeing Boards, and generally reduced the need for overview and scrutiny.

Of course, I’ll blog on what Next Steps actually says about HW when I’ve read it.

But in the meantime, today saw an event in the area I work on the establishment of a local HW. Here are some quick and dirty observations of the day:

  • The level of understanding of what the Health White Paper is seeking to achieve is low
  • The level of understanding of what HW England and the local HW will do is low
  • The level of understanding of the relationship between HW England and the local HW is low
  • There is a significant divorce between health and social care in the views of service user “representatives”
  • “Entrenched interests” doesn’t come anywhere near explaining the problems facing commissioners of local HW over the next few months
  • If today was anything to go by, the profile of people directly engaged as “representatives” and volunteers in LINks at the moment can be summed up in two words: (1) old; and (2) white
  • Partnership working between organisations who are or will be relevant to the local HW feels a long way off
  • For areas where there are unitary and county councils close together, the question of whether there is a joint Health and Wellbeing Board across all of them or a separate one for each is a very, very thorny one
  • This said, the question of whether there is one local HW per council or a local HW operating across several is a bit easier – it’s only a very thorny question and not a very, very thorny one
  • No one knows what money will be available to commission the local HW, or whether it will be ring-fenced. I’m guessing not, since it will sit in LA budgets. (As a comparison, in 2009/10, the DH awarded £24.3m across all 150 LINks.)

This may all sound like doom and gloom, and at least in that regard it’s similar to most other proposals in the Health White Paper.

But it’s not.

All the government needs to do is create some clarity soon on the topic of HW England and local HW in order to allow commissioners to demonstrate the local leadership they are hugely capable of.

Next week’s Health and Social Care Bill may give us this, so amid the tumult of discussion about the big ticket items, remember to keep an eye out for what the Bill says on HealthWatch.

Update: Of course, I forgot to mention whether social media was mentioned as a means of engagement for HW. Apart from the most cursory of mentions – a gesture towards Facebook – it wasn’t. A few of the kool kids at the back of the room whispered about it away from the more vocal participants in the day, but it was a useful reminder of how little wider awareness social media there is amongst parts of the population and as part of the debate/solution to engagement.

It would be great to have the opportunity to change that.

More positively, there seems to be some excellent LINks work at the moment on Twitter – see this list from LINk East Sussex and this nicely chirpy stream from Somerset LINk.

Andrew Lansley’s losing gamble

I’ve just caught up with this excellent editorial from the Observer on the government’s NHS gamble:

David Cameron learned in opposition that voters are not easily persuaded to trust the Conservative party with the NHS. So he came into government with two pledges aimed at allaying suspicion: spending on healthcare would be protected and there would be no scary meddling with the service. He is in danger of failing on both counts.

The interesting part is the personal nature of the editorial concerning Andrew Lansley:

[T]he personal ambitions of the health secretary are also key. Mr Lansley is a senior figure in the party and was once Mr Cameron’s boss at Tory HQ. He held his current portfolio for six years in opposition, time to develop a grand project that would be his political legacy. Noting that cabinet colleagues are implementing ambitious plans for education, welfare and justice, Mr Lansley is determined to do the same at the Department of Health. But his vision evolved under different economic circumstances, when no one envisaged the austerity now being inflicted on public services. The NHS, more than any institution, needs cautious navigation through the new fiscal landscape. Mr Lansley’s refusal to moderate his plans accordingly suggests stubbornness and pride are trumping political judgment.

Back in July we noted that Lansley had the “winning combination” of

arrogance, ignorance and power.

Of course, we were being flippant. What we joked was Lansley’s winning combination has turned out to be Lansley’s losing gamble.

It’s just a shame that the NHS and its patients will pay for his bet.

Paul Corrigan on the weakness from strength of Lansley’s plans*

Following the Health White Paper in July, Paul Corrigan wrote a fantastic series of posts analysing Andrew Lansley’s proposals. It wouldn’t be an exaggeration to say that it was the best thing out there on the White Paper – so good that I collected them into a handy series of posts.

Well, he’s at it again.

This time, Paul has looked beyond the current and apparent position of strength Lansley finds himself in (as a man with a plan) and identified four potential issues that can make current strengths into weaknesses.

Each of these four themes is linked to below, with a choice quote taken from each. Even if you have a passing interest in health, social care or the political process for major reform, I urge you to read them all.

1. Are the NHS reforms owned by the Government as a whole and how strong is Andrew Lansley’s position as the main exponent of that reform?:

So the political strength behind the NHS reforms is that the Cabinet and the Prime Minister support Andrew Lansley. The political weakness is that no one apart from him, including the Prime Minister, ‘gets it’.

2. Where will the politics of NHS reform in October 2010 stir up some enthusiasm?:

I may be wrong but I get the impression that the current Secretary of State doesn’t think this is his job. I think he genuinely believes that since he is removing ‘NHS bosses’ from the NHS, then enthusiasm will simply “spring forth” of its own accord. This may also be how they think of the Big Society – that all this energy has just been suppressed and therefore it is somehow wrong for members of the Cabinet to go around stirring it up.      
Waiting for others to do this will not work.

3. The politics of NHS reform in October 2010 – Will the Change Process Work?:

The current Secretary of State did not come down from his revolutionary pre-election base in the mountains with thousands of Conservatistas who could run the NHS in the new revolutionary way. He has no-one. He may believe that there are groups of bandoliered GPs ready to take on PCTs and fight for GP Consortia (All power to the GP commissioning consortia!) But the few there are, are not enough. The people who will make change happen are the people who are going to be sacked and have always rather liked the old system.

4. NHS resources between now and the proposed abolition of PCTs in April 2013 – Will the sums add up or will there be deficits?:

This means that for the next three years there will be two conflicting systems for the distribution of finance at work in the NHS. One that believes the finance should be controlled by a hierarchy which goes from the DH down to the SHA to the PCT, the other that believes it is the job of the PCT to look out for its local population and buy the best health and health care they can find.

(*Long post title in honour of Paul’s own length blogpost titles!)

Paul Corrigan on the Health White Paper

Paul Corrigan – who, amongst many roles, is best-known for being Tony Blair’s senior health policy adviser – has written on his blog an exceptional series on the coalition government’s Health White Paper. Here in full are links to the whole series so far. If you have an interest in health and social care these links really are like gold.

(via Patrick Butler)

#healthwhitepaper posts summary

For ease of reference, below are links to the series of posts published here on the subject of the Health White Paper, the focus of which on this site has been patient voice and equity.

Any other posts relating or referring to the Health White Paper will be tagged as such.

Democratic accountability in the Health White Paper

The Department of Health has published a number of accompanying documents to the Health White Paper that was itself published last week. Having written a detailed analysis of patient voice in the Health White Paper, I was thus particularly interested in the “Local democratic legitimacy in health” follow-up paper.

Though the paper addresses nowhere near all of the questions I outlined in my previous post, there is some good stuff in this accompanying paper on the role of local HealthWatch (HW) organisations (paragraphs 14-19).

In particular, it should be noted that additional funding will follow additional functions being added to local HW responsibilities (para 16), which themselves build on the Local Involvement Networks (LINks) that already exist.

These additional functions will be as follows: 1) an NHS complaints advocacy service, and 2) supporting individuals to exercise choice (essentially advocacy in its traditional sense). These are laudable functions which should make choice more available to everyone. I still have concerns over the ugly bunfight that will take place as existing and substantial advocacy organisations bid (through tender processes run by the local authority) for the right to become local HWs, but that’s something that the voluntary sector has become more used to over the few years.

A further welcome clarification is that one local HW representative will sit on the proposed statutory Health & Wellbeing Boards, representing patient voice and both influencing and contributing to the local decision-making process (para 40). This is supported by local authorities being responsible for supporting “local voice and the exercise of patient choice” (para 10) and should be welcomed.

The paper is strangely silent on what HealthWatch England will be, how it’s arranged, what it will do etc. I suspect this is because the government thinks this will be straightforward; I don’t think it will be, for reasons outlined in my previous post.

As ever, some confusion remains. This confusion is contained within two topic areas: 1) why the NHS and health encroaches so much on social care, and 2) the non-top down, top down approach.

Let’s take (1) first. For a document that has “Liberating the NHS” and “legitimacy in health” in its title, this accompanying paper sure does make considerable claims on social care. The key to understanding this better is to understand the differences between health, public health and (social) care and how they relate to and overlap with each other. I hope the planned White Papers on public health and social care will be clear on this.

The non-top down, top down approach is far more interesting.

In paragraph 28, the White Paper is keen to say that requirements for Health & Wellbeing boards will be “minimal” and that Local Authorities will enjoy “freedom and flexibility” as to how such a board would work.

But in paragraph 25 the government specifies that its preferred approach for proposed joint working on health and wellbeing is to establish a statutory board for such work. Indeed:

  • Paragraphs 29 to 33 specify the four functions of such boards
  • Paragraphs 34 to 37 specify how the boards will operate
  • Paragraphs 38 to 41 specify who will be members of the boards, including a statutory obligation for commissioners and local authority staff to attend
  • Paragraphs 42 to 50 note that the government wants the statutory functions of existing Overview and Scrutiny Committees will transfer to the proposed boards.

In truth, I don’t have any particular issue with specifying in statute the role and requirements of Health and Wellbeing Boards, especially if they are to receive presumably extra funding, transferred from the to-be-defunct PCTs, in the form of ringfenced health improvement budgets.

But it’s whimsical to pretend that this doesn’t represent a top-down approach from the centre.

It’s also whimsical to suggest this approach will remove “ongoing political interference from the health service” (paragraph 6). If there’s one thing involving elected Councillors at a local level will do, it’s introduce political interference into the health service.

This additional paper is useful and gives some encouraging detail on local HealthWatch arrangements, which were missing in the White Paper itself. But there remain significant questions around HealthWatch at a national level and the tensions of the White Paper between patient-led and GP-led reforms do not feel to be sufficiently addressed by the introduction of statutory health and wellbeing boards under the control of Local Authorities. And the ongoing confusion as to how health, public health and social care relate to each other quickly needs to be addressed by the imminent White Papers so as to appropriately reflect and recognise the distinct difference in what each of those policy areas requires as policy solutions.

The BMA and the #healthwhitepaper

Following a whole series of post on the #healathwhitepaper (see “other posts” below), it’s interesting to note that the powerful BMA is doing its best to ignore the proposals contained in the White Paper and focused instead on GP contracts:

We hope there will be few changes to the GP contract as this is a UK contract and commissioning is an England policy. We know that the government wishes to make a few, very significant, changes, but we will be trying to minimise these.

Doesn’t fill me with confidence if the representative body of professionals in whom virtually everything is being entrusted don’t seem that keen.

Where’s all the “Equity” when the NHS has been “Liberated”?

This is a guest post by Christine Burns MBE, an Equality and Diversity consultant currently embedded in the NHS war zone.

Since Andrew Lansley’s NHS White Paper was published last week, most of the public commentary has inevitably centred on the alleged savings to be achieved and the open door which the plans will create for privatisation.

The White Paper, “Equity and Excellence: Liberating the NHS”, proposes to remove two tiers of regional and local governance from the structure of the health service and to pay the lion’s share of the NHS budget direct to GPs, organised into consortia to commission services from a wider market of providers.

Do the changes make sense?

Already there is a hot debate about whether GPs are willing or able to handle such a massive managerial responsibility. GPs themselves seem divided. It’s widely expected that the new consortia will contract functions like commissioning and purchasing out to private sector companies, for whom a bonanza is predicted.

I’ll not try and add much to that side of the debate, as it is being covered so well by others. It’s important to establish two points though.

Firstly, although many don’t realise it, the NHS is already part-privatised.

Every one of 34,000 GPs in the land is a private contractor. They’re the people whom the coalition propose to hand £70bn a year of our taxes to spend. Foundation Trusts (who run most of our hospitals and specialist services) are presently allowed to do a small percentage of private work; the new Government proposes to open that up and allow a flood of new private sector providers into the market.

Second, the argument that the NHS has too much managerial overhead just doesn’t stack up.

The NHS is the world’s second largest employer. It employs 1.4 million staff. It spends almost all of the annual £110bn health budget on the treatments we receive, with a relatively tiny chunk on public health promotion and disease prevention. Less than 2% of the total actually goes into management.

The best estimate for savings from shedding 45% of NHS management is £1bn. This to produce a system which is, by definition, less managed.

In reality the saving from all those redundancies is likely to be closer to £250m. Yet the NHS Chief Executive, Sir David Nicholson, is reported to be setting aside £1.5bn to cover the cost of dismantling the existing system of 10 SHAs and 152 PCTs (where all that management currently occurs) and to replace it with an estimated 500 GP consortia.

All those consortia will require significant numbers of managers – whether directly employed, or on the staff of private companies contracted to manage a massively complex system for them.

That’s madness.

Diversity is not a minority affair

Lots of people are commenting on those aspects of the biggest revolution in the NHS’s 62 year history. What nobody is talking about is whether the new system will produce better outcomes for all those groups in society who presently get a less than fair deal from the NHS.

Before you switch off and think I’m talking about minorities that don’t concern you, however, think again. Let’s do the numbers.

An average of 7% of the population in England has a Black or Minority Ethnic (BME) background (over 30% in some cities). 20% have some form of disability that would be covered by the Disability Discrimination Act. At least 6% of the population is Lesbian, Gay, Bisexual or Trans. Within the decade almost half of the population will be over 50 years of age.

In fact, the North West Development Agency calculated a while ago that only 20% of people now match the old-fashioned stereotype of the working age population: white, male, non-disabled, straight and aged between 18 and 45.

Count the equivalent 20% of women and it’s immediately apparent that around 60% of the population don’t fall into that white, middle class vision of the population which the NHS was designed for in 1948.

Does that matter? Well, yes it does, because the evidence is that the NHS is serving many of that 60% of the population very poorly. And, if a better understanding of what goes wrong were applied in the existing system we could save a heap of money.

Understanding diversity produces better outcomes, saves money

Take prevention. The evidence is overwhelming. Here are a few examples.

A disproportionate number of BME men find themselves sectioned into mental health services. Why? Well, it’s not because they’re more susceptible to mental illness. In fact, if you don’t know why then I advise finding out.

What’s the point of having Mental Health services that don’t know how to prevent admissions for a massive chunk of the population?

Most GPs don’t know enough about sexual orientation to understand that lesbian women are susceptible to cervical cancer like their heterosexual counterparts. They don’t understand that, among the 20% of older women who don’t undertake breast screening, lesbians are significantly over-represented. The result in both cases is cancers being detected far later than they could be.

Massive expenditure on trying to treat less treatable tumours. Lower success rates. All avoidable.

What about something that may be closer to home for some: what’s the point in screening women for chlamydia if you don’t screen the men who have an equal part in spreading it? Yet many public health professionals will bleat that they don’t know how to reach those men, because they seldom go to see their GPs.

Failure to understand the different ways in which women and men relate to health services is endemic. That alone suggests that 50% of public health ineffectively is ineffectively spent.

I could go on listing such examples, but it would get boring. Besides, any competent Equality and Diversity practitioner should be able to reel them off, point to the documentary evidence and tell you about the innovative solutions that will work.

Directors of public health, commissioners and finance managers are too busy to ask though.

Issues that transcend the ways the NHS is organised

You’re going to point out that this is all going on in the present NHS. And you’re right. The existing system often performs quite badly in terms of identifying the need for smart interventions and delivering successful (cost and life saving) outcomes.

But before I discuss whether the new NHS structure would be any better, it’s important to understand why the NHS (and practically every other public service) fails in this way.

The problem is not to do with any lack of policies, processes or inputs. In fact there are lots of those.

The Public Sector Equality Duties have encouraged lots of consultation and planning on equality over the last eight years. Organisations have been able to satisfy those public duties by producing nicely printed Equality Schemes, ticking the “compliance” box and putting them on the shelf.

What hardly anyone has done has been to measure the actual outcome performance of NHS organisations. Scratch the surface to look for evidence of reducing inequalities and the results are plain as day.

Whilst E&D practitioners undoubtedly work very hard, they are often unable to present evidence of their organisations actually achieving anything in terms of identifying and reducing adverse effects of a ‘one size fits all’ approach.

It’s not the structure that matters

Yet at least the existing NHS system has all the tools and levers to tackle the problem. The present NHS is built for accountability and governance.

In the present NHS, the Department of Health oversees Strategic Health Authorities as regional outposts to determine policy and manage performance. It’s just that nobody has used that line of accountability (from the centre to the regions) to performance measure and manage equality outcomes, and to make sure they achieve them.

The ten Strategic Health Authorities can likewise set performance measures for Primary Care Trusts and hold them to account on the results. It’s just that they’ve not been doing this till now.

The Primary Care Trusts, which were split into commissioning and provider bodies, manage their own local health economies, but have not been effectively managing E&D outcomes in outcome terms.

A methodology called World Class Commissioning was launched a couple of years ago to improve the effectiveness of commissioning managers in other respects. This included language about using evidence of needs and understanding one’s local population.

The Department of Health mysteriously failed to make the connection between these words and the idea of diversity competence.

This means that commissioning has not been used as effectively as it could to mould the design of services around a sophisticated understanding of needs and circumstances. Likewise contracts with providers have not been used all that effectively to drive up equality outcomes.

What’s not measured doesn’t get done

In the absence of equality performance management, few PCTs have thought to manage provider services in this way. The current picture is therefore not very good. But that isn’t the fault of the NHS structure. The fault lies in the failure to have utilised the lines of accountability in that structure effectively. E&D professionals undoubtedly work very hard in our PCTs and providers. Without performance management, however, there’s not been the strategic focus.

So will the new NHS structure fix all that? Well, sadly no it won’t. In fact it could make it worse.

The new structure, whilst it does have some forms of scrutiny around the edges, provides precious little where it matters: holding GPs to account. After all, Andrew Lansley listened to the GPs. The GPs (understandably) told him they didn’t like being managed. So the Government is not only removing the management but giving GPs the ultimate power of holding the purse strings.

Ask anyone from any equality target group and they will regale you with examples illustrating that Britain’s 34,000 GPs have a very poor record in terms of their attitude towards diversity. Most GPs live a life of privilege, with large salaries and a place in the community which sets them apart clearly as “Us” rather than “Them”.

Andrew Lansley claims that his new proposals will empower communities to scrutinise their local NHS. But when he talks about communities he really means people who also have privilege. The people who typically turn out to consultation meetings and can have their voice heard.

And the scrutiny on offer appears to be at second hand. The existing SHAs and PCTs all have statutory responsibilities to consult with the public they serve before they make changes. The Public Sector Equality Duties ensure that includes people from all the equality target groups. Yet, when questioned recently, a policy manager from the Equality and Human Rights Commission was uncertain whether GP Consortia would come under the ambit of the Public Sector Duties.

Lansley has not defined yet whether and how GP Consortia will be expected to consult and involve, aside from the broad sweeping statements contained in the White Paper.

Members of the equality target groups, many of whom don’t have the resources to take part in consultation with 152 PCTs and hundreds more providers, are hardly likely to have the capacity to hold 500+ GP consortia to account. And, whereas NHS Provider Trusts currently fall under the Public Sector Equality Duties, the expected rush of private sector providers won’t do.

This means that, even where accountability to equality groups is theoretically there on paper, many communities will simply lack the capacity to advocate for themselves.

A bleak future

The future is therefore bleak. I can forsee an NHS branded health system which will increasingly focus on what’s easy and what GPs visualise as “deserving”.

Some of the details of how any scrutiny will work have not been set out in detail yet. However, when those details are consulted upon (if this Government still understands that concept) it is vital for men and women, those from all races and ethnic backgrounds, disabled people, young and old, lesbians, gay, bisexual and trans people to all look very carefully at the small print.

Ask yourself how will my local GP consortium take account of my needs and experiences when commissioning services that will affect me? Will anyone expert from my community be able to advocate on my behalf?

Ask yourself how will GPs in those consortia be trained to go beyond thinking of equality and diversity principles as ‘Political Correctness’ and see such understanding as part of their job.

Ask yourself how well can Local Authorities advocate on my behalf when they scrutinise services. Are they equipped to understand the vital nature of diversity in designing and delivering services that work for everyone.

Ask yourself whether the Care Quality Commission, charged with overseeing provider services, will have the capacity and the means to see that adverse outcomes are identified and dealt with.

Ask yourself whether the Equality and Human Rights Commission, though outside of the new NHS system, will have the capacity and capability to investigate organisations where discrimination occurs.

Ask yourself whether the GP consortia will have the capacity and capability to manage the provider sector through their contracts, especially the private sector providers who will otherwise be outside of public sector duty responsibilities.

And, finally, ask yourself how any of those areas of scrutiny can be performed effectively by anyone if there is no consistent and objective means for measuring the outcomes that matter in each organisation.

Remember, the existing NHS has splendid lines of accountability and governance but has not performed well on equality because there was no performance management framework.

The new system will be much harder to hold accountable. Therefore the need for an objective performance management system measuring real outcomes is all the more vital.

Patient voice in the Health White Paper

This post also appeared on Stable and Principled

The launch of the coalition government’s Health White Paper has made for interesting reading this week. Probably the best reaction to the proposals came from Health Policy Insight:

The document’s flaws are in two main areas: those of Emmentalesque holes; and of biscuit contraception (the bits that are fucking crackers).

For reactions and criticisms that capture the key issues of the plan, I would certainly recommend Civitas’s analysis and the series of posts that Paul Corrigan is writing.

In this post, I’ll cover one element of the White Paper that I haven’t seen much coverage of elsewhere: patient voice.

As there are gaping holes and tensions in the proposed reorganisation to enable GP consortia commissioning, so there are for patient voice within the new set up.

The key tension throughout the White Paper is who is in charge of decisions about care: the patient or the health professional? In their introduction, Cameron, Clegg and Lansley say that “patients will be in charge of making decisions about their care”. But the talk throughout the rest of the paper is of “empowering” health professionals. In principle, the interests of health professionals and patients are aligned, in the same way the interests of social workers and service users are aligned in social care. But in practice, the interests of professionals (and social workers) often override – and indeed undermine – those of patients (and service users).

Such professional interest leads to patients fitting around services rather than vice versa (as noted in para 1.9). Which begs the question as to why the whole narrative the coalition is pushing in these reforms is one of giving GPs more power and responsibility for commissioning local health services? It’s an odd paradox that the patient involvement proposals (see below) won’t sufficiently overcome.

One phrase in the White Paper slightly sticks in the throat: “Nothing about me without me” (also appearing as “No decision about me without me”). Those of us familiar with the disability movement will recognise the appropriation of that movement’s clarion call: “Nothing about us without us”. For disabled people that phrase represents freedom, choice, independent living and the desire to have the same opportunities as non-disabled people. For NHS patients and doctors, it represents something altogether more managerial and process focused.

There are, though, some good things in the White Paper. These include appropriate recognition that some people will need extra support to enable them to have effective choice, and an understanding of the potential of Personal Health Budgets and a commitment to their contuining piloting and evaluation.

On the surface of it the introduction of HealthWatch – a “powerful new consumer champion” – also seems like a good thing. At the national level, HealthWatch England will advise the national bodies associated with the White Paper reforms (the NHS Commissioning Board, Monitor, and the CQC) on a variety of topics. It will also provide support to local HealthWatch organisations who themselves will ensure the views and feedback of patients and carers are part of the commissioning of health and social care. Through HealthWatch both nationally and locally, advocacy services will be provided to support patients in exercising choice in the healthcare system.

But there are a series of questions relating to HealthWatch England that need answering before we’ll know whether it will be effective or not, as follows:

  • HealthWatch will be “independent”. If this is so, why does it need to be based in the Care Quality Commission? Why can’t it be a separate entity in its own right?
  • It’s odd to suggest that the NHS Commissioning Board “will champion patient and carer involvement” in healthcare (para 2.4), will “promote patient and care involvement” (para 4.11) and “involve patients as a matter of course in its business” (para 4.11). Isn’t this the role of HealthWatch?
  • What are HW’s governance arrangements? Will it be a separately constituted organisation (e.g. a charity)? Will it be an NDPB? Will it just be a separate entity with some form of Memorandum of Understanding between it and CQC?
  • Related to the questions on governance are questions on who will provide HealthWatch’s leadership? Will it have a Board that oversees the senior management team? If so, will that Board be patient/user-led? If not, why not?
  • If HealthWatch is “new” what happens to existing national service user engagement organisations across health and social care? Will they be allowed to bid to become HealthWatch? Or will HealthWatch sit alongside them? If HealthWatch replaces them, what happens to those organisations?
  • Why does HealthWatch England only provide “advice” to NHS Commissioning Board, Monitor, the CQC and the Secretary of State? Why is it not empowered to take part in joint decision making?
  • Given the above entities are going to be or already are statutory bodies, will HealthWatch England be the mechanism through which they meet their Public Sector Duty and Duty to Involve obligations?

At the local level, the White Paper outlines that the current mechanisms for service user engagement – Local Involvement Networks (LINks) – will become local HealthWatches. This makes sense, but with some cautionary notes:

  • The contracts for LINks are in the process of being renewed in time for April 2011. The White Paper’s timeline says HealthWatch will be set up by April 2012 and LINks will work towards becoming local HealthWatches during 2011. What happens in terms of service user representation during that year? It is, after all, the year in which the Shadow NHS Commissioning Board is established, the NHS Outcomes Framework is published, GP Consortia are established in shadow form, and Patient Reported Outcome Measures are identified and embedded
  • The level of funding available for LINks from April 2011 has yet to be determined. When will this be done? Given the importance of patient involvement in the NHS, will it benefit from the real-terms increase associated with these reforms? If not, why not?
  • In the proposed partnership arrangements at a local level, will local HealthWatch representatives be formally involved in decisions or merely consulted?
  • LINks are expected to both represent user views to local commissioners and also provide advocacy-based services. My experience of organisations operating on both the demand- and supply-side of the health/social care market is that it can happen, but very rarely does so effectively. Does the White Paper expect too much of LINks, given their current infrastructure and capacity to deliver? What will it do to support the building of effective HWs to undertake the role expected of them?
  • The desire for advocacy services is welcome, but I’m concerned by the focus (highlighted in the Analytical Strategy paper associated with the White Paper) of these on particularly supporting people who lack capacity to make choices. Advocacy services actually benefit everyone and shouldn’t just be thought of as being available to people subject to the Mental Capacity Act.
  • Advocacy is quite a crowded market (especially in social care). The LINks contracts and the role of HealthWatches in future will create a massive bunfight between existing provides at the local and national level, which local politicians may not have the courage to address or let take its course when it inevitably happens.

As they stand, the reforms in the Health White Paper represent the culmination of six years of thinking in Opposition by the now Secretary of State for Health, Andrew Lansley. If the proposals had been laid out in a Green Paper for the intention of deliberation and consideration, I’d have more reason to be positive.

But as with nearly every other part of the Health White Paper, the ill-thought through tensions between patient-led and GP-led reforms and questions around HealthWatch at both a national and a local level mean that it’s very difficult to have any confidence the reforms will do what the coalition government hope.