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 :

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.