No decision about me without me

Link to original open letter.

National Voices
202 Hatton Square
16 Baldwins Gardens
31st May 2012
Dear Secretary of State,

r/e Shared decisions consultation
As a group of leading advocates for the widespread adoption of shared decision making in healthcare, we are writing to express our dismay and high level of concern regarding the publication on 23 May 2012 of the consultation document ‘Liberating the NHS: No decision about me, without me’. We would welcome a meeting with you as a matter of urgency to discuss how true shared decision making can be embedded in the NHS.
A lack of clarity over what we mean by shared decision making is a major block to addressing the hard cultural and behavioural changes that are necessary truly to embed ‘no decision about me without me’. The consultation document exacerbates this. It claims to be about ‘securing shared decision making’, but in fact it focuses on a further extension of national policy on choice of providers. There are no specific offers or ambitions for the implementation and widespread adoption of shared decisions about care and treatment.
Many of the choice offers outlined in the consultation will be of value for patients and service users. However, we are again in the position of having to reiterate the point that academic research and feedback from patients consistently show that patients care more about being able to exercise choice in relation to their direct care and treatment than about being able to choose between providers of healthcare1.
This argument has been made repeatedly to successive governments and in consultations, including the ‘Choice and Control’ consultation. According to the new document, many responses were along the same theme, and yet it has not resulted in any reorientation of the policy.
Meanwhile people’s involvement in healthcare decisions has shown no significant improvement in the last decade (as measured by repeated national patient surveys). That is unacceptable.

At this crucial time of transition, shared decision making needs to be pursued with the same degree of concentration and effort as has been put into ‘choice’ policy for the last eight years. The critical steps necessary to deliver this were explored at a summit in December 2011. The ensuing report2 was welcomed by Sir David Nicholson, who recognised the challenges in making shared decision part of everyday custom and practice, and that the NHS Commissioning Board must lead the way.
You will be aware that together we repeatedly pushed for the clearest possible wording of the legal duties for commissioners to involve ‘each patient’ and that we were very pleased when, through Earl Howe, the government again amended the relevant clauses before the Bill became an Act.
These duties should open the door for commissioners to lead on implementation. But we believe that will be jeopardised by the continuing dominance of the choice agenda, and that the ‘Choice Mandate’, which contains specific offers against which the board will be accountable, will occupy commissioner and provider attention over and above the patient involvement agenda, where no such offers have been developed.
We wish to be assured that the overall Mandate will make crystal clear that the
commissioning system is required to deliver step change and at scale approaches to shared decision making and support for self-management; and that the available levers of government and the new commissioning system will be oriented towards that goal.
We are therefore asking for a meeting with you as a matter of urgency to discuss what is required, in the context of the reformed NHS, to move shared decision making from policy discussion to practice in the consulting room.

Yours sincerely,

Jeremy Taylor, Chief Executive, National Voices
Stephen Thornton, Chief Executive, Health Foundation
Brian Fisher, Chair, NHS Alliance PPI Steering Group
Angela Coulter, Director of Global Initiatives, Informed Medical Decisions Foundation

1 Coulter, A. ’Do patients want a choice and does it work?’BMJ 2010;341:c4989

2 The Health Foundation, Leading the way to shared decision making, 2012

What is the point of patient choice? Abetternhs

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