What happened to patient power?

March 13th 2012

Dear Mr Cameron,

I am writing to register my strong objections to the government’s major policy change on Healthwatch – specifically your decision to abandon plans to establish statutory Local Healthwatch bodies. Healthwatch was intended to ensure that users of NHS and social care were at the centre of plans to improve services, but the Department of Health’s new plan for public involvement is confusing, vague, inconsistent, and lacks coherence.

Instead of creating independent statutory bodies led by local people who can monitor, influence, involve the public, hold the local authority and NHS to account; the government plan to create weak bodies that will not be independent, but will be funded by and accountable to the local authority they are monitoring. There will be no genuine accountability to the public. This is betrayal of public trust and an appalling waste of public money. Plans for a statutory Healthwatch body were probably the only part of the Health and Social Care Bill that had any public support.

Your government’s ambition to establish independent, statutory Healthwatch organisations that would help achieve equity and empowerment in relation to access to NHS and social care services, has been diminished to such a degree, that Healthwatch will have little impact. A sensible, popular plan for publicly led, statutory public involvement, has been replaced by a confusing plan to commission a plethora of contractors and sub-contractors in the voluntary and private sector to carry out the role.

The aspiration to achieve equity and excellence in public involvement in health and social care, especially for the most vulnerable people, been replaced by a model that has lost its central purpose of building effective patient and user led bodies that can influence the planning of health and social care.

In our discussions with the Earl Howe and DH colleagues over the past year, we were led to believe that LINks would evolve and go through a transition into Healthwatch.  It is incomprehensible to us that the plans that were developing for Healthwatch have been replaced, at very short notice, by a highly confusing set of amendments to the Health and Social Care Bill that are very unlikely to achieve the objectives of the Transition Plan and will be very poor VfM.

It was the stated policy of the Coalition that patients and users of social care must be at the heart of everything that is done – not just as beneficiaries of care, but as participants, in shared decision-making. Andrew Lansley has continuously said, “there should be no decision about us, without us”. Why has this promise and aspiration been abandoned and why is the government planning to abolish plans for an effective statutory model of local Healthwatch and replacing it with one that will be chaotic, diffuse and weak with no leadership role for patients and the public?

Instead of engaged and empowered patients and users of social services taking a leading role – many volunteers who have led LINks are feeling disempowered, demoralised and demotivated. We had hoped and believed that at last Healthwatch would genuinely empower through being populated by ordinary people in the community. This hope is now lost.

Andrew Lansley committed himself to creating a society that espouses health and well-being and reduces inequalities in health. Disempowering patients and the public in health and social care runs counter to these ends and denies people the exercise of greater control over their care. The SoS’s  promise to focus on his first priority – to put patients at the heart of all that the DH does – has been abandoned , as evidenced  by the outcome of the House of Lords Healthwatch debate on March 8^th 2012.

Andrew Lansley has often said that he believes that we must see everything that we do in the NHS through the eyes of patients and put patients first; yet he now plans to replace user-led organisations, by contractors and sub-contractors. This is not localism – it is abuse and abrogation of patient involvement and power.

The government planned to abolish LINks.  It now abandons the statutory status of Local Healthwatch. Yet its mantra remains ‘see the service from the patients’ point of view, listen to patients, shift power down through the system – and, empower patients’. The disconnect between pronouncements and policy is now massive and we know that in these tough financial times, many local authorities will not properly fund a LHW and will find an easy way out of meeting their statutory duties, by making a token arrangement, which they will call LHW.

Countless volunteers have worked hard to build effective public involvement organisations to monitor local services, involve the public, and influence commissioners and providers to improve service quality and access. The abolition CHCs and PPIFs over the past few years has twice led to the collapse of effective public involvement and you are about to preside over yet another collapse.

A major principle for government should be to ‘do no harm’, but the DH repeatedly emasculates public involvement organisations it has established, even though, in this case, Healthwatch was intended to achieve the following principles; which we understood were your principles:

• Putting patients and users of social care in the driving seat.
• Developing a culture of active responsibility so that LINKs will be empowered to ask, to challenge and to intervene.
• Listening to patients.
• Asking, reporting, and learning from patient experience – will be of great importance in designing and improving services, including achieving greater efficiency.
• Empowering patients and empowering health professionals.
• Action to empower patients collectively in thinking about what quality standards and commissioning guidelines should look like.
• Patients and the public locally, impacting on decisions about access and design of local services to meet local needs.
• Collectively, driving improvements in standards and outcomes.
• Services answerable to informed and engaged patients.

We request an immediate review by your team into the jettisoning of plans for a genuinely effective system of patients and public involvement in health and social care. We strongly believe your current plans are fundamentally flawed and will not achieve the objectives above.

If you are not willing to review this matter, I would be grateful if you would accept this letter as a formal complaint to you against Andrew Lansley, for amending the Health and Social Care Bill in a way that wholly undermines the model of patient and public involvement in health and social care we were promised across England.

Yours sincerely

Malcolm Alexander

Chair NALM

Member of the DH Healthwatch Programme Board

See also:

Patient Power

What patients can do: NHS Activism NHS vault

What do we do now the NHS bill looks like becoming law? Ian Greener