Communities, power and health

Report on our seminar February 2013 chaired by

  • Jeremy Taylor Chief Executive, National Voices. Jeremy’s Manifesto for Patients:

Patients are whole people, not just body parts.  They demand dignity, respect and compassion. They want services that actually join up around them, not just shared budgets.  Patients are citizens with rights.  Access to health is a human rights issue, and an equalities issue.   Citizens also have responsibilities.  They have a right to be heard, individually and collectively.

We as patients are partners in our healthcare with our own expertise.  We expect proper conversations with clinicians. We need good information and IT systems.  Can politicians help to change doctors culture in this respect?

Are patients customers?  Many are not happy with the terminology, but we don’t like poor customer service. We want service providers to care about our experience.  We don’t always want choice of provider, but some choices matter for individuals.

Patients have families and carers – and communities.  Communities are of different kinds, and the NHS finds that difficult.

Policy makers of all stripes have a tendency to glide over these different ways of really seeing the patient and to conceptualise in terms of organisations, funding etc.

Andrew Craig asked Jeremy the question about what he thought the NHS Constitution means when it says “the NHS belongs to us all” and did he think that was part of the “moral owners” argument?  He agreed with that and said he would “sign up to ownership”.  He also said he “wants to see more of the population talking to the system, not just the system talking to the population”

  • Angela Coulter Director of Global Initiatives at the Foundation for Informed Medical Decision Making, Boston, and Senior Research Scientist at the Department of Public Health, University of Oxford.

Angela welcomed Andy Burnhams’ speech. We are tired of constant reorganisation.  The priorities of Mental Health, Long Term Conditions, shifting care out of hospitals and letting people die at home are the right ones.  We want integration, and a recognition that choice and competition are not the same thing. Let’s see the abolition of markets, retain existing organisations and integrate budgets.  No more divide between primary and secondary care.

But we need to go further. There are integrated budgets in Northern Ireland, and no market in Scotland, but there are still problems.  Abolishing markets is necessary but not sufficient.  We need culture and relationship change.   What will be the response to the Mid-Staffs report?  More of everything?  Be more radical.  Recognise the limits to medical care.  More intervention may not be beneficial.  Paternalism encourages dependency.  We need to recognise and encourage people as co-producers of their own health.  Professionals don’t always know best.  Patients have to manage their long term conditions – often more than one.  We may need help to do this, but that help must be provided in knowledge of our own circumstances.  Shared decision making is about sharing knowledge.  Often complex and scientific knowledge, but it can be made accessible with patient decision aids . We need personalised care planning.  Patients are often not told about the negative side of treatments. People have their own goals. They may not want the standard services.

Would the policy of NHS as preferred provider interfere with this?  Any Qualified Provider may have a good side.

In questions it was suggested AQP could be an important lever for change.

Eric Watts:  simply stating “doctors are poor at communicating” is neither accurate nor constructive.

Wendy Savage asked about No Decision Without Me.  Doctors now are less paternalist than when she trained in 1960s.  Shared Decision Making takes time.  What patients want is influenced by the rest of society.

Angela’s reply is that Shared Decision making need not take more time, Information can be provided outside the consultation.

Noted there is a lot of talk about public health, but its never really been a priority.

It’s true that that some people don’t want to be involved, but most do.

  • Brian Fisher Chair of the Socialist Health Association and PPI lead for the NHS Alliance.

and proud owner of one Long Term Condition.

Why have we not been able to shift to seeing a person’s whole needs?  Why has there been so little shift towards prevention?  Liz and Angela worked together on the Future Patient Project 12 years ago, which addressed all the same issues.  But we still have three silos – physical, mental and social care. Cost shifting between different services is a major problem. But the fundamental problem is about culture, and its difficult to shift.

It can be done.  Whittington Hospital tackled  Chronic Obstructive Pulmonary Disease with their Quit @ The Whit programme.  They understood the mental health and community based problems of their patients. They knew that they needed to understand the home circumstances of their patients.  And this approach reduces admissions and saves money.

  1. We need to look at workforce training and education, and how teams operate in hospitals
  2. We need to work on information and knowledge for patients. Traditionally information has been hoarded because knowledge is power. Patients need much more information
  3. Local Healthwatch seems unlikely to be up and running by 1st April as planned.  National Healthwatch simply doesn’t have the power and authority of the three big players in the NHS – the Commissioning Board, the Care Quality Commission and Monitor.
  4. Outcomes should be jointly determined by patients and professionals
  5. One system with one budget would help to join care together.

Labour Party needs to co-produce a workable policy with patients!


Sally pointed out that the local Healthwatch regulations, especially the gagging clause, were being debated in Parliament shortly, and Lord Phil Hunt was praying against them.

Anne-Marie Rafferty: Patients need to be involved in all sorts of health governance.  The NHS constitution does not provide any legal entitlement.

Jane Salvage: How will we respond to the Francis Report. Will we take an asset or a deficit approach?  If patients in Stafford had been actively engaged the outcomes might have been different.

Liz: Francis may call for more regulation – of Health Care Assistants and managers.  IT may enable patients to tell their story.  Patient Opinion enables them to deliver detailed feedback about services in near real time.  I used it myself when I fell downstairs and needed treatment (Sally – in those shoes?). He may propose a duty of candour. Would that help?   If the only reaction is more regulation then all this is still somebody else’s problem.  When will Jeremy be as powerful as the 3 NHS regulators?  What we now about power is that it isn’t given away.  Patients have to seize it.

Jeremy: We lack a language to talk about community

Angela:  Patient participation changes the way clinicians work.  Primary care needs to be more proactive.

Brain: Shared decision making can be oppressive

Stephanie Clark: Patient Participation Groups are seen as a burden by most GPs

Eric Watts: There is now much more emphasis on communication skills for clinicians.  But not all patients want choice or involvement.  Some say “What would you do doctor?”  It takes two to tango.

Gary Bassett: Can we have real dialogue. For example what happened in Lewisham

John Barlow: GPs are private businesses. They don’t want to be accountable to Patient Participation Groups

Jeremy: The emphasis on Patient Participation Groups is ill thought out.  They could be a link with the community.  Maybe National Voices could work together with NAPP on this.

Angela: Doctors often underestimate the degree to which people want to be involved.

Brian:  What about accountability?  In Scotland we have had public election to health boards. What role will councillors play in the new set-up?

Mike Roberts:  referred to the work which had been done in this area a couple of decades ago in 3 areas, Stoke, Birmingham and Tower Hamlets (Teviot Estate Bromley by Bow) which was about looking at capacity building and tackling the social determinants of those communities which would have a positive effect on wellbeing and hence preventative work. That work led to the setting up of the social exclusion unit in the Department of the Environment and much has then stemmed from that work with Tony Gibson and Anne Power.

Barry Silverman: What about Foundation Trust Governors? In most places they are prevented from engaging.  The model is broken.   Will personal health budgets be a force for change?

Jeremy: We need both Electoral and Participatory accountability.

Angela: I’m pessimistic about the idea of joint commissioning.  Budgets and structures don’t change culture.  Personal Health Budgets could be used a s a way of squeezing the money and introducing more private providers.  But the Whole System Demonstrator did show improved outcomes.

Richard Bourne: The NHS should not be an empire separate from other public services.  We need something like the Foundation Trust model

Natasha Posner:  Are Clinical Commissioning groups accountable?

Angela: How do we change the culture?  We need to focus on health outcomes. That is what should be measured and reported on. Not Payment By Results

Jeremy:  We don’t need more regulation.  We should focus on the three pillars of quality: Safety, Outcomes and Patient Experience

Wendy: And lets get away from self-assessment and box ticking.  The CHC model was better – Healthwatch may be useless.

More about Jeremy’s Patient Manifesto