A new and powerful relationship with patients 

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Part of Working with patients, service users, carers and the public

The NHS five year forward view talks about harnessing the 'renewable energy represented by patients and communities' and the need to 'engage with communities and citizens in new ways, involving them directly in decisions about the future of health and care services'. We know that one of the founding principles underpinning the NHS at its best is that it’s ‘of the people, by the people and for the people’.

Now, more than ever, this is becoming true – not because the Forward View says it but because it’s demanded by patients, communities and the overall population the NHS serves. Simon Stevens recognised this changing relationship when he talked about the NHS as a social movement. This can’t be controlled or mandated - it’s happening and it should be embraced and celebrated as a force for good and renewal.

In a binary world, the access to information and knowledge by patients eager to share in the decision-making process regarding their care is restricted to the medical profession. This colludes with the ability for the powerful experts to remain powerful. But in a digital world, information and knowledge is freely accessible to everyone – which challenges the traditional notion of leadership and power. Everyone becomes a leader and everyone becomes powerful. This is a fundamental challenge to the old paradigm and enables patients to truly embrace the opportunity to become partners and share in the decision-making that affects their care.

This is easier said than done. But the choice is not whether, but when, health care leaders will ride this wave. Failing to do so will see them swamped.

With the aim of supporting new and positive innovations in this space, the team at The King’s Fund has been nurturing this changing patient relationship for the past 12 months by supporting a number of projects where patients have worked in 'collaborative pairs' with health professionals. This has given us insight into the power when patients and healthcare professionals collaborate in determining individual care pathways. Today we publish a new guide to building collaborative relationships with patients based on the lessons from this work.

Developing this way of working on a wider scale requires support and a change of attitude. The power to determine care pathways has to be a shared decision. This requires a fundamental shift in power dynamics, which will require support to unlearn generations of behaviour.

One way of providing this support is seeing patients as partners recognising that the pathways for development of patient and community-based leaders is historically under resourced and undervalued in comparison to the investment in leadership for clinicians and managers. The King's Fund is therefore keen to work specifically with patient leaders to support their practice as leadership partners.

Central to this is a move away from a ‘them and us’ way of relating to a much more collaborative approach, and that this will need a shift from all of us in the way that we think about our leadership roles and the validity of the different perspectives and expertise that we each hold. Collaboration is not about compromise – it brings the best from everyone to find new and potentially exciting innovations.

With a view to tackling this, The King's Fund runs a programme on leading collaboratively with patients and communities, and is also looking to build up a national network of previous attendees that will put a name to this new relational dynamic and support both patient and health care leaders to move into a different role where leadership is shared.

To reinforce the Fund's commitment to this agenda, we are also announcing the appointment of Mark Doughty, co-founder of the Centre for Patient Leadership, as a member of our staff. By appointing Mark, we aim to help address this and to embed a collaborative approach to working with patients across our work.

Working in partnership with patients has and will continue to be a journey for the Fund and we are learning many lessons along the way. We also know that there are many other people and organisations who are doing great work and who have championed this agenda over the years. By making a new commitment to working in this way, we hope to encourage others to do the same. This is why we are calling on every NHS organisation to commit to working with patients as partners and ensure that their perspectives are embedded at the heart of everything the NHS does.


pamela ellis

Comment date
17 July 2016
Do note forget loving family. I have devotedly looked after my mother for years. She was a delightful 92 year old with short term memory. Still with more than a verve for life. Loved going out took delight in anything, anywhere. GP changed heart tablet she had been on for years Atenolol to Amlodipine together with Simvastatin. No-one bothered about compatibility despite a Record for it to be checked. Scarborough Hospital she went into for Harsh Cough and Intermittent Chest Pains dismissed these reasons and invented one of dementia. Tablets not looked in to. Swelling of feet and abdomen ignored. 1st ECG showing abnormal they did not bother with, made no notes, no medical care. Troponin was advised, they refused , no reason given. Night chest pains ignored. Another ECG misdiagnosed as normal, no patient ID, no doctor's notes, Doctor remains unknown. None of the irregularities investigated or made known to family before Post Mortem. Record keeping abysmal. Told death was before CPR started. All known as a nightnurse stayed on after her shift ended to witness all. Her statement secreted away i FIO written by someone else signed by her. Information refused to family. No recording of it anywhere. A record my mother was desperate to go home. Kept from family. Mum was kept in their like a prisoner, to torture with no medical care while in pain and hunger, they had also lost her teeth so she could not eat - not even making a Nutrition Plan or Record. She was asking for me. I said call me night or day. All ignored. How cruel and abhorrent does it get for other human beings acting so cruelly to other human beings. Dogs are treated better.

Jacqueline Allen

Comment date
12 July 2016
I think collaboration with patients should always be upmost by involving them in their care. However the view and focus to enable it to be implemented by taking it forward is a good insight.

Mick Smith

patient - (governor of an FT)
Comment date
11 July 2016
I recently was invited to attend a local CCG seminar where we were going to be asked, 'Which services/sections of our provision ought we to charge for?' If THAT is what you mean by involving us in your decision making then this will not work and we patients will suffer - AND be blamed for the decisions too. NO THANK YOU. YOU show how tough you all are and order the politicians to fund you adequately.

Dr Umesh Prabhu

Medical Director,
Wrightington, Wigan and Leigh FT
Comment date
10 July 2016
Excellent article Marcus. NHS must be for the patients, with the patients and by the patients. It is our patients who got to live (or rarely die) with our decisions, the investigations we carry out, medicines we give, surgeries we carry out and rarely mistakes we make as doctors, nurses or other clinical staff or managers.

So for me, patients are not simply equal partners but major stakeholders.

Vanguard, 5 years plan or Devomanc should not be the reason for us to remember our relation with patients but they give us all excellent opportunity to think about our common purpose and that is providing the best and safest care for patients. Sadly we have compartmentalised care for patients with Primary care, secondary care, mental health, community care and social care. There are too many masters, too many organisations and too many people to please to change anything and in such a culture and system it is our patients and staff who suffer. NHS is also financially dominated target driven organisation and we got to change all these.

We must always put patients at the heart of any decision making, focus on patient pathways and look at holistic care and use single IT as the tool to drive excellent care and we must stop working in silos and we must always have powerful and excellent patient engagement and partnership and then only we can be proud of our NHS.

Kathy Torpie

Patient, Psychologist, Author and International Keynote Speaker,
Comment date
08 July 2016
Because the clinician and patient operate within the economic parameters set by government, there is a risk that their collaboration could become a different kind of "them against us" with clinician/patient partners vs political forces. I suggest that the collaboration should include all three of the forces that drive healthcare - clinicians, patients and politicians. Hard? Oh yes! But the government is a key player in determining the future of medicine and must be included as a collaborative partner together with clinicians and patients.

kevin riley

Retired Public Sector Solicitor and User and active Supporter of Doctors and Nurses working in the NHS,
Comment date
07 July 2016
Unless and until there are sufficient nurses and doctors employed by the very highly paid Chief Executives running NHS Foundation Trusts to provider adequate front line care all this type of academic discussion will have no effect on "patient outcomes" whatsoever.


Comment date
07 July 2016
Full marks for trying Kings Fund and I wish you well but it really makes sad reading that here we are in 2016 and still advocating 'talking with one another', the most basic of needs to make progress.
There is something fundamentally wrong with many of those that achieve leadership/management status in our NHS, or more importantly perhaps the system that allows such a 'head in the soil' mentality to prosper while patients suffer. Innovation yes but you don't have to be 'cool' and innovative to ensure that the very basic patient care is being reached.

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