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Health and wellbeing

From repression to co-production with citizens: Why we need behaviour change in healthcare

What’s the mission of health care?

I’ve been working as a physician and gastroenterologist both in Denmark and Sweden for more than 30 years. Over time, I’ve become more and more puzzled about our healthcare system and how otherwise responsible human beings can tolerate the way that common behaviourial rules are suspended when you access healthcare.

In my role I am supposed to order people named ”patients” to behave the way that I or the ”science” believe is the right way to behave. At the same time, most medical practitioners know that their patients will not in fact behave the way recommended. Most studies on “compliance” with recommended treatment show that only 40-50% of patients actually follow therapy recommendations (WHO, 2003). This behaviour is most often a result of their conscious choice and does not arise from stupidity or ignorance. This mismatch is remarkable and the result is devastating to health as more than 50% of patients will be untreated for treatable or preventable diseases.


So, how did we get into this paradoxical situation?

To understand the modern healthcare system and its rules of behaviour, it is necessary to look back in time and try to understand how and why the system has developed. The healthcare system reflects society and is the result of the outlook and the values of citizens. From the beginning of the 16th century, the institutionalisation of health care started in monasteries. Naturally, the rules of behaviour (i.e. obedience and silence) were in accordance to monastic rules. The history of silence, and how we as humans can use the expectation of silence as a tool through which to rule over others, is fascinating. The monasteries aimed at helping people in need - but to get help you were expected to conform to the rules of the organisation.

In the early industrial period, and continuing into the post-world-war era, there was a widespread Western European political vision of the perfect society, in which blessed citizens would live happy and productive lives and where the state would look after all citizens. As a result of industrialization and urbanization, individuals who were not productive or who were a danger to public health (e.g. those suffering from tuberculosis or other infectious diseases or psychiatric conditions) were isolated in hospitals or sanatoria, which was a generally accepted approach. In Sweden this idealized state was named  ”Folkhemmet” (”the people's home”) but the fundamental ideas and dreams were quite uniform throughout Western Europe.  Moreover, there was a belief that the State would help vulnerable groups by creating special enclaves designed to meet their specific needs.

The organisational models of the healthcare systems evolved by inspiration from the most advanced industrial model of the between-the-wars era, namely the car industry in Detroit. Therefore, healthcare was organized in departments and special units in order to focus upon production  outputs instead of supporting people. The idea that the employees of the healthcare system should and could dictate how “patients” should behave is probably a consequence of the roles and rules arising from history, reinforced by the influence of an industry handling production outputs and seeking very hard to standardize. The term “patient” is revealing, as a problematic and stigmatizing construction. It is not connected to “patience” (although often you do need to be patient to put up with the wait for healthcare). It actually comes from the Greek word ”pathos” - ”to suffer” – which marks the people concerned as different from “us”, making a repressive approach more possible.

This first post-war era ended when politicians such as the UK’s Prime Minister Margaret Thatcher recognized that this vision of an ”idealised” society went beyond the bounds of possibility and that, even if it could be achieved, this would only be at the price of an intolerable repressiveness towards individuals. What politicians like Thatcher realized (I believe) is that society actually is a conglomeration of individuals. This led inevitably to marketing the ideas of individualisation and personalisation.

However, this led to many health care workers getting stuck in an antiquated system with an extremely conservative structure. The reason why it has been so hard to change is difficult to understand. However, I think that one of the key reasons is that it is a very hierarchical system and that people at the top of the system are comfortable with it, so they do not have much motivation to change. Furthermore, it is becoming increasingly obvious that modern public management systems are focusing on processes instead of results, which preserves the current system.


How can we change healthcare towards a more human system?


We have to accept that the behavioural rules underlying the traditional system are unacceptable and out of line with citizens’ expectations in the 20th century.  So we need to redesign the system. To do this we will have to change the way we think about healthcare. In particular, we need to develop an alternative approach, harnessing the skills and capabilities of human beings instead of continuing to use repressive approaches. We have to incorporate principles of co-design and co-production into how we think and interact – with staff, clients and their families, friends and networks.

This is how I started to transform my ward at in the Highland Hospital in Eksjö hospital in 2001 as described in the Governance International case study.

One important driver of co-productive forms of behavior in healthcare may be greater transparency. Since we have moved to giving patients a much greater understanding of their own conditions, and how to interpret all of the information which we have on how their condition is progressing, we have had great improvements in our results. New ways of reinforcing this are now becoming available. For example, in the US and Sweden the rules are now changing so that patients have internet access to their own health record in order to help patients make proper choices. In the future, patients may even have the opportunity to add their own notes to health records which will open new possibilities.

Fundamentally this is a political issue, the basic question is how to let individuals take control of their own lives in a way that is in accordance with the 20th century.


The author:

Jörgen Tholstrup is the Chief Medical Officer  at the Highland District County Hospital in Eksjö, Sweden. Until December 2013 he was the head of the gastroenterology unit in that hospital.



PRESENT in East Dunbartonshire: Co-production as default, working with people affected by dementia

The G8 Dementia Summit in London in December 2013 has raised awareness of the dementia challenge and the need to take action. In fact, East Dunbartonshire (with about 100,000 inhabitants) to the north of Glasgow had already started to deal with the dementia challenge in 2010.

East Dunbartonshire is the Scottish local authority with the highest proportion of older people. Some 21% of the local population are over 60 years old, and this is rising sharply; moreover, the population aged over 75 years is set to increase by 71% by 2024. There are currently an estimated 2,020 people living with dementia in East Dunbartonshire. 

Faced with two huge costs - the human cost and the budget costs - we all must find better solutions to the dementia challenge.

We believe that co-production must be part of the answer. This is what PRESENT is about. East Dunbartonshire Council, the Joint Improvement Team and Governance International have embarked on a co-production journey to transform public services and local communities through co-production as default, when working with people affected by dementia.

What is co-production? It’s about public services and citizens working together to harness each other’s expertise, skills and resources. For us, driving improvements in health and social care and promoting dementia-friendly communities are not separate issues. Co-production provides an approach for public services and local communities to do it together!

And what will be co-produced? That’s simple – better personal and social outcomes for people with dementia and for all those people who care for and about them, including front-line staff, managers and commissioners.

And why? Just look at the change in demographics and the declining public resources– what we need is not more of the ‘same’ social services but rather more caring communities. As Councillor Michael O'Donnell, Convenor of the Social Work Committee of East Dunbartonshire Council has suggested, "Co-producing dementia friendly communities offers more effective ways of combining public resources with the assets of citizens and wider communities to improve social and personal outcomes for people affected by dementia."

So, we invite you to be PRESENT in our Workshop at the National Co-Production Conference in Edinburgh on 23 April to learn how public services and local communities can give people affected by dementia a presence and enable them to improve their own outcomes and make a full contribution to their communities.

Participants attending this workshop will get a taster session of our Dementia Co-Production Star.

This toolkit, which is being developed by Governance International, East Dunbartonshire Council and the Joint Improvement Team, helps you to improve:

  1. Changing personal relationships within households and families;
  2. Connectedness to local community networks;
  3. Co-production at an organisational level to work in more enabling ways with people affected by dementia

Representatives from East Dunbartonshire Council, local partners and people affected by dementia will tell you about achievements so far and ambitions for the future - and they will also ask you to share your experiences that we can all learn from. 

PRESENT is supported by people with dementia, carers, CHP, Alzheimer Scotland, Ceartas (advocacy), Carers Link and a National Reference Group, including representatives of Alzheimer Scotland, IRISS, the Social Value Lab and Talking Mats.


We are looking forward to meeting you in Edinburgh on 23 April or hearing from you.

Contact Us!

Julie Christie, email: 
Paula Brown, email:
Gerry Power, email:
Elke Loeffler, email:


Better outcomes

Not just good value: A Social Return On Investment (SROI) Study of Hertfordshire Community Meals

Making the business case

Hertfordshire Community Meals (HCM) is not just a provider of meals. Our recent ‘Social Return On Investment’ (SROI) study revealed that HCM has a hugely positive indirect impact on a wide range of stakeholders. Perhaps most importantly, this impact translates into tangible savings for public sector organisations. Indeed, the SROI study argued that from a total investment of around £2.3m (in 2011/2012), HCM generated approximately £12.3m in wider social value. 

The study was carried out by an SROI practitioner in collaboration with Anglia Ruskin University and was subsequently approved by the assurance process of the SROI Network. After going through a detailed process of analysis the study found that, on average, for every £1 invested in HCM’s core meals service, £5.28 of value was created for stakeholders (44% of the value for clients, 36% for public organisations such as the local authority, and 20% for carers and/or family members).

Methodology of the SROI Study

Broadly speaking there are seven stages to carrying out an SROI study: (1) establish scope; (2) identify stakeholders; (3) map outcomes; (4) evidence outcomes; (5) give outcomes a value; (6) establish impact and (7) calculate SROI. These stages, and examples from HCM’s study, are described in greater detail below:

  1. The scope of HCM’s SROI study was to demonstrate the social value generated by community meals services for the purpose of commissioning, funding applications, and internal strategic business planning. The study focused on HCM’s core business activities; namely delivering meals, carrying out basic welfare checks during delivery, ‘Operation Sponge Pudding’ (a joint HCM-Hertfordshire Constabulary-Hertfordshire Fire and Rescue community safety project), and volunteering opportunities associated with the delivery of MoWs. 
  2. Stakeholders were identified as clients themselves (a total population of 1500), carers and/or family members of clients (1200), volunteers, Local Authorities, and the NHS.
  3. Consultation with stakeholder groups was key to the mapping of outcomes. For example, interviews with clients and their carers revealed that as a result of receiving HCM’s MoWs service, some clients feel happier, healthier, safer, more secure, and have greater independence.
  4. In evidencing its outcomes HCM had to go through a process of developing appropriate methods of data collection. Generally speaking, this meant interviewing stakeholders, carrying out focus groups, and then developing relevant questionnaires for those groups on a larger scale before analysing the results.
  5. In giving outcomes a value it was necessary to attach appropriate ‘financial proxies’ to a range of different outcomes reported. For example, a significant proportion of clients reported that if they did not receive HCM’s MoWs service it is likely that they would be placed into residential care. The SROI Practitioner asserted that the average cost of residential care in the UK is £987 per week, or £51,278 per year, and according to the Wanless Social Care Review around 38% of social care expenditure was funded by social service departments, or £19,483.
  6. In establishing impact the study goes through a sensitivity analysis and thus the processes of ‘attribution’ and ‘deadweight’ to ensure HCM’s impact is neither underestimated nor overestimated respectively. This is key to ensure both the credibility and objectivity of the study.

The social value provided by Hertsfordshire Community Meals

The statistical evidence suggests that HCM generates considerable value for its stakeholders. Yet in addition to quantitative evidence, HCM gathered a significant quantity of qualitative evidence, particularly from clients and their carers, which indicates the value that the service provides. For example, a large number of clients reported that because of the service provided to them by HCM, they are happier, healthier, and have greater peace of mind. Clients and their carers also told HCM that they felt more independent, their lives are easier, and that they are now able to work full-time as a result of not having to take time off from work to feed their relatives.

Sam Tappenden

Business Development Manager, Hertfordshire Community Meals


Health and Wellbeing

Co-producing healthier outcomes

Learning from a bike crash in Belgium

I recently travelled to Belgium for a cycling weekend.  I was showing off by riding over some cobbles when I crashed.  Luckily, one of my friends was carrying a portable medical kit, and promptly put on some latex gloves, cleansed my wounds, and administered industrial quantities of pain killers.

I was promptly re-installed on my bicycle, until I decided to call it a day and managed to find a local train station.  Just as I was about to board the train to Brussels a local handyman offered me a lift to the local Accident and Emergency Department. I was pleasantly surprised to be seen after a few minutes.

I was then bandaged up by nurse and doctor, and given a tetanus injection.  The only problem was that my cycling kit was splattered in blood and sweat, and I didn’t have any spare clothes with me.  It was a Sunday in rural Belgium and all the shops were shut.  I used my powers of persuasion and managed to leave wearing a crisp white nurse’s outfit.  Over the last few years I have spent a lot of time thinking about the role of patients in health care innovation, but this wasn’t exactly what I had in mind!

My recovery in the UK

In 2012, I had predicted that many of us would become much more active in our managing our own health care.  I argued that many people would seek out knowledge and expertise from their peers, and online, as well as consulting their doctor.  Well, this crash gave me the chance to put my ideas into practice. 

When I returned home, I sought advice from internet forums and my cycling friends about the best way to treat “road rash”, as we cyclists call abrasions caused by hitting the road.  But in the end, I decided I need help from the experts, and I went to a local “NHS walk-in centre.”  My walk-in centre in Peckham, South London was lot busier than rural Belgium. It would be more accurate to call it a “walk in and sit down for a while” centre, but once I was seen, the nurse who saw me gave me her full care and attention as she changed my dressing, and we shared some stories about our lives, in the fifteen minutes we spent together. 

The help of this nurse, who I saw every few days after this, was crucial in aiding my recovery.  This reminded me of how important it is that clinical staff and patients work together to achieve real outcomes together. There is a real risk that this human relationship, which requires compassion and genuine empathy, is often neglected in modern health systems and innovations. Indeed, Darian Leader has uncovered evidence that the majority patients visit their GP due to psychological distress, rather than for any medical reason.    

Need for a new form of collaboration between patients and clinicians

Nevertheless, the interaction of the patient and clinicians is an area that is ripe for change.  Genuine co-production between clinicians and patients can provide opportunities for better outcomes, experiences and improved efficiency.

 A number of organisations and individuals have been grappling with the question of how patients and clinicians need to work together.  The King’s Fund has argued that the UK needs to unleash a wave of innovation to find new ways to relate to patients in managing their health care conditions. The blogs from patients and experts on Time to Think Differently make the point that clinicians need to find out what patients want, and show why patients need to take more responsibility for their own care.

Often, this can be achieved through very small changes in conversational approach.  For instance, a London based GP reports that she is much more likely to start with “What are we working on today?” rather than “How are you today?”  Her experience was that the result of this shift is that patients are much more thoughtful about their own role in managing their long-term condition. The Health Foundation’s Co-creating Health Programme, has provided clinicians support to rethink about they work with patients with long-term conditions.  A key finding has been that patients respond constructively to jointly set agendas around how best to manage their care. 

Over the last few years I have been talking to clinicians, commissioners and patients around the country about how they can work together more closely as part of the NESTA People Powered Health Programme.  We set out with the idea that co-production was a marginal approach in health care, but we wanted to find out if it could produce real results if it was scaled up.

We need to test and try out creative new approaches

We worked with Professor Chris Drinkwater and GP Dr Guy Pilkington to support doctors to provide “social prescriptions” – linking patients to local activities to give them a sense of purpose and meaning.  We talked to commissioning manager Nick Dixon about how to help adults move out of inpatient psychiatric care and find support from peers who were in recovery themselves.  We worked with colleagues in Leeds to think about how to create multi-disciplinary teams that helped people with many long-term conditions.  We listened to clinicians and service users about how to use group consultations for individuals experiencing chronic pain.  We worked with a primary care centre in Earl’s Court to think about how to get patients to benefit from nurse coaches, and join a time bank to support other patients. My overall experience was that whilst there are many powerful political and professional barriers to giving patients a greater role, there are also interested clinicians and commissioners who are willing to try new ideas and develop new approaches. 

One such co-production champion is Paul Ballard, Deputy Director of Public Health of NHS Tayside. He has been heavily involved in the drive to embed co-production within all areas of work, including the design and implementation of a new Health Equity Strategy. This will imply a much stronger focus on asset-based approaches and behaviour change: As Paul states, “… during this process I have extensively used the Co-production Star which has proved to be an excellent resource to support our co-production work”.

Co-production offers a financial solution

Not only is there a moral case for co-production, there is also a financial case.  If we were to reshape the health service, so that it had a whole range of support for patient groups, peer to peer support, alternatives to medical care, new forms of medical consultation, and other co-produced forms of health and well-being, we could realise savings of at least £4.4 billion or 7% of the NHS budget.  This doesn’t always require the most expensive medicines, equipment or buildings. But it does require the public and professionals to show the will to re-think and re-imagine what the future of health care looks like. 

If you are interested in exploring how to think creatively about how to bring together clinicians and patients to co-produce healthier outcomes check out our co-production case studies and do get in touch.



Ajay Khandelwal, Associate, Governance International 



Health and Wellbeing

Community Skills in Action

'When you first asked me about skills I said I had none because I never did very well at school. But then you asked me how long I'd lived here and what I know about my neighbourhood then I realised I have lots of skills, yes lots.'

The UK charity Skills for Care started its work on community skills development, as a way of building community capacity or social capital, in 2008 as the seventh principle in the principles of workforce redesign. This stated that if social care was to be successful in developing personalisation, commissioners would need to develop a better understanding of the skills that exist in a local community.

In 2009 Skills for Care commissioned 'Only a Footstep Away' as an evidence review of the role of skills development in building community capacity. We published this report in 2010, and made a commitment to test out in action the theory that a more explicit focus on 'skills' as part of community development might lead to different outcomes for people with social care or support needs living in a particular community. In late 2010 we published a 'practical guide to neighborhood workforce planning and community skills development' and established 14 pilot sites to test our model. 

We found that creating an explicit conversation about skills as part of a community development model had profound and multiplying effects. For example, a food bank that couldn't understand why people removed the fresh vegetables from their allocations and didn't take them home found out through skills analysis that most of the people who used the food bank did not know how to cook fresh vegetables. So they taught people how to cook and saw improved nutrition. Indeed, people used all the food they were given and saw the food bank as a positive socialisation opportunity. As a matter of fact, two people fell in love with cooking and went on to take a vocational course in cooking at their local college.

We found that the model could work in multiple settings. For example, a provider could use the model to assess the skills of local businesses in enabling people with learning disabilities to access their services (whether that was banking, transport or retail). If the provider developed training for these local businesses, people using care and support services felt more able to use local businesses unaided, and felt more integrated in their community. The model has been used by a shire county to develop community cohesion, by a parish council to set up a skills bank, by a village residents association, and a borough council as part of a public health campaign. The model has been adopted in affluent areas such as a Royal London Borough - and in less affluent areas with high unemployment. In each case a focus on skills in its broadest sense has brought people together to share and develop those skills in many different ways.

In 2012 we published an independent evaluation of the community skills approach. We dropped the concept of 'neighbourhood workforce planning' as we found the term 'community skills' can capture the whole model, which is essentially: 

Talk to people about what skills they have and what skills they need to learn or develop. Then give people the opportunity to acquire those skills.

Skills can refer to a range of knowledge and experience - from knowing where not to go at night in a particular neighbourhood, to knowing how to fix a shed, or being able to talk to people, to formal or practical skills - or knowing what an 'app' is!  Skills do not have to be about formal training or qualifications.

Everyone has skills - everyone can share those skills with others.

So what are we doing now? 

We are working with some of the original sites to ask - 'what value comes from the community skills approach? How do we realise that value?'  Again, we are defining value more broadly than just in economic terms and looking instead at how value is added on multiple dimensions.

We have also set up two new work streams building on the earlier community skills programme. These new work streams are focused on the concept of 'Skills Around the Person', with one work stream applying this in an end of life context.  'Skills Around the Person' requires a model that explores what happens if social care assessment or person centered planning are substituted with by an explicit conversation about skills. Finding out what skills the person needing support has and needs to learn. Finding out what skills people (paid and unpaid) have and need to learn to support themselves. Then, doing something to address those skills needs for new skills and seeing what difference they make to people's lives.

In the early days projects testing this work for us have begun to share reflections and experience. The projects are saying things like: 

  • We need to change the assessment model we've brought in. It doesn't work.
  • People get this?
  • This is real culture change.
  • Is it honestly that simple? 

Perhaps the best example how to put 'Skills Around the Person' in practice is the situation when people come to end of their lives. People at the end of their lives have skills to offer others and skills they need to learn. What if a person at the end of their life needs assertive skills to make sure they can remain in control of the decision-making about their care and support? By having an explicit conversation about the skills that people need and coaching them to get those skills will they and those around them be better able to stay at home as long as possible and have a good death?  As with the previous programme of work, the 'Skills Around the Person' model is being independently evaluated and will report in spring 2014. 

Jim Thomas, Programme Head, Workforce Innovation, Skills for Care.
Melanie Henwood OBE, Health & Social Care Consultant.

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