All that divides us

Part 3: The Importance of Asking

Part 3 of 4 in the series: ‘Social Prescribing a panacea or another top down programme?’
Part 1: Social Prescribing, a panacea or another top-down programme? 
Part 2: Social prescription or medical proscription?
Part 4: We Don’t Have a Health Problem, We Have a Village Problem.

What does good practice look like? (Living well with Dementia)

Setting aside arguments regarding how we might better brand good practice, in part 3 of this series, I’d like to focus on what effective practice – in terms of connecting people into reciprocal community relationships- might look like:

Living well with Dementia

So, a lady walks into a doctor’s surgery with her partner who is her fulltime carer, their names are Mary and Richard. Both are seeking support in figuring out how they can live well together, mindful that dementia is feature of their lives. They are already well on their way in terms of ensuring that they are seen for their capacities; not the lady’s diagnosis, because they’ve asked for help to “live well, given that dementia is a feature of their lives”, instead of asking for help as “dementia sufferers”.

Tip 1: Shift the focus from Dementia sufferer to living well, when dementia is a feature of one’s life.

If Mary and Richard are lucky enough to meet a doctor (or other professional/s) keen on supporting them to build up and deepen their social connections, the doctor/allied professional will begin a conversation that explores their existing connections, as well as the couple’s support needs in sustaining these and building up new ones..

Tip 2: Shift the focus from the individual as sufferer/patient to the person/citizen in community. Actively shift from client narrative to citizenship narrative.

Doctors are limited in the time they can give such conversations and often are working at a scale (populations of 40,000 to 100,000 people) where referrals to the optimum relationship opportunities or contexts are simply not feasible. Often the best they can do is to refer couple’s such as Richard and Mary to organisations better placed to progress the conversation and begin to support the connecting process. While I’ve criticised ‘referrals’ previously, this is actual a very appropriate use of referral, since here GPs are not referring into the unknown based on some community services directory and a ten-minute conversation with the couple, or reference to an online menu of options. Instead they are referring to someone who can accompany them through a life enhancing process. These ‘connecting practitioners’ to whom the doctor may refer, ideally, are skilled in seeing the person(s) as gifted, and are close enough to the couple’s neighbourhood/town/village/estate, that they can also support the couple to become truly connected.

Such referrals do not, or at least should not absolve the doctor of her/his responsibilities as a participation advocate, and medical proscriber. Ethical doctors must ensure that any such referral is made to a community alley who can ensure them and the person they care for, maximum chance of participation in community life. Such ally building can never be passive, and can never be done by GPs who are in the business of ‘handing off’ what they often refer to as their ‘heart sink’ patients. I fear that time spent attempting to convert the resistant GP, is time borrowed from the GP who is a genuine ‘participation advocate’, as well as from their partners who are at the ready do the connecting work at community level.

Breaching barriers to participation with Mary and Richard is about seeing past the label ‘dementia’, to reveal the gifts, skills and passions of the person for whom dementia is a feature of their life. And that from there finding a way into the heart of community, to the places and people who will receive those gifts and share their own. This is a radically different proposition to the traditional deficit model which tends to zero in on the diagnosis of dementia in an effort to ameliorate the ‘issue’. In contrast asset based community development (ABCD) which is what I am seeking to advance as alternative, recognises that labels like dementia tend to obscure people’s gifts, and while helpful in defining what services people may need, also inadvertently act as a barrier to a person’s participation in community life. The barrier to participation arises because the label redefines the person, who once was a wife, mother, friend, and neighbour, as a client of a service system. Following this ‘redefinement’, the most valuable part of them in economic terms, is their diagnosis and all too often, every other aspect of their lives become dangerously devalued. The challenge for the community ally that is acting as a mediating organization between the NHS and the community at large, is to address the structural and relational issues at the heart of this devaluing process, while at the same time opening-up real reciprocal opportunities, close to that person’s doorstep.

Again, it is important to emphasis, that the doctor still has a critical role as the trusted initiator of this process, their status in the mind of Mary and Richard will count for a lot when they make the referral and explain why they are doing so.

Tip 3: Shift some GP referrals which direct people to activities, to universal GPs referrals that link people to skilled community workers who can connect those people into meaningful roles and reciprocal relationships. (While, I accept this is already happening in many places under Social Prescribing, the challenge is to ensure it is capacity oriented and that the deficit mind-set is challenged throughout by all involved. It is also important the new roles should not be created at the expense of existing capacities in neighbourhoods. Where mediating community organisations already exist, little is gained and much can be lost, by creating new roles and additional structures.)

Community workers, faith leaders, small social enterprises, fire officers, small businesses, AA groups, parent and toddler groups embedded in local communities, all have a vital role to play here (I’ll say more on this next week). The beauty of discovering pathways towards a social model of change, and away from the medical model, is that we reduce the potential that the medical system will produce antibodies against the community alternatives that such a process generates, to kill them off. In systems change work, it is well recognised that institutional systems, beyond a certain scale, are primarily concerned with their own survival and hence tend to perpetuate the very problems they are trying to solve. Since to survive they need people needs, in the same way that the steel industry needs iron ore.

The great innovation that underpins Social Prescribing is that it enables that doctor to ask: “what is the community alternative to my medical intervention?” Still its (Social Prescribing) greatest threat is that it stays within the medical paradigm, while pursuing community alternatives that exist outside the medical narrative. The very fact that it is called Social Prescribing is revealing. The term ‘Social Prescribing’ is it seems a political concession, made by well-intentioned reformers, in the hope that those that are resistant to going beyond the medical model will feel better about doing so, because the term ‘prescribing’ is appended to the word that supposedly concerns them: ‘social’. I am not convinced that in the long-term that this tactic will adequately address the resistance that is at the heart of why so many non-sick people have been medicalised in the past, and why so many others who have sought community alternatives have been drawn back into ‘serviceland’ again and again.

As mentioned in last week’s blog in the series, challenging medical hegemony and the medical and pharmaceutical compact is an act of heresy. The fundamental challenge for the medical heretic (ethical doctor) -who do not need to be tricked with sophistry or word play such as Social Prescribing- is that he/she needs to make sure the alternative to traditional medical interventions for the “patient”, are as far away from the hegemony of the healthcare system as possible, otherwise the people they are trying to break free from the system, will almost certainly be sucked back into “serviceland”.

Medical heretics also need to use their considerable influence through Clinical Commissioning Groups (CCGs) and Strategic Transformation Plans (STPs) to insist that the CVSE (what I referred to above as mediating organisations) allies do not feel obliged to create proxy services or programmes that ape medical models, to ensure they comply with funding criteria. Instead CCGs and STPs must free them up completely so that they can do what they do best; genuinely engage in social change and community development. If this happens, we will quickly evolve past current expressions of the Social Prescribing model, and I predict the name will change as a matter of course, thereafter. This is how real disruption happens and if it does, it will be to the immense credit of those who are currently leading on the Social Prescribing initiative, and the humility they illustrate in reaching out for help and disruption, to others outside their medical silos and the imprint of their medical hegemonic system.

Tip 4: Be aware that large systems produce antibodies against innovation. To counter these, ensure that community alternatives to medical/institutional intervention are as far from NHS (body) culture as possible. Make sure third sector/community groups are supported/rewarded for disruption, heresy and active rejection of the medical model. Cheer them on for their promotion of social models and asset based community development. The small, locally rooted community and voluntary groups are best placed to engage in such mischief and disruption, the larger the Community and Voluntary organisation, the more likely they will be to produce sympathetic mirror antibodies to the medical system. Go small and local, resource well, relocate authority and then get out of the way.

The best route out of institutionalisation is re-communalisation. This direction of travel requires a new national conversation, which reframes the role of the lay person sitting opposite the professional, from the consumer of healthcare or wellbeing services/programmes (patient/client) to a member of their community (citizen) with valuable contributions to make. This requires a three-step evolution. Which can be characterised through the following questions:

  1. What’s the matter with you?
  2. What matters to you?
  3. What matters to you that you’d like to join with others in doing?

Once answers to the third question unfold, the challenge for connecting practitioners is to work with allies, most especially including the person at the centre of the effort, to figure out:

  1. What are the assets/resources/capacities and wants that exist near to the person’s doorstep that would help them make that contribution?
Tip 5: Shift the conversation from diagnosis or deficit towards what gifts (what they were born with), skills (what they know well enough to teach another) and passions (what they care about enough to act on) the person with dementia and their partner has.

‘Connecting practitioners’[1] are also capable of having what’s known in inclusion and Asset-Based Community Development circles as a “good life conversation” (the next blog after this series will explain this approach and present a framework that integrates the ‘Good life conversation’ with Asset-based Community Development (ABCD)). The Good Life conversation reveals assets and opportunities to connect with near neighbours and increase experiences of unforced and unpaid for acceptance.

Tip 6: Shift from needs assessments that so often breakdown trust and reinforce labels, towards conversations that build trust and create a narrative and biography of the person. “What does a good day look like for you?” “What would I need to know to live well in your community/your life?”

The Map is not the Territory

Unbeknownst to the couple (Mary and Richard) at the centre of this example there are scores of professionals whose practice and maps of the world criss-cross with their lives. From fire officers, to nurses, social workers and community workers, and a myriad of others, all of whom have the potential to have immense impact on Mary’s and Richard’s future wellbeing and potential pathways towards interdependence or institutionalisation. Mary and Richard will never get to meet most of these good souls. From legislators to policy makers, from commissioners to procurement offers, from doctors to allied health professionals; from third sector organisations to local initiatives, there is an incredible array of agendas and perspectives at play. With that diverse an array of possibilities one thing is certain, none of them regardless of their training or experience possess ‘the map’ – that totally reveals the territory – they’d require to appropriately understand the full context. This is not a criticism, in fact it is impossible for any one person to know all the assets that exist in such a couple’s lives and that of their community’s. When it comes to communities and individuals, institutions know everything in general, but very little in particular.

While much is made in social prescribing of linking people to community opportunities, the fact is that our personal and community assets are largely invisible, not just to outside professionals, but also to all of us residents and our neighbours. This is the central challenge for Social Prescribing. In practice community assets only become revealed through ongoing dynamic learning conversations, the outputs of which are a moveable feast and do not readily fit on a list or an app. That’s why referrals from a directory can only ever point so far; typically, towards known/listed services. Relationships and associations by contrast are far less clear cut. Enduring change never comes from a list or the drop-down options of an App, it comes from ongoing dynamic conversations, connections, fun and pain, risks and long-term commitments. There are no shortcuts or scalable ‘silver bullets’.

Dominant Narratives

The sad fact is that when it comes to Mary and Richard seeking to live well with dementia as a feature of their lives, they do so within a dominant narrative, which characterises them and their lives as follows:

  1. These folks have problems/deficits that need fixing; needs that need addressing
  2. These folks have needs best addressed by qualified people in a service/programmatic context. Even if for example they need handiwork done in their home it’s better to commission an organisation like Age UK to do that, than to risk trusting random neighbours-anyway how could we possibly connect willing neighbours, and even if we could, how could we trust them without formal vetting?
  3. These folks live in communities that are careless/unavailable and unqualified to deal with their complex needs. Some communities are outwardly hostile to people with additional support needs, others are well intentioned but ill equipped.
  4. Their issues are emblematic of hundreds of other people coming through our doors and so our solutions must be standardisable, efficient, measurable and scalable if we are going to be able to meet everyone’s needs equitably.
  5. We can only commission for services, programmes and activities, our system does not allow us to commission around a person. (as with all the above and below, this is not technical true). We cannot become too close or focused on Mary and Richard, we must maintain professional boundaries.
  6. Third sector groups are more reliable, albeit as a proxy for resident to resident connections in helping people who are in Mary’s and Richard’s case and the larger groups are easier to contract with when working within fixed term contracts and strict Key Performance Indicators (KPIs).
  7. It is possible to map a community, create a map of assets and an associated app/Directory and then refer people like Mary and Richard to activities and anticipate appropriate wellbeing outcomes as long as we have link workers who do the relationship piece.

 

Until we address the culture that underpins such narratives, no matter how progressive a new initiative maybe it will not get past go. To paraphrase an old saw: culture eats innovation for breakfast.

Somewhere to live, someone to love, something meaningful to do

In fairness, these narratives are far more progressive than the traditional ones that lead to the medicalisation of people, not just people with established diagnosis (such as Mary) but people who do not actually have a bio-medical condition at all.

Those, ironically, who are at risk of getting ‘medical help’ must be a primary focus of those wedded to the principles of social justice and committed to deinstitutionalising people’s lives. It is worth remembering that circa <20% of people who visit their doctor are not bio medically ill. Hence any humane action that prevents them from being medicalised is a net good. But is it good enough?

That’s the core question that underpins this entire series. An addendum to this question is: is it living up to the historical roots of Social Prescribing found in inspirational efforts of The Peckham Experiment.

The Peckham Experiment

Dr. George Williamson and Dr. Innes Pearse, two married doctors, opened the Pioneering Health Centre in Peckham, south east London in 1929, it was chosen because it approximated the populace of the nation. Their aim was to study health as a medical condition in a manner comparable to studies of the natural history of disease. After the first phase closed in 1929 and their findings sufficiently impressed donors they secured funding for a second more ambitious experiment. They recommenced the Peckham experiment in 1935 in a purpose-built Modern building in St Mary’s Road.

950 families were paid a small amount each to participate; in practice, it ran like a modern-day health spa with those who partook referred to as members; not patients. Open areas and a swimming pool were among the many fine and unorthodox features of the building, for what was after all a Health Centre of the 1930s.

Once given the space and autonomy people (members) organised their own sport and leisure activities, functioning as would a co-cooperative and largely producing their own health.

WWII caused the center to close, but it was later re-opened by the members themselves in 1949, a little over a year later it closed for the final time, largely because it did not fit with the direction of the newly formed National Health Service (NHS). 65 years later the NHS is endeavoring to raise the phoenix from the ashes in the guise of Social Prescribing (SP) among other innovative initiatives.

I acknowledge the positive intentions underpinning SP and that early research is finding many Social Prescribing efforts are enhancing people’s lives in relative terms. Of course, they are, but these results must be considered for what they are: relative. Relative to the alternatives, in terms of, on one hand, what would have happened if beneficiaries were medicalised instead of referred to social activities, and on the other hand, what would have happened if they experienced enhanced community practices and a more progressive social perspective in line with the Peckham experiment, albeit with a more modern twist.

The issue of Silos: why does health not relate to social care, housing, justice and environmental efforts?

Additionally, questions must be asked with regarded to what would happen if we genuinely addressed the wicked issue of silo-ed approaches between health, social care, and housing? If we are not prepared to debate such critical questions then we must also confess that we are not prepared to critically review Social Prescribing. My research to date is surfacing very little in the way of critical debate and reflective practice around Social Prescribing, why is that?

To fully realise the good intentions of enterprises such as Social Prescribing, for people like Mary and Richard, we need to decouple the conversation from the “what’ and the “how”, and as Simon Sinek advises and move towards the “why”. The why of it all is to ensure better health and a deeper sense of wellbeing. Wellbeing we know results from greater personal agency (having a valued/meaningful social role/being a maker/feeling useful), associational life, economic and environmental wellbeing, and access to support services as and when required. In short: somewhere to live, someone to love, and something meaningful to do. Hence near 80-90% of what determines a good life is contingent on community assets, that have little or nothing to do with institutional programs or expert interventions.

Tip 7: Engaging in open debate about the ‘why’ of Social Prescribing will enhance not harm its underlying intent, of course it will change its complexion over time but that’s the price and prize of evolution. Understanding the ‘why’ will enable us to co-create the ‘what’ and the ‘how’ in the best way possible.

Putting Community back on the Map

Asset mapping when done well is never about data gathering, it is about resident led relationship building, in recognition of the fact that people can’t know what they need until they first know what they have. Asset mapping therefore is not an action step, it is simply a prelude to a deeper set of conversations.

Tip 8: Health Practitioners support allies in neighbourhoods, staying within scales of 3,000 to 5,000, and working within areas that local people define as their communities. Search out allies who have a deep ongoing relationship with the local community. Instead of automatically defaulting towards employing Social Prescribing coordinators, for example, consider investing in local small community associations/social enterprises that are rooted in communities to take on the community discovery function. Before you deliver, seek to discover what’s already there, then support that. This is where the Peckham experiment fell down and where Peckham 2.0 if there is ever to be on should pick up the baton.

Eight assets that Mary and Richard have

Getting to better practice in the context of our case study begins with a recognition and deep appreciation of the assets that can help Mary and Richard, and others like them in living well when dementia is a feature of their lives, they include:

1. The unique competencies of people with dementia as a feature of their lives, to live well;

2. The unique competencies of families (including extended members) of people with dementia as a feature of their lives, to live well themselves and to support family members with dementia to live well;

3. The unique competencies of communities (neighbours at street-level and very local shop owners and associations) to co-create some of the essential conditions with people with dementia as a feature of their lives and their families to live well;

4. The unique competencies of the Community and Voluntary sector to provide capacity building, community animation and citizen advocacy support to individuals, families and communities to live well with dementia as a feature of their lives;

5. The unique competencies of the Public sector to provide and or commission ‘person-centered’ and community centered services; community building infrastructure; and relevant supports that enable autonomy and participation (interdependence);

6. The unique competencies of the Private sector to provide ethical services/products, economic growth and jobs that add value to the strengths of individuals, families and communities in living well with dementia as a feature of their lives;

7. The unique competencies of intentional cooperative partnerships across the other six levers (above) to combine strengths to co-produce hospitable and powerfully connected and inclusive communities.

8. The unique competencies of an enabling Government (local and national) to create a dome of protection around individuals, families and communities, to ensure they have the political, associational, cultural, economic and environmental conditions to live a good and satisfying life.

Tip 9: Take some of the pressure off Social Prescribing by engaging in a conversation regarding the structural/political/cultural barriers to putting these eight assets firmly on the policy, commissioning, and practice maps, as well as in the public narrative about ageing and dementia.

These eight assets, are powerful pathways to change, which few would argue are anything but essential to having a good life. Sadly, most of these are rendered invisible in classic deficit/medically oriented conversations. The therapeutic and advocacy vision of a good life does not expand sufficiently to encompass these assets, and against the backdrop of a limited view of the territory begin to emphasis institutional and programmatic solutions and eclipse personal, family and resident led responses. Of course, there is nothing wrong with proportionate institutional solutions, problems only arise when those that advocate for them, seek a monopoly on the “right to prescribe the best solutions”. It has always struck me as strange that every institutional ‘needs assessment’ that I’ve come across reaches the same basic conclusion: what the person/community that is being analysed needs, are the services of those who are analysing them.

Bring questions, not answers.

The best way to cultivate life enhancing connections as a “helper”, is to be a bringer of questions, instead of a dispenser of answers. In this way, you can be a professional in a living community in much the same way Williamson and Pearse were in Peckham: prepared to be humbled and stand in awe at the health producing capacities that exist in every community, waiting to be revealed, connected and mobilised.

Tip 10: Don’t be helpful be curious.

Conclusion

Communities have a huge reservoir of assets to offer, but we must first support local lay people to discover, then connect and then to mobilise these. We cannot hope to engage with community until we first support local residents to build community. If Social Prescribing continues in the absence of effective community building at street and associational level, it will carry on like an app without an iPhone, and eventually it will die from the very thing it wishes to address: disconnection; going the way of the Peckham experiment that inspired it, and from which it failed to learn.

Tip 11: Before you engage with communities you must be prepared to invest in supporting local residents in building them, not so you can harvest/harness their assets for your institutional agenda, but because building community has intrinsic value for society….and yes it will also enhance health outcomes and reduce inequalities, but not in the way you might expect.

Cormac Russell

[1] A connecting practitioner will be careful not to displace the capacities of local resident connectors in the community, their job is not to replace these connectors but to support them and extend their capacity and reach.

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2 Comments
  • Kathrin Thomas
    Reply

    You are getting progressively more challenging here Cormac. I like your developing narrative a lot and it makes clear what many of us really struggle to put into words. I am now going to see myself as a medical heretic with a duty to encourage community groups to do mischief and disruption.
    This blog abut social prescribing is linked with the debate about sustainability of primary care, (and the whole health and social care sector), where we are all talking about medicalsation, overdiagnosis and overtreatment. Health and Social Care practitioners will recognize the sizable proportion of people who use their services without “needing to”, hence the years of “demand-management” approaches which have been largely unsuccessful as they do not address the root causes or culture/ systems that maintain service land. There is a large element of supplier-induced demand , which the medical model is heavily invested in. It will therefore continue to face collapse because its culture is one that is about avoiding death as teh overall goal, and shift to goals of a “good life” as the end point. The NHS has an institutional fear of death and sees it as failure, which is why it is so skewed towards high tech shiny hospitals where we have 50% of our lifetime health budget spent on us in the last two years of life.
    The solution is to divert the demand for all that stuff that doesn’t fit this offer, through a simple reductive referral to someone else “out there”. We are vague about what this is, as we are not trained to understand this, so we think there could be a simple answer ( get them into groups to reduce loneliness, get them walking to lose weight). This simple narrative is already a lot of progress from 10 years ago, as you rightly point out, but we have a long way to go. I do really agree with your point about traditional needs assessment always coming up with the answer of needing more of whatever the analyst provides. I have done this myself often enough!
    I feel that my own learning about improving population health has increasingly come from outside the health sector, such as from people like yourself, who have a lot to teach us in service land. But if we are really going to keep moving towards a social model of health, then I think we need some investment of time/ energy/ resources of all kinds into the ability of health professionals to seek out allies and be truly able to support them – this is time consuming and needs relationship skills, which isnt easy for many of us. I do therefore think that we need to make the case for what you call connecting practitioners. The value of people who understand community engagement and who are not brainwashed in service land would be great as part of wider primary care teams, to work on shifting culture within as well as connecting outside. I mean that we need more sophisticated change agents than the simple navigator/ social prescribing coordinator role. Have you seen such lay health workers embedded in health care teams anywhere?

    Looking forward to No 4!

    August 30, 2017 at 7:04 pm
    • Hi Kathrin,

      Many thanks for this most thoughtful and thought provoking response. I agree wholeheartedly, your insight regarding institutional fear of death, resonates very strongly.

      Warm wishes and thanks so much for your excellent comments.

      BW

      Cormac

      September 3, 2017 at 6:17 pm

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