You are not accountable to your service users - why that matters and what to do about it

It started with a letter. A patronising, unkind and threatening letter. Our foster child's appointment was cancelled (computer systems down). Two days later, the service sent a letter to let us know our ‘non-attendance has been recorded’ and we would be ‘withdrawn’ should we fail to attend another appointment. My cheeks burned with shame and frustration.

A decade’s work across mental health, poverty and domestic violence has connected me to many people who cannot physically, emotionally or even spiritually attend appointments. For reasons, our systems would do well to understand and respond to. For example, fear and shame, no means to ring and cancel, language barriers, lack of money, transport, issues with childcare, or a context of inescapable and constant control (domestic and family violence).

If services and systems fail vulnerable people and families, they have failed.

People facing barriers need the help and compassion of our systems. The letter reflects a service stuck in the paradigm of ‘people are hard to reach’ and ‘non-complaint’. Many systems are hard to access, and people face extraordinary barriers many of us cannot imagine and seemingly do not attempt to understand. We cannot commit to equity goals, and then fail to deliver on them through our service delivery. Contrary to the popular saying, we do need to sweat the small stuff. It's the big stuff.

Respectful and compassionate systems first check if people are okay and support them to address the barriers they face to accessing critical health and social care.

Perhaps stories like this sometimes have happy endings. Feedback given, sincere apologies made and service improved. Experience tells me that seldom happens. More often, people and their experiences are dismissed, systems and those in them defended and those very same people miss out on care and support (entirely, or in a way that works for them).

When we rang to complain, we were met with confusion, not-so-subtle contempt and no apology. When we made it to the re-scheduled appointment, the receptionist was yelling at an elderly couple who spoke little English. The service provider talked loudly about our foster child's trauma bluntly, in earshot of him.

This article contains several frameworks and inspiration for how we might do better together. Including:

• Reasons for perpetual poor quality and minimal feedback about services
• Moving to a consumer-directed and co-produced reality
• Service visibility and understanding what a 'service' is (including excellent examples from TACSI, MAC-UK, Family Safety Victoria and Brisbane South PHN)
• Sorry is not the hardest word (sorry Elton John).

Photo by Zbysiu Rodak on Unsplash

Perpetuating poor quality 

There is a world of health and social care services; many of us are not privy to. We may not need them and importantly, have choices (including going elsewhere when a service doesn't meet our expectations). Even as service designers, we have a small window into the experiences of people and families, often moderated through their shame.

What we are ashamed of, we tend not to talk about. What we think is beyond our level of deservedness, we tend not to speak or complain about.

Becoming a foster parent to a young person with complex trauma, a world of lived experience has opened up for my family and me. It’s frightening and profoundly frustrating. My experiences as a service designer and our lived experience tell me that the quality of services goes unchallenged when people who receive services:

• Don’t know what they’re supposed to get and therefore don't know when it's not that.
• Don’t have the power and agency to complain, including confidence that services will not be removed or degraded further as a result of speaking up (power differentials).
• Are not asked for their feedback by professionals who are curious and organisations who demonstrate their capacity to listen and learn. If we believe nothing will be done, why share our thoughts and engage in hope?
• Have no choice of alternatives. Or, have not been supported to understand the options they do have (including information about how to transition to an alternative).
• Have no role in the design, delivery and evaluation of services. Services built mainly on the views and needs of professionals, rather than the people the service and system exist to benefit.
• Have no energy left.

Service quality also remains perpetually average (including mismatched to the needs and expectations of the people services are supposed to benefit) if our systems:

• Are stuck in a paradigm of seeing complaints as ‘bad’ and people who complain as ‘ungrateful’ and 'difficult.' That includes thinking that when services are free, people should just be 'grateful' and are not entitled to voice, feedback and dignity (as I've heard a number of times.)
• Do not realise they are in the business of service delivery. That is an end-to-end integrated approach to delivering principles, roles, activities and communications where experience matters.
• Have not adequately grappled with the move to consumer-directed care, including fundamentally shifting culture to that of compassionate inquiry and recognising the agency and rights of people who have historically been passive recipients. Indicators typically include a pervasive belief and approach to doing 'to' people and knowing best 'for' them.
• Think they are doing a ‘good job’ but also can’t answer the question “how do you know?” and “according to who?”
• Gatekeepers and front-facing staff (e.g. receptionists) believe it’s their job to defend the system and its rules at all costs (including the experience and needs of the people and families standing in front of them).

Photo by Matheus Ferrero on Unsplash

To illustrate that, I once worked with an organisation who frequently complained about dying people and their families as being 'difficult' and 'demanding'. They wanted regularity in their support staff, people they knew and who knew their families. That is the least we can do to ease suffering and ensure dignity in the last days, weeks and months of someone's life. The organisation had no mechanisms for feedback, other than a passive online form that someone could "fill out if they cared enough." Feedback was filed and placed at the bottom of a drawer, never to be seen again.

We will never achieve the aspiration for consumer-directed care or get to Co-design if we cannot address some very fundamental cultural and structural issues with the ways we think about, design, deliver and improve services. 

People are not automatic consumers we must build that capability in our systems, providers, consumers and communications

Many reforms across health and social care aim to increase the agency, participation and choice of communities. For example, the NDIS which promises (among other things) to:

• Provide people with choice and control to access the most appropriate supports and services
• Provide people with support to become more independent and included in the community
• Welcome, respect and value feedback.

Source: https://www.ndis.gov.au/about-us/policies/service-charter

That requires people with a disability and their close supporters to move from the role of passive recipient to that of co-producers.

Consumerism is like a muscle. If we don't use it, it atrophies. If we don't have choice, are not asked for our input - we have not practised how to contribute. Some people have never had the chance to learn.

The transition to consumer-directed care can’t happen fast enough. However, it must be deliberate, systemic and futuristic in its selection of guiding principles, mechanisms and structures. Diagram: The change required to move to co-production, across levels.

Paul Hope (then Minister of State for Care Services) described Co-production in 2009 as making “social care altogether more humane, more trustworthy, more valued – and altogether more transforming for those who use it.”  Co-production and Co-design ask service providers to be willing to actively reach out, ask people for their help, and vitally, to share power when it comes to design and decision making.

That’s a big shift for many of us. As much as policymakers dream of their carefully worded intentions trickling down into practice, anyone working in change and reform knows that is slow at best. There is no reform without culture change.

For example, we recently had a support worker for our foster child (T) come to our front door at 8 pm and stand over me demanding, I pay his parking ticket in cash. When I asked T about the support worker, they told me he doesn’t talk. That he’s a bit scary. I asked to see the service statement. The extent of the ‘service’ is below, in a one-line statement.

Image: The extent the service was/is described 

That doesn’t tell us anything about what to expect (or even what the 'service' is). People and families have to know what to expect if they're to be a part of co-production and accountability. To play a game, we need to know the rules. As a service designer and policy nerd, I can participate in accountability to an extent - reliant on the willingness of providers to listen and engage. Many people cannot.

Transparent and clearly communicated service design is a necessary part in accountability. If consumers don't know what they should expect, they can't call out it hasn't been delivered.

Services have explicit principles, touchpoints, actors and behaviours (three examples)

1.

Family Safety Victoria explains their service design well (image source). It is designed from an understanding of the survivor's journey and clearly lists the qualities and behaviours professionals should engage in to achieve positive outcomes. If survivors know what to expect from those who should be helping, they also know when they're not 'helping.'

2.

In 2018 I worked with Brisbane South PHN to convene a Co-design group of people with lived experience of mental illness, carers, doctors, service managers, community workers and commissioners. The group worked together throughout the design and commissioning process to develop explicit principles and services to improve wellbeing for marginalised people and groups.

Through listening to lived experience, we shifted the tone of the system, to one that starts from "how can I help you?" as a default, instead of "I know best for you." We were inspired by the Wellbeing Manifesto for Aotearoa New Zealand. Image source: Brisbane South.

We co-created a set of explicit principles for commissioning, monitoring, and evaluating service quality. In video form (see below) Co-designers (including people with lived experience) explain what they mean:

3. MAC-UK clearly define their approach to working with young people and communities: https://www.mac-uk.org/our-approach. That includes both service level and practice-level principles.

If you don’t explain your service in detail, you can't easily be held to account. It's also possible you may not have a service, but rather a series of fragmented 'bits.'

Resolve that through:

• Deliberately designing your services from end-to-end, based on the desired consumer journey (in their words, not yours). To that, you might draw on journey maps, service blueprints etc. That must include explicit principles to guide all efforts at all levels of design and delivery.
• Support an on-going cultural shift in your teams, organizations and systems to ensure people understand the principles (in an embodied way, not only cerebrally) as well as what their roles are within the ‘new normal.’
• Get really good at listening and showing your community that you do. Listen in an on-going way, learn how to share power, reach out (instead of expecting people to come to you). 

Reach out – don’t expect people to come to you

Within the NDIS service charter commitments “[we] welcome, respect and value feedback” is mentioned. While that is excellent, there must also be a suggestion that providers actively ‘seek’ feedback.

Many of our services and systems assume that because there are pathways established for feedback, that they work, and that those who want to provide feedback can. How do we know?

Are your pathways for feedback effective? According to who? Are they passive or active?

Photo by Jamie Street on Unsplash

While there are often channels, or ‘a’ pathway to deliver feedback:

• Are they readily available? When? How? 
• Who are they available to? Importantly, who are they not available to? 
• Beyond availability, how effective are they? What is the depth of feedback received?
• Have power differentials been considered? 
• Do they make efforts to seek feedback from people? Instead of relying on them going out of their way to share when something has gone well or poorly.
• To whom does the burden fall to do the ‘work’ of accountability? 

Accountability is a relational process.

In addition to having accessible pathways for people to provide feedback, our systems have to actively seek it. From a diverse range of perspectives, including people who have not been able to access the service.

You won’t test access by only talking to those who have accessed a service.

Sorry is not the hardest word

Apologies Elton John fans, Elton was wrong – sorry is not the hardest word. Offering a sincere apology asks very little of us and offers so much. Everyone, in a system, must have the capacity to say sorry. When we apologise we are:

• Validating people’s emotions, critical to recovery from trauma
• Acknowledging their experience (regardless of whether we agree)
• Listening to learn, instead of from defence
• Moving beyond ‘fact-checking' people's stories, which often allows us to escape from empathy and having to do anything differently.

Summary

I remain frustrated and hopeful. I hope that our systems and services can make the transition to seeing people as worthy of being co-producers and build the necessary cultures and structures to make that so. Our biggest risk is not doing anything differently.

If people cannot easily access our systems or services, that's on us not them.

As Stefan Czerniawski shares in their article about leaving the civil service:

“It’s very easy to get used to what is usual. In everything from the tacit assumptions, we make about the boundaries of policy possibilities to the way we manage our working environment we all become institutionalised"

We must do much, much better. Let’s become better listeners and begin embedding the mindsets and practices of Co-design into our institutional DNA. Accountability is not a given, it is made and re-made constantly through relationships.

Want to talk about Co-design? Culture change? Service design? Get in touch.