Systems are Systems, People are People

Your PTS Quality Assurance Manager here checking-in post maternity leave. And what a strange maternity leave this has been! I promise, I will not overuse the term ‘unprecedented times’ but….you know.

My pregnancy and the birth of my first child initially threw me into a ‘system of systems’ before I was unceremoniously chucked back out as soon as the dreaded ‘C’ word hit. And the turmoil caused by being part of a process-led system and then having that system removed led me to question my real understanding of systems damage on individuals.

Through working in partnership with allies to develop the New System Alliance, and my seven years working with all of our colleagues to progress the Person-Led, Transitional, Strength-based response (PTS), I learnt a lot about the systems damage and barriers people experience as they transition through their tough time. People are labelled and syphoned into the corresponding silo of services, turning their understandable, human responses into over-pathologised and medicalised issues.

These ‘system-led’ responses create internalised system failures; the quiet and pervasive destroyers of hope and aspiration. People wear the labels assigned to them and they internalise the diagnoses. Without realising it, people develop internal barriers based on this evidence of perceived ‘failure’ which prevents them from seeing the choices, control and personal transitions which are within their reach. I saw this happening to those we work with but I didn’t see when it was happening to me.

Let me make absolutely clear that this is in no way a negative commentary on the NHS and the fabulous doctors and nurses. We all agree that we can never repay the debt of gratitude we owe to them. What I wish to reflect on is system-led responses to human situations and the effect these have on all people locked within those processes – including fantastic frontline teams.

I suffer from a medical condition that prevented me from becoming pregnant. My medical records described this as ‘failing’ to get pregnant. I was ‘unresponsive’ and I had ‘abnormal’ test results. I was categorised as infertile. All negative, derogatory and labelling language which is accepted as part and parcel of fertility conversations – and medicalised language in general. My doctor explained that it was ‘just language’ which they ‘had to use’ and he didn’t see my situation as anywhere near as hopeless as it sounded. But seeing myself described in such negative terms felt like a physical blow in an already emotionally painful situation.

At the ripe ‘old’ age of 33 I became pregnant and the immediate happiness was somewhat undermined by the term ‘geriatric mother’ which was added to my medical records (‘Sorry – it is just a standard term. We know you are not geriatric at 33’). I was immediately categorised as ‘high risk’ due to my medical history despite being the fittest I had been in my adult life. From then on, every conversation I had with a doctor or nurse, or even the doctor’s receptionist, started with me having to recant my full medical history without any consideration of the effect this might have on my mental wellbeing. In return, I was told what tests, medicines and interventions I would have rather than being asked what would help me or what I might like to do. There were no choices, only the best ways to ‘manage’ my pregnancy.

It was all done with good intentions; the NHS were going to throw the kitchen sink at me to ensure a safe, controlled, happy ending to my medical journey. And I began to accept that reassurance, along with all the labels and interventions that came with it. I started to act as if I was ill, rather than pregnant. I accepted that the services were in charge because, after all, I had ‘failed’ to get pregnant to begin with so what did I know about anything? People wanted to help me; they wanted to manage my risks for me. It seemed for the best to let the services take over when I wasn’t at my strongest.

At an emergency scan, which was automatically triggered by my high-risk status, I met a wonderful midwife who opened my eyes to the fact that I was travelling through a system. She explained that I was not being measured against any of my personal attributes. My pregnancy ‘success’ was being measured against national averages. The extra treatment had nothing to do with me as a person because the system is not designed to see individuals. She apologised because, in all likelihood, I would be referred to see her again but if so, I should remember that I was a person overcoming previous medical trauma quite successfully and I could decide how I wanted to proceed.

The flood of relief and hope I felt is indescribable. I had forgotten that I was an individual in charge of my life. I had forgotten that I was pregnant and not ill. I had become comfortable in the new, medicalised community of the doctors and nurses I saw at the emergency appointments and I had forgotten the wider community of support that surrounded me. I had lost myself temporarily in the system. But thanks to this wonderful midwife, who took a person-led, humane approach, I was back.

My son was born two weeks before full lockdown was implemented. I was told to start shielding the week we took him home. And that was it – no system. No midwife visits, no health visitor, no 6-week check-up. From all to nothing. The system is so large and complex that the ability to adapt quickly to changing situations and personal circumstances was impossible despite the best efforts of individuals to try to keep some form of personalised support available. I could hear the frustration of caring people who wanted to offer more individual support relevant to the unique situation but who were restrained by the lack of flexibility to utilise options such as Zoom to respond in real-time. Even in such unprecedented (sorry, I said the obvious again!) times, Midwives and Health Visitors still had to follow the same mandatory schedule of contact and standard checks, responding on a risk measurement basis rather than on an individual level. And this was hitting them hard too – I know this because they told me during our limited contact. They do their job because they care, and the small elements of individualised care they can offer during face-face visits was gone leaving just ‘the system’ in its place.

I owe NHS staff so much which is why I want to acknowledge the burden of systems that they and most frontline teams have to navigate every day. Everyone I met had nothing but good intentions for my health and that of my baby but they could only help within the constraints of the system;

  • The deficit language they have to use because it is recognisable
  • The pathway of standardised responses they had to send me down because it was the only way for me to access some of the resources I needed
  • The risk assessments they are mandated to carry out on everyone and the standard triggers for indicating high risk based on past experience
  • The lack of a person-led or active response they can provide because the current system cannot accommodate it

The problem is the system response, and the systems damage this creates, for all of us who want to work with people experiencing tough times so that they can transition to achieving their aspirations.

It is the culture – the language of deficits, the process-led policies, the hierarchical structures, the lack of autonomy to provide a human response and choice.

It is the focus on the wrong outcomes – the way people are measured and evaluated, needs and risks and hard outcomes defined by the system being the primary objective over personal achievement.

It is the approach to working with people within this environment – ‘fixing’ people’s problems, prescribing and ascribing until you find the ‘label’ that fits, the label that captures the essence of that person’s problem and opens up the ‘right’ service pathway of standardised responses which segregates people from real-world experiences and opportunities.

Passionate New System Allies, who see the people at the end of service responses and understand the damage that can be caused, like the wonderful doctors and nurses who have supported me, can feel just as trapped by the system without the culture, approach and change in mindset to allow them to deliver a person-led response.

And this is why a paradigm shift in how the UK responds to people experiencing tough times is needed. Because we all experience the systems damage if things don’t change.

This blog was written by Ciara Killeen, PTS Quality Assurance Manager at Mayday. Intrigued? Why not read more PTS Blogs?

For us to keep sharing opinions and voices that may not always be popular or heard we need your help: 

House of Fun..?

Richard Boylan, PTS Coach, explores the impact of the use of labels and deficit language on people accessing help through a tough time.

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The learning

Transforming organisations through modelling person-led approaches continues to be necessary to bring about whole change as part of the wider systemic shift but it isn’t easy! Being part of the movement certainly helps to hold nerve so we can learn, adapt and grow and live more comfortably within the permanent space of discomfort that brings about change.

The PTS movement continues to grow. If these Wisdoms have sparked a fire in your soul and you’d like to join us, please get in touch for a chat or visit www.maydaytrust.org.uk to find out more.

9 of 9 The role of the organisation

“Balancing the new, emerging system of the PTS with old systems, old power and traditional hierarchies is incredibly hard.”

Working alongside PTS Partners, exposed how impossible it was to truly deliver ‘person-led’ approaches within a deficit system, including within traditional structures of organisations. This was an extremely critical point of learning for the Partnership. Each Partner was trying to deliver the PTS and system change within a wholly different set of circumstances and challenges.

Mayday was able to transform itself towards a person-led approach in such a radical way because of a committed Board of Trustees who had a healthy appetite for innovation and risk. Combined with a strong leadership team who focused fully on the vision, an organisational culture that supported prototyping, failure and risk. Motivated and mission-driven teams could then develop. This also required the ability to invest reserves, commitment from open-minded funders and investors who are willing to learn in partnership, not hold us to account against set performance targets.

Integrating systems change into the overarching organisational strategy is hugely important to keep it front and centre and not an optional pilot project. This helps to protect the PTS from wider organisational changes and the pull of survival over the mission.

If organisations are to ensure that they don’t become another part of the deficit system or another barrier for change, they have to be brave, listen and adapt alongside the people they work to be genuinely person-led and part of the paradigm shift that is needed.

8 of 9 Principles vs framework

“Joining a movement is important to get others to listen. It gives individuals the strength to have a voice and do something.”

The PTS is a dynamic mechanism for individual, organisational, cultural and systemic transformation.

As such, it is based on a strong vision and set of unifying principles which allows partners to be guided by the fundamentals of the approach, whilst adapting to the local context and constantly learning from the frontline.

The nature of the partnership is to remain bespoke because this felt like the right way to ensure the organic development of the movement without suffocating what emerges through restrictive, mandatory processes. This allowed the individuals and organisations to apply the PTS to their unique contexts and make sense of what it was showing on their turf.

Being part of a collective helped to leverage credibility to have those challenging discussions and share the wider impact. Having individual ownership of the agenda to learn, reflect and influence ensured the nuances remained personal and not a blanket narrative which created the opportunity to develop independent solutions which informed our wider strategy.

Partnerships focused on mission, with a culture of openness, honesty and a healthy appetite for risk lend themselves to the real-world nature of prototyping and emergent new systems.

7 of 9 To disrupt or not to disrupt?

“I worry that being disruptive would actually, at this point, be counter-productive and be seen as a little antagonistic.”

When referring to disruption, it is important to note that the approach is to ‘influence through doing.’ Rather than trying to convince, change is modelled and what emerges is shared to show the impact of person-led, transitional and strength-based work that constantly questions and challenges the status quo. This is done in a supportive way, coming from a place of understanding the pressures that people are under as they operate within the current systems.

The language of disruption can feel like a difficult one to navigate because it may be interpreted as hostile rather than collaborative and inclusive. This can prevent people from feeling confident to challenge both internally with other departments and externally with commissioners, funders or other providers.

Building trusting relationships is at the core of being able to ‘influence through doing’ so that the impact of the work can speak for itself through sharing lessons learned in a congruent and collaborative way without the need for campaigning and convincing.

Working in this sector, we have seen firsthand that the system is failing and will continue to do so without radical change. This is not the fault of any one individual. However, we all have a responsibility to listen to people who have or are encountering tough times and to recognise the unnecessary systemic barriers they face.

Being comfortable with the uncomfortable is the reality of being able to influence change. Being humble and understanding as well as being positively disruptive don’t have to be mutually exclusive.

6 of 9 Data. The evidence

“We just want to be doing a good job and be able to say what we do and why we do itwith conviction.”

The PTS data set has developed to capture the internal and external assets of each individual through an asset development survey. The intention is to only capture hard outcomes that naturally occur and don’t require deficit conversations or measurement.

Over the three years, the PTS Partnership as a collective has worked with 1700 individuals; 91.5% of those with a housing requirement have sustained accommodation, and 33.3% have engaged in employment, education, training or volunteering. Through the WEMWBS survey, 61% have increased their wellbeing. Through the Asset Survey, individuals’ total assets increased by 4.5%.

Through analysing the data, it was found that people have higher internal asset scores (psychological) than external assets (sociological) indicating that it is often external situations and systems and not an individual’s confidence/self-belief that has the biggest impact on people’s situations. Focusing on building positive relationships and a purpose is key.

The vast range of asset scores that people have shown illustrates that there is also no correlation between ‘complex needs’ and individuals. Traditional assessments and data profiles don’t capture or illustrate what people can do for themselves.

People chose to attend an average of 20 coaching sessions, but on an individual basis this varies greatly depending on what the person feels they need. This proves that time restrictions or dedicated support hours specified within contracts are not realistic. Offering unlimited time to access a PTS Coach isn’t as unaffordable as first thought. The average take-up of 20 hours of coaching reflects previous Supporting People funding.

Where services aren’t the default response and time for support is not specified, people go on to thrive and achieve stability, sustainable networks and real-world solutions for themselves.

5 of 9 Comfortable funding or impactful investment?

“It doesn’t matter how many people believe in it – if things don’t change at a funding and local authority level, we just can’t get a grip on it and it feels like we’re treading water.”

The person-led, relational and human nature of the PTS lends itself to trust-based investment as opposed to traditional ‘fundraising’. It requires individuals within funding bodies to invest in the principles, to come on the learning journey with us and to allow the money to follow the person, not predetermined outputs.

Packaged up projects and programmes don’t fit this approach so securing funding within a traditional funding environment can be a challenge and it can feel like a choice between compromising the approach and organisational survival.

Success was seen where commissioners, social investors and, predominantly, independent trusts believed in the principles. They were willing to do something different and entered into a new power dynamic where learning, honesty and the freedom to reflect together to bring about change was prioritised. As one funder said, ‘we are not funding your organisation, we are investing in you as individuals and buying your learning.’

Gaming for resources is still the predominant funding culture and it was difficult to set a balance between maintaining the fidelity of person-led work against the need for organisational survival. Seeking forgiveness, not permission in areas where organisations had a monopoly on delivery was not preferred, but wasn’t uncommon.

For the PTS and other person-led approaches to become mainstream, it is evident that there needs to be a fundamental shift in the funding/commissioning practice and culture to allow for trust-based giving that follows the realities of people’s lives and for learning to be a core driver of success.

4 of 9 Culture eats strategy for breakfast

“Only when organisational culture changes can the PTS have the autonomy and understanding it needs to have a real impact.”

Mayday saw that culture change is absolutely key for person-led work to be able to take place and have an impact. Where a learning culture was in place and the PTS was prioritised as a mechanism for uncovering systemic barriers, a shift towards more strength-based thinking and wider practice took place.

The PTS Partnership, as a collective, was able to share examples of change and difference and utilize the weight of the collective evidence and impact to influence through the doing.

PTS Coaching Teams needed to be free to undertake a significant amount of ‘unlearning’ and questioning of what had previously been embedded as ‘best practice’, traditional ways of working with people. Their role demands a much greater level of autonomy. They are required to challenge their own practice, their colleagues and the organisation to effect the changes that people and frontline teams need.

For this to work, the culture of the organisations needs to shift to accommodate learning. This starts from the bravery to recruit the right people and to allow PTS Coaches to take the lead so that they are working for people and not for contracts or organisational blanket policies. Investing senior level time into learning and adaptation helped PTS Coaches to avoid falling back into default traditional practices.

Creating the environment for the PTS to work at the grassroots and adapting to the new learning that emerges leads to much greater impact for people we work with.

3 of 9 The asset-based bandwagon

“The approach gets diluted as everyone says they are doing strength-based work without understanding the level of change that’s really involved.”

One thing that really stood out was the difference between saying you were doing something and really doing it.. The PTS has been developed as a whole framework for change, which requires a huge shift, not just in the delivery approach, but in data capture and measurement. HR processes and recruitment practices, income generation and marketing, how organisations listen and learn from the grassroots to inform wider strategy, and everything in between

The PTS is an approach, not a service model. Committing to this and making yourself and your organisation vulnerable to unlearn what you thought was best practice and re-evaluate every aspect of your culture and values is a personal journey, not just professional.

Articulating this, however, can be a struggle. To get across the difference to other providers, funders and commissioners that this way of implementing strength-based and person-led work is evidence-based, takes a positive approach to risk and is more respectful for people is tough; especially when many are unaware of the ripple effect that takes place once power is placed with Practitioners and the people they work alongside.

In response, the Partnership informed and developed the PTS Accreditation which captures the vast nuances of learning experienced by each organisation. This mark of fidelity represents that the approach, culture and willingness to positively influence through doing was person-led, transitional and strength-based and at the core of an organisation’s mission.