4 of 8 An impossible situation

“Living in a hostel is no life. It doesn’t help with my depression. The atmosphere feels like a graveyard in there.”

Almost without exception, the move from the streets into a hostel, or from a hotel to a hostel was negative, many people felt it was safer to be on the streets. In hostels, people reported being surrounded by drugs and alcohol, constantly exposed to noise, and very little privacy.

People who spent time in a hotel during COVID often shared that it was an insight into normal life and what ‘normal people’ get to experience. In hotels, people felt they had a space to think and start looking to the future. In stark contrast, those who moved into hostels said they could only think of how to escape the noise and chaos which came from that form of accommodation. People spoke of the challenges of living alongside people who are all going through tough times.

“It becomes impossible to avoid people. Everyone in there has their own stuff going on. It’s crazy. It’s hard to move forward when you’re surrounded by chaos.”

 “The hotel room was small but I liked it there, it was quiet, I could get some peace.  They moved me to this hostel and I hate it, I want to move out.  There are many people living here, they are alcoholics and they smoke drugs. They are loud, they play their music loud and they fight a lot, I don’t know why I was put here, I can’t sleep at night because of all the noise.  I just want to get my own place, work and relax.”

“Everyone there takes drugs in there.  I’m trying to stay sober, but they are trying to force me to go. I’m going to end up back on the streets.  Those are my only options, on the streets people take drugs, but not everyone. I understand why they take drugs, it’s a way of escaping from your mind, but I can’t relapse.”

In some cases people feared being moved into private rental accommodation, losing another home and then ending up back on the streets – a cycle many people had repeated several times. They wanted COVID to be different, a fresh start and unfortunately, being moved into a hostel was the opposite.

“I lived in a house for 10 years, had a job. COVID changed that. I went back to them for help, they remembered like they weren’t surprised to see me again. The familiarity was disheartening. Nothing is going to change for me.”

Aside from being placed in hostels, several people shared that the emergency accommodation they were given was unsuitable and often dirty, damp and unsafe.   “Two mice ran across my feet, it was an unused building.”

3 of 8 Stripped of control

“I’m being told that I have to go to a hostel, I really don’t want to go. I know I will relapse. Everyone there takes drugs. I’m trying to stay sober, but they’re trying to force me to go.”

The People the team spoke to both on the streets and in hostel or hotel accommodation expressed that the little control they had over their lives had been taken away during COVID. They were told where to go and what to do and often felt unheard. There were many examples of there being a response to the crisis, rather than the individual, and in most cases, this resulted in people leaving or refusing a space in a hotel or hostel.

“Yeah, they offered me a room in Battersea but I’ve got no money to get there. My doctors are here, my script is here – I don’t have a choice but to stay here. I told them, but I suppose they did what they had to do and it’s my problem now. I was scared, everyone was scared.”

“The window was broken in my room. Security didn’t believe me. Like I’d make something like that up.”

Adjusting from rough sleeping to staying in a hotel or hostel was a huge challenge for many of the people who spoke to the team. People often felt a greater sense of isolation than they had experienced on the streets. In many cases people were moved to an entirely new area which created additional barriers, such as, people having to travel to their registered doctors, networks and being cut off from resources that they had previously used to survive.

“They gave me a room in a hotel. It was miles away. I was lonely, everyone I know is here. I didn’t know what was going on, how long I was going to be there, so I came back here. It’s quieter, less noise than before. I think lockdown was for other people.”

In other cases, people seemed to fall between the gaps, and left no other option but to take control of their situation. Seeking out places to self-isolate, which were often unsuitable and inhumane.

“When I called the night shelter to say I was coming back and that I had been ill they told me I shouldn’t come back and that my space had been given away.  They threw my stuff away. I am so angry.”

“I knew of a place so I found a broken window at a swimming baths and isolated in there.  My friend who is also homeless would bring me food, sometimes from The Passage.  One night I was really bad, I couldn’t breathe properly, I managed to get my friend to call an ambulance.”

2 of 8 An uncertain future

“I’ve been here for two months when I was told I would only be here 28 days. I’ve had flat viewings, I was even accepted for somewhere, but nothing came of it.”

Like everyone during COVID the people the team spoke to struggled with the level of uncertainty the pandemic created. However, for people rough sleeping, living in hotels and hostels, this was magnified. Many people felt nervous moving into accommodation as they were unsure how long they would be there and where it would lead.

“I’m in a hotel still, tomorrow I’m going to another hotel in Camden. I should be able to stay there for around 2 months and then we will see what happens.’

In some situations, people felt the accommodation, such as hostels, was having a negative impact on them and they feared becoming trapped for a long period of time.

“They said it’s only for a short time, but I know someone who has been there seven months, that isn’t a short time. I’m going to end up back on the streets.”

Once people had moved into accommodation communication with staff often broke down, resulting in heightened anxiety about the future. Many sympathised with the staff, as they seemed to be as unsure as they were, but over time this often turned into frustration and resentment.

“I was in a hotel, they kept moving me every two weeks, I don’t know why; there was not trouble or anything. Then one day they kicked everyone out, no warning. Now I’m back on the street exactly where I was before.”

“I left the hotel last month, I’m in Stratford now sharing a flat with 4 other people. I didn’t have a choice about where I was moving too, I’m not familiar with the area. I’m hoping I’ll be able to move somewhere else soon.”

A feeling of stability where people can settle and create a home is what a number of people longed for, but instead one of the few options available is private renting which people remain fearful of due to the uncertainty over the length of stay.

“They’re talking about moving me on to private rented but I don’t want that, I want a studio council flat. You hear bad stories about private, it’s expensive and there’s no stability. If a landlord decides to sell you have to leave. I want a council flat for the stability.”

1 of 8 A hotel room in a time of crisis

“COVID has brought my life together and I’ve been handed help that I never got before…. I’m 68 years old and have been on the streets 5 years…”

Of the people who Mayday spoke to who had moved into a hotel, many had a positive experience and were offered help quickly that wasn’t available to them before COVID. Experiences varied across hotels and locations, but the connection to what some people described as ‘normality’ appeared to have a positive impact on wellbeing.

“Quarantine has been good for me, I’ve been living in a hotel. I didn’t particularly receive any help before, I lived on the streets for about 6 months.”

For some people the sudden and extreme change provided an opportunity to reconsider their life and to make a change, believing that change was possible when previously it hadn’t been.

“COVID kicked me up the backside to come inside. Coming from prison, I was already inside, but this is different. I would never have believed a year ago that I would be inside today. I’m happy to be inside now, I’m feeling healthier.”

For a small number of people moving into a hotel resulted in moving into more permanent accommodation, this was seen as a positive move, although people expressed anxiety over what would happen after this point.

“I went into a hotel, it was fine. I worked with Connections already so they put me in a hotel straight away. I was there for 3 months. I’m now in a studio flat from the council where I can stay for three months. After that who knows.”

People expressed confusion and anger as to why they had no choice but to sleep on the streets before, for years in some cases, and then suddenly, due to COVID, many people were given somewhere safe to stay.

“Before we weren’t important, left outside. Then all of a sudden we’re in. It’s only because they thought we might make them sick. As long as they’re ok.”

“It was as if we weren’t human, homeless people are not seen as human and no one cares about us.”

An Introduction to Wisdom from the Pandemic

In July 2020 Mayday was asked by Westminster City Council (WCC) to capture people’s experiences of lockdown during COVID-19; specifically, people who were sleeping rough, offered a space in a hostel, hotel or sought another solution.

Mayday put together a team of seven people who went to London to strike up conversations with people who were on the streets, all of whom were happy to talk with us.

The Wisdom methodology is focused on unstructured conversations in places that people feel comfortable talking. With implications on COVID-19, this method was adapted and social distancing measures were put in place when required. Teams also ensured that everyone was comfortable in face to face situations.

The Mayday team carried out a total of 60 conversations in the Westminster area during July and August in 2020. The conversations took place over the phone, face to face and via email. The following document captures the main themes which were identified from what was heard Conversations were initiated with a single question – What was your experience of lockdown during COVID-19?

Supported and temporary accommodation will not end rough sleeping by 2024

Why?

You can’t end rough sleeping with a temporary solution. Even during an international pandemic when the doors to hotels and other forms of accommodation were opened, some people still feared the system that was supposed to help them so much that they chose to remain on the streets.

Supported and temporary accommodation doesn’t cut the negative cycle of people returning to the streets and services. In 2020/21 at the height of the pandemic and the ‘Everyone in Campaign’, London saw more people returning to rough sleeping than it had seen in the last four years. This equated to nearly four people every single day, returning from services and systems that had failed them – this figure shockingly makes up a third of the total. (Greater London Authority (GLA), Rough Sleeping in London, Chain Annual Report, Greater London, April 2020 – March 2021)

“I do know a few people that didn’t want to go inside. Being on the street is a desperate thing, it’s not a choice.” 

Sam, rough sleeping on Oxford Street, Wisdom from the Pandemic

Council responses to a freedom of information request by the charity Shelter suggest only 23% of those helped through the ‘Everyone in Campaign’ had moved into settled accommodation – somewhere they could stay for at least six months – as of February. Shelter termed settled accommodation as accommodation where people had a right to be. So rightly, forms of temporary accommodation such as supported accommodation, hostels and those staying with friends or family were not included. (Shelter 2021, Everyone In: Where are they now?)

Everyone In was a phenomenal response to an international health crisis, it was not a sustainable response to a national rough sleeping crisis.

Mayday Trust’s latest listening enquiry, Wisdom from the Pandemic (carried out in London during July and August in 2020), clearly demonstrates that, for some, the COVID response resulted in a fresh start, an opportunity for people to move on with their lives. However, for others it was another example of the system failing; people being pushed into large hostels and shared accommodation, people expressing feelings of being out of control, scared and isolated.

“COVID has brought my life together and I’ve been handed help that I never got before…. I’m 68 years old and have been on the streets 5 years.” 

Kareen, outside the Portrait Gallery, Wisdom from the Pandemic

“Living in a hostel is no life. It doesn’t help me with my depression. The atmosphere feels like a graveyard in there.”

Gemma, outside Joe and the Juice on Oxford Street, Wisdom from the Pandemic

“I’m being told I have to go to a hostel; I really don’t want to go. I know I will relapse. Everyone there takes drugs. I’m trying to stay sober but they are forcing me to go.”

Richard, begging on Victoria Street, Wisdom from the Pandemic

Negative experiences of living in temporary accommodation, such as hostels, are supported by a report carried out by the New Economics Foundation (NEF), which found that people living in insecure accommodation experienced worse or diminishing positive outcomes when compared to those with secure accommodation, who were given the opportunity to live independently.

Respect and dignity are protected under the Human Rights Act 1998 and are absolute necessities for supporting people through tough times

So, what should we be doing?

Dignity and respect should not be a luxury afforded to those that society deems worthy. Counter to this, those going through the toughest of times benefit most from being treated as people, rather than problems.

The answer to ending rough sleeping is not more money, but to think of ways to reduce service intervention and service dependence. Further investment into an already expensive system that isn’t working, into hostels and supported accommodation that people do not want to live in doesn’t make sense.  This is why we must move away from commissioning into siloes for problems and into commissioning for people. If you have met a ‘rough sleeper’, you have met one ‘rough sleeper’, each person wants and needs something different, we must develop a system that affords the same choice, autonomy and access that you and I expect for ourselves.

“I’ve become more independent in a way of I can do more things for myself rather than other people doing them. I feel happy with my family environment.”

Interviewee working alongside a PTS Coach, NEF Report 2021

The report by NEF includes an in-depth analysis of what happens when you respond to people going through tough times such as homelessness in an entirely different way using the Person-led, Transitional and Strength-based (PTS) Response.  Choice underpins this. Instead of being forced down set pathways, people were able to choose the support they wanted at a time that worked for them. The focus was placed on people’s strengths, passions and interests, rather than problems. People were encouraged, rather than ‘fixed’.

The research from NEF shows a correlation between being treated with dignity and respect and a person taking positive actions. When an environment was created where people had choice and control over their lives people reported that they felt encouraged to achieve their goals. Still, importantly they did not feel pressure to make changes faster than they were ready to. Furthermore, in direct comparison to other services, respondents described their PTS Coach as speaking to them, “like a human being” and meeting them “where they were” (physically, as well as mentally), rather than having to jump through hoops to get something done. As a result of this, people were able to progress positively with their lives in a sustainable and independent way.

“The way he encouraged me then is still with me now. And I still intend to get on the courses I had planned. He’s given me the determination to do it and the belief in myself that I will get this sorted.”

Interviewee working alongside a PTS Coach, NEF Report 2021

“They don’t judge you on your past. It’s about what you are now and where you want to go forward.”

Interviewee working alongside a PTS Coach, NEF Report 2021

The media and wider societal perception of homelessness, as well as the relationships between people accessing support and those offering the support, are also key to positive change. Mayday’s Wisdom from the Pandemic heard that many people felt that they were seen as subhuman, a problem or weak, when people found out they were rough sleeping.

“It was as if we weren’t human. Homeless people are not seen as human and no one cares about us.”

Mo, Trafalgar Square, Wisdom from the Pandemic

“Before we weren’t important, left outside. Then all of a sudden we’re in. It’s only because they thought we might make them sick. As long as they’re ok.”

Faye, Embankment Station, Wisdom from the Pandemic

When the focus is put on building a positive relationship with people, something which is often seen as a luxury in the current Social Care system, positive change can flourish. During interviews carried out by NEF, people working alongside a PTS Coach described their relationship as trusting, empowering, supportive and non-judgmental. Respondents explained they felt heard, and the relationship had a good impact on their well-being and confidence. The data backs this up, those that positively engaged with a PTS Coach improved their life satisfaction scores to that of the national average, up from before they worked alongside a PTS Coach.

“I’m not so moody all the time. I can do more stuff because I’m more confident and happier.”

Interviewee working alongside a PTS Coach, NEF Report 2021

“I like me a bit more. I’m a bit kinder to myself. I don’t blame myself when it isn’t necessary.”

Interviewee working alongside a PTS Coach, NEF Report 2021

“I have full responsibility for my life now.”

Interviewee working alongside a PTS Coach, NEF Report 2021

A practical response to the Housing Crisis

What action can we take?

Finally, we must consider housing, we cannot escape the fact that there is insufficient, genuinely affordable housing available to people that need it. A medium-term option could be to improve access to private rented accommodation. Shelter stated for a briefing in this very Hall in 2019:

“Firstly, the government must immediately lift the freeze on Local Housing Allowance (LHA) and restore rates to at least the bottom 30th percentile of the market. Secondly, the government must invest in significantly more social housing.”

The government listened two years ago and did restore rates. However, they have immediately frozen again and people are now having to live with the negative consequences of this with limited accommodation options and landlords being forced to evict tenants as their LHA doesn’t cover the cost of rent. People going through tough times continue to experience these challenges, so why are we not removing the benefit cap, removing shared room allowances and making the LHA fit for local purpose.

“I don’t get violent no more. I don’t get angry. I don’t get put in them situations now I have my own flat. I’m not aggressive I’m happy. I have safety. I have a secure home. I only let in who I chose to let in.”

Interviewee working alongside a PTS Coach, NEF Report 2021

The standard of living accommodation, rogue practices of landlords and inappropriate living solutions are yet more barriers that people going through tough times have to overcome. What would happen if we strengthened laws around the prosecution of rogue landlords, putting a stop to continuous reoffending and allowed people to freely choose where they live? Perhaps people would have a better experience and would be able to move forward with their lives.

“They gave me a room in a hotel. It was miles away. I was lonely, everyone I know is here. I didn’t know what was going on, how long I was going to be there, so I came back here.”

T, Westminster Tube Station, Wisdom from the Pandemic

“They’re talking about moving me on to private rented but I don’t want that, I want a studio council flat. You hear bad stories about private, it’s expensive and there’s no stability. If a landlord decides to sell you have to leave. I want a council flat for the stability.”

Ivano, Waterloo Bridge, Wisdom from the Pandemic

So what next?

We must see a commitment from this government to explore new ways of commissioning services, pushing local authorities to respond to their communities and their constituents and no longer commissioning services based on what funding stream they can apply for or what problems they wish to fix. People going through tough times must be able to decide what support they want and need and the state has to be ready to respond.

All public references should be linked, but if you spot anything please let us know.

Watch the Westminster Hall Debate on Rough Sleeping (Wednesday 8th September 2021) here 

Change

I recently hit the milestone of 10 years at Mayday and I have come to accept that there may not be the ‘homeless revolution’ I had once envisioned. That’s fine. My time at Mayday has taught me that my view is one of many and the direction to challenge the failing homeless system needs to be led by people who are experiencing it, who are often trapped within it and who want to act.

We may be lacking a revolution, but I’m happy to have seen the start of a gradual acceptance in the sector that current systems are not working for people and might be a contributing factor to why so many people remain in services for so long. However, I do question whether the sector and the public recognises the true extent to which this is real, but the fact that a tiny door has opened to allow for greater awareness and maybe even change, can only be good news.

On that positive note and to coincide with the theme of change, it is time for me to officially share that I will be stepping down as CEO of Mayday in August. It’s no secret that Mayday has been through some big changes since I took on the role in 2011. I don’t feel the term ‘organisational transformation’ does the years of uncomfortable realisations, challenges and learning, justice.

I’m leaving an organisation that is courageous, passionate and embraces opportunities to learn. An organisation that is led by its mission and the people it works alongside. I do not doubt that this collective of activists will continue to go against the grain, challenge the status quo and strive for a system that works for people going through tough times.

For me, I have no intention of giving up on my activism, so this isn’t a goodbye, more of a see you later!

x Pat

Legs on a Snake

Many years ago, when I was a lot younger and had more hair, I remember being told an old Chinese proverb, and as I sit here today in my comfy thinking chair, reflecting on the current state of systems designed to support those going through tough times, I am reminded of that story….

The master of a martial arts school, realising that his life was growing short, decided it was time to decide which one of his two best students would become his successor and take over the school after he was gone. Both of his students had their own strengths and flaws so who to choose was exceedingly tricky. In the end, the master decided on a simple competition to decide the outcome. He led his students down to the beach and after offering each of them a sharpened stick, outlined the test.

 “The test is simple, you will each draw an animal in the sand and the first one to finish and have their animal identified by me, will win.”

 The two students immediately picked up their sticks and started to draw in the sand feverishly. The first student quickly drew an ‘S’ shape and stepped backed, feeling pleased with himself at how easy and obvious the test was. But after looking over and seeing his rival frantically still drawing, brow furrowed in concentration, he started to panic.

 ‘What if I am wrong?’ Thought the first student, ‘what if my snake is too simple and won’t be recognised for what it is?’

 Fear gripped him and he cursed himself for being a fool. Nothing this important could possibly be decided by something as simple as a squiggle in the sand. With this, he picked up his stick again and started to draw legs on his snake. After starting the third leg, the second student stepped back, stating he had finished. The master walked over and after studying the drawing, correctly guessed the animal and proclaimed the second student the winner and his immediate successor.

 After the competition, the master asked the dejected student to walk with him along the beach. After a short distance the master asked the student why he had lost. The student replied that he had been too slow in finishing his lizard. The master paused and explained that he had not lost because he had been too slow but because he had added parts that did not need to be there. The master went on to say that he recognised the drawing was a snake as soon as it had been scratched in the sand, but the fact the student had believed it to be too obvious and simple an answer is why he had failed.

Now, that is a mighty fine story and for those of you at the back who may have been skim reading (I will hold back my indignation!), the analogy “adding legs to a snake” simply means that you are doing unnecessary work that is actually ruining your result.

At this moment in time, this is where we find ourselves. Gaming for resources, measuring outcomes, ticking boxes, putting people in boxes, data sets, case studies, reports, anything and everything we can to ‘prove’ what works best. All of it, ‘legs on a snake’.

By now we have firmly established that those going through tough times are the best people to figure out what they feel works best for them. We are just here to walk alongside them and provide that space, that safe bubble where they can engage in conversation and recognise how they can best go about making it happen.  Unfortunately, the system is not geared up for this. You simply cannot walk alongside someone and that be it. There has to be a final destination, an outcome, something that can be measured. Like monopoly, if you don’t pass ‘GO’ you don’t collect the money and unfortunately, that seems to be the true measure of ‘success’.

As the news depressingly reminded me just last week, we have been in austerity for nearly a decade, and with the prospect of another recession as well as the financial fallout of the current pandemic, I fear that this snake will soon turn into a millipede.

Written by Richard Boylan, PTS Coach in Northamptonshire. Read more like this?

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Solving the Wrong Problem

Andrew Durman, PTS Coach at Mayday Trust looks at the difference between being innovative and disruptive when working with people going through tough times.

Last year I embarked on a new challenge as I made the temporary move from being a Mayday PTS Coach, to becoming part of the team leading the New System Alliance, working to create a paradigm shift in systems available to people experiencing tough times. As part of my preparations for my new role I explored the topic of disruption, specifically linked to how we can positively disrupt within our roles on the frontline and as organisations. The aim of this disruption is to create real #systemschange.

It really got me thinking about the sector and the systems we work in. When you look at the statistics, reports, press, etc. around homelessness and other tough times in England, it’s clear that the situation is getting worse. Yet new approaches and innovations are being launched all the time and have been since I started in this sector 12 years ago, so if all this energy and money is being invested why are we still experiencing the same problems?

To get some answers I looked outside the proverbial box and turned my attention to the field of design. This is an area I often look to for inspiration and it didn’t disappoint – cue an article describing ‘The disruptive design method’ by Dr. Leyla Acaroglu.

It efficiently answered my earlier question, if we always look at something in the same way (in this case people going through tough times), we won’t see anything more and nothing will change. Instead, we will keep asking the same questions and doing the same things over and over again.

This isn’t anything new, in fact, if I think back to my University days where I experienced a very similar situation. As part of an assignment, I was tasked with looking at improving the design of the Maclaren Buggy. My idea (last-minute inspiration taken from a Simpsons episode) was to combat the issue of buggies becoming unbalanced from their handles being overloaded with bags (apparently children don’t like to travel light!), causing them to topple over. My brilliant solution came in the shape of support stands that would swing out to counterbalance and support the buggy, stopping it from tipping backwards – amazing!

I was immediately challenged by my tutors, who dared to suggest I was focusing on the wrong problem. Apparently, the right solution would be to find ways to stop bags being placed on handles in the first place such as providing suitable storage within the buggy; I was simply creating an unnecessary product. Focus on the source of the problem to avoid it being an issue in the first place – sounds simple enough doesn’t it, yet why as a sector do we continuously focus on the symptom rather than the cause? We obsess over signposting people into appropriate services but fail to acknowledge or reflect on our role in that person’s situation and the impact the system has had on them. I have no idea if the Maclaren buggy made it through its tough time, but I haven’t witnessed any toppling incidents recently so I assume it was a positive outcome.

This theory also resonates with learning gained from the changes Mayday Trust made following the creation of Wisdom from the Street, an enquiry which captured the voices of people experiencing homelessness. After this deep listening and reflection, Mayday turned its back on the traditional deficit system and focused on developing the Person-led, Transitional and Strength-based Response (PTS), formerly known as the Personal Transitions Service.

Although successful, the development of the PTS also highlighted a different problem, something that had previously been disguised. Where the sector, including Mayday, focused on ‘fixing’ people’s problems, it was actually the system in need of some urgent attention. It was process-led, focused on deficits, segregating and dehumanising people. The system was causing harm.

Mayday has now joined forces with other organisations who recognised the same problem to form the New System Alliance;  A platform for individuals and organisations who feel there is something wrong with the systems encountered by people experiencing tough times. A space to listen, to be heard and to ‘do something’ – to create a total change in thinking and develop a new response, a totally new system led by people, not deficits.

When I reflect on Mayday’s progress I see the form of disruption shown in Dr. Leyla Acaroglu’s article. By creating a new person-led system which works for individuals going through tough times, the outdated deficit system and associated approaches will be obsolete – a great example of positive disruption creating real #systemschange.

So how can we as individuals and organisations continue to positively disrupt? Maybe it’s time to stop doing what you’ve always done and look outside of your own proverbial box!

Intrigued? Why not read more PTS Blogs?

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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?

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