Can Do Health & Care - Uncomfortable Truths Part 2

1 March 2024 CAN DO CAN DO Uncomfortable Truths Part 2: HOW effective are we at tackling the systemic injustice in our health and care system?

2 ICS System Learning: Uncomfortable Truths 1. Introduction 10 November 2023 WON’T DO CAN DO WeWON’T DO Injustice in WHY? UNDERSTANDING INJUSTICE HOW? TACKLING INJUSTICE WHAT? ENDING INJUSTICE CAN DO Uncomfortable Truths Part 1: WHY as system leaders we need to address culture to improve outcomes Professor Will Pope, Chair, NHS Suffolk and North East Essex Integrated Care Board. Councillor Craig Rivett, Cabinet Member for Public Health and Protection, Suffolk County Council Susannah Howard, Director, Integrated Care Partnership Today’s event is an opportunity to come together to talk about some really difficult issues, and we are looking forward to feeling uncomfortable, to engage in introspection and to have some great discussions. Our first Uncomfortable Truths event in November 2023 focused on WHY, as system leaders, we need to address culture to improve health outcomes. We concluded: We concluded that we need to come together to take effective collective action against injustice, and we started to explore the concept of rebellion against the status quo. Today, we consider HOW we should move forward, and we want to feel uncomfortable again. Within that we should think about how ambitious we can be: We don’t want to accept ‘good enough’, we want to accept the reality of injustice and to be as ambitious as we can. We want to be honest about how successful our past efforts have been, and to be confident to raise difficult issues. We have Passion and the right People here today, now we want a Plan to take us forward. We know the right thing to do, but we still don’t do it. We don’t take the time to understand inequalities and poor experiences. We don’t do enough to create and value a diverse workforce. We don’t take responsibility for our action and inaction.

Part 2: HOW effective are we at tackling the systemic injustice in our health and care system? 3 2. Setting the scene David Akinsanya, Journalist and Campaigner I am a dream for the box-tickers: I am Black, mixed race, and gay. I was excluded from school, and had special educational needs. I was in care, I’m an abuse survivor, I am an ex-offender. I am a single parent, co-parenting on my own, and I am a traveller, I Iive on a boat, with a long line of travellers on my wife’s side. The point is that all of us are more than just one aspect, there are lots of things that people take note of when they meet us. The first impression most people have of me is my race. Growing up, I was exposed to racism from the National Front in the 1980s in Essex. I was beaten up at the age of 13 by five skinheads, they kicked me to the floor. Gerry Gable, the famous Jewish anti-racist activist who started Searchlight magazine, came to my rescue on that day. I even stayed close to people I know would harm me to survive, and that is how I became involved in criminality. I was in care, and the council placed me on my own at the age of 15 with no supervision or care, something that still happens to young people today. Today, as many Black men know, people will often not sit next to me on the train, even when it is full. We are seen as being more dangerous than white men, and research shows that when the police come to arrest us, they come in harder. People are scared of us, and this hurts me and the men in my community. We need to recognise that we all have our

4 | ICS System Learning: Uncomfortable Truths own prejudices. For example, my prejudice in the 1980s was Black Cab drivers, because they would never stop for me, but then I met one who I liked and respected, and realised I had to change my views. So I recognise my own prejudices and how to overcome them. I have used my lived experience since the age of 14, when I helped set up the ‘Who Cares?’ group in Essex. I set up ‘Black and in Care’ in 1986, the first time we sat down to talk about Black young people in the care system. I attend an annual conference on living in care, and some of the issues we talked about then are still the same today, and we need to feel uncomfortable about that. I try to challenge stereotypes. Most young people are in care for no fault of their own, but the stereotype is that they will end up in prison. However, the experiences young people have can mean these stereotypes come to fruition. It did for me, but if I had been supported it would not have turned out that way. Another truth is that the looked-after care sector is now an industry, and local authorities are having to pay private companies that are making huge profits. These resources could be better spent working more with families, and better understanding domestic violence and poverty, some of the drivers for children coming into care. Integrated hubs in areas of deprivation are the way forward. The Voluntary, Community, Faith and Social Enterprise sector make a real difference, they are more used to involving young people in the work that they do. Not everyone is on this journey though, many people don’t share the same views we do and there are Black leaders facing horrendous prejudice. My father came to this country in 1947, he spoke three languages, but it didn’t matter how educated he became, people still mocked his accent; and we still hear stories like this today. The data shows what is happening today, for Black women in maternity care, and Black men in mental health. At the bottom of that is racism. People like me with lived experience need a voice. How can we enable people to tell their story on her own terms, and we can learn from that? “I have been chatting to people like you for years – now we need less chat, and more doing.”

Part 2: HOW effective are we at tackling the systemic injustice in our health and care system? 5 How we need to feel more uncomfortable Melanie Craig, Suffolk Community Foundation This session is about establishing the injustice and looking into who is experiencing injustice. In the last year and a half I’ve had a very different experience to the rest of my professional career. I reflect back on my time in the NHS providing services at a vast scale for our populations. In order to be able to deal with that volume and that complexity, to keep up with changing needs and advancements in technology and clinical services, you have to create ways of coping. That tends to mean focusing on process and systems. I came up with shorthand ways to describe quite complex things, phrases, acronyms, and jargon which are actually only understood in the health sector. You’re not thinking about the communities or the people, you’re thinking about that shorthand phrase. For example, social prescribing is important to address the needs in people’s lives, which is not just their health, and we talk about system, planning, frameworks and terms of reference – all that is preventing really listening in and focusing on the individual. I find myself now in a role where I’m much more up close and personal into people’s lives and really seeing into the communities, and to say it’s been uncomfortable is a massive understatement. I’ve experienced a whole range of emotions: embarrassment, shame, guilt, regret, shock. Why did I not see this? What was I not doing? What did I not listen to? What did I not see? The level of injustice seen by the charities that Suffolk Community Foundation supports and my colleagues and peers in the voluntary sector is not talked 3. HOW much of the reality of injustice have we truly accepted?

6 ICS System Learning: Uncomfortable Truths about. In the world of healthcare, especially in management, you can spend all day in your comfort zone, not facing into all of the things that people are experiencing. We would be able to make more of a difference if we really faced that together. One of my early visits was to a drop-in for homeless people and food bank in wealthy Bury St Edmunds, and I found it humbling and emotional. I was told the furniture section is mainly used by international nurses who have just arrived, and suddenly recalled meetings from my previous career, where we talked about numbers of international nurses and how we can integrate them into the NHS. At no point in any of those meetings did we wonder about what they needed and how they’re getting on. That made me think, who else in that situation? My organisation raises money to give out fuel payments and this year we are giving payments to people earning up to £31,000, which will include healthcare workers. The scale of poverty is horrendous. On one of my routes to work there is an encampment where people have made their home living in a tent. There are people who have absolutely nothing, their children don’t have shoes, or toothpaste. We need to see big reductions in the number of people in our communities now relying on food banks living in abject poverty. What I’ve learned about domestic abuse has also really hit home, seeing the number of charities that exist to support people living with domestic abuse. People rightly say we must focus on mental health as well as physical health, but they are not two separate things. We should think about the person, what is going on for them, who they are, and what they need. Who is seeing this within the health service? It is those who are working directly with people, charities and primary care and GPs. I wish I’d created more space to hear not just from GP leaders about leadership, systems and processes but also from GPs about what’s going on in their patient groups that they are supporting, as they will see the issues and we need to address them.

Part 2: HOW effective are we at tackling the systemic injustice in our health and care system? 7 How we can learn from “Too Hot to Handle” Sharon Rodie, Suffolk & North East Essex ICP Team 1 TOO HOT TO HANDLE? WHY CONCERNS ABOUT RACISM ARE NOT HEARD… OR ACTED ON ROGER KLINE AND JOY WARMINGTON ‘Too Hot to Handle?’, a report by brap and Roger Kline, brings together key learning from survey responses from over 1,300 NHS staff, and several significant tribunal cases, to explore how healthcare organisations respond to allegations of racism. The report shows the health service is still falling short in tackling race discrimination, and there is a culture of avoidance, defensiveness, and minimisation of racism within NHS trusts. Arguably, many of the issues raised apply not only to racism but sexism, homophobia, ableism and other forms of discrimination. The report highlights typical examples of conduct that many people will recognise as racist: bullying, harassment, bias and discrimination, race-based jokes and generalisations. It also includes how people of colour are treated by colleagues and managers when carrying out their work: their competence and performance being questioned more than white colleagues, their ideas being ignored, not being offered career opportunities or choices, not being supported when a patient is racist, and calling people by another version of their name as it is considered too hard to pronounce. Common responses to staff raising concerns included denial, reluctance and refusal to accept racism as being at the heart of the problem, lack of empathy, defensiveness, gaslighting, and minimising the impact of the behaviours. Repeat offenders are protected by the organisation, and face few, if any, sanctions. As a consequence, staff do not raise the issue, they don’t believe things will change, and fear being seen as a troublemaker. Their concerns are valid: in over 40% of cases nothing happened, only 5% felt the problem was dealt with satisfactorily. There are also serious implications for staff retention - over 40% of respondents left their job as a result of their treatment. There are a number of ways in which people can report racism, but these are not always effective. When people report racism to their managers or HR, they find that investigations focus on evidence of deliberate discrimination, which ignores subconscious discrimination or bias. There is a lack of curiosity, looking at incidents rather than patterns and cumulative effects of behaviours. Complaint investigations can become adversarial, with trusts hiring legal teams or external investigators who whitewash and cover up racism. Managers can fail to understand the law, definitions or where the burden of proof lies. Unions can also be institutionally racist, and undermine or deter complaints.

8 | ICS System Learning: Uncomfortable Truths When nothing happens or the response is unsympathetic, staff lose trust in the organisation. In one tribunal, from 2023, an ethnic minority woman raised concerns about a male senior colleague making discriminatory comments. She was portrayed as an “aggressive loud ethnic female” and was later told by HR she should understand how that senior colleague felt as a white male, as she was “an ethnic female who could be seen as attacking him”. Examples like this show how both individuals and organisations can perpetuate and worsen racism. “Freedom to Speak Up” is a valuable way for people to raise concerns, but the responsibility remains on the victim to raise the issue, and that takes bravery. Ethnic minority staff already disproportionately experience bullying and discrimination at work and fear further ill-treatment; those with long term conditions do not feel safe to speak up; and internationally trained staff fear the consequences for their visas. As the report highlights: “leaders urge people who ‘feel silenced’ to speak up but instead of trying to ‘fix the silenced’ we should fix the system.” The report recommends that people change their understanding of racism – not just deliberate acts by ‘bad’ people driven by prejudice, but also systemic marginalisation and discrimination. As the report says, “racism operates through formal and informal habits and norms that subtly and consistently disparage, limit, and dehumanise individuals who are racialised as ‘not white’.” We must recognise our privilege accorded not only by race but also life opportunities. People who have not progressed might not be less competent, they may simply not have had the support others had. With no support, staff will not progress, reinforcing assumptions and stereotypes that minoritised people don’t make good leaders. We must commit to doing things differently. This means not being afraid to talk about race – fear of saying the wrong thing, guilt and defensiveness just perpetuate the status quo. We must be proactive, be curious, seeking to understand the issues and what lies behind. We must also be accountable, not only upholding the law, but also where there is minimising, cover-up or retaliation, holding those responsible accountable. Finally, we should carry on doing important activities such as board level champions and mentoring programmes, but we must recognise they will not change the status quo. We should also embrace transformation: tackling systemic racism, challenging our own beliefs and behaviours, being confident to work with difference, and responding to racism so that when it happens, people trust that it will be dealt with. In summary, we have not done all that we could, and those things we have done have not been done well. Let’s: • Stop tolerating racism in all its forms. • Give people their basic rights to be heard, believed and valued. • Be on the side of victims not the perpetrators of abuse. • Stand up for what we say we believe in.

Part 2: HOW effective are we at tackling the systemic injustice in our health and care system? 9 How it should be possible to live well with disability Councillor John Spence, Essex County Council In the mid 1980s when I came back from Harvard Business School, I realised my eyesight was diminishing. I was told in 1987 I’d get tunnel vision in my 50s; I had total blindness in 1990. Thank God for my faith, my wonderful wife and for the trust I had and the people around me. I was a senior banker and at the time the only blind people there worked on manual switchboards or in the mailroom. The personnel director told me I couldn’t manage people because I couldn’t see them in the eye. I had the strength and resilience to carry on, and the bank proved very good at giving me support. Life may have moved on a long time in the 30-odd years since, but the issues still remain. Discrimination may no longer be there in the overt way that it was. The legislation has helped, the culture has changed, people are much more likely to be made ready for the workplace than they were before. That’s very different from the mindset which recognises that every person has an ability to add value. In the world of disability everybody runs the race of life while jumping an extra hurdle. In the early 2000s we used to take blind undergraduates every year to do activities they hadn’t done before. We took the undergraduates out in boats and taught them to water ski, and they realised they could do things they’d been told they never would. Today we still see young disabled people who are not confident that they could live independently as adults. When you employ people are you looking at people and being aware of their disabilities and focusing on what they can’t do? Rather than their bravery and their aptitude and their flexibility in working out how they jump those extra hurdles in the race of life which will enable them to do so. We are jolly capable, those of us who do this race of life in this way. Explore it and please don’t think about what we can’t do, explore how you can release the talents that we’ve got in order that we can.

10 ICS System Learning: Uncomfortable Truths Finally, be a bit more considerate. Sending meeting papers out well in advance means I can go into that meeting giving reasoned consideration. I’ve lost track of the number of times I’ve been told it’s my fault that nobody thought about my needs because my eyes move about. I was involved in a ceremony recently where I was asked to make a statement in front of hundreds of people, statements which I could have learned if I knew I was required to make them in advance, but nobody thought to do so. “If you’re really going to be considerate, you’ll think about how people can access their place of employment. So many little things get in the way.” If you’re going to be an inclusive employer you will wipe your prejudices from your soul and not think about what the individual can’t do, but concern yourself about how they might be able to do, if you enabled them. And you’ll be considerate of those of us who are running this race of life jumping the extra hurdle, because you will proactively think about what we might need in order to add the greatest value to you.

Part 2: HOW effective are we at tackling the systemic injustice in our health and care system? 11 How much do we really learn from lived experience? Sam Glover, Healthwatch Essex Making people feel uncomfortable is in my nature. I call out things I don’t think are right. Recently I sent an open letter after some people had shared their lived experiences and didn’t feel heard. I sent the letter out and I provoked a lot of really uncomfortable conversations, uncomfortable in the best possible way. Some shared their own experiences, others said they felt they have not been listening properly. Suffolk and North East Essex ICS has always been quite forward thinking, and have always tried to look for lived experience and the user voice. We have taken some steps forward, but not enough, and sometimes we have taken a few steps back. One way in which we have taken a step back is that people in the system think that they only need to ask me to come to a board and speak about a specific issue to tick the box on lived experience. Or they ask in the middle of a planning meeting what lived experience I already have. With no notice, on that day I can only share my opinion. There might be a piece of work that one of my colleagues, or another Healthwatch, or the voluntary sector has done that I can bring to the board. But with time, I can ask my networks and the voluntary sector for their experiences and share them in the way that people tell me they want to. I don’t think anyone actively plans to disregard lived experience, or to make it as difficult as possible to listen to people. But they forget to send the agenda, or the meeting pack. They don’t share what the terminology means. It is difficult to challenge, when you are not the most senior person in the room. Some acronyms have different meanings in different settings. We use these terms as we are trying to get a lot of information across really quickly, we use them every day, and we use them because they show that we know something the other person doesn’t. But this disables people, makes them ‘other’ and ‘less’ as they are unable to join in that conversation. “We don’t think ‘user first’.” Most people come into health and care because they want to help people, to make a difference. We write beautiful policies, we engage with everybody, our colleagues, finance, estates, HR. We can spend a year working on a project we are proud of before we think, what is the user’s perspective? Then the users come in and say no, that is not my experience, and your plans won’t work for me. When you have poured your heart and soul into a project it’s hard not to feel defensive in that situation. How do we fix that? The first person you talk to is the person whose service you want to improve, and they need to be there at every stage – keep asking them if what you are doing is the right thing. At a recent event we brought along a person with lived experience and afterwards, lots of the audience wanted the person to tell their story again in different meetings. The person with lived experience made you feel something, and so you want others to feel that to, but it is challenging for that volunteer to tell their story even once. Making themselves vulnerable in that way and reliving that trauma takes an emotional toll.

12 | ICS System Learning: Uncomfortable Truths There is so much intent to want to do better but business-as-usual gets in the way. That makes me think about how much of the injustice we have truly accepted – we haven’t, as we don’t make enough space for it. How do we make this work we have just talked about business-as-usual? We don’t need jargon. We should be calling it out, talking in plain English, talking to be understood rather than talking to be the brightest person in the room. Let’s just stop asking people to write numerous reports and give long-winded answers to short questions. There are better ways to enable people to share their story. It is always more powerful to hear people’s experiences in the first person, and we have so much technology now. We record films and podcasts, where people can take a break if they become upset, we can include extra information and check people are happy with the recording before it is shared. In this way we can keep the raw power of people’s lived experience without re-traumatising them by asking them to repeat their story again and again. A person’s story may have made a big impact on you, but despite your best intentions, your competing priorities get in the way. But all that volunteer knows is that you made promises, and you didn’t tell them what happened. If you change policies or processes, let people know, let’s close that feedback loop. Finally, if you make a promise to people with lived experience, carry it through or don’t promise it in the first place. If you haven’t got the ability to make the change people say they want, be clear about that. People know that health and care is a big, complex system so let them know the parameters at the outset and be up front about the information you have, so people know what influence they do have to make change. “Feed back, respect, listen to understand not to respond, and be honest.” Comments

Part 2: HOW effective are we at tackling the systemic injustice in our health and care system? 13 Do we cherish people who ask ‘why?’ enough? We have a lot of leaders here who could give permission to people to ask ‘why?’ and permission to make the changes we know are right. In terms of racism, we are battling not just poor implementation of policy, but also society. Most of us don’t like talking about racism or want people to think they are racist, even though we do racist things. If we can get away from the fear of being seen as a bad person, and be open to talking about it and acknowledge honest about when we are racist, sexist, homophobic, ableist etc., we can make a start. It is for us to start role modelling that. I am struck by how everyone today has talked about the voluntary sector. Are we really co-operating with them, to understand what is really going on? Are we doing enough to help them? Are we giving them enough money and support to be able to work with them properly? We are at risk of churning out a lot of statistics on problems, and then not doing anything about it. Everyone has a vulnerability. As a GP I see people with huge vulnerabilities, and often those are not on the surface, such as economic vulnerability, or homophobia. It is an enormous privilege to be let into that vulnerability, we all need to recognise that people carry these burdens and act in kindness.

14 ICS System Learning: Uncomfortable Truths 4. HOW successful have our past efforts genuinely been? How we have tried to encourage health equality and equity Stuart Keeble, Suffolk County Council In exploring how successful our past efforts have been in tackling health inequalities, we usually look at the data. The reality is that life expectancy, which was plateauing before the Covid-19 pandemic, is falling, and inequalities in life expectancy are growing. It can feel as though these issues are too big for us to influence, but in health and care we can focus in on the opportunities we can create to influence three elements that can have a big impact on our residents: equality of access to services, experience of services, and health outcomes. We have done a lot to try to tackle health inequalities in access, experience and outcomes, most recently through the prioritising CORE20PLUS5. We have reported on the importance of tackling inequalities, created initiatives like the 100 Day Challenge, and dedicated funding such as the ICS’s Community Ambition and the Covid vaccine programmes. The Integrated Care Board now has specific targets in its Joint Forward Plan and a £3.9 million inequalities fund. But health inequalities are a systemic issue and need a systemic response. We should not rely solely on project funding, we need to embed inequalities as business-as-usual throughout everything we do. Cultural change is required to recognise that reducing inequalities is everyone’s job. People ask me, ‘What is the one thing we can do?’ but although I recognise that the system is under pressure, we must recognise that the issue is complicated, there is no ‘one thing’. “The one thing we can do is to help people understand how we can change our culture.” Some people believe that the focus should be on the wider factors that influence our health, such as housing and education. This is true, but we also need to focus on what we can influence, to take action in the areas over which we do have control. We need to integrate our work around what is important in people’s lives, but make sure we focus on what we can influence, making sure the ways we work

Part 2: HOW effective are we at tackling the systemic injustice in our health and care system? 15 and our services are inclusive. Are we understanding the reality of people’s lives in thinking about our waiting lists, or when we exclude people for missing two appointments? Our system contains many different people with different beliefs and ideas of what should be our priorities. Some people disagree on whether inequalities should be a priority, others believe they are treating everyone equally, but don’t recognise that some people can’t even get through the door to see them. Changing our culture to achieve equity and social justice is difficult, but we have to try, because the alternative is that nothing will change: This is a story about four people named Everybody, Somebody, Anybody, and Nobody. There was an important job to be done and Everybody was sure Somebody would do it. Anybody could have done it, but Nobody did it. Somebody got angry about that, because it was Everybody’s job. Everybody thought Anybody could do it but Nobody realised that Everybody wouldn’t do it. It ended up with Everybody blaming Somebody and Nobody doing what Anybody could have done.

16 | ICS System Learning: Uncomfortable Truths How we have encouraged more diverse leaders The late Raza Ahmed, August 2020 My name is Raza Ahmed, I’m a registered social worker currently working as a service manager in NHS mental health services. I have been asked to share my experiences as a child migrant and as a BAME person working in the NHS for more than 20 years. I came to the UK as a 10-year-old child from a remote rural village in Bangladesh. My father had been working here whilst the family remained in Bangladesh, and his plan was always to earn some money here and return home, which was never realised. Eventually he decided to bring the family over. Up until that point I had never seen the television, we didn’t have gas, electricity or running water. I had a very happy life though, and we were considered wealthy in relative terms. I had only ever seen a white person once in my life to that point, when a man came to the village with a clipboard. I didn’t pay much attention as a 9-year-old child. As Trevor Noah says we were too busy playing with elephants and spices when the British visited, and wish we had stricter border controls when the British decided to visit the subcontinent and Africa. Fast forward to 1983 when we arrived in the UK. I did not speak a word of English, I had no idea that there were stairs that automatically moved, doors that automatically opened when you approached. My vivid recollection of 1983 is that everything was so great. I had one year in primary school before moving onto high school. I was a high achieving primary school student in Bangladesh, you had to be because your parents paid a monthly fee, and the price of education often meant you went without something else. In the UK I was put into classes for children with learning difficulties and behavioural problems. Back then there was no such thing as language support. Perhaps ironically, I left high school with my highest GCSE grade in English language. I recall around the age of 15 we had the opportunity to see a careers advisor at school. At that time I had aspirations to be a sports physiotherapist. I was advised that my best option might be to work in my dad’s takeaway. I was really stuck because my dad didn’t have takeaway.

Part 2: HOW effective are we at tackling the systemic injustice in our health and care system? 17 After secondary school I did a BTEC National Diploma in Health Studies because I thought that may be my way into physiotherapy. I was supposed to take a gap year out, but perhaps more fittingly the gap year turned into the wilderness years. Then I did a diploma in social work and I’ve been a registered social worker since 1998. Then I got the education bug where I thought actually maybe I’m not as thick as I was led to believe and I can achieve. So I did a BSc Hons degree after that an MSc. I’ve worked in NHS mental health services since 1998 and I’ve been in senior management positions since 2006. A particular conversation: Within three months of me being in my current post, I started with one job but due to my luck and good fortune I now have three jobs and roughly the same pay. At that time, I was full of beans, energy and enthusiasm – I still am by the way. An associate director takes me aside after a meeting and says “I really like how you operate, I think you have great potential. Would you be interested in going on a BME leadership course?” More than 10 years ago I was much less reserved than I am now, so my response was “I’m a registered social worker. I have a BSc Hons degree in Mental Health I have an MSc in Advanced Healthcare Improvements, whilst our CEO has a bachelor’s degree in Geography and an MA in American Studies. Our director of HR is not qualified to degree level. I think my qualifications are more attuned to working in a mental health trust.” “What deficit do I have that I may wish to be in a room with various people who have a similar complexion to me to learn how to be like people who have a similar complexion to you?” Microaggressions: I no longer get called names as I used to, I no longer have threats or indeed experience actual violence, but I have experienced now what I refer to as a quiet violence: “I can’t quite place the accent, but you appear to have a good grasp of the English language. Were you privately educated?” “No, I just about scraped through the state system”. “Where are you from?” “Well I’ve lived in Ipswich most of my life.” “But where are you really from?” “You don’t look like a Muslim”. I’m not sure what they look like because the Islamic ummah stretches from Saudi Arabia to Ethiopia, Iraq, Bangladesh, Afghanistan, India, Indonesia and beyond. You know the forms have to fill out for conferences about your dietary requirements? I always tick I don’t eat pork but sometimes I get asked, “Ham sandwich is OK though isn’t it?” “It must be difficult for your mum and sisters to be covered up like they have to”. My mum chooses to cover herself up in public because she’s 72 and old school, but trust me, my sisters don’t. I have never in all my professional appointments been recruited, managed or supported by anyone who looks like me. Within industry and the commercial world we have great ethnic minority leadership and companies that deliver significant output. Why do we not have the same level of leadership in public sector organisations?

18 ICS System Learning: Uncomfortable Truths How much are we STILL missing? Phanuel Mutumburi, Ipswich and Suffolk Council for Race Equality Some things recently have been making me feel very uncomfortable. ISCRE has had a number of approaches from both parents and teachers in primary schools, where there has been an explosion in prejudice-related incidents. A rural primary school approached us as a Black child had been excluded from school. The child had complained continuously to the school about racist abuse, 6-8-year-olds using the vilest language. In line with their policies, the school had excluded the children responsible for very short periods. When the abuse did not stop, the child started saying he did not want to go back to school, he became a shell of his former, vibrant self. On one occasion his mother found him scratching his skin; he thought if he didn’t look like he did anymore, the abuse might stop. One day the child lashed out at another child, and was himself excluded. The mother told us that the school did not understand the lasting impact of the abuse on her child. The school staff wanted to do more but said there was nothing more available to them within the school’s rules. “There are a lot of people who want to do good, but they are part of systems that are getting things wrong.” Where are 6-8-year-olds learning this language used? At home. Young people are increasingly struggling mental health problems, feeling that they lack support, and some lash out and can be drawn into the criminal justice system. We have influence as children’s relatives, as managers, we can use that influence to drive positive change. At the #whatarewemissing event held on 20 June 2020, people talked about how the ABCD has exposed and exacerbated inequalities in our society: Austerity, Brexit, Covid-19, and the Downturn of the economy. People from ethnic minority communities asked why this happens to us, this time it has to be different, more of the same is not an option. Everyone needs to play their part and the work starts now. But the things we were talking about then, we are still talking about now. We won’t change unless we stop doing what we have always done, and engage in what I call a ‘managed disruption’. The most innovative organisations employ disruptors who look at what is not working and how they can create something different. But many people are comfortable in what they do, they feel they are the expert, and so any disruption can threaten that. Some of the disruption we have done locally has included stepping outside our comfort zone and some of the guidance to deliver some of the clinics differently in the Covid-19 vaccine programme. There was some challenge and some resistance, but the result was that we saved lives. But we have not learned from that experience, we have not continued to disrupt. In most instances we have gone back to doing the things we are comfortable with. We learned how to utilise the experience and knowledge and expertise in our communities, listening to community and faith leaders and starting to talk about different things like women’s health, domestic abuse, mental health and frailty. We even funded some of these ideas,

Part 2: HOW effective are we at tackling the systemic injustice in our health and care system? 19 such as Community Ambition. I feel really sad that having learned about how we should do things, we start to invest in that, people feel comfortable again and then they walk away. We try out things, do a lot of pilot programmes, make people feel as though change is coming, and then it all disappears and we have to wait for the next pot of money to come along. We need to use the learning from programmes and embed it into the mainstream. In the pandemic a lot of us took to looking down, working from home on our computers, but the most vulnerable people went out to work and faced danger every day. Today, international recruits are facing challenges and vulnerabilities, and we can see that we haven’t learned from the conversations and discussions that we had back then. Today there are things that we are still missing, for example knowledge and understanding about why people are still facing barriers in accessing services. But those services have been created without having conversations with people from the outset, and we come up with a million reasons why we don’t do that. We know what needs to be done, but change is going to be scary, and even more challenging. We need to utilise the resources that we have to think and do things differently. “The solutions lie with us.”

20 | ICS System Learning: Uncomfortable Truths This sign is about 60 years old, it was the welcome sign my relatives saw when they looked for somewhere to live when they moved from the Caribbean to fill employment shortages in ‘the mother country’. They ended up in cramped, rodentridden accommodation. Today these attitudes persist, they are more covert but no less potent. This message observes a racial hierarchy, with the Irish before the Blacks, and the Blacks next to the animals. You can imagine the welcome that these people received. My relatives still remember that experience, and it still informs their impression of health and care services to this day, because people never forget how you make them feel. How the little things really do matter Onche Godwin Daudu, Community 360 This rebellion we are discussing today is welcome, and there are little things that can change how we behave. But this is how it starts. It starts by being dehumanised. People pronounce your name wrong. People do not want to pronounce Onche, my first name, so to save myself trouble I use my second name, Godwin. If you have an accent like me, are made to repeat ourselves over and over when we try to express ourselves. Language barriers mean that people may not understand not just the words but what a sentence means. Experiences like these dehumanise people, makes it easier for people to disrespect you, to treat you as ‘other’, different from the norm. It makes it easier for you to be dismissed, and to receive a poorer service. And when you complain, it is because you want different service or to be treated in a different way. I want to focus on the front line team members of the NHS. That is the first point of contact for a vulnerable person. It is the treatment we receive before we get clinical help we have come for. It is simple: the moment you begin to see that the person at the other end of the counter as vulnerable and as a person, you begin to treat them that way. Give empathetic customer care training, and have zero tolerance and punitive measures where discrimination is proven. Ensure that the front line staff realise they are as important as the doctors, nurses and others that patients come across. The patient has to pass through all these individuals, and if there is a glitch in any part of that service, they will experience a poor service.

Part 2: HOW effective are we at tackling the systemic injustice in our health and care system? 21 Complaint investigations must be patient-led, as the complaint is about how someone has felt about the service they received. The question for front line staff should therefore be, ‘What if this vulnerable person was your grandparent, fragile and not confident enough to speak? Your wife shouting in pain? Your husband who is not able to articulate himself about how he is feeling? Your child? How would you feel?’ This training should ask, ‘How would you feel if your loved one was treated the way as this person is saying they were?’ My relatives still see how they were treated then, in the way they are treated today, in a micro-aggressive way when they go for services. My teenage son is already being considered dangerous by society. This has to change, and change comes from becoming more empathetic to people. “Racism is a team sport, and it requires an audience. This rebellion also needs a team for it to work. Let’s have it!” Comments There is a danger of feeling overwhelmed. We should think about the influence we have in our small spaces. Call out discrimination, as a leader say that I don’t want to be in a place where these experiences happen, and I want to influence that. We should use our assets and opportunities to shape practice. For example, our higher education institutions should have uncomfortable conversations with their students, as part of investing in our future workforce. Poor practice can undermine all the good things we are doing. We need a community of practice, sharing stories and examples of the things we are doing so that people gain confidence that they can take action, as well as supporting and challenging each other.

22 ICS System Learning: Uncomfortable Truths At the moment in our society there is a culture war. We have to be really careful in all our personal and professional contacts to be mindful of that, to avoid division and prejudice. There have been for many years opportunities for black and minority ethnic staff to learn leadership skills and go for promotion, but we are still no further forward in diversity in senior roles. We are focusing on the wrong thing. There isn’t a problem within black and minority ethnic staff, the problem is with those who hire them. We must understand our biases, our privilege, and become more literate about discrimination. Prejudice is about interactions. In the policies and decisions people make individually and as a system that affects the lives of other people. The trauma of racism is real. The solutions need to flow from that person-toperson interaction. I want leaders to go into educational settings to talk to young people not just about the skills we need for work, but also about our values. If we sow the seed earlier, we can make changes for the better.

Part 2: HOW effective are we at tackling the systemic injustice in our health and care system? 23 5. HOW we need to ‘Think Differently’ about tackling injustice? How we can be better allies to people facing disadvantage Kerrey Goosetree, North East Essex Health and Wellbeing Alliance I have been leading on the Tendring Place programme, which seeks to improve health outcomes through employment and skills. To begin with, here are a number of uncomfortable facts: • Nationally, 9.2 million aged 16-64 are classed as economically inactive. • In Clacton, half of people are economically inactive, more than twice the national average. • In Tendring, 1 in 5 over 16’s not in employment have never had a job of any kind. • Unemployed people are five times more likely to report being in poor health than employed people. We need to work together to turn the tide on these numbers, remembering that when we talk about numbers, we are talking about real people. We need to think about how we recruit to health and care roles, not just in Clacton but in other areas where there are health inequalities. It is estimated that by 2030 we will need another 488,000 health and care staff to meet demand. The uncomfortable truth is that despite our expertise and good intentions, we may not fully understand the realities and barriers faced by the people we are trying to help, the intimate knowledge of the complexities and unique circumstances they face. Factors such as personal trauma, mental health, social and economic barriers and dynamic family issues can all have a significant impact on the individual’s ability to seek and maintain employment. Many people are also judged on the way they speak and the language they use. The Tendring Place Research programme seeks to understand the challenges people face in trying to move into employment. We worked with a number of our local voluntary and community organisations, training 38 service users to become peer researchers. These people were well connected to their communities and had a strong history of accessing pre-employment opportunities but poor translation into new employment. They held interviews with diverse members from their wider communities, and identified a range of barriers to employment including skills, experience, accessibility, job searching, applications, job matching and inductions. The research told us that learning difficulties are not very well understood: “There’s nothing really out there to help people like me. Everyone says I can’t go and do a normal

24 | ICS System Learning: Uncomfortable Truths job.” The uncomfortable truth is that this is not true. Essex Cares Ltd has a team of inclusive employment consultants that work with people to develop their skills, confidence and work experience so they can realise their career ambitions; and on attaining employment they will support the employee and employer for as long as required. Despite this support since 2020 only four people with learning disabilities have in been employed in the NHS in Essex, and none at Ipswich or Colchester hospitals. The application form is the biggest barrier for anyone wanting to join the NHS. The uncomfortable truth is that it is easier for a hiring manager to simply update an existing job description than to rethink it to make it more accessible to a wider range of people. Employers need to realise that just because a person looks fine doesn’t mean they have no needs for support. The uncomfortable truth is that we are all busy, and unless a problem affects outcomes or delivery of services, it’s easier to ignore the fact someone may be struggling. Working together we need to turn the tide on these uncomfortable truths. We have organisations in our system that can’t find people to fill their vacant roles, and we have people that can’t get those jobs. Let’s make the system work for both sides of the coin. “The uncomfortable truth is, if you change nothing, nothing will change.”

Part 2: HOW effective are we at tackling the systemic injustice in our health and care system? 25 How we can avoid victim blaming Joan Skeggs, Integrated Care Academy and Su Conquer, Healthwatch Suffolk and Integrated Care Academy Joan: The Integrated Care Academy’s Co-production Hub incorporates Network of Networks events, which bring people together from across the system to think about coproduction and to share experiences of involving people with lived experience to improve services. At the request of the Integrated Care Partnership we recently held an event on ‘victim blaming’ in health, for example health conditions linked to behaviours such as smoking. I reflected on that and realised that we want our world to be a safe place, in our upbringing we are taught there are consequences for certain behaviours, and so we believe we should avoid those behaviours in order to keep ourselves safe. We looked at a range of literature on the issue of ‘victim blaming’. One article looked at heart disease, and found that people with heart conditions, particularly those from deprived areas, tended to blame themselves for their situation because they smoked. However, some also feared being blamed by professionals, putting them off seeking help when they needed it, and so creating a barrier to services. A second article argued that nurses’ burnout is being treated by some NHS trusts as a condition, focusing on treating symptoms with sessions on mindfulness or tai chi, instead of addressing what was happening for those individuals, having to work each day in really difficult circumstances. Reading further, I realised I have had quite a privileged life in many ways, and I have never walked in the shoes of these individuals and really understood them and the level of control they have over their lives. In terms of co-production, if we are really listening to people we need to value and invest in them and the voluntary sector organisations with expertise in supporting them. We need to work with people in a way that doesn’t try to fix the person, but fixes the problem, through co-production. If we are going to have a revolution and change the way we think and do things, we need to help people to challenge their own thoughts, feelings, views and assumptions. We are not bad people deliberately doing the wrong thing, we just need to understand more by being with people, and by holding a mirror up to ourselves. Su: Our event was attended by over 40 people, who explored how true co-production with people and communities can tackle the root causes of the problems. Using coproduction an early stage with people to think about what the fundamental issues are and to tackle them, is the most effective and trusted use of people’s time and efforts in this way. We also need to be honest with the people we involve, both people using services and staff, about the programme’s budget and constraints.

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