Rethinking Public Services: Developing Citizen Led Stories of Change.

Better Connected: Designing the Future of Public Services in Sheffield

From Neil’s Story

From Sarah’s Story

From David and Anne’s Story

From Violet’s Story

To view these films visit: http://bit.ly/stories_of_change

Rethinking Public Services: Citizen-Led Stories of Change

The Better Connected Programme, led by Sheffield First Partnership, has an overall aim that by 2020 Sheffield public services will be better connected to the people they serve.

Individuals are always at the centre of public services, and the impacts, problems, and effectiveness of services can always be measured at a human, personal, level. Yet, the deeply human heart of public services can easily be obscured by the complexities of planning, delivery and co-ordination; indeed, even evaluation and measurement of efficacy (or its lack) can sometimes appear to leave the person out. This project attempts in a small way to redress such imbalances, and to open up new possibilities for hearing the citizen’s voice. This booklet and the accompanying films form part of a series of ‘Stories of Change’ discussion documents. As well as transcripts from the films, the booklet contains additional material, including illustrations and photographs. The aim of this project has been to work closely with a range of users of public services in Sheffield in order to co-produce short narratives which tell the stories of their experiences using a variety of media, including text, film, audio, illustration, and photography, and drawing on a range of research methodologies including narrative inquiry, participatory action research, and visual research practice. The outputs from this project generate considerable insight into citizens’ diverse experiences of using public services, and also into what is most important to them in these interactions and relationships. They also help us to deepen our understanding of the complex and unique nature of each such engagement. No unique story is, nor can be, ‘representative’; however, through paying close attention to individuals’ stories, we can access important insights which have far wider applicability. In addition to disseminating these insights, this project is intended to outline a possible method of accessing the ‘citizen voice’ which is qualitatively different from standard consultative processes. The team on this project have worked with a wide range of groups and individuals, including families, carers, people with disabilities, young people, and older people.

All project outputs are available to view at this website: http://bit.ly/stories_of_change

Neil’s Story

Neil, 58, is an artist and writer. He cared for his mother at home until she passed away from Alzheimer’s in 2010. Neil lives an active lifestyle but struggles to maintain the family home due to his disability of cerebral palsy.

My name is Neil Simpson. I am a citizen of Sheffield. I am 58. I am a former carer. And I am an artist and a writer. I think about that about sums me up, really. Four years ago I was acting as a carer of my mother who developed Alzheimer’s. So I applied for benefit. I actually went to the Carer’s Centre, because that’s an art form! Applying for things like disability, living allowance all that kind of stuff, is an art form because you make that wrong quarter sentence, and you’re not getting it. And you need be connected enough to know that stuff’s there and that’s hard because you think right, who do I go and see about this issue? What office do I go and see?

I sought help from The Carer’s Society. I sought help from Disability Sheffield as I worked for them. The carers were very good, they helped with the form filling. There was a successful care package. There was a whole series of people. And I was repeating exactly the same story which is a strange thing. I mean, wouldn’t it be good idea if they actually had the notes? If that first person you met said I think you need a social worker, you need a care worker, we need the benefit person, we need a doctor.

I think what it is, is departments – you’ve got departments who don’t talk to each other. In fact, a couple of them actually phoned me afterwards. Now hang on, if you found one of your clients is dead, wouldn’t it be a good idea if you actually got told that one of your clients is dead? Who is not telling who? So obviously they are not sending emails to each other, are they?

The main sadness was as soon as my mother died there was nothing. There was no, ‘Right, how are you feeling? What’s happening now? This is an organization

you could call if you are having a serious trouble. I just got, you know, well you’ve finished your job now, you can go back to live. But I am no longer a carer so I don’t get carer allowances. We were also reliant on my Dad’s pension, that disappeared as well. And my wages, my income collapsed. So I ended up living in a fairly large Edwardian semi on a part-time wage which I have found increasingly hard to live on. There was no intermediate bit saying well you know, we can ease you through this.

I have a disability and that’s the other part of my story. I have CP – cerebral palsy. I have fairly minimal cerebral palsy - I can walk, I can talk, I can do all sorts of things but there are lots things I can’t do, physically, for instance I can’t do fiddly jobs. If the lighting goes in a certain place, if I can’t immediately fix it, I will do without it. I use a torch, I use a torch and I know where I am. I know exactly where I am.

‘One of the main problems is the concept of social housing tends to be a one size fits all.’

I need some kind of social housing, some kind of easily accessible housing. One of the main problems is the concept of social housing tends to be a one size fits all. We aren’t like that - none of us like that. We all have needs. How would you tick box me? I can walk, I can do all sorts of other things but there’s lots of stuff I can’t do and a lot of stuff I might need a little bit of help with.

I had arguments with my Dad many years ago, he said, ‘Why don’t you go and sign on?’ and I said, ‘I don’t want to do that, I want to work.’ I genuinely feel sometimes I am being punished for working. I am being punished for being independent. I mean I’ve done an awful lot of stuff in my life. I’ve worked for the best part of 20 odd years, this is my 20th year working at Botanical Gardens doing a fairly good job, so you know, I can stand proud and hold my own.

To view the film of Neil’s story visit: http://bit.ly/stories_of_change

An 18 month long journey from alcoholism and homelessness to stability and voluntary work…. I lost my flat in Totley…. For the first 6 months I got some help from the Salvation Army who were a support network. I was then offered another flat. My support worker from the council wasn’t very helpful. So I contacted Shelter - and I’ve been happy with their support, and the regular home visits. The council charged me £10 for the clearance of my previous flat. They sent the bill through debt collection agencies without prior notices. I got very angry about this and even spoke to the local MP. I never heard anything back. Ed, Sheffield

Stories of shelter

I had to flee from Pakistan to Dubai because of the fear of persecution for blasphemy. I was happy in Dubai for 8 years, but I was made redundant and my visa expired. It was very dangerous to return to Pakistan. I had to seek refuge in the UK—luckily I had an existing 6 months UK visa for the whole family. We arrived in the UK in 2012. We were sent to different temporary accommodations in Barnsley and Sheffield. The problem started with the lack of disabled-friendly accommodations for my mother. The social services gave misleading messages and they had a cold behaviour with an elderly disabled woman who couldn’t speak English. She had to spend a terrible time in a care home where she was abused for 18 months because the council or UKBA couldn’t provide accommodation suitable for a disabled person. She became more and more vulnerable and ultimately passed away in hospital without even spending a day at home with her family.

Asad, Sheffield

I’m 60 years old and I have depression. I was harassed by my neighbour. I contacted the council but they didn’t help me. So I got in touch with the police who warned the neighbour to keep away from me. The council put me in touch with Shelter who I’d heard of - but I thought they were just for homeless people. I’m glad they put me in touch with Shelter. My Shelter case worker helped a lot with paying bills, sorting out payment plans, and helping me to eventually move to a lovely flat in a nice area. She is more of a friend who I can talk to. She even came with me to my GP who wrote to council that I was depressed - but the council didn’t listen.

Marilyn, Sheffield.

Sarah’s Story

Sarah’s son, John, born a healthy baby, suffered brain damage due to medical negligence at three weeks old. This left him partially sighted with a hemiplegia affecting his right hand. He suffers from epilepsy, has severe learning disabilities and is on the autistic spectrum.

John inspires and humbles me every day. The effect on him, how he has struggled to live in a world that is clearly not easy for someone with his problems has been massive. He has struggled for the past 19 years. John is now transitioning to adult services, which has brought new challenges and frustrations. It is me that has researched and planned adult provision for my son. (It took me two years to do this.) It is always me that that has to chase up issues with various agencies. The services we have received have been minimal really. There is a strange mix of pride, feeling guilty for needing, that often gets in the way of families like mine asking for the help that we need.

‘There is a strange mix of pride, feeling guilty for needing, that often gets in the way of families like mine asking for the help that we need.’

I dread accessing front line services. It’s like being in the midst of a challenging mental and physical game. I feel powerless and so frustrated. I can only assume that the people who work there are also under stress which causes them to respond unprofessionally.

Once, when I was near breaking point, I heard of Crossroads, a wonderful charity that offered us three hours of support a week! I will never forget that meeting, the lady that came was kind, listening and compassionate. It seemed like a miracle that someone came to my house, took notes herself, offered me some help! Sadly, Crossroads, the charity as we knew it then, changed several years ago.

Privatisation of services means you have to ‘shop around’ yourself. Thankfully, after much hard work, John now has an individual budget that meets most of his needs. Privatisation of services gives choice. John now attends a farm three days a week. This has been the most positive experience where he has blossomed unbelievably, in ways I never thought possible.

I have to work hard at managing John’s life. Researching what is out there to ensure that John’s needs are met has taken me hours and hours. It is me that vets these places - is this person, place, going to be able to meet John’s needs; is this place safe for my son? I often wonder what checks many of these places that offer adult provision undergo.

Sadly, experiences of social run services is very, very poor. The lack of communication, and, again, dishonesty dumbfounds me.

What can make my situation better? A continuity of someone who I can call upon should I need advice and help, which isn’t very often. Once the transition process is over, Helen, the Social Worker who is professional, works with me in a calm, supportive and intelligent way, will no longer be involved.....we will be ‘transferred’ over to adult social care. This means that we will not have a social worker allocated to John, who knows and understands his needs, and us as a family. I am told that if I need help, whoever is on duty, they will sort out the issue. No continuity or understanding of John.... and this leaves me feeling sad, very unsupported and fearing the future.

‘I dread accessing front line services.’

David’s Story

I was a councillor. An insider and an outsider, There was a perception then that councillors are the only people who can get things done.

As a citizen, I contacted services direct to try and create a path for my disabled wife so she can access the tram stop. I got the brush off. It seemed too complicated for them to bother about at that time. There’s a big gulf between those who said we’ll deal with it and those who actually did things.

Westfield is seven miles from the Town Hall. If you have a problem with the school, you would go into the school. But where do you go for services? How do you know where to go?’

There was a public forum meeting regarding the new lighting system in the neighbourhood - it was there that I felt I could have my say - spoke about asking contractors to tidy up the cuttings, felt I was listened to.

David, Westfield, Sheffield.

Sheffield Young Advisors

“For a while, I got really stressed to the point that I would cry non-stop. I told nobody about it because the services provided for this are not encouraged or promoted enough. Only friends helped. I don’t know who to go to (professionally) if it happened again.”“Charlotte”, Young Advisor, Sheffield Futures

“Self-harm was a big part of my life at one stage. Therapy failed because the woman was simply reading from a book!”“Joanne”, Young Advisor, Sheffield Futures

Aisha’s Story

My name is Aisha and I’m a health champion at the ShipShape health and wellbeing centre. I came to ShipShape as a service user two years ago. My doctor referred me. I came regularly, every Wednesday, because of my liver problems. They advised me what to eat, what not to eat. Then one day they asked me to be a health champion. I said I wasn’t confident - my language isn’t good. They said it would help to build up my confidence. So I said alright that’s fine - and I became a mental health champion. I did a lot of training. And that’s how my confidence is building.

We had five, six people coming to the mental health group in St Peter’s church. But we didn’t call it a mental health group because our community is like this - we just can’t openly call it a mental health group. So we called it a Women’s Group. We ran it for six weeks independently. And then a funding problem came and we couldn’t continue with the same group.

‘Because I work with women I see lots of women are suffering. They sit at home alone watching TV. That’s all.’

I look at myself - I was a service user and I needed help in that kind of situation. Now I’m helping others. This has helped me to become a better human being and see the problems that people suffer - even though in this country you can’t see problems openly. It’s hidden in the houses. In Pakistan you can see the problems. It’s out in the open. Here what the media shows is like a ‘high-five class’, but it’s not really like that. People are suffering in their houses. Because I work with women I see lots of women are suffering. They sit at home alone watching TV. That’s all.

There are these kinds of services like Shipshape, libraries, Zest, Darnall Wellbeing, Sure Start (this was really famous, but it shut down) which are very helpful. I’m an Asian woman wearing a scarf and hijab, and my work in the community can be a motivation to other women who want to do something but think maybe the community won’t accept us. This is wrong. I work in a white community a lot because Shipshape is that kind of place where all communities come to. And they do accept me. We’re one big family in Shipshape.

I didn’t have some of the barriers other Asian women have, such as in-laws. As an Asian lady there can be a lot of barriers. You can’t go there - you can’t do this – you’re not allowed.

I’m here at the moment because of ShipShape. I hope funding never ends for Shipshape.

David & Anne’s Story

David and his brother recently obtained Lasting Power of Attorney to act on behalf of their mother, Anne.

Anne, 68, was diagnosed with Alzheimer’s in February 2014.

About 18 months ago, me and my brother finally persuaded my mum to go and see her GP about her memory which we thought was getting worse and worse and worse. That then began the process where my mum is today which is in an EMI unit of a nursing home, a care home. So yes, it’s been quite an eventful 18 months.

She’s been diagnosed by the memory service, by a doctor there, and she said to us both, you know, that there may be eight or nine years, maybe ten years before things have to be dealt with in terms of no longer being independent, no longer living at home. The diagnosis we received from professionals was completely at odds with the reality we were experiencing.

The decline was rapid. It was before our very eyes really. We were going back to the memory service and it was hard in 15 minutes consultation to get any sense of the wider picture. Certainly we weren’t spoken to individually to gain that full picture. And we really thought like there was a huge difference between the severity of the situation as we understood it, and the kind of reality of the care that was being provided for her.

And it began to kind of unravel, really. My brother spoke to another GP, who really took positive steps and action and engaged the social services, and for a time, I suppose, there was a stabilisation. And then it moved over. She’d had a care package assessment by the social services. She started to decline really again. We were worried that she was becoming more and more confused. She didn’t seem to be eating. We weren’t sure that she was taking her medication. They were supposed to be visiting her four times a day, but we weren’t even sure that they were doing that. There were lots of gaps. We got a phone call saying that she’d collapsed, that she’d been found by the carer. The carer rang the ambulance - the ambulance driver got there, read the logbook, and came to the conclusion that she wasn’t being cared for properly, and that it was a safeguarding issue, and she should go to hospital in order to get the care that she needed. Which was a real shock for my brother and I. I remember we went to see her in the hospital and she was confused. She was agitated, in a way that I had never seen her before. She seemed more and more remote, but still our mother, still full of happiness really, and kindness, but increasingly edgy as well.

Anyway, she was in the hospital and we got a phone call the next night to say that she’d gone missing, that she’d walked out of her ward. She wasn’t in a ward for

people who had dementia. She’d simply walked out. We were incredibly worried about this. We were scared because we knew how bad she was. We knew that she didn’t know where she was. Eventually we got a phone call - the police had found her walking down the middle of the road.

Reflecting on it now, it’s a bit concerning that no-one was really speaking to me about what was actually happening in terms of the wider emotional impact, it was just being passed from one to the other.

When I went to see her in hospital she was being seen by a physiotherapist - certainly never spoke to a medic about her condition. After a month we were told to move her. We were told to find a care home for her - she had her assessment which was kind of good in a sense because it gave us an actual chance to talk to someone about the situation. And the social workers listened and were lovely, and the nurse listened and was lovely, and made the assessment, and said that she was EMI, that she would have to go to a unit that was secure. And then we were pretty much told that she was blocking a bed. We were told to find somewhere. We were given a list of care homes.

We did find somewhere in the end, but the problems continue really, in the sense that, well, she seems happy and she seems to have stabilised, the nurses really care for her, the carers care for her, you can tell there’s a really strong relationship, and it’s lovely to see her smile, and to see carers actually treating her with respect, but really we still have had nothing - from trying to find out about, for example, social workers, or trying to get someone to say we’re thinking about your mum, this is her case, these are the things that we can be doing for her. There’s nothing. None of that. It just would be nice to have some more support, it would be nice to have someone who knew all the different points of connection, who knew all the different agencies that drew it all together.

We only found out actually that we even had a social worker assigned to our case maybe two, three months after our mum was first admitted to the care home. Well, the social worker is lovely, but so hard pressed that you never feel they actually know the person they’re supposed to be helping. That feels a bit strange, and it feels like we don’t really know what’s going on.

To see a 68 year-old woman, such intellect, such a joyful life, to be infantilised really in two years has been incredibly heart-breaking really. And there is no doubt in my mind that that negligence - it’s caused rapid decline in her condition. You know, I think we deserve a bit better, we as a society really. ‘

To view the film of David & Anne’s story visit: http://bit.ly/stories_of_change

‘They were supposed to be visiting her four times a day, but we weren’t even sure that they were doing that.’

Violet’s Story

Violet is an involvement worker at Sheffield Futures. She is also a Young Advisor, working with charities, businesses and the Council, to make Sheffield a better place for young people

My name’s Violet. I’m 20 years old. I’ve always had a passion to help young people because I didn’t have the easiest of ‘youths’, if you like, so I think it’s important that young people get the support – not just what they need, y’know – that they want. It needs to be tailored to them - one size doesn’t fit all.

My story is a little bit different from most people that you will meet. I come from a very diverse family – we’re a mix of two cultures. At sixteen, I was engaged to be married, and I decided that I didn’t want to do that anymore. I was actually the victim of sexual assault relating to that. That was, you know, quite a… quite hard thing for me to… to deal with. It’s thanks to youth workers, actually, at Sheffield Futures and my lead, Sarah, that I came through that and I’m able to deal with what happened now. They made me see that I could come through it and I could see the other side because a lot of the time I thought that it was my fault, and what happened to me wasn’t my fault. They made me see that, and for that I’m very grateful.

A year later I fell pregnant with my son who is now two-and-a-half. I struggled with my pregnancy and the aftermath of having him because (a), I had quite a difficult labour, and (b), I were only seventeen and… y’know, anybody who’s got kids knows that it’s a bit of a… bit of a shock to the system, so if you imagine that at seventeen…

I were diagnosed with post-natal depression, which I still receive counselling for now, and I’m still on medication for that now. Between the ages of 16 and 18, it’s a bit of a no-man’s-land because you’re not quite an adult but you’re not a child and it was so difficult for me to get the support that I needed because they didn’t know where to put me, they didn’t know whether to put me with children’s mental health services or whether to put me with the adults and so because they don’t know what to do with you, they just think, ‘Oh, right, well we’ll delay it a little bit longer until she hits eighteen and then we’ll stick her straight into the adult services’, but by that time, for me, it was too late because I’d already spiralled that far down. My depression were taking over and I were really vulnerable. I were struggling to, like, cope looking after my son.

I got into a really abusive relationship, I got with a man who was extremely controlling and vindictive and manipulative. I were like a shadow. I weren’t … I weren’t me at all. And I couldn’t see it… couldn’t see it. It took a year for me to even see that it was wrong what he was doing to me.

Again, I looked for support where I know I can get it with Sheffield Futures and it was actually a youth worker, here, that supported me to be strong enough to walk away from that relationship and get out of it and realise that that’s not where I needed to be and that wasn’t doing me any good.

‘My son’s social worker didn’t know that I was even under care of the mental health team - I had to tell her that.’

I didn’t personally have a social worker, but my son did, and my son’s social worker didn’t know that I was even under care of the mental health team, I had to tell her that. And she should know that because I’m looking after a child and she could’ve supported me with that, because they’re not just there to support the child, they’re there to support you.

‘None of the services actually communicate with each other, I think that is probably the worst part about it.’

None of the services actually communicate with each other, I think that is probably the worst part about it all. It can be quite hard for young people, well just people in general, if they’re having to relay one story to one person, the same story, then, to the next person, and then to the next person, to the next person. It’s like right hand doesn’t know what left hand’s doing.

Young people, at the end of the day, they’re learning, y’know, every day is a learning curve for them, and I think that they need that support to find the right way to go in their life and what they want to do and where they want to be, and I think it takes, sometimes, the right support from the right people to make sure they can actually do that.

No matter what happens in your life you can always turn it round and you can come out a stronger person for it. My job has helped that because it’s given me a purpose and it’s something that I absolutely love with all my heart, something that I’m so passionate about and something that I enjoy so much that I don’t know where I’d be without it.

To view the film of Violet’s story visit: http://bit.ly/stories_of_change

‘When I look back I see myself being left, bereft in a desert, with only an empty noticeboard to look at. Desperately seeking some help.’

My Story

A vicious circle between hospital, home, GPs and school. Something happened to ‘Me’. Coherence was gone. I found myself in a thick glass case with bubbles in-between. The outside world was far away, blurred, empty, with no reference points. I looked in the mirror and saw nothing. I was utterly dependent upon others to help me through.

HospitalWhy did physical health professionals take no account of my mental health when the crisis happened? It was known I was vulnerable. Did no one think it was relevant? Did no one think to flag it up as a risk factor and that I might need extra support? Perhaps if they had then this story might have ended here – a good outcome. But no, it didn’t happen like that for me.

GPsGPs had no treatment for anxiety and grief. I didn’t look that ill. My hair was brushed. I was “coping”. Until it became obvious that I wasn’t. Only the medication for depression made it worse not better. But it was my “fault”. I wasn’t responding like I should.

“Pull yourself together”

“Work harder at this”

Never spoken but always simmering just beneath the surface.

Fragmented Secondary Care ServicesI was fragmented. The last thing I needed was a fragmented service that offered no sense of continuity, no sense of coherence. Never seeing the same person twice.

Mental health care looked like an impenetrable forest to me. I never fitted neatly into anyone’s box. No one ever looked for the whole picture. Only saw ‘their’ fragment.

At no point, in all that time, did anyone signpost me towards any other provision or source of support. I had no access to any information about any other place or organisation that might help me to recover. Having access to the right information at the right time is empowering.

I ended up being invisible. Disconnected. Excluded. Abandoned.

It took more than a decade to make a diagnosis. It felt like a victory of sorts, a recognition that antidepressants on their own were never going to be the miracle cure. No longer at the mercy of locum GPs who didn’t understand. The endless humiliations of having to beg for something to get me to sleep so I could cope with the day to day realities of looking after children. “You will be fine when your children have left home” said a psychiatrist. The youngest was nine years old. Their mental wellbeing was known to be at risk because of my poor mental health but still there was no treatment for me. I was still depressed. I fell through the net. We, as a family, fell through the net.

People’s relationships are fragile in these circumstances. More can be done to support families in crisis. Don’t blame and judge – look at the whole picture.

School An indefinable urge to connect, to try to build a network of support led me to school’s notice board. There was nothing there for me either. Again, I was invisible. Nobody spotted a depressed mum feeling lonely and awful in the corner of the school playground waiting, day after day. Why should they? It wasn’t their job.

Schools seem to be detached from the mental health of their parents. Yet they could do so much more to help rather than making it worse. It doesn’t have to be an extra demanding burden. Creating a culture and climate of support around the whole school community can only help children and families thrive.

When I look back I see myself being left, bereft in a desert, with only an empty noticeboard to look at. Desperately seeking some help.

A Way OutI never gave up on myself. I clung onto tiny highlights in the landscape. I wanted to have a manageable moment, a manageable day, a manageable life.

Eventually, through sheer good luck, I found a tiny Sheffield charity who support women out of depression. They listened to me, gave me the time I needed. Never judged or blamed or explained it away. They helped me reclaim myself, rebuild a life I wanted. They gave me the confidence to persevere with the system and get the treatment I needed. They made a huge difference in my life. They gave me the kind of support I never received from public services.

Without this support I would still be a drain on my GP, consuming time and money, to alleviate symptoms without ever treating the underlying problem. And this is the rub – it was eminently treatable - could easily have been resolved if my mental health had been considered at the time I needed physical health services.

What could have been done? Better ConnectionsAccess to the right information about public services and the way they can help is essential when you are in a crisis. For me, the lack of the right information and the right support was part of the problem.

GPs, schools and community mental health teams could really help if they knew their communities. If they knew what is available they could signpost people on. Signposting on really matters.

Don’t reduce human distress to a list of symptoms and scales that fail to capture the whole experience. Don’t increase the fragmentation.

These citizen-led stories were produced by Storying Sheffield for Better Connected, Sheffield.

To read more about the Storying Sheffield project visit: www.storyingsheffield.com

For information about this project and to view the films visit: http://bit.ly/stories_of_change

Team members:

Prof Brendan Stone: director, Storying Sheffield Gemma Thorpe: photographs, films, and project leadKay Aitch: illustrations and facilitationDr Shirin Teifouri: research and facilitationMatthew Colbeck: research and facilitationEleven Design: booklet design

The team wish to thank all those who participated in this project and shared their stories. Thanks also to Sharon Squires and Julie Bull of Better Connected, Sheffield for their support and encouragement.