Olivene Howell - Their Own Voices by UCL Citizen Science Academy

THEIR OWN VOICES A play

By Olivene Howell Citizen Scientist Published October 2026

Their Own Voices

About the Newham CRN In December 2024 the UKRI and The Young Foundation announced new ground-breaking engagement investment in nine ‘community research networks’ across the UK - collaborations led by community organisations alongside academics, local authorities and local residents. The networks span the length of the UK, from the north of Scotland to the Isles of Scilly, and the only successfully-funded network in the southeast is here in Newham!

For the Newham Community Research Network, Compost London are leading a ‘network of networks’ based in various wards across our ethnically diverse and innovative borough. The three recruited networks cover migrants and refugee communities, marginalised women, and young people with special educational needs who live, work and go to school in Newham.

The five-year project is supported by University College London’s Citizen Science Academy, based in the Institute for Global Prosperity, which has strong experience running citizen science (community research) projects in east London and across the world. Local residents from the three different networks are being trained in research ethics, methods, and project planning, and then supported to carry out qualitative research across east London, tackling questions and issues they feel are important to their network communities. Newham Council are also providing support across all three networks, and placement opportunities within the Council will be available for some of our alumni.

About C.R.O.W.N The second cohort of citizen scientists, were trained in summer 2026, and supported by the marginalised women sub-network members, including the East London Black Women’s Organisation (ELBWO). This subnetwork - CROWN (Collaborative Research and Outreach for Women) - works collaboratively to drive trauma-informed, inclusive and culturally responsive change, so that services genuinely reflect the realities of marginalised women and girls.

Throughout the programme, the citizen scientists from CROWN have taken part in training, discussions and practical research activities. They have worked incredibly hard, supported one another and brought their own experiences, perspectives and strengths to the group. We hope you enjoy reading their research.

Their Own Voices

THEIR OWN VOICES A play

By Olivene Howell Citizen Scientist

FOREWORD My heartfelt thanks go to the nine wonderful, powerful, articulate, brilliant, and compassionate women who agreed to take part in my research. Their generosity in sharing such a wealth of information and personal experiences made this play possible. I am deeply grateful for the trust they placed in me and for the openness and honesty with which they shared their stories. Allowing themselves to be vulnerable required immense courage and strength.

Their Own Voices

PROLOGUE

As part of UCL's Citizens Social Science programme, my chosen research topic was 'Advice and Support Services for Older Marginalised Women, particularly in the Digital Age'. This play is based on the outcome of my research. The qualitative research comprised individual interviews with four women and a group interview with five women, conducted over two to three weeks. The format for the play was drawn from one of the recommendations contained in the research, which is as follows:

•

A service specifically supporting older marginalised women offers a practical response. This could initially operate once a week, for a morning or afternoon, from an accessible and familiar venue. It could provide specialist advice about welfare benefits, housing, social care and other rights, as well as help with forms, referrals and communication with public bodies.

•

Existing informal groups could also provide effective locations for outreach. For example, a specialist adviser could regularly attend the women's group at ………… delivering advice in a familiar community setting may make the service less intimidating and more accessible. A small pilot at this group could be evaluated before being extended to other neighbourhoods.

For the play, I created a fictional scenario in which all the interviewees were gathered in one room. The dialogue and discussions were drawn from the participants' own voices. To protect their identities, all participants were given fictitious names. As an additional safeguard, the dialogue was not always assigned to the description of the participant who originally provided it. The group coordinator is entirely a fictitious person and bears no resemblance to the researcher.

Their Own Voices

CHARACTERS SERENITY

Group coordinator/facilitator, thirty-one years old, Black British

APRIL

62 years old, Black British

JEANETTE

66 years old, Black British

MAUDE

69 years old, White British

MONICA

72 years old, Black British

VERNA

51 years old, Black British

SILVIA

67 years old, Black British

JULIA

70 years old, Black British

SCENARIO Several months ago, the community centre piloted a four-week support group for older women from marginalised backgrounds. Participation was promising, so the centre applied to the local authority for a small community support grant to fund a sessional group coordinator and facilitator, meeting-room costs, and refreshments. Fifteen women from the original pilot group expressed interest in attending once funding was secured. Over the following four weeks, the group held meetings on different themes. The sessions were open to any woman in the borough who considered herself elderly, although most attendees were women of African Caribbean descent aged over 60. The theme of today's meeting was 'Access to advice and support for marginalised women, particularly in the digital age'. A representative from a local legal-advice agency was due to attend to identify the women's advice and support needs and direct them to appropriate services, including the agency's own. Unfortunately, the guest sent apologies at the last minute, leaving Serenity to facilitate the meeting.

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A meeting room at the community centre. The weather outside is miserable. SERENITY, APRIL, JEANETTE, MAUDE, MONICA, VERNA, SILVIA and JULIA are gathered for the group's meeting.

SERENITY

Welcome, ladies, and thank you for attending our little gathering despite the inclement weather. I know there's only a few of us that could make it today, but I'm really excited about the future prospect of this group and hope we will continue to achieve many great things together. The group affirm their agreement in unison.

SERENITY

As you know, the theme today is 'Access to advice and support for marginalised women, particularly in the digital age', and I must apologise again that the researcher could not be here personally due to illness, but she's sent me a list of the questions for me to ask the group. I know I say this at the start of every meeting, but you ladies must remember to be kind and respectful to each other at all times.

APRIL

Yes, of course we will, we always do.

SERENITY

Yes, you are all such amazing ladies, but at times we may share some deeply personal stuff, and I want it to remain a safe space where no one feels judged for holding a different opinion or for having different experiences. Serenity opens her laptop and scrolls through the list of questions from the researcher before pausing for a moment.

SERENITY

My goodness, that's a lot of questions, it seems there's at least 22 in total.

APRIL

What! We'll be here till midnight at that rate, the way some people like to chat. A few of the women respond with laughter.

SILVIA

Umph! As long as we finish in time for me to go and play the Lottery.

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JULIA

And I want to get home in time to listen to the early evening news.

SERENITY

Of course, ladies, I wouldn't dream of keeping you all out for so long, especially as you all made such an effort to be here in such horrible weather conditions. I'll run through the questions as quick as I can. I probably won't have to ask you all of them. Are you all ready? The women all shout with enthusiasm.

ALL

We're ready!

SERENITY

Ok. The first question looks very similar to the second question, so I'll ask you both of them together. (Reading from her laptop) What are the biggest challenges you think you face in your daily life? What do you feel are the issues you most worry about in your life?

APRIL

It's AI for me.

SERENITY

What in particular about AI are you concerned about?

APRIL

Well, it everywhere, isn't it? All this AI business – all I ever hear these young people talk about is ChatGPT this and ChatGPT that. How are we elderly people supposed to keep up with all this new technology, when someone like me can hardly understand all these apps things my children download on my mobile phone?

SILVIA

Exactly! My 85-year-old neighbour grandchildren gave her a 'smart phone'; she took it from them and refused to use it. She said – what me doing with that? Don't they think I've been smart enough to survive this world all these years? Why me need such a phone for now, when all it going to do is to make me look stupid cause I can't understand it?

APRIL

I don't blame her. All I want to know is if this AI business is going to overtake the world and kill all humankind.

SILVIA

(Turning around to face April) Where did you get that nonsense from?

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APRIL

I watch the news and read the newspapers all the time and all I can hear is about these human-like robots, and AI taking over all the work, and make everybody redundant. I just feel sorry for all the young people dem.

SILVIA

Chu man! Seems to me like you watch too much science fiction.

SERENITY

Ladies, language, please. Remember to be kind. April, I understand your concerns. This is quite a big topic; maybe we can come back to it later as I see some of the questions refer to digital access. Or ladies, if you prefer, one of our future sessions can be about AI and we can invite a speaker or two in to explain it to us in a less frightening and more simplified manner that we can all understand.

SILVIA

Sorry, April, I didn't mean to sound rude. Just joking, you know. Yes, Serenity, that sounds like a good idea.

MAUDE

I don't mind using a bit of AI myself, just to do simple research.

SILVIA

Good for you.

SERENITY

Does anyone else want to share any other concerns?

MAUDE

For me it's finance, you know, like the cost of living is getting higher and higher. Even though I'm getting a little pension, it's hard to make ends meet sometimes, and to make matters worse, I'm not even getting my full state pension, even though I've worked longer than the qualifying years.

SERENITY

Oh dear, sorry to hear that, Maude. Do you know why that is?

MAUDE

That's what I've been trying to find out about all these years ever since I retired. It's something to do with what they called SERPS.

MONICA

That damn blasted SERPS! I have that problem as well. It's a bloody nuisance. I worked my butt off all my life until I reach retirement age, only to find out about this SERPS thing and they shortchange me on my pension. You know we're not talking about small change, and in this climate, every penny counts.

SERENITY

Did either of you ever try to find out why?

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MAUDE

Yes, I've written letters, sent emails and contacted HMRC. Fat lot of use they were. After explaining my situation to this young man at HMRC, he sounded all sympathetic, took my details and said he would find out more and get back to me. He never did, so I didn't bother again.

MONICA

I don't understand myself except it has something to do with 'contracting out', whatever that means. I've also written letters, made phone call, all to no avail. I am none the wiser.

SERENITY

I've just googled it. SERPS stands for State Earnings-Related Pension Scheme. There's a lot of information here, all beyond my comprehension. I'll tell you what, I can do some further investigation for you. I'm not promising you anything, but I'll see what I can do to help.

MAUDE

Thank you.

MONICA

Thank you, that would be great, but I have so much more on my plate.

SERENITY

I'm sorry to hear that, but that is the aim of the group: to share and listen.

MONICA

I don't want to burden you with all my problems. I'm just grateful to be able to get out of the house, to be somewhere and to escape for a few hours.

SERENITY

Of course, always glad to see you.

MONICA

(Pausing) You see, I have a frail, 92 years old father suffering from Parkinson's. I also support my brother who lives on his own and is in and out of hospital; as his next of kin, I'm the only one who can advocate for him. I'm also a carer for my son, who suffers from mental health. He had a crisis the other day, but I didn't know where to turn for help until I was advised to take him to the hospital. I was told to go to the A&E department, but the NHS is so overstretched, and I don't think they're equipped to deal with these kinds of emergencies, and my daughter not so long ago nearly had a fullblown breakdown.

Their Own Voices

SERENITY

Monica, I'm so sorry. What kind of support have you had?

MONICA

I've tried several times to obtain support as a carer for my father and son, but two assessments were rejected. I've contacted services by phone and letter but often found the process time-consuming and often unhelpful.

JEANETTE

The Newham Crisis Café run by Mind that was operating from Stratford Advice Arcade would have been a good place for your son to attend when it was there, but, like so many mental health services, has disappeared.

MONICA

I've approached organisations such as Age UK, and I did receive some support from them. I also got in touch with Carers UK. I'm not knocking these organisations, but I've not received the meaningful support I was seeking and remained unclear about the eligibility criteria, plus these organisations are already overstretched.

SERENITY

How do you think this group can help?

MONICA

I value the support of this group and the carers' group I attend, because they provide a space to share experiences with me and others facing similar pressures, but I feel that practical respite remains the 'missing link'. I believe we carers need opportunities to step away from all these distressing situations, even briefly, to rest and recover.

JEANETTE

I'm a carer myself and read somewhere how we save the government so much money by doing the work we do, because they know we love our families and would not knowingly want to see them suffer.

MONICA

As Black women, or women generally, it feels as if we're expected to continue supporting our families regardless of whether help is available or not. This sense of duty can make it difficult to ask for or receive support, even when the role becomes physically and emotionally draining, on top of all the other problems we have to deal with.

SERENITY

I'm so sorry to hear all that you are going through. How can we help?

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MONICA

I'm just tired, so tired, and so exhausted and worn down with my caring responsibilities. I've received little support from the local authority. I've had no access that would give me some kind of respite, even for a day, but there's little or no help out there for people like me and I'm not getting any younger.

JEANETTE

I know a few organisations that might help you to get some respite care. Talk to me afterwards and I'll give you some numbers. I have a lot of sympathy for you there as I also care for an elderly mother, and despite being a narcissist who has never hidden the fact that she has never wanted me, I still love her and feel I have a duty to care for her.

SERENITY

Have you been able to get any help for her?

JEANETTE

Yes, well, I'm a qualified advocate – been qualified for 10–11 years – so I do benefit forms, PIP assessments, housing, all sorts, so I've been able to get some help for her.

SERENITY

That's good to know that such a resourceful person is part of the group.

JEANETTE

I'm also a volunteer to all kinds of organisations, such as deaf or carers' organisations, but not for advocacy or form filling, where I know there's a lot of demand for. I've asked so many places if I can help out with advocacy but always gets rejected.

SERENITY

Still good to know. We can probably look into that a bit further.

JEANETTE

I also suffer from serious mental health issues, so I know what Monica is talking about, the lack of services and support.

SILVIA

Really! I never knew you suffered from mental health. You don't look it.

JEANETTE

What do you mean? How am I supposed to look?

SILVIA

Well, you know, sometimes you can tell when something is not quite right with a person, or if they look like they're on medication, if they look a bit down or depressed – when someone or if someone has had a breakdown, you know what I mean…

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JEANETTE

OK. So, whilst we are on that subject, first of all let me explain what I think. There's a difference, I believe, between living with mental health and enduring mental health. What I mean is that lots of people live with mental health, but some might only have it for short period of times during their lives, such as the breakup in a relationship, job loss, bereavement, but I've lived with what's known as enduring mental health all my life. I have three types of mental health disorders. I live with post-traumatic disorder, I have another condition called suicide ideation, meaning I've lived with the idea of suicide since my early twenties.

SILVIA

I'm so sorry, you never know…

SERENITY

Let her carry on if she wants to.

JEANETTE

I'm a survivor of domestic violence, I've been raped, and with such multiplicity of issues, have contributed to my mental health. You may think I look 'normal' whatever 'normal' is, but I survive on a daily cocktail of medication. There have been times in my life when I've not been able to get out of my bed for days, weeks even, not being able to wash, clean, eat or take care of myself.

SERENITY

My goodness, I don't have the words. I feel so sad that you have been through so much. Do you think you have received the help and support you needed to overcome your problem?

JEANETTE

No not always. I never got any real counselling or therapy for the rape. My ex-husband was put in jail for a couple of years for the violence he committed against me and my kid, but I had to put all my trauma and recovery on hold so that I could deal with my child and neglected mine. Now we don't even speak.

SERENITY

That must be extremely painful.

JEANETTE

Yes very. I've only got the one. He got jail time, but we got a life sentence. But that was a long time ago. I got a bit of trauma therapy in the end, but a lot of time I had to pay privately for my own treatment. Most of the time, you're not really given a choice, you just have to get on with it. I deal with it by self-isolating sometimes. But you can never forget the trauma, even when you put it to the back of

Their Own Voices

your mind. You know that old saying 'the body never forgets a storm'. SERENITY

How about now? How do you manage, and where do you go for help?

JEANETTE

More recently, I'd come to rely on the services provided by MIND. The Together Café in Stratford Advice Arcade I mentioned earlier was great, particularly for those like me in crisis; it was opened for long hours, I believe every day of the week, accessible, but now that's gone, and I hear the Recovery College that I also attend at the same venue might be moving out of Newham. Mental health has risen exponentially; the services have been cut so much I don't believe there will be much left of a mental health service in a few years. So consequently, I will probably die still suffering from mental health.

SERENITY

Goodness me! That's pretty heavy stuff. Thanks for sharing. That's so brave of you to do so.

SILVIA

(Shaking her head) I – we – had no idea you've been through so much, and still going through it. You're usually such a private person at these meetings. You just never know what might be going on in people's lives.

JEANETTE

Yes, that is so true. Never judge a book by its cover. Throughout my life I have never felt as if I fit in anywhere. I've often felt so misunderstood. Feeling judged without people knowing who I am, or what I've gone through, they have no idea, and most people don't try to find out either. They dismiss me, think I'm just difficult or awkward, rude even.

SERENITY

I think I can speak on behalf of the group that we have never found you to be any of those things. You have always come across as kind and helpful.

APRIL

I will second that, I think you are a very nice person, very kind and considerate.

SILVIA

Me too.

JEANETTE

Thank you. You all don't know how much I appreciate that.

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SERENITY

Ladies, I think this is a good time to take a short break. Is that OK with you, Jeanette, or would you prefer to carry on?

JEANETTE

A break would be fine – give me time to collect my thoughts.

SERENITY

So, who's on the teas, then? And look at all the lovely freshly baked cakes you all brought in, and all these packets of biscuits. Much too much for the small group today, maybe we can keep some over for next week. After a thirty-minute break. The women return to their seats.

SERENITY

Here we go again, ladies. I think we've answered a lot of the next question already which is – Do you feel you are able to deal with most of the issues or problems that occur in your life by yourself? Does anyone have any more to add? Another question is – If you had a problem that you found too difficult to resolve by yourself, say for example – (She reads out a list of examples, such as housing and welfare benefits) – if not, would you seek external advice, and, most of all, would you know where to go to get the advice?

JULIA

For me it's immigration. I have a friend who was one of the Windrush people and she's been given the run around, for example, she was seeking advice at one agency but that not their specialty. So she was referred to a solicitor, and who knows, some of them might not be that good.

APRIL

Some of them tief your money and don't do anything. Laughter.

VERNA

Before we move on, do you mind if I jump in here? I have something to add.

SERENITY

Of course, we haven't heard anything from you so far, so the floor is yours.

VERNA

OK, well, what I've got to say ties in a bit with what Jeanette and Monica was saying about mental health services, but I'm coming at it from a different perspective. You see, I work as an advocate for a charity, and I work with people who are going through a mental

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health crisis or have been sectioned and so on, so I have to liaise with all the services and travel to different places, including hospitals etc. outside of Newham. SERENITY

That's interesting to know. All this talent and experience we have within the group.

VERNA

But looking at it from a personal perspective I want to add that I have Dyslexia and Dyspraxia. One of the ways this affects me in my daily life is I can't read things like Google map. It's like a maze to me.

APRIL

Join the club dear, they might as well be written in Japanese as far as I'm concerned, but you're young. Not like an old dinosaur like me.

SILVIA

You speak for yourself with this 'old dinosaur' thing.

VERNA

I know it might sound minor or simple to most people but for me it causes me endless anxiety in my job if I have to travel to a new place and meeting a new client. I can sometimes use tools like ChatGPT but even that is a challenge. Everything has to be basically written down in simple terms, like go left here, turn right here. I can't understand when they say, go 200 yards down that road, it's so confusing. It needs to be very basic.

JEANETTE

Don't they do specialised apps for that sort of thing? As a double hearing aid user, I'm technically deaf, so I have to rely a lot on these BSL app.

VERNA

Yes, there are specialised apps, but they are not cheap, and as I work as an advocate for a charity, it's difficult for them to pay for these resources, as it's financially restraining in what they can pay for. So, I would have to pay for them privately, and I don't have that sort of cash. If I don't want to be late meeting clients, the only alternative I have in order to find an unfamiliar place is to take a cab, which I have been forced to do on many occasions, at my own cost. I technically can't claim back that expense, but it's a cost I have to bear because it's too challenging for visits outside of the borough.

JEANETTE

Can't DWP support this? I'm sure there are some funds your employers can apply for on your behalf.

VERNA

Yes, my employers did apply to Access to Work, but they were told that if you have more than 250 staff, you don't qualify. My 15

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organisation operates nationally, with projects all over the country. Even though it's a charity, it's expected that companies with more than 250 staff to financially support you. JEANETTE

That's such a shame. Perhaps you could consider applying for a taxi card. I have one, so perhaps I can help you to look at the criteria for applying.

VERNA

Thank you, Jeanette, that would be very helpful.

JEANETTE

Yes, you're right, most of these specialised apps are not free, especially the good ones. I'm fortunate to have lots of BSL apps on my phone but have to buy the minutes. Some services are free, others are not, so if you want access to a specific service you have to buy minutes, which is not the same as data. For example, if I need help to phone audiology to book an appointment, I got minutes with an organisation to ring them up for me. It's separate from the minutes and data you get with a phone contract. Minutes are not cheap. I've got what's called a retirement pack i.e. 300 minutes for £200 a year, and that's just one of them.

SERENITY

Verna, are there any other work-related or personal problems you encounter because of your dyslexia and dyspraxia?

VERNA

Yes, sometimes at work I need support especially if dealing with complex information that has to be taken in all at once – to break it down and help to understand in a more simplified way. But I don't want to take up any more time about my issues.

SERENITY

Like I said, everybody's issues are important, no matter how big or small, and, as the saying goes, that not all disabilities are visible. I know I intimated earlier about the possibility of you sharing your skills and expertise with the group, but it works both ways, and we can explore the many issues you have raised or have yet to raise over the coming weeks. We can't expect to resolve all the problems and issues in one session. Right, let's look at a few more of the questions. Again, we've probably covered lots in the previous answers, I'm a bit conscious of time, but here we go.

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(Reading from her laptop) Have you ever had to seek free legal or general advice for any of the issues you raised above? Have you ever needed support but did not know where to go? Have you ever felt excluded from services? Can you tell me about it? What do you feel makes it easier or harder for you to access services? Who wants to go first? Wait, there also a question about telephone access, and I know that's something you all struggle with. The question is – how do you feel about using the telephone as a means of accessing support? Give an example. APRIL

I think getting through to the local council by phone is extremely difficult, I get so frustrated because they're telling you to press 2, then press 3 and 5, transferred 6 and you still can't get through to the department you want and eventually get cut off.

MAUDE

Same with their website. It's the worse to navigate. Just getting a parking permit, for example, it's a nightmare. I complained numerous times. It's not user friendly.

MONICA

I have a problem with council workmen not turning up when they have appointments.

APRIL

Don't get me started about them. My great aunt called the council about her window. Someone finally came and fixed it. She had another issue with a leak from the upstairs bathroom that was seeping into and affecting the electrical outlet. The council was called, who disconnected the supply and they were supposed to come back and fix the bathroom issue. This guy turned up one day to fix her window and she's like, we haven't reported no window. We reported the electrical works in the bathroom. He said he can't see that in the paperwork. She told him someone had come to fix their window about 4 months ago. His response was, well we need to put that back on the system then.

MONICA

Same thing happened to me. The council said they were coming to fix my window as well. I stayed in all day for them, didn't leave the house and nobody turned up. 2-3 weeks later, someone came when I was at home and I heard like something drop through my letter box.

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I went to look and a note was in my letter box to say they called and no one was at home. APRIL

I know lots of people have that same problem. Same story all the time. It's so frustrating.

SILVIA

I'll tell you what also happened to me. This woman who claimed she was from the council knocked on my door this January gone to say they were trying to help older people like me in the neighbourhood. She said I might be eligible for Attendance Allowance and offered to send someone from the council to help me to complete the form. I ordered the form same time in January '26 and up till now I'm still waiting for the help to come. The woman left her card with her number. I phoned the council to try to speak to the person but no luck. I could never get hold of her. Sometimes I get these calls from a private number, and I think it might be the same woman who rang, but how can you return a call on a private number?

APRIL

That's not right. What's the point in raising your hope up like that?

SILVIA

I know. I wait and wait and wait out of patience. Now it's June and nobody contact me, and as I didn't have a clue where to go for help, I tried my best to fill in the form by myself. It was over 55 pages you know, and there's plenty parts I didn't understand. When I phone up for the form, they told me they will backdate the claim from the date I phone them, but then form went out of date, and I had to apply for another one.

JEANETTE

That's shocking thing to do, first. First of all, why are they knocking on vulnerable people's door and making hollow promises? Really sorry to hear that, April. If you like, I will try and find out who might be able to help. I think there might be someone based in Stratford Advice Arcade.

APRIL

It's ok as I did the form myself in the end. Took about four weeks to complete. I did it bit by bit until it finished. I was advised to complete the form online but I'm not into that online business, so they sent me a paper one. I think it might take a couple of months to be approved. It's good when you can help yourself but it's not everybody that can help themselves. So many things that people may be eligible for, but they don't know about it. It may not be well publicised.

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JEANETTE

For future reference, in case anyone else might need assistance, I might be able to find out about who can provide this service. I know I have experience in doing these forms, but I wouldn't want to promise anyone something that I might not be able to deliver. Those forms can take hours to do and so much information you have to gather.

SERENITY

And of course, as a member of this group, we wouldn't want to place that burden of responsibility on you.

VERNA

Same for me. Although I have to assist clients with these issues as part of my advocacy role, I'd prefer to signpost or give some guidance as opposed to doing the task myself.

SILVIA

Another thing is, to be eligible for pension credits, you have to go through loads of hurdles – tell them your whole life story, when you get married, when you got divorced, when you get sick, if or when you get better, just to get a few extra pennies.

JULIA

There's no way I'm going to tell anybody or everybody about my business just to get a few extra shillings. I've got my two pensions and my little bit of savings, no debt, mortgage free so I'm managing fine. What's a couple of hundred pounds a month going to do for me? It's not going to change my life materially.

SILVIA

(Sighing) I'm just managing on my one state pension, no extra income, but I'm just fine with that. I remember a time before I reach pension age when I had nothing, not a dime. I lost my part-time job and they stopped my benefits for whatever reason I can't even remember, so I didn't even have a few change in my pocket. Some days when I look into my fridge it was empty, cupboards bare, not even a slice of bread to butter. Even though I had no food to eat I feel too shame to go and ask my children for help. I didn't want them to know how far I'd fallen, but I'm fine now with my little pension. I make it stretch, and now I have my allotment I go to every day or when I can. I go and sit there, tend to my produces and thank the Lord for his goodness and mercy. I always share the extras with my neighbours and family.

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JEANETTE

So many things people might be eligible for, but they don't know about it. It could be the information may not be well publicised. I'm sad you went through all that, particularly as I know where you can go and get a free meal every day, and I'm not just talking about food banks. I did my research and produced this comprehensive list. I can share that with the group.

SILVIA

If I knew, I don't mind applying for something once I'm eligible, and I don't object to people knowing my business either if it will help me. There's not much to know anyway.

MAUDE

Yeah, but like Silvia says, they can make you jump through so many hoops. You know I suffer from MS, so I applied for PIP before Covid. I got all the symptoms, fatigue, painful joints, bladder and bowel problems but got refused. I didn't bother to apply again.

SERENITY

Did you complete the form by yourself?

MAUDE

Yes, I did, I realise now that perhaps I should have got some help, but I didn't really know where to go. I probably didn't include enough information. They even called me in for an assessment interview you know.

SERENITY

I suppose that didn't go down too well, as they rejected you.

MAUDE

I took a cab there, but it looked to me as if the assessment was: could I walk in, could I sit down and get up? I don't know what kind of medical training they had. They asked questions, but there was no indication that it was a medical assessment in my view. Things have probably changed now with more criteria, but I was put off and couldn't be bothered to try anymore.

JEANETTE

Did you go to the assessment by yourself?

MAUDE

Yes, I did.

JEANETTE

I always try to tell people, you can't go into these places by yourself, you need to find someone to go with you. I found out from experience that when someone like me with mental health problems go for benefits assessments, you can't go looking smart because they will think you're too presentable. You got to go looking scruffy, you can't make good eye contact, and it's no good if your speech is too

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eloquent. They don't tell you they have cameras, but I'm sure they do and they're watching you all the time. SERENITY

No way! Is that even legal?

SILVIA

It would be good if there was an agency that could do an eligibility check for the people them. Would be so useful. At least you wouldn't be sitting down to complete a 55-page form only to find out you're not eligible.

JEANETTE

That's the problem when it comes to filling in all these form. They're so complicated and you can't afford to make any mistakes, that's why you need a trained professional to help you to do it.

MAUDE

Can I just add one more thing to the discussion about telephone contact, before we move on?

SERENITY

Yes, of course you can, we seem to have lost the order, but it doesn't matter that much.

MAUDE

Yeah! I too get frustrated with these automated systems, and everywhere they're encouraging you to go online! Go online! But not everyone is comfortable with that. The NHS is definitely heading in that direction.

SERENITY

Umph! How do you mean?

MAUDE

I don't know if anyone has heard of the EMMA system. Well, my GP surgery uses it and I would not recommend it, avoid it if you can. It's basically an AI system that when you ring up, it asks you questions about your problem and reason for wanting to see a doctor. It didn't understand my problem. I wanted to speak to a human receptionist, but there didn't seem to be a way I could bypass it. I was given the option to ring 111 or 999 or go to A&E. I complained to the surgery and told them EMMA was rubbish.

SERENITY

That must have been very frustrating. I can't say I've heard of that system. Has anyone else tried to use it?

MAUDE

I'm telling you, with my MS I try to reduce my symptoms by managing my stress levels, but that added to it. I consider myself a bit savvier than the ordinary person when dealing with these types of encounters, but can you imagine an 80-year-old trying to

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understand the system. I'm also a bit concerned about completing online assessment forms. You don't know who is assessing them, whether they are trained doctors. If I give you an example: when I was working as a midwife, I will think it's essential to have a face-toface with an expectant mum with swollen legs, as this could be symptoms of pre-eclampsia, not rely on an online or telephone assessment. So now I have to go into the surgery to make an appointment, which is ok for me, but what about people with disabilities, or the elderly who can't get about so easily. SILVIA

Sign of the times I suppose. I remember the time when if you wanted help with a whole host of things, there were several Citizen Advice Bureau operating in the borough.

MONICA

Yes, there was one in Custom House and Canning Town; there was also this other legal advice centre, I think it was called Canning Town Legal Advice Centre. That closed down and the CABs were all moved under one roof at Stratford Advice Arcade until that also closed. This happened years ago and was never replaced to the same level.

SILVIA

Don't forget Community Links as well. I also remember when the CAB used to do these sessions at Stratford Advice Arcade, I turned up there one morning at roundaround 7am to get some advice about my housing, thinking that I may be the first one in the queue, but there was a lot of people already in front of me, some were there from 6am, just for a handful of appointments.

APRIL

Same thing for their makeshift office that followed in Beckton I think, this was before Covid, there was some almighty long queues, just like at the Arcade, and you were lucky if you did ever get seen. Now, does anyone know if there's anything in its place?

SERENITY

I'm sorry ladies I can't be more helpful; that's the type of information that our guest was supposed to provide. I have heard that a new CAB office has opened up in Canning Town, but I need to find out about their opening hours, whether it's appointment-based only or they provide drop-in, plus the type of telephone service they provide.

MAUDE

Please don't talk to me about their telephone service. One time after Covid you could only contact them by telephone. When you ring them and after going through a list of questions and button pressing,

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they put you on hold. I'm telling you. You could put them on loudspeaker, cook a full English breakfast, have a shower and you're still there waiting for them to pick up the phone, that's if they don't cut you off first. SERENITY

Hopefully, the new service is a lot more efficient.

JULIA

Umph! We can only live in hope, but I won't hold my breath.

JEANETTE

There's also that Mary Ward Centre opened up in Bow. I was going to do some research on it, and I'm wondering what Community Links is up to these days.

SERENITY

Let me know what you find out and I'll circulate it.

MONICA

I found Age Concern, or Age UK as they are now called, quite helpful, but like all these services, they are so overwhelmed and under resourced. I hear there's a small voluntary organisation based at Stratford Advice Arcade that does a lot of these things, but I think it's more or less a one-man band. Worth checking out though.

VERNA

Some libraries in the borough, such as East Ham Library, provides some useful services that it might be worthwhile checking out.

MONICA

That's correct. I'm not sure which library it is but this young woman used to help the community with form filling etc. She was so good, so thorough and patient, I hope she's still there. You can't beat a faceto-face service.

VERNA

Having lived in Newham all my life, there is an assumption in some circles that you know or should know where everything is and can refer yourself to these services. But the truth of the matter is the majority of people may not know about the different services in the borough. Like I said earlier, I am fortunate to be an advocate, so I have a different level of awareness.

SERENITY

What does an advocate do? I know your area is mental health, so can't speak generally.

VERNA

As advocates, and as you have stated, dealing specifically with mental health, it is our duty to help clients to be independent and assist them on how to navigate the different services. Helping clients is about speaking up for them, giving themselves a voice. However, when

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dealing with the council for example, sometimes we are taken 'for granted' and we develop a feeling that things are 'dumped' on us to just get on with it. They can still give the client the runaround even when there's an advocate on board. There can be all this miscommunication found between departments or services where it should be notified that a person has mental health or physical disabilities, and appropriate help and support provided, but often it's not. In these circumstances, it is important that we as advocates communicate to the clients, there's a limit to what we can achieve on their behalf, that it's not about waving a magic wand to make things right for them. JULIA

Fortunately, my daughter does everything for me. My son as well, but he's not as patient as his sister.

VERNA

What was said earlier about the services, particularly the voluntary services, being overwhelmed due to lack of funding and resources will lead to people getting exhausted and disillusioned. I know it is difficult to understand or appreciate their heavy workload when you may be in a desperate situation yourself. But from an advocate's point of view, we can't be everything to everyone. We have to manage expectations to minimise the inevitable disappointment that arise from this.

MAUDE

I recently tried to use AI to assist in filling in a form. Maybe that's the way forward, whether we like it or not.

SERENITY

My goodness. What is the answer besides more funding on a local and national level. Thanks ladies, that was quite a bumper session. I think we have exhausted most, if not all of the topics. We've – or should I say I know I have – strayed away from the sequence of question, but we covered so much.

JULIA

It's a good job that poor woman didn't turn up here today after all, because all we did is moan, moan, moan and complain like miserable old farts.

SERENITY

Julia, language. I will not accept that at all. I don't see the heartwrenching and soul-searching contributions as moaning. I applaud all you beautiful women for responding to the questions with such

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honesty and sincerity, which must have been quite difficult and challenging as we are still a new group. Hopefully, by sharing, it may help someone else in the group, or someone they know. Thank you for having the confidence in me and in each other.

JEANETTE

Thank you for providing the safe space to do so.

MONICA

Ditto.

SERENITY

I've taken comprehensive notes and when I go through them, I will highlight the areas I can seek help. Jeanette and Verna have also agreed to do some fact-finding research for me, which I will share. I don't know about you, but I found our time spent together today both poignant and uplifting.

SILVIA

I can't speak on behalf of the other women, but I totally agree with what you have just said.

SERENITY

So, ladies, now that we've come to the end of our session and we have not really explored digital access in any great details and I know that's an area of great concern for many of you, so perhaps we'll make that a single topic for our next gathering.

APRIL

Yes, definitely. You know I have a lot of anxiety about all that online and AI stuff, so I'd welcome as many sessions as possible on that topic in our ever-changing world.

SERENITY

OK, so everyone agrees with that. What other topics would you like on the agenda for our upcoming meetings?

JULIA

I would like a session on the Windrush as we didn't get to talk about it earlier. I'll bring my friend along to the meeting as well.

SERENITY

That's a good subject, a big one. I went to this seminar a few weeks ago attended by a couple of women affected by the Windrush scandal. One of the women speakers was the first person to get compensation from the scheme. Maybe we can get one of those women or an agency providing legal advice and support to come to a future meeting.

MAUDE

Yes, definitely. I also like the idea of wills and probates, and trusts.

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SERENITY

Yes, that's another good topic. What do you think, ladies? The women shout out in unison.

ALL

Yes!

SERENITY

Good, so that's agreed.

JEANETTE

Well, I'm not particularly bothered about wills and those things as I don't have anyone to leave anything to. When they find me, I will have a note pinned to my fridge with my final wishes.

JULIA

That's the saddest thing I've ever heard. We all know from what you said earlier that you and your child and grandchildren are not on speaking terms, but time is a great healer. You never know, in time you may connect again. All you have to do is leave it in the hands of God.

JEANETTE

I know. It was tough. No child should have experienced what she went through at the hand of that monster – a price I will pay for the rest of my life, but despite everything, I tried to be as good a parent as possible under the circumstances.

JULIA

Never mind my dear, only time will tell. My old mother used to say, when man on earth have done his best, the angels in heaven could not do better.

THE END

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