Examination of witnesses

Chineye Njuko and Rie.

The Chair: Welcome. I am Hilary Armstrong. I chair the committee. As I think you know, my colleague on the committee Laura Wyld will actually be the one to talk with you. I just wanted to say welcome. She will say a bit about what we will be doing this afternoon. It is really good, because we want to hear the voice of lived experience.

Q128 Baroness Wyld: Hi to the witnesses. My name is Laura, as Hilary said. I will tell you a little bit about what we are doing as a committee and then, if it is okay, I will lead the discussion with you two.

We are the Public Services Committee in the House of Lords and we are doing what it says on the tin: we are looking at the role of public services, particularly in this inquiry in helping vulnerable children. We are looking at how well they are doing that and how well they might not be doing that. Our job will ultimately be to come up with some recommendations based on the evidence that we hear. We are talking to all sorts of people, both the people who run public services and people who have been involved with them, but we also want to get a very clear view from people with lived experience, which we know you have.

The most important thing to say is that this session is completely private. The only people who will hear it are the people who are on the call today. It is not being broadcast like public sessions are. Feel free to say whatever you like. If there is anything you do not want to answer, you do not have to answer it. If you think I have gone down completely the wrong road, which is entirely possible, just tell me. We will take it from there, if that sounds okay. When we start, please tell the committee your name to start with.

You both, as I understand it, have had support from Our Time and possibly other services. Could you tell me a little bit about what life was like for you before you got any support? We will start from there.

Rie: I started my mental health journey in 2011 when I was pregnant with my daughter. I moved from one location to another location in the UK due to my husband’s work. The support I had when I fell pregnant with her in Somerset was fantastic. I had weekly appointments with a consultant. It was great. The mental health team was on board; the maternal mental health team was on board, et cetera. I moved down to Plymouth when I was 36 weeks pregnant. Luckily, I am from Plymouth, so I had all my support bubble back here but no professional support whatsoever.

I bumbled along a little bit until 2014 when I fell pregnant with my son. Then I had what is called postnatal psychosis. It is quite a severe sort of mental health diagnosis. I thought that he was trying to kill me and that he was possessed by the devil. I was in and out of hospital from 2014 to 2016, every other month. I had a three and a half year‑old daughter and a newborn. My husband works in the NHS, so his hours are not flexible and he cannot take days owed. We were all alone. We did not know what we were doing. No one really knew of any support. I was going to local children’s centres groups, such as a baby morning group, to keep myself in that community and to try to build the support that I really, really needed.

In 2016, I had a complete meltdown. I got sectioned under Section 3, so I was detained for four months for mandatory treatment. I could not say no. Another patient there mentioned KidsTime. I mentioned it to my mental health worker and they passed it on to social services, but none of the staff knew what KidsTime or Our Time was. None of the social workers knew; the school my daughter attended did not know. Since we started going, I have never looked back, ever. They are fantastic in everything they do.

Baroness Wyld: Thank you for being so open and telling us all of that. Goodness, what a tough journey you have had. I am really sorry to hear about it. Before we come on to KidsTime, which sounds fantastic, I just wanted to check something. Am I right in thinking that you had good antenatal care in Somerset?

Rie: Yes, it was absolutely fantastic.

Baroness Wyld: You were under consultant care and you were under the mental health team, and then you moved and the chain broke. Is that right? What happened in the middle there?

Rie: When we lived in Somerset, although I was under consultant care, I was under the midwife‑led team for births and stuff. I had a special mental health midwife who I could access at any time. When I left Taunton, we tried to make sure that was all in place in Plymouth, because I knew I needed it still. My whole family lives down here, but that would not have been enough to keep me going. We got here at 36 weeks pregnant, and that was it. There was no help there. I did not see a midwife in my GP surgery. They had one scheduled for four days after I gave birth, so I had no antenatal care whatsoever down here.

I gave birth. My daughter came on her due date. If it was not for me accessing the children’s centres and putting myself out there, I would have had no help whatsoever. In Plymouth, you have two mental health roads. There is one called Options, where you can self‑refer, which does CBT and basic therapies, or you can be under the mental health team. Options said I was too ill to be under it; the mental health team said I was not ill enough to be under it. The GP service, as you all know, is stretched to the absolute limit. The midwife said she could not give me care, because she did not have the notes from Taunton yet.

The chain completely breaks down. That is from one county to another. I was only an hour down the road. I could have brought my notes down with me.

Baroness Wyld: That is very frustrating. I will come back on KidsTime, but I want to move to our other witness. Hello, would you like to introduce yourself and again give us your experience?

Chineye Njuko: Hello, everyone. I attended a KidsTime workshop and then moved on to deliver some workshops for the team. I now work as a trainer at KidsTime. I guess my experience started from birth. When I was born, my mum developed bipolar disorder. At the time, my dad did not really know much about mental illness. I am 32 now; that was a long time ago. There was not much information.

He resorted to religious intervention. He took the family to Nigeria to seek religious intervention for my mum. At that time, of course, none of the exorcisms and traditional healing methods worked for her and she deteriorated. I was two when we left the country. She deteriorated and she came back to the UK, and she left me and my sister there. At that time, people used words such as “mad” to describe my mum. At that time, my own experience of my mum is that I had a mad woman as my mother. My understanding of “mad” was based on the cultural context. Mentally ill people were not looked after. You would see them on the street, acting insane and unkempt. I thought that was who my mum was, and of course that made me feel ashamed of her and I did not really speak about her.

Eventually we moved back to the UK, after seven years or so. When I met my mum, I had my own ideas of what that experience would be like. I thought it would be a fairy tale ending, but it was not because she had a relapse. She was ill and everything was so confusing for me. I could not understand my mum. I did not have any connection with her. Of course, she was happy to see us, but she had a relapse. She was just overwhelmed by the joy of seeing us. From what I remember, my mum’s social workers came in. I have an older sister, and they made the decision to split my sister and me while she was in hospital. In this conversation that was had, all the decisions were made for us. I stayed with my auntie in London and my sister stayed with another aunt in Milton Keynes. I felt really, really sad and really confused.

I went on to primary school. I did really well educationally, but I was really, really sad. I isolated myself from people. One experience that stands out for me is my primary school teacher. She took interest in me. She showed that she cared for me. She would often ask me, “How are you?” I did not feel like I could trust her; I could not open up to her. I felt ashamed of my family experience, so I did not really say much about my family. Eventually, she was persistent and she showed that she cared. I eventually opened up to her and she involved me in extracurricular activities.

Another thing to note is that I had a lot of shame. I was ashamed of my mum. I wanted to seclude myself from any sort of social activity. On reflection, I can see all the signs of social anxiety and low self‑esteem building up within me. There was no space to talk through what was in my mind or to talk through my mum’s mental health difficulties. There was a lot of confusion about who my mum is. “Maybe she is a mad woman”. I hope we will come on to it, but the education that I needed took place at KidsTime.

In my experience of the social workers, it was very difficult to know who was who. I did not feel as though they spoke to us. Things might have improved, because it was a long time ago, but they did not speak to us. I did not know who was coming in and who was going out. There were different faces. No one really included us in the conversations. From my experience of my mum coming in and out of hospital, I could tell all the signs of her illness. After a while, I could see all the signs. When I would think that she was ill, I was not believed. That is my experience before KidsTime.

Q129 Baroness Wyld: Chineye, thank you so much for going through all of that with us. It strikes me that you had this very good teacher in primary school who was able to reach you and help you. You have talked about social services. Were any other people or services helping you before you made your way to KidsTime?

Chineye Njuko: No, we did not have any other services. I did not even know that I could have counselling or therapy. I was not aware of any other services. We did not approach any services, because we were not aware of any. Eventually, around age 14 or 15, we were informed about KidsTime.

Baroness Wyld: Given that we have got to it, shall we talk about that? I will then come back to you, Rie, and talk about your experiences. Chineye, take me on. You have your teacher who helps you; nobody else is helping you. How old are you when you come to KidsTime?

Chineye Njuko: I was about 14.

Baroness Wyld: Can you tell the committee what happened there and how they were able to help? Were there any other organisations involved?

Chineye Njuko: I remember my first day at KidsTime. I was overwhelmed and daunted by the whole experience of seeing children playing around, adults talking and things like that. It took me a while to come out of my shell, but, having experienced that it was a safe place where you could talk in a free way and not be judged about your experience, your parents or the fact your mum has a mental illness, I was eventually able to open up and disclose what was happening to me. That was the antidote that I needed to my shyness and anxiety.

The KidsTime workers acted as advocates for us. It was quite difficult with the crisis team at the time. Every time my mum had a relapse, we would contact the crisis team. That is another service that was involved. I remember one occasion when I saw the signs and symptoms. She always complained about a pain in the middle of her head. I would just know it. My sister and I knew she was ill.

I contacted the crisis team. A nurse came round, assessed my mum and said, “No, she’s fine. She’s okay”. We knew that a relapse was about to happen, and that she needed help. We contacted Alan Cooklin, who was the founder of KidsTime, and he got on the phone to the crisis team. A psychiatrist came round, assessed my mum and said, “She’s unwell”, and she was sectioned.

Another experience where they acted as advocates for us was when my mum was in hospital for a very long time. No family members wanted us; well, we could not identify a family member who would allow us to stay with them. They were deciding whether we would go into foster care. They gave us some money. We had different social workers coming to the house, and we ran out of money. Again, we did not know what to do. We called Alan Cooklin again. He spoke to them, and they came round and gave us money, because we had run out of money and food. That is another experience where they acted as advocates for us.

The services we had involved with us were my mum’s social workers, the crisis team and KidsTime. KidsTime is where we got holistic support from in a way. That was where we would run to if we needed any form of help. Those were the people we knew to go to, and we felt very safe going to them, because they were all very kind and they made us feel so special. They gave us the education that we needed about mental illness. It does not necessarily have to be a complex description of what mental illness is. It is just about knowing, “This is an illness. It’s not your fault”. Often family members would blame us for our mum’s illness. I felt, “It’s my fault. I need to be well behaved. I need to keep the house clean. I need to not argue with my sister, so that my mum is well”. It was a huge consolation for me to know, “It’s not your fault. It’s an illness. If you get treatment for it, it’ll get better”.

Q130 Baroness Wyld: Thank you, Chineye. I will give you a break now, because I always talk too much and ask too many questions. Thank you, because it is hard to remember things and talk about things. I want to come back and ask you a few questions at the end, if that is okay.

Rie, remembering everything that you told us, from what you talked about it sounds like bits of the system worked well. You talked about the children centres being a source of support, but then you went to KidsTime. Is that right?

Rie: Yes, we had social services input in 2011 and 2014. In 2011, off the cuff, the social worker came into the house. My husband is an A&E consultant; he is a doctor. Within five minutes of initially meeting this social worker—we did not even have her name; she did not say, “We’re going to come round. I’m so‑and‑so. What’s the best time to talk to you, because you’ve got a newborn baby?”—she said, “I’m going to make an example out of you”. Those were her first words. From that sentence, we felt, “We have no one we can trust to turn to if I’m having a bad day. What other service can I access?” I was trying to educate myself, go forward and do things myself. That was the first sentence: “I’m going to make an example out of you”.

We then got put on a child protection plan. In her words, mental health illness and parenting do not go together. I did not ask to have a mental health diagnosis. I did not wake up one day in 2011 and think, “I’m a bit bored. I can’t be bothered to go to Tesco. I’ll have a mental health diagnosis instead”. I have a diagnosis of borderline personality disorder and complex PTSD. I had significant trauma in my childhood. When I fell pregnant, it all came to the surface.

She was not very nice. In a way, I pushed myself to get better before I was meant to get better. I bumbled along and then in 2014, when I was getting sectioned every other month, and the place of safety was in the local police station in the cells, I was ready to change myself. I quickly learned that no one is going to do this for me. As much as I want them to take a massive chunk off my shoulders and help me along the way, it was quite evident that Plymouth has a complete lack of that support.

So I bumbled along. I was discharged off my section in January 2017. We were still under another child protection plan then, with a different social worker, thank god. He was much more approachable. I felt much safer around him. I felt that my children could just be children. Like I said, someone said to me, “Try KidsTime”. I said to the social worker, “Can you see if you can get us into KidsTime? Has Plymouth even got KidsTime? Another patient mentioned it to me”. She said, “I’ve never heard of KidsTime. I’ve never heard of them” and completely dismissed it.

I went on trusty Google, and I found all the information myself and the location. I gave the social worker the phone number and the address of KidsTime and asked, “Please can you get us a place?” Three weeks later, we were sat in a circle with lots of other families. You could just be you. Both my children have a diagnosis of autism and ADHD. At the time, my daughter was in year 1. She had just started her primary school journey. Now she is in year 5. The amount of growth that she has had because of KidsTime is amazing. Every year the school does a children’s mental health week. She openly admits that she does not find school easy; she is very behind intellectually and mentally, but that week is her favourite week, because it is KidsTime week.

She takes in the activities we do, and she suggests things to the teachers. For someone who is nine years old, but who is mentally probably a six year‑old, her knowledge and understanding of mental health is astonishing. It has educated all of us, which is what we need. We can be ourselves when we finally get back to face‑to‑face meetings. You do not have to hide under anything. You do not have to mask anything. You do not have to be that person or the front that you want everyone to see. For two hours, you can just be Rie, who has all these things wrong with her. I can let it go for two hours and vent. They never judge. They never say, “We’re too busy”.

Q131 Baroness Wyld: Thanks, Rie. It is great that you have both shared different experiences of the support you have had from the organisation.

I have one wrap‑up question. You have had support from KidsTime. Some things worked well; some things did not work well for you. What would you like to see happen in public services? I know that is a big question, but, if you could give me one thing that you would like to see, that would be hugely helpful. Chineye, it is your turn.

Chineye Njuko: That is a really good question. Services should target the whole family. At the moment, it is very separate. You have the children’s mental health services and the adult mental health services, and there is nothing in between. We know that the family unit is the bedrock for children and parents. Having a service that targets the whole family is so important, because conversations need to be had between parents and children. That is one thing.

Another thing is the early identification of young carers, children or families who need these services. I identify as a young carer, but a lot of children do not identify as young carers. While there might be a problem that they are facing, they might not know that it is a problem and that they can access services based on what they are experiencing. All hands need to be on deck. It is not a job just for the mental health services; it is a job for everyone: for GPs and schools. Thinking about my experience in school, if I did not have my primary teacher there involving me in things, the school experience for me would not have been as it was. It would not have been positive in the end. It is not someone else’s job; it is everyone’s job to identify who needs services.

There need to be more services. KidsTime needs to be in every borough, to be honest. I work in mental health services, and the KidsTime model is unique. It is different from what I am used to seeing and what I work within. The model looks at the whole family and it does not stigmatise people. People do not think they are coming into therapy. The experience is cathartic; it helps and it is preventive. When I come across a parent who has a mental illness, I can hear that the children are being impacted by this but there is nowhere to refer the family on to if there is no KidsTime in that borough. If there were a KidsTime in every borough, we could refer families to this service or others like it that follow this model.

There also needs to be education about mental illness. Yes, we are talking more about it, but there is still more work to be done. There is huge stigma. We are hearing this huge stigma in all areas of life. That is what I can think of.

Baroness Wyld: That is great, Chineye. Thank you. If I had had time, I wanted to ask you more about your experience as a young carer. I have not been able to do justice to that today, but thank you very much for flagging that.

Rie: Early intervention is crucial. Like Chineye said, we need to look at both the children and the parents. It is not saying, “Okay, we can help the parents by giving them a crisis team number, and the school has a teacher”. Of course, teachers are invaluable in every situation in life. Like I say, both my children are on the spectrum, and they have worked wonders for us. We definitely need early intervention.

We need more education, even at a school SENCO level, so the school SENCO can identify whether parents are struggling and then refer to KidsTime that way. There needs to be more joined‑up thinking. People often say, “That’s my job, that’s your job” or, “We haven’t got that on our checklist for another two years”. Mental health will never go away, so let us stop hiding from it and tackle it.

That social worker said to me, “I’m going to make an example of you. It’s your fault for having mental health problems”. We need to teach these children that it is no one’s fault; it is just something that happens. It needs to be as commonly talked about as spraining your wrist or breaking your ankle. We need to stop running away from the horrid words “mental health”. Nothing will be done about it; we will have a generation of children growing up now and end up having the same conversation in 10 years’ time with my children or your children. The cycle needs to stop now.

Baroness Wyld: Our children are roughly the same age, actually. I very much agree with much of what you have said. I have run out of time. I have written pages of notes. I am sure the rest of the committee has as well. I have personally taken away a huge amount from that. On a personal note, I wanted to say a big thank you as well. You are right: we should be talking about mental health, but it is often not easy to talk about your own experiences. I found that hugely helpful, and I am enormously grateful. Thank you.

Chineye Njuko: Can I just add one thing on funding? Funding services like these is definitely good. We need the money. Mental health services need funding, definitely. That is just one thing that I wanted to add.

Baroness Wyld: Well said, Chineye. That is a good point to land on.

The Chair: Thanks very much to both of you. Helena, you have been listening in from Our Time. Thank you very much for the work you have done in helping to prepare Rie and Chineye. If there is anything that any of you have not said and wish we had heard, please let us know. I am sure, Helena, you can co‑ordinate that. I am very sorry, but we have to finish this particular part of this afternoon’s session. Thank you.

Rie: Thank you for listening to us.

Chineye Njuko: Thank you.