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‘When I walk into a room it goes quiet’ - two Norwich people speak out about their battle with mental health issues

PUBLISHED: 13:38 23 November 2016 | UPDATED: 17:30 23 November 2016

Taylor Long, 18, from Old Catton, who has written an open letter to Norfolk and Suffolk NHS Foundation Trust (NSFT) on her blog, Being Tay. Photo: Taylor Long

Taylor Long, 18, from Old Catton, who has written an open letter to Norfolk and Suffolk NHS Foundation Trust (NSFT) on her blog, Being Tay. Photo: Taylor Long

Taylor Long

At the start of our mental health campaign a year ago we hoped to help reduce stigma attached to mental health illnesses and to get people talking about it.

That is the hardest aspect to measure.

We can see if there has been a fall or rise in spending, an improvement in staff morale or fewer patients being sent out of area.

But how do you measure whether people are now more willing to talk about mental health issues?

The Time to Change campaign, led by charity Mind, hopes to end stigma around illnesses by getting people to talk about their issues.

Today we publish stories from two people who have mental health difficulties.

•‘I felt lifeless, just not motivated for anything’

A teenage blogger has spoken out about her experience with mental health services in an open letter addressed to the Norfolk and Suffolk Foundation Trust (NSFT) which provides mental health services in the region.

Taylor Long, 18, wrote the post on her blog Being Tay after the trust was lifted out of special measures by inspectors last month.

But Miss Long, who has suffered with mental health issues since she was around 14, said she still had concerns.

In the blog post, the Sprowston Sixth Form student, wrote: “I really have no idea how you managed to climb your way back up as I know that for myself and many others, our care has gone spiralling downhill, to the point where I am not even sure if I am classed as a service user anymore.

“Not that it’s a bad thing because I can barely even breathe in the daunting waiting room that 80 St Stephens Road offers.”

Miss Long first encountered NSFT through the Child and Adolescent Mental Health Services (CAMHS), when she attempted an overdose in 2012.

And since then had been seeing mental health professionals and attending group sessions to help with her depression and anxiety.

At one point she was sent out-of-county to a psychiatric hospital for treatment.

“I felt lifeless, just not motivated for anything, I’d want to lay in bed all day,” she said. But she said she had been told by caseworkers that their workload was too much to see her, that there wasn’t enough money in the service, and that she could only be seen once a fortnight.

At one point she said that due to caseworkers’ annual leave she was told it may be six weeks between appointments.

Miss Long, who lives in Old Catton, asked: “Why do the service providers within this service think that it is fine to make the users feel insignificant and unworthy of support?”

“I know that I should be grateful as there are many people still on waiting lists, but how can I be thankful for something that if anything, has only damaged me further?

“I know that hiding away somewhere, there are some good staff members but its not always easy finding the good out of a bad bunch.”

Miss Long said not all of her experiences with the trust had been bad, and that she had learned some coping mechanisms through their care.

But she was insistent that if more was done earlier to support people, they might not end up using the services in the first place.

“They helped me to understand what was wrong with me and how to talk to people about it,” she said.

“But I wouldn’t say anything has got better. I know how to manage a lot more now but things like self harm got a lot worse.”

To read Miss Long’s full post, visit beingtayy.blogspot.co.uk
Due to her experiences with mental health, Miss Long is raising money for Mind through a charity skydive, early next year.

To find out more, or to donate, visit www.gofundme.com/mfxtzp6s

•NSFT’s response

The NSFT said they were not able to comment on individual cases, but were able to answer general questions around some of Miss Long’s concerns.

They said they had a clear approach when appointments need to be missed or rescheduled, either due to service users’ commitments such as sickness or holiday, or due to staff commitments, such as unexpected leave or planned holiday.

A spokesman said: “In the majority of cases, if the service user is not in crisis or there is no immediate clinical need, a new appointment date is set for the next available time with the same case worker.

“This is to ensure continuity of service and to avoid the service user needing to see a new person for just one or two appointments, which can be less effective, particularly in cases of long term therapeutic work, such as with young people with conditions such as personality disorders.”

They said if an appointment starts late, they would carry on for “the full amount of time required for the service user’s needs.”

They added: “Equally, if a service user is in distress or requires additional support an appointment can go past a scheduled hour. This can, of course, knock on to following appointments with other service users, which may then start later than planned.”

They also said services would not be withdraw due to self-harming.

“As distressing as self-harming can be for those around the person, in mental health services it is often recognised as a ‘coping mechanism’ for some individuals,” the spokesman said.

“Trying to prevent this behaviour can often be more distressing to the service user than focusing on the issues behind self-harming.”

They added: “Responding to a young person in distress is highly complex, but by working with them when they are more well, to draw up a joint care plan, we aim to be as helpful and effective as possible if their mental health issues do escalate or the go into crisis.

“If they do escalate, we will assess their needs at that time and take appropriate action; this can sometimes mean offering an inpatient bed for a short period of time. But it really comes down to the individual’s needs and appropriate treatment for them. One suit does not fit all.”

•‘When I walk into a room it goes quiet’

In his book, Damaged Goods, Leroy Mann from Norwich speaks out about his battle with mental health and the stigma attached to it.

He describes the past years as the hardest of his life, being first diagnosed with paranoid schizophrenia about four years ago, then with post traumatic stress disorder (PTSD) last month.

Mr Mann wrote the book because he believes that people should talk about mental illness more.

In it, he discusses his past, his family, and how living every day with these conditions makes it hard.

He said: “When I walk into a room it goes quiet, people don’t want to deal with someone who has schizophrenia.”

Mr Mann describes in his book how he was abandoned at birth, and put into the child protection register.

He said: “I was in care, where I was terrorised. In the children’s home, it was the seventies and a pretty racist time, and being both black and the youngest I was at the bottom of the pecking order.”

Mr Mann explained that he knows very little about his past, saying that he’s blacked out large parts of his childhood.

He said: “Sometimes things come back to me. Once, one of the older children took my goldfish and cut the fins off in front of me. It was cruel, I loved those goldfish.

“After I came out of care, when I was 10 or 11, I went back to live with my mum. She was involved in prostitution and drugs, she went off the rail. I dealt with emotional and physical abuse.

“I know so little about my past, it’s driving me crazy. You can’t get your childhood back.”

He explained that he was thrown out of his mother’s home at 15, and lived with his friend’s family for a period, before getting into drugs.

He said: “I’ve had an abnormal life, I’ve never truly been loved. After being diagnosed with the mental illnesses, my family don’t want to help me, and they don’t want to talk about it. I’m a loner.

“I was diagnosed a few years back when I jumped off a balcony and seriously injured myself. When the crisis team asked me why I broke down I said I was hearing voices.”

Mr Mann explained that he wrote the book and hopes to get published because he wants to help others who are going through similar struggles. He also wants to explain that he is OK, and that it is OK to talk about mental health issues.

He said: “I wrote it to talk about the stigma, and also for my two kids. I don’t see much of them. My daughter asked me last year if you could catch schizophrenia from being in the same room, and I don’t ever see my boy. It makes me feel physically sick.”

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