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IN TOUCH – Visual Impairment and Mental Health

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TX:Ìý 20.02.2018Ìý 2040-2100

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PRESENTER:Ìý ÌýÌýÌýÌýÌýÌýÌý PETER WHITE

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PRODUCER:Ìý ÌýÌýÌýÌýÌýÌýÌýÌýÌý LEE KUMUTAT AND GEORGINA HEWES

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White

Good evening.Ìý Tonight, how strong is the link between the losing of your sight and developing mental health problems and how equipped are current services to see that connection and offer the right help?Ìý The question has arisen after the tragic case of Nina Davis, who took her own life last year after several warning signs that she was in serious distress.Ìý A close friend and her mother both believe that the services Nina received failed to appreciate the link between visual impairment and mental health and that her death could have been avoided if that connection had been better understood.

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A serious incident investigation on the treatment Nina received from Birmingham and Solihull Mental Health Trust, which the trust itself conducted, confirmed that not enough consideration was given to Nina’s visual impairment.

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Well Lee Kumutat has been hearing more about Nina’s story.

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Kumutat

Nina Davis became visually impaired as a young child and lost the rest of her vision when she was 17.Ìý Her mum, Tracy Middleton and her good friend Diane Fonseka, gave me a picture of the person Nina was.

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Middleton

She said she wanted a bike at one time and her dad and everybody else said – you can’t have a bike.Ìý She says – Why.Ìý He says – You can’t see, you can’t ride it.Ìý So, she went out on the street, met this young lad, started riding his bike, come back up the street, told us, she says – Look I can ride his bike, so I want a bike.Ìý That’s the sort of person Nina was.

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Fonseka

Nina came on holiday with me to Seychelles in 2014 because my daughter lives there and took part in a midnight sea rescue with no problems at all.Ìý She had a really good character, she was good fun to be around, she used to listen everybody else and was full of good advice.

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Kumutat

Nina was in her sixth form year, living and studying at the Royal National College for the Blind or RNC in Hereford at the time she became totally blind.Ìý To her mother’s knowledge Nina wasn’t offered any counselling but Tracy feels her daughter might not have accepted it anyway because Nina’s sight loss didn’t seem to have an immediate negative impact on her.

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Middleton

When she first lost her sight, I think she was quite happy because everything was new down in Hereford, it was a new start, she was living with people with visual impairment, she’d got her first boyfriend, she was quite happy and contented, going out and partying.Ìý So, I don’t think that the blindness came into it as much then.

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Kumutat

A few years after leaving the RNC Nina took a social work degree, which she completed achieving a 2:1.Ìý Her focus then turned to finding a job in her chosen field but she couldn’t find one.

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Middleton

After university she says, right that’s it now, she was going to find a job.Ìý And she’s tried for the last five years, she’s applied for different jobs, she’s took on voluntary work to get a job hoping that it would lead to a job but unsuccessfully.

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Kumutat

As well as employment Nina’s ambitions were finding a long-term partner and becoming a mum herself.Ìý In 2016 at the age of 31 two major losses in Nina’s life took their toll.Ìý The death of her first guide dog and the breakdown of a relationship.

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Middleton

She was in a relationship at the time, 18-month relationship.Ìý When it fell apart she just seemed to disappear basically, she wasn’t the same person.Ìý I just thought it was because she was heartbroken at first and I think it was because of that.Ìý But she did say to me when she was in the relationship that they was on about having a family and getting married and having children and she actually said, if I couldn’t get a job I’m just going to resign to being a mother, which is what she ever wanted.

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Kumutat

So, do you think that life perhaps didn’t take the path that she had always hoped it would?

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Middleton

Yes.Ìý

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Kumutat

What did she blame that on?

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Middleton

Not being good enough, not being able to see was a big factor at that time.

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Kumutat

Did she have many visually impaired friends?

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Middleton

She made quite a few friends when she was in RNC.Ìý She used to keep in contact with them by phone or Facebook, she’d get on the train and go and visit them with her first guide dog and things like that.

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Kumutat

So, it’s not really a far stretch to think that she did see people who were visually impaired living the kind of successful life that she wanted to live…

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Middleton

Yeah.

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Kumutat

She didn’t see that as – well if they can do it, I can do it kind of situation?

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Middleton

Well she wanted to know why she couldn’t get it.Ìý She probably thought she could get it but she wanted to know why it wasn’t happening for her, whereas it had happened for everybody else.

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Kumutat

Nina’s friends and family began to see changes in her behaviour and her ability to cope.Ìý Nina was more and more withdrawn and clearly depressed.Ìý She began to feel that her perceived failings in life were a direct result of her blindness.Ìý Here’s her friend Diane Fonseka.

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Fonseka

The mental health actually impacted on all aspects of her life.Ìý It impacted on her independence within the home and looking after herself.Ìý It impacted on her ability to actually get out and about and be mobile and whilst she was previously a very independent traveller with a guide dog she really lost a lot of mobility skills actually and she’d lost the confidence to use the skills that she did have.Ìý Nina had always denied that her sight loss impacted on her quality of life but I sort of posed a question and said – Look Nina, at this minute how much of this is to do with your sight loss.Ìý And she said – Everything.

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Kumutat

In November 2016 Nine was prescribed antidepressants and referred to a counselling charity for cognitive behavioural therapy, described as a talking therapy designed to help you manage your problems by changing the way you think and behave.

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Fonseka

She initially went for counselling but that session only lasted eight minutes and the counsellor brought that session to a close saying, actually CBT wasn’t the type of counselling that she was needing.

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Kumutat

That’s cognitive behavioural therapy.

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Fonseka

…therapy, so that session was brought to a close and said actually given the information that Nina had told her and shared she said actually what you really need is bereavement, loss and grief type therapy to come to terms with the significant losses that you’ve had in your life.Ìý So, then I think she entered the crisis team in Birmingham, she was on a pathway of care there but that in itself sort of created additional challenges because the team that she was under really didn’t understand the physical challenges that she had to access the services.Ìý They would send information in a document through email, which that was Nina’s preferred of communication but they didn’t ask to check whether the assistive software that she was using was compatible and whether she could actually access it all.

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Kumutat

As Nina’s depression deepened she went to live with her mother in Sandwell to try and safeguard her own mental health.Ìý However, Sandwell is out of the jurisdiction of the Birmingham Mental Health Trust.Ìý This caused confusion and difficulty around which service should be looking after Nina.Ìý During the next six months Nina tried to communicate her acute psychological distress to a number of mental health professionals and on at least one occasion asked specifically for help that would take her disability into account.Ìý She also made three attempts on her life.Ìý

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As well as being Nina’s friend Diane Fonseka is also a trained rehabilitation officer for visually impaired people.Ìý Diane went along to appointments with Nina as her friend but also as her advocate.Ìý

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Fonseka

They weren’t really listening to Nina, they didn’t have a clear understanding of the challenges that she faced.Ìý They didn’t listen to her and they actually didn’t listen to me either.Ìý I’m a qualified rehabilitation worker for visually impaired and I thought, naively, that I would just rock up there, I would share my skills, my knowledge and they would welcome that information and they’d say thank you for sharing that and we need to do this and this and this and that didn’t happen.

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Kumutat

What would you like to see happen now in terms of mental health provision for visually impaired people?Ìý Start with you Tracy.

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Middleton

Staff to receive mandatory sight loss awareness training because they’re going to be seeing a lot more partially sighted people, visually impaired people.

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Kumutat

And what about you Di?

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Fonseka

I mean personally I think there needed to be a more holistic approach to treating Nina.Ìý She had a guide dog, Guide Dogs should have been brought in looked at her mobility and how her mobility was being impacted by her mental health and could she get support in that way.Ìý They could have tapped into the social worker for vision impairment in her area and they may have been able to come and offer support.

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Kumutat

Do either of you think or feel Nina’s suicide could have been prevented?

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Fonseka

Tracy’s struggling to talk at this moment.Ìý The answer is a resounding yes.Ìý I think there was so much more could have been done and it starts actually with just one word and it’s care.Ìý People needed to care.

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White

That was Nina Davis’ close friend Diane Fonseka and Nina’s mother Tracy Middleton.

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Lee, after Nina’s death the trust held a serious incident investigation, as we mentioned, what did that say?

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Kumutat

The trust did carry out its investigation, the findings of which were:Ìý No advice or support was sourced from any blind service to help formulate a care plan for Nina.Ìý That there was no joint working with Sandwell crisis team or any attempt to support Nina made while she was in Sandwell.Ìý The lessons learned were that not enough consideration was given to Nina’s disability and the impact it was having on her.Ìý In a statement the trust told us that a further review of that investigation is now being carried out, again by the trust itself and so they couldn’t comment further.

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White

Lee Kumutat, thank you very much indeed.Ìý So, what are the options for people who feel they need help coping with the loss of their sight?Ìý

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Amanda Hawkins heads the RNIB’s sight loss counselling service.Ìý She gave me her reaction to Nina’s case.

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Hawkins

It’s just tragic isn’t it, this is a real tragic loss and even though I’ve heard the story before, listening to it again just now still really moves me.

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White

And what are the things that most strike you about this story?

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Hawkins

That she didn’t get the help that she needed, that there was support out there that the local trust could have tapped into to make that whole transition into the mental health service easier for her, so she could get the help that she desperately needed at that time.

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White

The thing that surprised us was something that has been mentioned by the serious incident investigation which has followed this which is that there seemed to be no link up with organisations that might be expected to understand visual impairment including the RNIB.

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Hawkins

Exactly, and the team that I’m responsible for and run do an awful lot of consultation with other NHS trusts to help that transition and they come to us and ask our opinion – how can we best facilitate this patient at this point and what do we need to be aware of and consider.

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White

Just tell us a bit more about what the RNIB’s service to people who need some form of counselling, what do you offer?

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Hawkins

Okay so the sight loss counselling team at RNIB is a 22-person strong counselling team with an expertise of not just counselling but also the myriad of ways people can lose their sight.Ìý And we offer about eight to 10 sessions to people who are affected by sight loss and we don’t just offer that to people who are losing their sight or have lost their sight but anyone in that family unit that might be affected by that.Ìý And the thing that’s really important that we find and that our clients tell us is the fact that they don’t have to upskill the professional in front of them in their particular sight loss condition, makes it easier to talk about what they need to talk about at the time that they need to talk about it.

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White

So, you mean they are happier talking to someone who gets it.

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Hawkins

Exactly, when you’re really struggling to have to educate the person that’s there to listen and help you through that is just another burden.Ìý

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White

You took on this role I think in 2009…

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Hawkins

That’s right.

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White

What did you assume would happen when a visually impaired person is first diagnosed with sight loss?

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Hawkins

When I took on this role I assumed that there would be an automatic referral into psychological support, knowing the difficulty in adaptation to sight loss.Ìý It’s a major sense.

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White

And what actually happens?

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Hawkins

Nothing.

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White

In terms of the treatment Nina did receive, what, in your opinion, should have happened?

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Hawkins

Obviously, she was referred to the community mental health team, they obviously did some assessments there.Ìý What didn’t happen was the acknowledgement of how significant her sight loss was to her identity at that point and I think that was what was missed.Ìý So, I think a lot of the time they were saying to her this is not about your sight loss, but actually it was a sight loss plus lots of other losses, her mum talked about the loss of her relationship, I think she’d also lost a dog.Ìý So, there were significant things going on in her life.

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White

She was offered treatment with a visually impaired psychologist because the trust seemed to have understood that Nine did want to talk to someone who understood a bit about visual impairment, so there they were trying weren’t they?

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Hawkins

If that person understood her great, from what we understand she didn’t feel understood at that point and from what I can understand she was still being given bits of paper and forms, which she couldn’t access even at that point.Ìý It felt like it was a secondary thing, they were dealing with depression and not thinking about the sight loss at that point.

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White

What about when people realise they need help because it isn’t necessarily absolutely at the point of diagnosis is it?

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Hawkins

It isn’t and it very rarely, funnily enough, is at the point of diagnosis.Ìý Where we see most people coming into our service is at the critical incident point, so it’s when it really matters to them.Ìý And that can be very personal for very different people.Ìý We had one guy who walked into his office one day, he had a degenerative sight condition and he walked into the office and they’d changed the desks around and he couldn’t find his desk and it was at that point it really hit him and that’s when he came into counselling.

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White

So, it could be that, it could be to do with something that happens in a relationship.

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Hawkins

Absolutely, a loss of a partner, a breakdown of a relationship.Ìý For teenagers it’s the point when they realise that they’re not going to be able to drive.Ìý When the opportunities maybe aren’t the same.

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White

Clearly there have to be structures here with the way that people actually get treated, what do you think about the way that that’s done at the moment in the case of people with a visual impairment?

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Hawkins

There’s two pathways, two medical pathways that exist in the NHS at the moment.Ìý One is the sight loss pathway, and that goes through the eye clinic, your ophthalmologist.Ìý The other one is through depression and the mental health team.Ìý And it’s a real shame that those two don’t interact more because we know people with sight loss are 13.5% more likely to become depressed.Ìý And I think there are ways of working with this.Ìý I think GPs could be screening for depression, so they know somebody who’s coming in to their consultation room just to be asking the question – how are you doing?Ìý We could also be screening in eye clinics.Ìý So, we need to put as many opportunities to ask the question – how are you, how are you coping.

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White

Some people may still be questioning how much visual impairment and mental health are interlinked or inevitably interlinked but you do have some statistics about that don’t you?

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Hawkins

Well we do know from the research that we’ve done at RNIB that 79% of people surveyed who were losing their sight said they wanted someone to talk to.Ìý And sadly only 19% of them actually do get to talk to someone.Ìý We are actually trying to do a little bit more about that.Ìý RNIB obviously we’re a charity, we get very good support from the board, but we can only see a certain amount of people and sight loss is a growing issue.Ìý So, we’re trying to work cross sector, across the whole of the sight loss charities, to develop an accreditation scheme where people who are generically trained in counselling can come and do a course with RNIB and Vision UK to give them the skills that they might need to work with someone with sight loss, so that we can recommend other counsellors and not just counsellors from our service, other counsellors maybe locally to them, that they can go and see.

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White

And you’ve seen the conclusions that the serious incident investigation came to, do you broadly agree with those and are they likely to – the recommendations – are they likely to bring about a change do you think?

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Hawkins

I hope so.Ìý I mean I really hope that something good comes of this awful situation, so I hope that they can listen to what may have worked better for people like Nina and I just hope that we can get to this point where we start to be able toÌý normalise our negative emotions around sight loss instead of actually saying isn’t it great, people with sight loss can use a liquid level indicator, they’ve got a white cane, it’s a really positive spin which is great but for some people that’s not helpful, for some people they just need to know – actually today I’m not feeling very good and it is to do with my sight loss and I need to get some help.Ìý So just normalising that and acknowledging that I think it goes a long way to help other people.

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White

Amanda Hawkins of the RNIB’s sight loss counselling service.

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For people who want to know more we do have phone numbers and links to the RNIB’s helpline and other organisations on our website.Ìý And you can get that information from our actionline for 24 hours after the programme on 0800 044 044.Ìý You can also email intouch@bbc.co.uk.Ìý From me, Peter White, and joint producers today Lee Kumutat and Georgina Hewes, goodbye.