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IN TOUCH 鈥� A gap in support

TX:听 20.11.2018听 2040-2100

PRESENTER:听 听听听听听听听 PETER WHITE

PRODUCER:听 听听听听听听听听听 LEE KUMUTAT

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White

Good Evening.听 Tonight, two ideas 鈥� one that failed, one that looks like succeeding. 听We examine the collapse of a phone service to help callers who struggle with new technology, and the online forum gaining users in their thousands.听听

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Sometimes it takes a long time to get rehabilitation if you lose your sight later in life and when you鈥檙e seeking employment, when you want those that to some people seem really simple questions answered 鈥� you want to know how to put toothpaste on a toothbrush, you know 鈥� and it鈥檚 those questions that you need help with.

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White

First, those phones. 听It seemed like a great idea at the time. 听Fussfree Phones was aimed at people who had difficulties with smartphones: whether because of increasing age, increasing disability, or just because they struggled. 听The concept was a very simple mobile phone with no extras, but also the facility where, at the press of just one button, you could reach an operator who would put you in touch with a relative or a friend either directly on the phone or by sending them a text message.听 The operator would also search the internet for you, if that鈥檚 what you wanted. 听All that, for a subscription of 拢25 a month, less for customers on low incomes. 听The RNIB said it was just what was needed, and agreed to stock it; customers told us it had changed their lives. 听

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So, what could possibly go wrong?听 Well, a few days ago, Fussfree Phones closed down. 听Its founder and chief executive, Simon Rockman, wanted to come on to In Touch to explain what had happened.

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Rockman

I think there were two issues.听 One was, I failed to communicate the idea, I just wasn鈥檛 good enough at the marketing and didn鈥檛 reach the people I needed to reach.听 And the other is, it鈥檚 intrinsically a quite expensive service, it was 拢25 a month.听 It鈥檚 expensive because it had real operators spending minutes on the phone with each customer.听 And lots of people who are visually impaired are on a low income.

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White

Could you have done it any cheaper, should you have tried to do it cheaper?

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Rockman

No, actually, on quite a lot of the customers, particularly visually impaired customers, we made a loss.听 And I worked on the basis that if we made a loss on some customers, we could make that up with profit on other customers because there were some people who paid 拢25 a month and made almost no calls a month and didn鈥檛 use the telephonist and we made a good margin on those.听 But there were too many customers who were very expensive and not enough who were lucrative.

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White

So, how actually did you market it because it鈥檚 a well-known fact that it鈥檚 quite difficult to reach a visually impaired market, for obvious reasons of being able to read things, what did you do?

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Rockman

We sold through the RNIB, we were on the RNIB website but actually we struggled at educating the people who answered the phones at the RNIB about our service and I don鈥檛 think they recommended it often enough to people.

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White

That鈥檚 surprising, isn鈥檛 it, because they were enthusiastic about it on this programme, they said it was the kind of idea that they thought needed to be doing, it was aiming at an audience that they recognised.听 Are you surprised?听 Did you perhaps not make it clear enough to them what you needed?

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Rockman

We didn鈥檛 have enough opportunity to go in and talk to the people who answered the telephones.听 So, yes, senior people were enthusiastic and although it took a very long time between the enthusiasm and the first sales, there seemed to be an awful lot of processes to get through, to get products stocked by the RNIB.

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White

They, of course, aren鈥檛 the only pebble on the beach as far as communicating with visually impaired people are concerned, there are other charities, there are talking newspapers, there are voluntary organisations in almost every town in the country.听 Did you use them?

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Rockman

Yes, we did and one of them - Lincoln and Lindsey 鈥� was fantastic. But yes, there are more than 2,000 organisations and we struggled with communicating with quite so many organisations.

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White

And yet the demand does seem to be there.听 Sharon Warden wrote to us saying: 鈥淢y 86-year-old mother is registered blind, having lost her sight, and as an older person through Macular Degeneration.听 My sister and I live a long way from her and when we came across Fussfree mobiles it was a godsend as it was such an easy genuinely fuss free service.鈥澨� She says: 鈥� My mother greatly appreciated being able to maintain a shred of independence via making her own phone calls and talking to the operators who could look things up on the internet.鈥�

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That鈥檚 probably the kind of typical thing you heard.

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Rockman

Yes, and I鈥檝e had lots of letters from people and it鈥檚 really quite upsetting.

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White

What about you personally 鈥� you obviously put a lot into this, have you lost money on it?

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Rockman

Oh, I remortgaged my house, I鈥檝e put many tens of thousands of pounds into it and for the vast majority of the six or seven years I worked on it I didn鈥檛 take a salary, I think I took a salary for about five months.

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White

Have any of your customers lost money over this, in the sense of having paid for a service that they haven鈥檛 got?

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Rockman

Most people will have lost a portion of a month.听 So, the vast majority of people were on 拢25 a month billed every month, very few people were on a long-term contract and we switched off in the middle of the month and so depending on when their billing date was, they might have lost anything between a day and a month.

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White

And did people have any kind of warning that you may be in a position where you鈥檇 shortly have to close?

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Rockman

No, because right up till the last minute I had somebody who was prepared to take the customers.听 There were two major hurdles.听 One, was to do with porting numbers and one was to do with moving payment accounts and they both looked like really difficult problems and I found solutions to both of them.听 And then on the Thursday he said even though you鈥檝e solved the two problems I don鈥檛 want to do it, it all looks far too hard.听 But that鈥檚 why there was so little notice because I thought right up until the last minute, I was going to be able to save it.

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White

And just to explain the figures a little bit.听 You, when we first talked, you only had 200 customers, you said at the time you thought this had the potential for 20,000 customers in 2018, how many customers did you actually end up with?

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Rockman

Five hundred and sixty.

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White

That is fairly spectacularly getting the potential wrong isn鈥檛 it?

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Rockman

I鈥檓 not sure I did.听 I think there might still be the potential in tens of thousands and I just got the marketing wrong.

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White

Simon Rockman.

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Well the RNIB told us that they鈥檙e sorry to hear that Fussfree Phones has closed down and they say customers who bought a phone from the RNIB are being contacted.

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But for Juliette Parfitt it鈥檚 not sending communication but receiving it that鈥檚 bothering her.听 She feels that while statutory and charitable services are focused on the problems of youth and age people in between tend to be forgotten or ignored.听

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Until her 20s Juliette鈥檚 glaucoma hadn鈥檛 caused her too many problems.听 She couldn鈥檛 drive but she had managed perfectly well in mainstream school and at university.听 She was working as a guide at Kensington Palace when her sight began to get worse and she had to give up work.听 She鈥檚 been telling our reporter, Tom Walker, about the problems she鈥檚 had getting the information she needs.

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Parfitt

I noticed my vision was getting very, very blurry and I went and got it looked at, at the hospital and essentially it turns out my cornea was failing.听 So, I find I can鈥檛 read off of paper anymore and it might be a little bit harder for me to go places that I鈥檓 not familiar with, it鈥檚 a lot harder in the dark and things like that.

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Walker

But you鈥檙e now looking for employment?

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Parfitt

Yeah, so, I鈥檝e been looking for a little while and I鈥檝e been finding it a little bit tricky sort of knowing what to do and working out what I鈥檓 comfortable with and things like that.

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Walker

What help have you had?

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Parfitt

I approached the Royal Society for Blind Children, who have a sort of employability thing they do for slightly older people, sort of aged 18-25.听 And they鈥檝e been helping me with sort of where to look for applications, what might be a good fit, they run events every so often and they鈥檒l sort of check my work, like my cover letters and applications and everything, so that鈥檚 very helpful.

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Walker

But more generally you鈥檙e concerned about the lack of assistance and support for people like you, 26-year-olds, who have either lost sight or are in the process of losing their sight?

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Parfitt

Yeah, so I think I was sort of 24, 25 when I approached the RSBC and I realised I needed a bit of help but I think if this was happening now, now I鈥檓 26 or a little bit older, I think I鈥檇 have been sort of on my own quite a lot.听 And I鈥檝e spoken to a lot of people who either they themselves lost their sight in their sort of late 20s or they know someone who has and they say you鈥檙e very much 鈥� you鈥檙e given the bare minimum of what you need and you鈥檙e kind of left to it.听 The information I鈥檝e gathered has been through talking to random people that I happen to know through RSBC and just random friends and things like that.听 So, it鈥檚 all been sort of cobbled together and I think say you were sighted and you started to lose your vision and you didn鈥檛 know anybody else you might not know what to do, you might not know to get the most out of the services that are available.听 You almost want it to be as easy as possible, which is not to say that it鈥檚 always easy, but you almost want someone to come along and be sort of like here鈥檚 these things that are available, this is what you can do to access them if you want to.听 Not being pushed into anything but finding that information 鈥� it shouldn鈥檛 be cobbling it together and [indistinct word] different things, it should be clear somewhere if you鈥檙e completely new to losing your sight.

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Walker

What about peer support 鈥� people of your own age?

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Parfitt

There really isn鈥檛 any that I found.听 If you鈥檙e 18-25 you can get the backend of services for young people but if you鈥檙e over the age of 25 you tend to find 鈥� there are partially sighted societies, I have a local one, but it tends to be older people because that is the majority of people that have sight loss.听 But there are a substantial amount of people, say in their 20s or 30s, who probably are having trouble with vision loss and I think this 鈥� a comfort in having someone your own age, that you know is going through similar point in your life, because you鈥檙e not necessarily going to be able to relate someone in their 50s or 60s and they鈥檙e not necessarily going to be able to relate to you if you lose your sight when you鈥檙e in your 20s or 30s.听 You might have been trying to find a job or still trying to work out your career, you might be living in a house share or something, things that are a little bit more 鈥� things are a bit more uncertain when you鈥檙e younger, you鈥檙e still trying to work it out and you don鈥檛 necessarily want your sight loss to sort derail everything.听 But where can you go to find people that understand that a little bit more than people who are older or children?听 It would be nice to have sort of a support of your own age sort of thing.

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Most of the people I know are sighted and they鈥檙e all very nice and accommodating but there鈥檚 sort of things they won鈥檛 always understand.听 And if you have VI people your own age, they straightaway will understand things without having to explain.听 So, it can be a little bit isolating sometimes.

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Walker

What needs to happen as far as you鈥檙e concerned for people of your age?

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Parfitt

Well I think we鈥檙e quite an easy age group to get in contact with, we use social media, we鈥檙e on the internet a lot, it would just be nice if there was some sort of support group set up that we could promote it quite easily via the internet and on social media.听 So, it would be great if maybe an organisation could set up a support group aimed at specific age, say sort of 25-35 or whatever ages you want.听 But just sort of easy to find.听 I think people probably are looking for it and not able to find it.

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White

That was Juliette Parfitt talking with our reporter Tom Walker.

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So, it sounds as though Juliette is getting some of the support she needs now, through contact with a charity but it鈥檚 peer support and the sharing of ideas and resources that she feels is harder to come by.听 And as with much of today鈥檚 information and swapping of ideas it happens online.听 Well one group on social media might be going some way to filling that gap.听 VI Talk is a Facebook group set up to facilitate the exchange of tips and tricks to cope with the business of getting on in life if you鈥檙e visually impaired.听 It started as a podcast, a kind of magazine programme, not unlike this one, and when it moved online the numbers have grown.听 Now there are seven spinoff groups on topics such as sport, arts and crafts and there鈥檚 even a book club.

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Jo Fishwick is one of its founders and she joins us from our Exeter studio.

听

You listened to Juliette鈥檚 interview there, so is what she says reflected in what people are talking about in your group?听 I mean her sense was particularly people in their 20s and 30s not finding it always easy to get the information they need.

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Fishwick

Yeah, very much so.听 I think the sense is that sometimes it takes a long time to get rehabilitation if you lose your sight later in life and when you鈥檙e seeking employment, when you want those, that to some people seem really simple questions, answered 鈥� you want to know how to put toothpaste on a toothbrush, you know, and it鈥檚 those questions that you need help with.听 And so, VI Talk, the members, and it鈥檚 member led, it鈥檚 not 鈥� there are four trustees and there are some volunteers as well but it鈥檚 the members themselves.听 So, over 2,700 members on the main group and they are all ages, all backgrounds and abilities, so they鈥檙e going to answer those questions for people hopefully.

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White

And if you were to define its purpose, because it sounds as if you could, with a thing like that, you could do all sorts of things, I mean does it need to have a focus, if so, what is it or does it kind of spill all over the place?

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Fishwick

It does have a focus.听 I mean the tag bar for VI Talk, which you would see on all of our logos and you would hear at the beginning of our podcast, is sharing ideas, information and support and that鈥檚 what it鈥檚 all about.听 I mean we鈥檝e just started doing link days as well where we get together at a location and visually impaired people get together and we throw in a free buffet lunch and refreshments and we get speakers in.听 But also, lots of time for people to chat amongst themselves and gain that support from each other.听 And who better to cheer you on, when you鈥檝e got your first paid job or you鈥檝e achieved something, then other people who know what you鈥檙e experiencing?

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White

So just to return to someone like Juliette, one of the things she said was she found it hard to found people of her own age who are visually impaired to kind of talk to.听 Now I mean would you be able to give her the kind of advice she needs, some of which, of course, is about jobs, some of which was more general?

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Fishwick

Yeah, I think if she joined the Facebook group, she would find that support.听 We encourage people to come on the group, the main group, and introduce themselves 鈥� say a little bit about their situation if they feel comfortable with that 鈥� and then people are very generous and lovely really, they offer that support, welcome and we do messenger chats once a month as well.听 We鈥檝e talked about sight loss just recently.听 Just before that word in December 鈥� Christmas 鈥� we鈥檙e having just a general chat because Christmas can be a lonely time for a lot of people.听 So, we do 鈥� we do lots of different things like that as well.

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White

What do you see as the future of VI Talk?听 I mean do you think this kind of thing could replace the advisory role of charities, given how many visually impaired people with different experiences you鈥檝e got on your books.

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Fishwick

There鈥檒l always be a need for something offline as well but that鈥檚 鈥� we鈥檙e trying to do that with the link days and things like that.听 We are probably one of the biggest peer support groups, certainly online, and I think it works really well, thank goodness.听 But that鈥檚 down to everybody who contributes to that, it鈥檚 not down to the trustees per se, it鈥檚 down to everybody.

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White

And personally, for you I mean how much work is it because you have a job, I think, so how much time does this take up?

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Fishwick

Quite a lot, I have to say, I have a very understanding family.

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White

One of things we tend to say, as visually impaired people, is we鈥檙e somebody first and visually impaired second, I just wonder what it鈥檚 like being so heavily involved in something which focuses entirely on your own disability and which you鈥檝e essentially got access to 24 hours a day?

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Fishwick

Yeah, it can become all consuming and I think you do have to get that balance.听 So, occasionally, you do have to step away and just do something completely different.听 And I think that鈥檚 really important because it鈥檚 the person first before the disability, your disability doesn鈥檛 define you, it鈥檚 part of who you are because it鈥檒l be part of your experiences and how you鈥檝e done things but it certainly isn鈥檛, for me, it鈥檚 not me 鈥� I鈥檓 not Jo the blind person, I鈥檓 Jo but I just happen to be blind.

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White

But do you ever just think I鈥檓 going to turn this thing off, I鈥檓 not looking at it any time over the weekend?

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Fishwick

No, no, don鈥檛 do 鈥� can鈥檛 do that really because if I do that it can get a bit feisty on some of the groups sometimes, so one of us needs to be there.

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White

And as well as safeguarding what about vetting?听 I mean is it kind of a rule that 鈥� do you check about people鈥檚 visual impairment, are they genuinely visually impaired, they鈥檙e not just kind of you know eavesdropping, so can you explain what you do?

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Fishwick

Okay, so to join any of the Facebook groups now you have to answer three questions.听 So, you have to say whether you are visually impaired or work in the field or whether you鈥檙e supporting a family member or friend who鈥檚 visually impaired.听 You have to say how you heard about VI Talk and you also have to let us know what your interest is in joining the group. 听Now if we see a profile obviously that looks completely ridiculous then we won鈥檛 let them in or we鈥檒l drop someone a message and just say can you give us a bit of further information.听 We have been known to turn people down, we turned 鈥� sorry to say this 鈥� but a journalist down because they just wanted to come in the group and they were just being nosy really and I just said 鈥� well that鈥檚 not appropriate, if you鈥檝e got any questions feel free to ask me but you鈥檙e not coming in the group because some people put very personal things on the group, they want to talk about their children鈥檚 education, how their children are coping, how they鈥檙e coping as an adult and some of that can be quite personal, so we are very careful about that.

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White

Well let鈥檚 hope you now hear from quite a lot of people who say oh well I heard about this on In Touch.

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Fishwick

That would be nice.

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White

Jo Fishwick, thank you very much.

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Fishwick

You鈥檙e welcome.

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White

And we鈥檇 like to hear from people who鈥檝e joined VI Talk or perhaps there are other sources of advice and help you鈥檇 like to tell us about.听 We鈥檙e particularly keen to hear from visually impaired students because we鈥檙e planning a students鈥� special in the near future.听 You can email us whether you鈥檙e just starting out and want to tell us what鈥檚 going well and what isn鈥檛 or if you鈥檙e coming to the end of your course tell us what you wish you鈥檇 known when you started.听 You can call our actionline on 0800 044 044 for 24 hours after the programme.听 You can email intouch@bbc.co.uk or click on the contact us link on our webpage.听 That鈥檚 it, from me Peter White, producer Lee Kumutat and the team, goodbye.