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IN TOUCH 鈥� Accessible smart meters and blind charity news

TX:听 10.01.2023听 2040-2100

PRESENTER:听 听听听听听听听听 PETER WHITE

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PRODUCER:听 听听听听听听听听听 FERN LULHAM

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White

Good evening.听 Tonight, news of a merger between two well-respected visual impairment charities but why are they doing it and what are the benefits to blind and partially sighted people?听 Chief executives of both organisations are joining us.

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But first, as promised, we return to the issue of the accessible smart meters to help visually impaired energy users monitor their energy use more precisely and its cost.听 On our programme before Christmas, we were told that energy providers should be able to install these devices for visually impaired users who ask for them.听 News which was welcomed by a number of listeners.听 But many of you have been telling us that when you actually contacted your energy provider to request an in-home accessible display you were variously told that they didn鈥檛 have them yet or they didn鈥檛 know anything about them or that they felt the information on their websites was adequate enough.

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Well, one of those listeners who got in touch with us was Liz Silver and she joins us.听 Liz, just remind us what happened to you when you did try to follow up on this and get an adapted smart meter.

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Silver

I got a very negative response.听 I rang British Gas, who provide my gas supply, their kind of attitude was 鈥� oh, we don鈥檛 know anything about this, go away 鈥� to put it politely.听 And then a friend saw the information on the RNIB website which actually mentioned British Gas as being someone who could provide them.听 So, I rang them up again, oh it was really difficult, first of all, I was trying to explain to someone 鈥� no, that I didn鈥檛 want a smart meter, that I鈥檇 already got a smart meter and I actually wanted the talking display.听 And then I was put on hold for ages while someone filled in a form.听 And then she eventually came back to me and said 鈥� Yes, well we鈥檝e hopefully got this sorted out now.

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White

You tried a number of energy companies as well, didn鈥檛 you, not just your own to find what was going on.听 What sort of responses did you get from them?

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Silver

Well, I contacted Good Energy who provide my electricity and whilst they didn鈥檛 know anything about it, they were really helpful, they said that they鈥檇 have to order one but they鈥檝e just been really positive.

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White

Well, we鈥檝e been on the same kind of journey as you.听 We鈥檝e been in touch with a number of energy suppliers.听 British Gas, who you mentioned, now tell us:

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British Gas statement

We鈥檙e very sorry if any individuals have been given incorrect advice.听 We understand this isn鈥檛 helpful.听 We are, and have always, been supportive of the AIHD rollout and we are able to offer them to customers who request them.听 If there are any customers who require an AIHD we encourage them to contact us.

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Well, Good Energy say they apologise that in this case a customer wasn鈥檛 offered an AIHD straightaway, they say, 鈥淲e absolutely can offer these and we鈥檙e ensuring our customer teams are aware of that for the future so that they can be proactively offered to customers with accessibility needs.鈥�

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EDF also apologise to the customer who was told that they weren鈥檛 offering this service.听 They say, 鈥淯nfortunately, in this example, it seems the customer was misinformed by our advisor.听 EDF provides accessible in-home displays as well as providing an AIHD on request.听 The teams have also been trained to offer one of these devices if a trigger is identified during customer contact, such as a customer mentioning they鈥檝e poor sight.鈥澨� And they also say they offer refresher courses to their teams to ensure their knowledge remains up to date.听 They say they provided 1500 AIHDs over the last year.

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EON and Octopus were other energy companies who assured us, in their statements, that they did have the accessible smart meters available and were eager to supply them on request.

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So, clearly, there鈥檚 an information gap here somewhere.听 Not everyone seems to be sold on this idea.听 This is what Scottish Power told us:

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Scottish Power statement

We ran a six-month pilot scheme of accessible in-home displays last year with around 1,000 Scottish Power customers designed in partnership with the RNIB.听 The results found our customers didn鈥檛 have the appetite for the device that we expected, therefore, we decided not to purchase any further units until we considered alternative ways to support our customers.听 We鈥檝e offered to meet with the RNIB to discuss developments in AIHD technology and any new insights they鈥檙e able to share.

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Well, at this point, we had hoped to speak to Daisy Cross, she鈥檚 head of the smart programme of Energy UK, this speaks for the energy market, unfortunately, Daisy is unable to join us because of illness but she did tell us, in discussion, that in fact the energy companies asked Energy UK to look into in-home displays, she confirmed that not all suppliers are offering them and that it鈥檚 a business decision.听 She said, suppliers do have requirements to offer support to disabled customers but that could be through other means 鈥� accessible formats and websites etc.听 Her understanding is that the supply of these smart meters is not a strict requirement.

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So, why this gap in information?听 Liz, you鈥檝e been listening to that, how do you react to what you鈥檝e heard?

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Silver

I鈥檓 not at all impressed by the information from Energy UK.听 I would have thought it was a requirement as a reasonable adjustment.听 Companies saying that they can鈥檛 supply them is 鈥� well, just beyond belief really.听 To be able to find out what gas you鈥檙e using and how much it鈥檚 costing, should be something that anyone should be able to find out easily.

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White

What鈥檚 your current situation?

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Silver

In theory it鈥檚 move forward with British Gas.听 Finally, I鈥檝e got an appointment set up for February but it did arrive today, it arrived completely out of the blue.听 But until the actual day of the appointment I鈥檓 not convinced that anything will actually happen.

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White

It may be the summer.听 Liz Silver, thank you very much indeed.

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Now, news of a coming together of two visual impairment organisations of particular interest to us because we鈥檝e featured the work of both of them on the programme recently.听 The Vision Foundation, for its recent powerful report on domestic abuse experienced by visually impaired people and another report they did on the difficulties experienced by young people in the employment market.听 And Fight for Sight for its continuing campaign for the prevention of avoidable sight loss to have a much higher profile in health spending and for the money going to scientific research on eye health to make sure it鈥檚 going to the places where it can do the most good.听

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Joining me are the chief executives of both organisations 鈥� Keith Valentine at Fight for Sight, Olivia Curno with the Vision Foundation.

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Olivia, let me start with you.听 Soon not to be Chief Executive of Vision Foundation but why the merger when the projects, I鈥檝e just described, might strike quite a lot of people as very different and distinct from each other and may be needing two organisations.

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Curno

We鈥檝e not been driven so much by the possibility of cost saving but certainly by the opportunity for growth.听 So, we鈥檝e recognised that as a joined organisation we鈥檒l have more opportunities to reach out to supporters and to really amplify our voice and our potential for impact.听 But I think we鈥檝e also been led really by visually impaired people themselves who鈥檝e told us about that moment where either they have a diagnosis and they learn that they鈥檙e losing their sight or indeed if parents are told that their child has been born with a sight condition.听 There are two questions in that moment that seem to come up time and again.听 One is can you stop this; can you treat or preserve my sight and the other really is how will I live my life as a visually impaired person.听

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The Vision Foundation has been there for that second question and Fight for Sight鈥檚 been absolutely fighting for the first.听 This joint organisation does both.听 Yes, we will fight to preserve or restore your sight through world class research but at the same time we will ensure and fight just as hard to make sure that visually impaired people have access to fulfilling and productive and independent lives, just like anybody else.

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White

So, is it your sense that sometimes those two things don鈥檛 get actually joined up together at the time when the visually impaired person needs them to be joined together?

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Curno

I think that鈥檚 right.

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White

Let me bring in Keith Valentine.听 Keith, is this a merger or a takeover?

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Valentine

It鈥檚 in every sense a merger and it鈥檚 a strategic merger.听 The origins of these ideas have gone back a long way with Olivia and I as leaders in different parts of the sight loss sector with a question that鈥檚 driven both us, which is how do we get more impact.听 And, you know, if you take areas that Vision Foundation have researched like employment and you see the great capability and capacity of technology, the fact that people are still not making it into the market is raising questions about equity of opportunity and how things go forward.听 And in the science, we can see that the amount of investment that鈥檚 going into eye research is disproportionately low when you compare it to other comparable areas of investment.听 And the question we鈥檙e seeking to answer is how do we save sight and change lives.

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White

But I suppose the worry might be that will the kind of work that the Vision Foundation has been doing recently 鈥� campaigning on issues affecting people who are already visually impaired 鈥� will that get the same sort of attention when your emphasis has been so much on prevention, both important but can they be done alongside each other?

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Valentine

We, obviously, say yes.听 What I would say is this new venture lives and breathes in its ability to elevate and the work that Vision Foundation have done on to the national stage and one of the first things we look to do is take that work to the four UK nations and beyond London where the brilliant design of the fund has been done by Olivia and her team and gives us a template for how we can take something at national that requires scale.

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White

Is there a sense here that there are perhaps just too many visual impairment organisations, too much duplication?听 Still over 700 of them in one report I鈥檝e seen and you鈥檒l know that this has been an issue before, it鈥檚 been raised by the RNIB, is there any feeling of that in this decision?

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Valentine

I mean in the general analysis of the sector there is a sense that it鈥檚 relatively unconsolidated when you compare to the development of areas such as cancer, Alzheimer鈥檚 and dementia etc. etc.听 But I don鈥檛 think we鈥檙e starting from that point of view.听 We are trying to get form to follow function.听 So, what is absolutely clear is that the impact from the charitable sector on blind people, as with government and public bodies and the way that they approach it, has got to improve.听 And there鈥檚 a lot of potential there in the science, there鈥檚 potential in technology, there鈥檚 potential in terms of equality and the policy around that for us to take things forward for the community of people impacted by visual impairment.听 Now if the answer to that question, as it is in this case, is that by coming together we can do more for the people we鈥檙e here to serve then yes, consolidation is a good thing.

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White

Let me bring in a third guest on this issue, ophthalmologist Alistair Denniston, he is working in Birmingham hospitals, he鈥檚 also part of the Biomedical Research Centre for Ophthalmology at Moorfields Eye Hospital.听 Alistair, you鈥檝e contact with both these organisations, what does this merger of the two mean for your work and the kind of things that you鈥檙e trying to do in exploring how to get the best value for visually impaired people?

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Denniston

I鈥檓 excited.听 I think what we鈥檙e seeing here is an opportunity for two amazing charities to have greater impact together.听 And if we鈥檙e going to take a person centred view of this, not a project centred but a person centred view, then we want to be working collectively to see how we can make the greatest impact and our prioritisation needs to be coming from the community in that sense, so that we鈥檙e meeting what is really needed.

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White

Given that money not limitless, what is the worry here, possibly glamour projects, you know, things that get loads of publicity but maybe only affect about half a dozen people?

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Denniston

I鈥檓 not concerned about that actually happening because of robust processes that are in place to evaluate.听 I think the charities have seen the opportunity of trying to make sure that they are funding the work that perhaps wouldn鈥檛 otherwise get funded.

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White

This merger, how will it persuade government that more money needs to be spent on what you believe is quite a lot of preventable blindness?

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Denniston

I think, as you touched on earlier, there are lots of separate organisations that can sometimes be a bit confusing for people and so to have organisations such as these two come together and provide a unified voice and which provides, if you like, end to end consideration or a holistic consideration of the community鈥檚 needs, I think that鈥檚 incredibly powerful.

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White

I want to take a quick sidestep here, if I may, because something we talked a lot about on this programme before Christmas was how people were actually given the news about their eye condition and that often it could be very abrupt and maybe it could have been done a lot more tactfully and Keith, I think this is actually something that鈥檚 happened in your own family.听 I mean can you explain what did happen?

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Valentine

I mean in every generation of my family, in a different way and when my mother was told that retinitis pigmentosa鈥檚 in our family, she was told, basically, that there鈥檚 no hope, you鈥檒l never, you鈥檒l never work.听 When I was diagnosed I was 11 years old and the ophthalmologist suggested to my mother that I should be sterilised at the point that I came of age to stop the spread of the disease.听 And most recently, my daughter went for her diagnosis on her own, I wasn鈥檛 able to attend with her because of the covid rules, her scans were being discussed in the corridor in front of her, so she kind of found out by accident.听 And I think, sadly, that point of diagnosis moment, particularly in an environment where there鈥檚 such incredible pressure on the NHS and it鈥檚 so difficult for staff to meet the kind of standards that I know they鈥檇 all want, those point of diagnosis moments are utterly impactful, in a way that will carry often with people throughout their lives.听 There鈥檚 a point in this merger, as well, about recognising those areas of pain and where things can go wrong.听 The point of this new organisation is to place investment, alongside the treatment, the solution, the opportunity and the equality at every step.

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White

Olivia, there is sometimes a tension in the visual impairment world, I hear it quite a lot, between work on prevention and services to people who鈥檝e already gone blind or have been blind for a long time.听 Can these two needs coexist?

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Curno

We absolutely think that they can coexist and actually it was really interesting noticing 鈥� we have a committee at the Vision Foundation which decides are grant making and makes those recommendations to board, that committee is entirely visually impaired.听 We have a medical doctor on that committee and until very recently Keith Valentine sat there too.听 And the bringing of that eye health clinical expertise and mindset into service delivery thinking has been fantastic.听 And in return, we know a key role for medical research charities is to be the bridge between the end user, the lived expert, the person with the condition and the scientists.听 I think the more that we can bring these two sides together the better.听 What鈥檚 clearly missing in some functions is that feedback loop.听 By launching a new national funder that funds the best research and the best services but also has that helicopter view, so that we can pinpoint moments of real excellence that are really changing lives, and then duplicate those, really ensures that we鈥檙e offering the best for people, I think that鈥檚 a game changer.听

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What there is at the moment is a paucity of really independent insight and data.听 And what this new organisation will do is be that critical independent organisation that looks at what is going on, where are there real pockets of excellence, where are things not working because currently, when you look at the prevention data, when you look at unemployment figures, most recently when we looked at domestic violence, it is clear that we are not serving people well.听 You could argue that we鈥檙e failing visually impaired people in our society.听 And there is space for an organisation that will use data and evidence, as well as lived expertise, to kind of drive priorities.

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White

Keith, have you got a new name for this new organisation yet?

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Valentine

Not as yet, we鈥檙e keen to do two things in terms of the name.听 One is to get our teams together and to work from their experience and of paramount importance is the engagement with the community, so we shape something that everyone feels like they own.听 What will happen, though, as of day one of the merger, is that the social impact fund of Vision Foundation will be developing on to the national stage and we will be able to put additional investment into the existing Fight for Sight programme.听 So, an immediate consequence of us stepping forward with this new funder is that we will be able to distribute funds more widely, whilst in a targeted way, they鈥檒l be more available to do that too.听 So, it鈥檚 going to be an exciting year.听 It鈥檚 not something we can deliver entirely on our own, we鈥檝e got to do that with close involvement of the community and at the heart of this, as I said, is people living with sight loss themselves.听 And if we鈥檙e going to set out to save sight and change lives, that鈥檚 a big mission, we鈥檝e got a long way to go with it, so we need to do that with arms linked with the community to shape this new organisation, which I hope everyone will feel is an exciting step forward for our community.

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White

Would you welcome listeners鈥� suggestions for a name?听 I know it鈥檚 a risky business but鈥�

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Valentine

I would suspect, Peter, having discussed it, those suggestions will start anyway, so, yeah, I mean our ears are open, let me say that.

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White

Keith Valentine, Olivia Curno, Alistair Denniston, thank you all very much indeed.

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That is it for today.听 So, your comments, your queries, even criticisms, always welcome or indeed a suggestion of a name for the new organisation.听 You can email us on intouch@bbc.co.uk, leave voice messages on 0161 8361338 or go to our website bbc.co.uk/intouch where you can download tonight鈥檚 and previous editions of the programme.

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From me, Peter White, producer Fern Lulham, this week, and studio managers Colin Sutton and Owain Williams, goodbye.

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