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IN TOUCH 鈥� Why is the RNIB planning to sell its Royal Albert Hall box?

TX:听 05.09.2017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 CHERYL GABRIEL

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White

Good evening.听 Tonight:

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Music

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Why the music was great, but a visit to the Proms last weekend brought disappointment to many visually-impaired concert goers. 听

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And the best and the worst about going on holiday.

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Clip

The constant refrain of 鈥� ooh look at this 鈥� and 鈥� ah isn鈥檛 that beautiful 鈥� does get irritating when you can鈥檛 see the objects being ogled.

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White

But first, there鈥檚 a new version out of a document known as your CVI, or your Certificate of Vision Impairment. 听听Sounds dry as dust doesn鈥檛 it but it could end up being one of the most important bits of paper in your life. 听It has to be signed by your eye doctor and it sets out the extent of your sight loss. 听And that in turn can decide what disability benefits you get, and what services you receive from your local authority.听 Things like care in the home, rehabilitation and help to learn new ways of doing things. 听

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The previous CVI was thought by many not to be up to the job now and that many people who ought to be registered, either as visually-impaired, or severely visually-impaired, were just falling through the net.

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Cathy Yelf, CEO of the Macular Society, which represents thousands of visually-impaired people, has been telling me more about what this could mean for her members.

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Yelf

Well what we hope will be the benefit and the advantages of the new one is that it鈥檚 easier to fill in and so it makes healthcare professionals, particularly ophthalmologists, more inclined to mention certification to blind and partially-sighted people because that鈥檚 how it has to be done, it has to be done by an ophthalmologist and in very, very busy clinics I think it鈥檚 possible that this has been squeezed out rather too often in the past.听 So I think it鈥檚 hoped that a simplified form will make more people have access to certification.

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White

You say access to certification, so do you think there are some people who just don鈥檛 even know that there is a certificate and something to be registered for?

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Yelf

Yes I think that happens in very many cases and of course particularly in age related macular degeneration because most people with say dry age related macular degeneration, for whom there is no treatment available in hospitals, increasingly nowadays never get to see, or very rarely get to see an ophthalmologist and it could be that a lot of people with dry AMD are being lost in the system.听 So the people with wet AMD, who are having injections at the hospital, will be very close to the ophthalmologist and the eye clinic staff and it may be that for those people an offer of certification happens as part of the normal routine care.听 The real concern is for the people who have dry AMD who very irregularly or never go to an eye clinic and those people may not be offered and may not think to ask to be certified as visually-impaired.

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White

And if they鈥檙e not certified what鈥檚 the significance of that?

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Yelf

Well there are many significant issues really around this.听 The first is that certification triggers something with your local authority, so this is a two-stage process.听 An eye hospital doctor has to certify a person as having a visual-impairment that鈥檚 irreversible and that then should trigger a registration of that person with the local authority.听 And the local authority is then duty bound to offer that visually-impaired person an assessment of their needs.听 So it may be of benefit to people who would otherwise go unnoticed by their local authority and so that may give them access to support and care they wouldn鈥檛 otherwise have.听 But of course there are wider benefits as well.听 Actually the individual may also then qualify for a certain number of benefits, so for example disabled parking and certain other benefits may be triggered by certification.听 But there are wider societal benefits to this as well.听 So the certification data is the only 鈥� these are the only data that the government uses to make a judgement on whether it鈥檚 doing well looking after blind and partially-sighted people.听 And so it is really important that these data are as complete as they can possibly be because otherwise the government is underestimating the needs of blind and partially-sighted people.听 And then of course a lot of the data is very useful in terms of research purposes and in designing care and support for people with visual-impairment.听 So there are many, many reasons why this is really important data.

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White

And just to put a bit of numerical flesh on those bones.听 I think the number of people registering under the previous CVI is somewhere around 23,000 people, how do you think that compares with the number of people who should be eligible to qualify because I can remember the Macular Society saying quite a long time ago that the numbers were much higher than that for their condition alone.

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Yelf

Well we suspect that that鈥檚 the case.听 Of course a lot of people with Macular Degeneration, we鈥檝e had a lot of people with visual-impairment, will not have a visual-impairment that is sufficiently severe to qualify for registration.听 So there is a whole group of maybe hundreds of thousands of people who have a visual-impairment but it is not significant enough to qualify for registration.听 So that may be where a lot of these people are but we are absolutely certain that across the spectrum and certainly critically in this dry AMD population there will be many people who do qualify for registration who are not registered, who are not certified.

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White

You鈥檝e said people may be aren鈥檛 registering because they鈥檙e not even being told it鈥檚 possible but are there other reasons why people don鈥檛 really like the idea of registering?

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Yelf

Well we only really know this anecdotally so I鈥檓 not sure that there鈥檚 any actually firm evidence of this but anecdotally we think that perhaps there is still a stigma attached to a certification as a [in inverted commas] 鈥渄isabled person鈥� and that many people who are worried about their sight or trying to stave off that definition of themselves, as long as they possibly can鈥�

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White

So that almost by mentioning it and giving it a name that makes it feel more real as it were?

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Yelf

It may be that and anecdotally we hear that occasionally, that people simply aren鈥檛 ready to accept that that鈥檚 where they are in their sight loss journey and they may put that off for that reason.听 And it may be simply a question of pride 鈥� that people aren鈥檛 interested in the benefits, they don鈥檛 want to take advantage of that, they鈥檙e independent minded and independent in the way they want to live their lives and they鈥檙e not interested in going down something that they might feel is a sort of dependency route if you like.听 So there may be reasons why people just don鈥檛 want to do that and of course it鈥檚 absolutely within their rights to do that, there鈥檚 no compulsion, people don鈥檛 have to be registered at all and it would be quite wrong if people were compelled to be registered.听 But there are advantages and we do want people to know and be aware of those advantages so that they鈥檙e not missing out on something that could actually be very useful to them.

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White

Of course with the problems being quoted every week about the difficulties of providing social care, both through the government and local authorities, can the system cope with this increased demand 鈥� if people 鈥� more register 鈥� can we be certain that people will get these benefits?

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Yelf

Well that is a very fair question and we are currently firefighting in a number of places around the country where we are aware of low vision services being withdrawn because our contracts are not being renewed and clinically commissioning groups are no longer prepared to fund these services.听 So that is a very significant and growing issue and we have heard historically in the past of cases of people where the certification element of this two stage process has happened but then there鈥檚 an enormously long delay before the local authority gets round to actually the registration, which is what triggers the next stage of support and help and so on.听 So there are many ways in which this can be suboptimal, if you like, but certainly can never happen at all if the patient is not aware of it and can鈥檛 ask for it.

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White

One other thing, which is other people now being involved in the registration, how significant is that because there was a time when it was sort of almost the fiefdom of the ophthalmologist wasn鈥檛 there?

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Yelf

Yes, well we welcome the idea of other people being involved because I think ophthalmologists 鈥� there aren鈥檛 enough ophthalmologists to go round to treat people and it makes perfect sense, I think, that other people should be able to complete the forms and I think often lots of eye clinic staff do get involved in the completion of the form.听 The trouble is it does need a firm diagnosis from a qualified person to say what the person鈥檚 visual condition is, what their diagnosis is and whether or not this is a permanent condition for them.

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White

So what advice do you give to your members?听 I guess quite a lot of them come to you perhaps almost beyond that point, although maybe I鈥檓 wrong about that, I鈥檓 just wondering you 鈥� as an organisation what you say to people.

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Yelf

Well what we say is that if people feel that their sight is dropping they should ask about certification, if they think that they may be approaching that threshold.听 I think it鈥檚 very important for the patients, who are not going and being seen regularly in eye clinics, that they still go and have regular appointments with their optometrist, their high street optician.听 There are lots of reasons why people with Macular Degeneration, for example, should still see their high street optometrist because they may have other eye conditions, they may have short sightedness or long sighted 鈥� all kinds of other things that optometrists can help with optimising the vision that they do have.听 And those optometrists should be able to identify when somebody is approaching that threshold for certification and refer them then into the hospital doctor for that to happen.听 So regular eye tests, just as you would if you didn鈥檛 have Macular Degeneration, at your local optometrist is a very important part of your overall eye health care and will make sure that you do get referred to the right person if you are registerable at that stage.

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White

Cathy Yelf, CEO of The Macular Society.

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Music

Now, last Saturday night should have been a great one for music lover David Small.

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Music

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David was seated in a box at London鈥檚 Royal Albert Hall. 听But he knew what many who shared the box with him didn鈥檛 鈥� that this could be for the last time.

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Small

The RNIB has had a box at the Royal Albert Hall since 1929.听 It was bequeathed to them by 鈥� obviously by someone who was very wealthy.听 The boxes at the Albert Hall are in perpetuity until someone decides that they want to sell them.听 They do command very high prices when they come on the market.听 Anyway that鈥檚 been in the gift of the RNIB for the sole use of partially sighted and blind service users of the RNIB.听 And it鈥檚 been a marvellous service for me, I mean I lost my sight in 1998.听 I didn鈥檛 know about it for a while because it鈥檚 never been widely publicised until lately and it gives you the opportunity to enjoy 鈥� especially the 麻豆约拍 Proms, which are on at the moment 鈥� in comfort and also besides the music there鈥檚 a social side to it, that you meet people from all over the place who come to London to use the box.

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White

So what鈥檚 now happened about the box then?

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Small

Well now what鈥檚 happened now is that I put in a request for a concert at the end of September and on Thursday I had an email from a music advisory service to say that the trustees have decided to sell the box.听 Nothing about consultation with membership or anything else.听 And that they were in discussions with the Royal Albert Hall to try and do a deal for tickets in the auditorium for 10 years.听 Well there was a problem with the seats in the auditorium, they鈥檙e a lot more expensive than the box, the box is subsidised so per seat you pay 拢16 but I mean lots of the concerts in the Royal Albert Hall I mean they can be as much as 拢98 and even if you get two half price you鈥檙e still paying 拢49 a seat.听 And for a lot of blind people that鈥檚 a lot of money.听 And I think music is so important for blind people, it has been for me, when I lost my sight the one thing I still could cling on to was music.听 And I鈥檝e been to concerts which I wouldn鈥檛 normally go to and I鈥檝e really enjoyed them because the box has been available.

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White

Has there been any warning of this?

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Small

No none at all, this email on Thursday 鈥� and it wasn鈥檛 really about that, it was telling me that my request had been rejected and that they were going to sell it.听 And on Saturday night I went to a prom and the other people in the box had not heard about this, they鈥檇 been using the box on and off over the years, and they were absolutely disgusted by the fact that no one had been told.

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White

Have you had any explanation from the RNIB?

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Small

Well they want to use it for other services they say but what worries me about that is when they say they鈥檙e going to use it for other services it just goes into the coffers and who knows what happens to that money.听 And they will raise quite a bit of money because those boxes are quite valuable.听 And I say well why can鈥檛 that money be hypothecated to music because they do spend so little time on music and it鈥檚 so important.听 The prom on Saturday night was really wonderful because it was the Royal Concertgebouw Orchestra from Amsterdam and they had a concert of Haydn and Mahler symphonies which 鈥� I mean the audience was just ecstatic at the end, it was a wonderful experience.

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Music

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I would like it to continue.听 If they can鈥檛 afford the administration with a paid administrator I mean there must be someone who鈥檚 semi-retired, retired, who would like to take on that role 鈥� that鈥檚 one way round it I would have thought.

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Music

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White

David Small. 听听Well we have heard from other people too about this, including John Savage.听 He says he was annoyed and upset in equal measure to hear about the RNIB鈥檚 plans to sell their Albert Hall box.

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We did invite the RNIB on to the programme to talk about this. 听They opted to send us a statement, they say:

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RNIB Statement

We have made the decision to sell RNIB鈥檚 box at the Royal Albert Hall to enable investment in other areas of our vital work supporting blind and partially sighted people. 听As a venue, the Royal Albert Hall already offers a limited number of two for the price of one tickets for people with disabilities, offering continued access to events. We are working directly with the Royal Albert Hall on a new scheme for RNIB customers which we will introduce in the New Year.

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And we will of course keep an eye on that story.

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Now, got a late holiday planned? 听Well if so, you could do worse than take a few tips from Red Szell.

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Szell

Going away on holiday can be a mixed blessing when you鈥檙e blind.听 Sure it鈥檚 great to escape the daily grind of work and chores for a week or two but I seldom find it relaxing.听 At home I鈥檓 on familiar territory, I know where everything is and if I want to go out to the shops or the climbing wall I can do so independently.听 But on holiday I鈥檓 always reliant on someone else.听 Whether it鈥檚 finding the coffee, working the microwave or being escorted everywhere in case I get lost, the lack of independence is dispiriting.听 And then there鈥檚 sightseeing 鈥� I know it goes with the discovering new territory part of the holiday and I don鈥檛 expect anyone to forgo the pleasure on my account but the constant refrain of 鈥� ooh look at this 鈥� and 鈥� ahh isn鈥檛 that beautiful 鈥� does get irritating when you can鈥檛 see the objects being ogled.听 So I鈥檒l often stay behind and listen to an audiobook instead.听 Which is okay but all rest and no play makes me intolerable.听 I need my daily dose of exercise and if I don鈥檛 get it I go stir crazy.听

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So thank goodness for the Isle of Wight, with its own association for the blind it鈥檚 an island that takes accessibility seriously, which means that there are loads of activities to keep me busy.听 Unfortunately climbing the Needles isn鈥檛 on the agenda, at least not on my family holiday.听 The aim is to find something that we can all enjoy doing together.听 This year, our eighth, Kate, the kids and I went off the beaten track and explored the island on bikes.听 Thanks to a wonderful charity called Charlotte鈥檚 Tandems we had free use of a bicycle made for two.听 And with Kate steering and me pedalling hard behind the kids quickly discovered that their parents aren鈥檛 so decrepit after all.听 A few days later we were riding the waves, with me and an instructor in a two man kayak and Kate and the kids in singles we were all able to enjoy paddling at our own pace.听 After all that fresh air and fun I was quite happy to stay behind and do my own thing when the others did go sightseeing.听 And we all returned to London relaxed, refreshed and without feeling that my blindness had been an issue at all.

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So no points for guessing our holiday destination next year.

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White

Red Szell.

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And then of course, there鈥檚 the issue when you go with someone, of how to release them from the bondage of being your guide. 听They鈥檙e on holiday too, after all. 听And that鈥檚 the thing about personal columns, they always start you off with a train of thought of your own. 听Well we鈥檇 like more of them on In Touch. 听We鈥檝e also noticed that the last few have all come from men 鈥� we鈥檇 like some columns from women please. 听And if reading them from braille or print on the air is a problem, we鈥檙e very happy to discuss ways round that.

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And that鈥檚 it for today. 听Do let us have your comments and views. 听You can call our action line on 0800 044044 for 24 hours after the programme. 听You can email In Touch at bbc.co.uk, or click on the Contact Us link from our website, that鈥檚

where you can also get more information about the programme and sign up for our podcast.

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From me, Peter White, producer, the returning Cheryl Gabriel and the team, goodbye.