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IN TOUCH 鈥� Drug Supplies and a Photographic Record

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TX:听 25.08.20听 2040-2100

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PRESENTER: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 MIKE YOUNG

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White

Good evening.听 How safe are our supplies of sight-saving drugs?听 We try to sort out fact from rumour.听 And when in Rome:

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Clip

They say 鈥� hey, you must go more quick because there is the queue and the person want to buy the things 鈥� and so we don鈥檛 have much time.听 And this was the first time that it happened to me.

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White

We compare notes with Italy on the social distancing experience and much else besides.

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But first, the news coverage has been far more about Covid-19 over the past few months and that old perennial Brexit has rather taken a back seat.听 But the National Pharmacy Association has told this programme that there needs to be greater certainty about the regulation and supply of drugs and medicines when the Brexit transition period ends in December.听 From January 2021 we鈥檒l have left the EU single market and customs union and that鈥檚 worried one of our listeners, who has glaucoma.

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Strutt [phon.]

My name鈥檚 Julia Strutt and I live in Stratford-on-Avon.听 I鈥檓 worried because I take three lots of eye drops and they come from Greece, the Republic of Ireland and Italy and I鈥檓 worried about what鈥檚 going to happen when the transition periods finishes in December, will they be available on the NHS.听 I鈥檓 taking Dorzolamide, which comes from Greece; Lumigan from the Republic of Ireland; Brimonidine, which comes from Italy.听 My consultant told me that he thought it was a good idea simply to make sure that I had a good supply.听 I鈥檝e had these eye drops since 2006, there鈥檚 no other possible way of managing my glaucoma.听 I鈥檓 very seriously worried about availability because I don鈥檛 want to lose my eyesight because of Brexit.

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White

That鈥檚 Julia Strutt, who emailed us.

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Well, let鈥檚 speak first to Gareth Jones about Julia鈥檚 concerns.听 He鈥檚 Head of Corporate Affairs at the National Pharmacy Association.

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So, Gareth, I mean, what do you say to the problem that Julia is highlighting?听 A lot of medicines do come to us from the EU and we鈥檙e only just over four months away from leaving.

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Jones

Yeah, well, first of all, my advice to Julia is actually make sure you get your prescriptions filled in plenty of time, so, don鈥檛 leave it till the last minute.听 Your pharmacist and your doctors will always do everything they can to ensure you get the medicines you need but giving them plenty of time to get the supply is important.听 And equally, I wouldn鈥檛 recommend stockpiling either, I think just make sure you get your prescriptions in, in plenty of time.

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But turning to the wider questions here.听 Nobody knows for sure what will happen post the end of the Brexit transition period, it is only four months away now and there is uncertainty in the medicine supply chain and so, yeah, we would very much like to know what is going to happen at that point because that will help the supply chain to plan, pharmacists to plan.

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White

Because Gareth, you do say that you have real concerns and there are genuine risks when it comes to our drug supply from abroad if the government doesn鈥檛 get this right.

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Jones

Yes, so, the government has done a number of things already.听 So, it鈥檚 put in place additional freight capacity to help move medicines across the Channel and it鈥檚 asking manufacturers to bring six weeks additional stock into the UK, so they actually have that on UK soil.听 We would like them to do a couple of other things.听 One, is provide the certainty that we know exactly what is going to happen as soon as possible but also, actually, to give pharmacists some more flexibility.听 So, in the past pharmacists were allowed to swap medicines between each other, so, if one had a shortage and some had some spare stock, they could swap supplies.听 We鈥檙e not allowed to do that anymore.听 Actually, ironically, due to EU law.听 And so, we鈥檇 like to see that flexibility introduced because that will help move supply around between pharmacies and can help ensure continuity of supply.

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White

Let me bring in Cathy Yelf, who鈥檚 the Chief Executive of the Macular Society, which of course gives support to hundreds of thousands of people who have various forms of macular disease.听

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First of all, Cathy, the Department of Health and Social Care told us patients can be reassured that we have robust contingency plans in place and every possible step is being taken so that people continue to receive the medication they need.听 And they went on to say they鈥檙e not aware of particular problems facing the drugs Julia mentioned specifically 鈥� she has glaucoma of course.听 They also say their Chief Commercial Officer wrote to all suppliers of medicines and medical products coming to the UK from or via the EU setting out how the department will work with suppliers to deliver safe continuity of care by mitigating any disruption of supply when the transition period ends.听 In other words, they鈥檙e saying we鈥檝e got it fixed.听 What鈥檚 your feeling about those reassurances?

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Yelf

At the moment, we haven鈥檛 any evidence that this is wrong, so, nobody, at the moment, is raising any red flags with us and saying we are really worried about the supply of drugs, medical consumables and all the other things that go with treating macular degeneration.听 Having said that, of course, what we do know of the government鈥檚 plans are that it has plans and it鈥檚 promised, I think, in its recent statement that it will deliver a 鈥� working with suppliers and industry, manufacturers and so on, the supply chain to produce a detailed plan of the contingency messages and how they鈥檙e going to overcome the difficulties.听 And what we鈥檙e looking forward to seeing is the detailed plan.

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White

There鈥檚 a range of medicines used to treat macular disease 鈥� Eylea, Lucentis 鈥� there are others as well, what鈥檚 the situation, specifically, over those, as you understand it?

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Yelf

Well, as we understand it, they will be part of the overall plan which is to make sure that there are sufficient stocks to meet demand until any initial difficulties are ironed out in the supply chain.听 So, the government is promising that medicines will be the number one priority for example.听 They are talking about having a phased introduction of border controls, so that they won鈥檛 pull the shutters down on all the controls straightaway.听 They want to talk to the suppliers, of course, to work this out and there is going to be, as you heard already, some national stockpiling to make sure that we鈥檝e got plenty in hand in case there are any difficulties.听 And they鈥檙e doing things like readying other points of entry around the country, so other ports perhaps, to take the pressure off places like Dover.

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So, we can see that there are plans in the making.听 The detailed plans we will look forward to seeing.

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White

I mean do you think you should know this 鈥� all this by now?

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Yelf

Well, we are getting to the point where we do need to know, aren鈥檛 we, as you say we鈥檙e now towards the end of August, there isn鈥檛 very much time, and I think the government will need to understand that people will be a little bit sceptical about its readiness, given some of its recent history on preparing for things that we know are actually going to come down the line.听 And we do want some reassurances about this now.

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White

Now, I think you鈥檝e also said it鈥檚 not just the key drugs that you have to be concerned about, it鈥檚 other basics as well.听 What did you have in mind?

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Yelf

Well, to have an injection in your eye you need to have a local anaesthetic, for example, and that supply needs to be in place as well.听 You need to have some eyewash, to make sure you鈥檙e protected against infection and that needs to be available too.听 So, there are lots of other elements of the treatment that also need all to be in place, not just the actual medicine that鈥檚 being delivered.

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White

Thank you.听 Just finally, I want to go back to Gareth because if pharmacists do have trouble sourcing medicines won鈥檛 that have an effect on prices?听 That happened in 2019, didn鈥檛 it, with around 80 medications were in short supply in England with Brexit uncertainty being blamed.听 So, is there a danger that prices might rise?

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Jones

Yes, for some medicines there is a list of prices changing but, in most cases,, of course, if you get your medicine through the NHS, whether you pay the prescription fee or not, there is no actual effect on the individual patient 鈥� the NHS has to fund the additional cost.

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White

But obviously there are effects if costs go up and there are, of course, people who do get stuff privately if they鈥檙e getting something unusual.

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Jones

Yes, on some medicines price can flux and that鈥檚, I suppose, one of the uncertainties here, nobody knows exactly what will happen at the end of the transition period and that is one of the uncertainties that we have.听 And, of course, the other one is that a lot of preparations were made about a year ago for when there was a risk of a hard Brexit but the difference now is that we鈥檝e had coronavirus which has put extra pressure on the supply chain and depleted some stocks, so that鈥檚 an additional challenge that we have this year, we didn鈥檛 have last year.

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White

Gareth Jones from the National Pharmacy Association and Cathy Yelf from the Macular Society 鈥� thank you both very much indeed.

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And thanks to all of you responding to items in recent programmes.听 We do read everything you send us.听 For instance, singer Ann Wilkins got in touch, having heard us discussing the Her Abilities Awards a couple of weeks ago.听 These are awards specifically recognising the achievements of women with disabilities.听 Ann says: 鈥淚 found the deafblind speaker, Haben Girma, particularly interesting when she spoke about awards for people with disabilities.听 But I have to say, I don鈥檛 particularly agree with her.听 I was recently interviewed for a Welsh programme on S4C, which looked back at past winners of the David Ellis Memorial Blue Ribbon, it鈥檚 one of the main competitions at the National Eisteddfod of Wales.听 I won this competition in 2012 and if there was a similar Eisteddfod or competition exclusively for blind people I probably wouldn鈥檛 bother to enter.听 For me winning a mainstream competition was a particularly proud moment.鈥�

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And Stephen Portlock has emailed as well, after we discussed the soundscape production of Blindness, which is on now until September 5th at London鈥檚 arts venue Donmar Warehouse.听 And Stephen says: 鈥淏elieve it or not, I鈥檝e read Jos茅 Saramago鈥檚 novel on which this based at least three times.听 I read it when the movie came out.听 The novel troubled me, so I gave it another go.听 Then with the new Donmar production, which I鈥檝e seen, and with awareness of the novel鈥檚 topicality I read it yet again.听 Personally, I was less bothered with how grim it is than by the relationship between the blind people and their sighted saviour.听 She came across as a saint and the blind people as somewhat infantilised.听 Saramago鈥︹�� Stephen said, 鈥溾��throws in numerous insights into blindness that are either confusing or else flat out wrong.鈥�

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And we stay with the arts for our other item today because an Italian photographer, Stefano Sbrulli, has gained international attention after documenting the difficulties of blind and partially sighted people as we鈥檝e adapted to a world of social distancing.听 Italy faced one of the strictest and longest running Covid-19 lockdowns in Europe.听 Now the 大象传媒 has put together a collection of Stefano鈥檚 photographs, along with descriptions of who is featured and how they coped between March and June.听 He鈥檚 told us what prompted him to take these pictures.

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Sbrulli

Living in a noiseless city was disorientating for our blind people, no?听 A totally different feeling for people with visual impairment.听 There is a social problem and nobody talking about it.听 And my photographs were the right way to talk about it.听 I am happy because this work has had a worldwide resonance, all thanks to 大象传媒 and photo editor Philip Comms [phon.], who believed in the project.听 I am very happy for this reaction.

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White

That鈥檚 Stefano Sbrulli.听 And that point about a noiseless city and how disorientating it is, is a very interesting one.听 You can see some of Stefano鈥檚 photos and read about the people in his pictures, they鈥檙e featured in a 大象传媒 News Online article and there鈥檚 a link to that on our own In Touch website.听 And among the people who featured in Stefano鈥檚 portraits was Ettore Galassi [phon] who lives in Rome and Ettore joins us now.

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Ettore, first of all, I mean how did you get involved with this, how did you come to be one of the people who was photographed by Stefano?

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Galassi

Stefano called me and he asked me to do this kind of reportage about the difficulty of person blind or low vision that have low vision during the lockdown and especially in the moment where there was the social distance.听 I explained all the difficulties that they meet and also of my friends that have my same kind of problem.

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White

Ettore, tell me about your own degree of sight loss.

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Galassi

In Italy we call partial blind, partial blind mean very low vision, it鈥檚 before the blind.听 So, I can see just a little bit.

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White

And what was lockdown like for you?

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Galassi

For me really was a little bit difficult because normally when you go around I am a person that I often travel even alone, I鈥檓 a person that takes the subway alone [indistinct words],听 okay, so, I am a person quite sure about myself, I don鈥檛 care about my disability, I don鈥檛 have any kind of problem to the person to say okay, this is my problem I鈥檓 feeling like this.听 But, the thing is that normally the person never watched you, never think what are you doing if you are going slow or thing like this right?听 During the lockdown it鈥檚 different because the person are very afraid to stay behind you or things like this, so, they begin to watch you and when they begin to watch you begins the problem.听 Sometimes I did the queue for go to the pharmacy or to buy something and to the supermarket and sometimes it happened that I don鈥檛 realise that there was the ending of the queue and I go insides, somebody say 鈥� Hey, where are you going man, you don鈥檛 see that? 鈥� always.听 The typical sentence is 鈥� you don鈥檛 see that? 听Of course man, I cannot see that.听 And even the person that work inside, they say 鈥� hey, you must go more quick because there is the queue and the person want to buy the things and so we don鈥檛 have much time.听 And I also asked to my wife 鈥� okay, it鈥檚 better if you go, you to do 鈥� to buy some things, it鈥檚 better if you go to do these sort of things.听 And this was the first time that it happened to me.

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White

I鈥檓 interested that you say that you actually stopped going to the shops, to some extent, your wife would go instead of you.听 So, this is a question of you losing some confidence really, that you would have had in the past?

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Galassi

I lose not the confidence in myself but maybe I was a little bit afraid about the person that say 鈥� Why did you do this, why do you move so fast 鈥� you know, the pressure 鈥� the pressure was completely different right?听 And so I say, okay, if my wife could go I prefer that she go.听 And this is not a good thing of course.

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White

Now you鈥檙e not 鈥� you鈥檙e not only visually impaired yourself but you work with other blind and partially sighted people and I鈥檓 wondering what kind of things they鈥檝e said to you, what experiences have they had that maybe mirror yours or maybe are completely different to yours.

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Galassi

All the person that have this kind of disability, they have some problem.听 On the floor there is the line where you must stop or things like this, they say 鈥� we cannot respect these kinds of rules 鈥� they are not able, no more, to touch and if you lose the touch, for us, it鈥檚 very important.听

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White

We were particularly interested to talk to you because, I mean, Italy had really a comparable situation to ours, you just had it a bit earlier but they were both severe and I just wonder what鈥檚 happening since really and whether this has had any long-term effect on people.

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Galassi

Maybe the persons are more afraid.听 Even with the mask, you know, or things like this, it鈥檚 much more difficult now.听 So, the things that I say to all my friends鈥� disability, that we must do the same kind of life that we do before.听 You need your time, you need your things to do, but you must not stop it, otherwise you lose all the things that you done before.

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White

What do you think that these photographs by Stefano Sbrulli, what do you think they may have achieved in terms of raising awareness of the challenges that blind people are facing?

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Galassi

Stefano did a very great job, very great worker.听 Maybe he could transmit the kind of problem that we can have or the world that we feel, you know, because it鈥檚 very particular about our world.听 So, I like it very much.

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White

That鈥檚 Ettore Galassi, speaking to me from Rome.

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And there are lots more of Stefano Sbrulli鈥檚 photos to be seen in that 大象传媒 News article, the link to them is on the In Touch website.

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Do let us have your comments on anything that struck you in the programme.听 You can email intouch@bbc.co.uk or you can go to that website bbc.co.uk/intouch and you can also download tonight鈥檚 and previous programmes from there.

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And that鈥檚 it for today.听 From me, Peter White, producer Mike Young and studio managers Jonathan Esp and Chris Hardman.听 Goodbye.

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