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IN TOUCH – Financial Aid for Ukraine; The Royal College of Ophthalmology on the Delivery of Medical News

TX:Ìý 21.02.2023Ìý 2040-2100

PRESENTER:Ìý ÌýÌýÌýÌýÌýÌýÌýÌý PETER WHITE

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PRODUCER:ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý BETH HEMMINGS

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White

Good evening.Ìý Tonight…

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Clip

Sometimes the words that are used, such as blind or loss of vision, may not necessarily have the same meaning by both the patient or the clinician delivering that.Ìý I think that clearly is a fault, which we try to avoid.

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White

We’ll be hearing more from the Vice President of the Royal College of Ophthalmologists about the kind of training specialists get when it comes to delivering potential bad news about the state of your eyes and why it may not be enough.

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But first, this Friday will mark a year since the Russian invasion of Ukraine and still no sign of the ordeal of the Ukrainian people coming to an end.Ìý Amongst our coverage of the situation for blind people in Ukraine we heard from the blind couple Olga and Denys Petrov, who took their small child and seven animals across the border into Poland.Ìý Olga was also pregnant at the time.Ìý Well, she’s now had the baby, in a moment we’ll be checking in with them to see how things are going, almost a year on.

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But first, we’re joined by Lars Bosselmann, the Executive Director of the European Blind Union.Ìý

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Lars, welcome back.Ìý Your organisation has recently sent financial aid, I think, into the most war affected communities in Ukraine.Ìý When we first spoke to you it wasn’t quite clear what help might be needed and where it was going to come from.Ìý What actually have you been able to do over the last year or so?

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Bosselmann

We’ve been recently having a very good communications and collaboration with the National Assembly of Persons with Disabilities, which is the Ukrainian umbrella organisation and through and with the help of them we’ve been able to do mainly two things.Ìý One is actually a helpline, a helpdesk, for people who acquired blindness as a consequence of the war and secondly, to help to at least partially repair a residential institution which welcomes internally displaced people with disabilities and blind and partially sighted people amongst them so that they can, at least, stay there in a safe place for the time being.

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White

Can we talk about those two separately?Ìý Let’s start with the issue that you said that there are actual direct victims of the war.Ìý Do we know how many people have lost their sight or had their sight damaged?

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Bosselmann

There are not overall statistics, as you can imagine, in such times of war but just to give you an indication, which I, myself, got just over the last month, there were more than 150 people who called specifically that helpline, which sounds a lot or little, that depends on your interpretation and look at things.Ìý All these are people who recently lost their sight or about to lose their sight and need really help and help in that case, of course, means a lot very practical, daily life help; the technical aids, the devices and so on, that they would need to cope with a new life situation that they are now finding themselves in.Ìý But, also, psychosocial help and support, of course, as well, there’s a lot in such a situation to it.

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White

You also talked about helping structurally rebuilding places because presumably there were areas, centres, where blind people were living and working that have been bombed?

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Bosselmann

Yes, of course, we always have to remember this remains a drop in the ocean compared to the needs that are out there.Ìý But, nevertheless, we’ve been able to repair one centre that is there that at least people can now stay and continue staying and living there.Ìý But we receive from more places in Ukraine reports about damages to educational centres – schools – and we’ll try to get more direct support to these places.Ìý And we’re continuously looking into further supporting places in the neighbouring countries of Ukraine where many blind and partially sighted refugees have, of course, found a temporary home, so to speak and we are also supporting some of the organisations there.Ìý We are also trying to partner with other disability or blindness organisations also at the global level so that the impact, possibly, of the joint action is a bit bigger than what we can just do as EBU.

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White

Lars Bosselmann, good to talk to you, thank you very much for joining us.

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Now two people who did decide to leave Ukraine and did so with their five-year-old daughter and another child on the way, not to mention seven animals, were Denys and Olga Petrov. ÌýWell, they crossed the border into Poland and they’re still there.Ìý We wanted to catch up with them, so I’m delighted to say that they can both re-join us.Ìý Let me start with you Olga.

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You’ve now had your baby that you took out in that very secure method that you had but not free of problems, I think, explain what has happened.

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Olga

Well, I would say after we arrived in Poland everything went pretty smoothly with my pregnancy and with the delivery, so I was just delighted all the time that I was in this safe environment.Ìý I had to adjust to a different medical system and figure out how everything works but compared to what was happening in Ukraine at the time, it was like really a minor problem I think.

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The bigger complication happened, actually, a bit later, during Christmas, he got sick and it turned out that he was having meningitis.Ìý Thanks to wonderful doctors, who helped us, everything ended well and we are now back home and he is perfectly healthy again, but it was a very tough time for us.

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White

Right, so as if you hadn’t got enough to cope that was put on your plate as well.

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Olga

That was the feeling I had, yes, isn’t it enough already?

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White

Let me come to Denys.Ìý What’s the plan now, what are you thinking of doing, any plans, for example, for returning to Ukraine at the moment?

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Denys

It is very hard to plan to return to Ukraine, like I very badly want to return but for the children, it is at this point, it is unsafe, you know, about those power outrages and rocket attacks that happen all the time.Ìý And we wouldn’t like to expose our children to that.

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White

And presumably also because you’ve made contact, you’ve obviously got medical contacts with the new baby, so I suppose, in a way, you feel you want to stay there for sort of security, to some extent?

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Denys

Quite right because of the security we have to stay here, at least until the war is over and even after it is it’ll probably take some time for life to go back to, not maybe, exactly normal, but to be some liveable extent, you know.Ìý So, we are waiting for that to happen.

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White

And I gather that the Polish system has been quite accommodating to people who come over in terms of getting equipment if they need it?

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Denys

Well, yeah, they actually gave us a similar rise as Poles have, so they allowed us to apply for new equipment once every five years, they finance about 2,000 euros for a braille display and about the same amount for things like laptops and phones and maybe accessories for those.Ìý So, they allowed that also for us.Ìý

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White

So, you’re being treated as nationals?

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Denys

Yeah in the majority of ways, speaking about the accessibility to the rights that blind people have here or people with disabilities have here, it’s like 90% the same.

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White

Olga, can I ask you what your own feelings are about how long you’re going to stay, about the risks of going back because instinctively, presumably, you want to go home?

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Olga

Actually, I feel so safe and so accommodated here right now, because whenever I read these terrible stories about children or babies getting hurt or getting killed in Ukraine I have this feeling – it’s good I’m not there with my children right now because with the children, I think, it’s really impossible to be there, it’s a great risk and I don’t want to take it.Ìý And so, as far as, there is war I would really like to keep my children away from that because like even my daughter, who is five at the moment, she stayed there for 10 days only during the war and it was so traumatic for her, I could really see the effects after 10 days only.Ìý So, I really can’t imagine what it is like for children who stay there for months, who really experience worst things than she had to go through, who have to spend days in the underground or in cellars, so it’s really not anything that I want my children to experience.

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White

Well, the very best of luck to all of you, including the newest Petrov and thank you very much for joining us again – Denys and Olga Petrov, thank you.

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Now surely you should be able to expect the delivery of medical news about your eyesight to be given in a thoughtful and sensitive way, especially if the news is potentially life altering.Ìý People with long experience of little or no sight know that a good life is very much still possible.Ìý People facing this for the first time don’t know that.Ìý But we’ve been receiving a lot of emails recently, like this one from Judy Cobbett.

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Cobbett (email)

Forty years ago my daughter had inflammation on the brain and it destroyed her visual cortex.Ìý I’d previously been told that her sight could return in time but the specialist responded to this reassurance by telling us that it wouldn’t.Ìý This was said in a tone of impatience and stoicism.Ìý The eye specialist was abrupt and detached and he told us he would inform social services that my daughter should be registered blind.Ìý This was clearly a routine matter for him and had been the main purpose of the appointment.

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White

But surely, you’ll say that was 40 years ago, things must be different now.Ìý Well, not judging by the experience of Pauline Mottram, whose recent encounter with her ophthalmologist gave rise to this avalanche of responses.

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Mottram

He said that my retinas are degenerating and he said, basically, I’m in the process of going blind and he used the word blind, which I found really shocking, it was like a sort of kick in my stomach.Ìý I mean I told him that I live alone and I have no family and he just sort of looked at me, he didn’t even give me any leaflets for RNIB or anything.

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White

Well, the Royal College of Ophthalmologists is the representative body for the ophthalmic profession in the UK and we’ve invited them on to the programme to give us some insight really into what is best and current practice when it comes to delivering this kind of news and why these sort of incidents still happen.Ìý Their Vice President is Stephen Kaye and he joins me now.

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Stephen, first of all, I mean, what kind of training do ophthalmologists actually get in this area of breaking the news?

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Kaye

So, ophthalmologists get training initially when they’re medical students and all medical students are taught how to break bad news to patients and what’s needed to provide the information necessary and support for the patient.Ìý And then, subsequently, once the medical student enters, say, ophthalmology, during the curriculum ophthalmologists, themselves, are given training, usually informally and sometimes formally, on how to approach patients who are losing sight, what information to provide and what services are available.Ìý This is assessed and really ophthalmologists wouldn’t actually qualify unless they were able to demonstrate that they can provide this type of information and provide patients with the support.

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White

And yet, Stephen, you heard there some of the experiences of our listeners, two experiences 40 years apart but one only the other day, so in spite of what you’ve told me, it sounds like this is still happening.

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Kaye

Yes and I was disappointed to hear that and I can recognise these circumstances.Ìý I think, sometimes, it comes down to firstly, the clinician not being fully aware of the patient who’s in front of them and understanding the patient’s circumstances and sometimes the words that are used such as ‘blind’ or ‘loss of vision’ may not necessarily be understood – have the same meaning by both the patient or the clinician delivering that.Ìý I think that clearly is a fault which we try to avoid.

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White

Yes because obviously people, when they hear the word ‘blind’, if they’ve not had experience, they immediately think totally blind and they probably immediately think this going almost suddenly out of the blue, waking up one morning.

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Kaye

Yes, exactly, exactly and I think you’ve kind of hit the nail on the head there, it’s kind of using the words and understanding the words and what we mean by them.Ìý So, an ophthalmologist might, for example, think about blind as what’s required to be registered, let’s say, not being able to see the top letter in the chart at less than three metres away, whereas for the individual affected, as you say, the connotations are complete blackness and not being able to see anything.Ìý So, I think it’s really important that the right language is used and delivered in the appropriate way and I think, yes.

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White

One of the things that Pauline was clearly most concerned about though was that she left the consulting room with no knowledge of what was possible, what could be done.Ìý What kind of training is actually given when it comes to providing information about what services come next?Ìý For instance, where people can go for support, for getting around, for example, coping in the kitchen, assistive technology, maybe clubs where you might meet other blind people who could give real practical advice.

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Kaye

Yes, exactly.Ìý So, just taking it one step back there, it comes also having knowledge of the condition, so if the person has a condition which is going to lead to a rapid deterioration of sight or slow progression in sight or loss of central or peripheral vision, that kind of information is crucial to providing a way forwards to the person affected, so there’s some sort of plan involved and what that’s going to mean for the person.Ìý We’re not alone in delivering this kind of work, so we have the people who support us, known as eye care liaison officers or eye care health professionals, and these people are crucial in providing the kind of information and support needed.Ìý So, for example, if someone attends and is losing their sight, either slowly or rapidly, the information that’s provided as to the outcomes of the condition and then that person is then seen, usually at the same time as the appointment, that’s delivered by the eye care liaison officer and that person will then take them through what support services are needed.Ìý So, firstly, what community services are available, what benefits might be available and what concessions that person might be entitled to.Ìý And that ECLO is crucial to this process.

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White

But those ECLOs aren’t in all hospitals by any means are they?Ìý Where they’re there they’re very much valued but they’re not everywhere by any means.

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Kaye

No, exactly and that’s a really important point.Ìý But I think even in a situation where they’re not available, there are usually nursing staff who do have some training in this regard, perhaps not necessarily as well – as formally trained as an ECLO but they do have some training in this regard.Ìý And equally, as an ophthalmologist, it’s expected that we do have some training in that regard.Ìý So, we’re taught, to some extent, what the ECLO provides, so if the ECLO’s not available we would then say the services which a person is entitled to, if they, for example, suffer sight loss and what benefits they’re entitled to, so we do have some knowledge about that.Ìý So, it’s not as if an ECLO is not there that there’s no – this kind of information is not available.

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White

I wonder if there is a sense though, amongst some ophthalmologists is that this isn’t my bit, what happens next, I do the eyes, I can tell you what might happen physically but when it comes to what happens next that’s not me?

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Kaye

Possibly but I still think, you know, as doctors we don’t just see the person from the eye point of view, we see them as an entire person and take a holistic view.Ìý And most times when we deal with patients, we tend to have known them for quite a considerable period of time, so we have some idea what their circumstances are like and we do have that kind of knowledge to be able to guide them to some extent.Ìý But, I guess, coming back to your point, yes, you know, having people like ECLOs is essential and there are not enough of them and clearly that’s something which needs to be addressed going forwards.

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White

And is that the main thing you think that could make a difference because there were no ECLOs in Pauline’s case and her local health authority is only considering it now, after her case…

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Kaye

After the event.

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White

Yeah.

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Kaye

Yes, yes.Ìý I think we’re trying to get data on where ECLOs are and which hospitals have them and which don’t.Ìý The need for ECLOs and these types of individuals is understood and whether the – I’m sure we’re driven by financial circumstances – but I think regardless of that, the need for ECLOs overrides the financial cost for them.Ìý So, I think in any eye department throughout the country they’re an essential person.Ìý So, I can’t really see any argument not to have an ECLO in such circumstances.

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White

Okay, well we stay with this subject.Ìý Stephen Kaye, thank you very much indeed for joining us.Ìý There are various ways you can talk to us with your comments and queries about this or anything else you’ve heard in the programme.Ìý You can email intouch@bbc.co.uk, leave voice messages on 0161 8361558 or go to our website where there’s more information and from where you can download tonight’s and many previous editions of the programme, that’s bbc.co.uk/intouch.

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That’s it for tonight.Ìý From me, Peter White, producer Beth Hemmings and studio manager Nat Stokes, goodbye.