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IN TOUCH – Delays in Accessing Essential Services

TX:Ìý 25.07.2023Ìý 2040-2100

PRESENTER:Ìý ÌýÌýÌýÌýÌýÌýÌýÌý PETER WHITE

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PRODUCER:ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý BETH HEMMINGS

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White

Good evening.Ìý Last week we heard from two people about the experience of losing sight gradually and about some of the strange attitudes which surround it.Ìý Well, this week, we turn to the nitty gritty of the services people need to cope with that loss, whether it is gradual or sudden.Ìý Things like diagnosis, assessment of your needs and delivery of the help to acquire new skills, like cooking, cleaning, getting around and why some people think those services often take far too long to arrive and could and should be offered much sooner.

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I’m joined to discuss this by a patient, a consultant ophthalmologist and a rehabilitation officer who offers training in the new skills visually impaired people are going to need.Ìý But first, someone who’s trying to draw attention to the problem of delays and has a foot in both camps really.Ìý Luke Haworth lost most of his sight eight years ago, he works in the eye care services, initially as an eye clinic liaison officer, they’re known as ECLOs and now as sight support manager with a charity – the Accrington Blind Society.Ìý

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Luke, let’s dive straight in.Ìý In an ideal situation what are you saying should happen when someone is diagnosed as losing their sight?

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Haworth

So, for me, it’s early intervention is key.Ìý It stops people from potentially going into depression, mental health issues, it would have done with me and in an ideal world I would like to see diagnosis straightaway once visions have been assessed.Ìý Low vision assessment, support services, everybody given the option of an ECLO, no matter where you are in the country and then rehabilitation as soon as possible.Ìý I think you’re at least giving people the information so they can choose to use that at whatever point in their sight loss journey they are.

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White

So, speed is the essence.Ìý And what is it that you are saying actually happens too often?

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Haworth

Ooh, well in certain situations over different trusts and different people that I’ve spoke to over my career, they can be waiting up to two, three years for interventions, for doing something as simple as just making a brew.

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White

And just before we move on and we’ll get you to talk more about what you think should happen but can we establish what happened in your own case?

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Haworth

Yeah, so I was in a car accident, I had a stroke at the wheel at 27, I was, well we know that’s a few years ago now.Ìý I was diagnosed three months after, I was in a coma for a while, and then started to have to learn to live with being blind.Ìý With me I was very lucky because I went seeking the information.Ìý I was in hospital at the time and I had a team of administrators – ward nurses or ward clerks – behind me saying – right, well have you tried that, have you tried that.Ìý So, I went to all these different places and the support services that were out there to cope with being blind.

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White

But you were pushy and you say because you were in hospital with other conditions you got help that perhaps other people don’t get?

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Haworth

Yes.

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White

Yeah.Ìý Let me turn to Danielle, Danielle Smith.Ìý Now your situation was complicated by covid and as we know that’s still regarded as a major factor when it comes to things like waiting times, even to be seen and then, obviously, that’s got a knock-on effect for treatment.Ìý You lost your sight in one eye in 2019, can you just explain what happened next?

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Smith

Yeah, of course, so, I lost the first eye in 2019 and then around 2020, I’d missed my appointment in the February due to unforeseen circumstances, it was cancelled and I ended up going into the hospital, having an injection and then because the pressure was too high it actually made me go blind straightaway.Ìý They rectified the pressure as quick as they could and then I had to go and have a stent put in to keep the eye open for the pressure to – at a stable level.Ìý They managed to get [indistinct word] about 5% of it back, so I can just make out colours and shapes but don’t really see a lot of detail anymore.

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White

But how long did you have to wait before you got any direct services?

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Smith

Nearly two years in total because of the covid.Ìý I didn’t have any changes to the property that I’m in at the moment until October of last year, so 2022, so nearly just gone two years.

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White

And what about, you know, the business of rehab, learning skills, learning to get around?

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Smith

The same amount of time, about two years.

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White

And what about the issue of the certificate of visual impairment, what happened with that?

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Smith

The certificate takes quite a while for it to come through.Ìý If you leave your appointment without asking about them, then it can get lost in the system.Ìý Luckily, I was already registered as partially sighted, so when I had the operation for my right eye, I asked the consultant to change it there and then, so it didn’t get lost.

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White

Right, so you were aware that there might be delays with that?

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Smith

Yes.Ìý It takes up to 26 weeks with the County Council, for them to even actually access your information and then, obviously, depending on where you are on a waiting list, depends on how much longer you are actually waiting.

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White

Right.Ìý Well, listening to all that is consultant ophthalmologist at Moorfields Eye Hospital Omar Mahroo.Ìý Omar, what we’re hearing is that the CVI – the certificate of visual impairment – is often the trigger for many other things, including getting training in a whole new range of things you need to learn and your entitlement to a range of benefits, including personal independence payments, for example.Ìý Are those CVIs, which then go to social services, always being issued quickly enough?

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Mahroo

They’re not being issued quickly enough.Ìý There are delays at various stages but I think one thing we recognised is sometimes, as the previous guest just said, they’re not being offered to patients or discussed with patients who are eligible for CVI.Ìý So, we did some work, a while ago, and recognised that possibly a good number of the patients who are eligible there’s no record of whether they’ve been offered a CVI or not and we’ve been trying to address that over the last year or so with regular one to two monthly email reminders to all the consultants, posters in clinics, changing our education training ophthalmologists so that they’re aware of the importance of CVIs and what the criteria are.Ìý And also, even trying to get other healthcare professionals to be able to issue them, so it doesn’t always have to be a consultant ophthalmologist who signs off.Ìý That’s already happening in Wales and we’re trying to take steps to roll that out in England as well.

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White

It’s good to hear things are changing but why do you think that there have been delays and are delays with CVIs specifically?

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Mahroo

Yeah, from the ophthalmologist’s side, I think it’s not always foremost in the ophthalmologist’s mind, the focus is on treating the patient, trying to improve the vision or prevent sight loss and it’s not always there.Ìý Which is why I think the reminders are so important, I think ophthalmologists most of them know about the importance but it’s just not there in their mind in a busy clinic.Ìý So, we’re trying to address that by making it very visible and also making it very easy to complete the CVI in clinic.Ìý So, at Moorfields we’ve moved to an electronic form.Ìý I’ve been in clinics in other hospitals where you’re 10 minutes looking for the paper form to do it in the middle of a busy clinic, patients waiting for treatment but if it can be made as easy as possible.Ìý There are also steps to simplify the form as well, then hopefully, that will deal with some of these backlogs.

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White

Well, just before we recorded the programme I talked to Julian Neal, he told me about the implications of the delays he’d had in getting a CVI.

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Neal

Basically, I had a letter from the DVLA telling me that I had failed the mandatory eye test.Ìý As far as they were concerned, I was considered as blind and they revoked my licence.Ìý I then had to go to my own hospital and consultant and even then it wasn’t mentioned about a certificate of visual impairment, I was just aware that I needed some sort of label to get access to support.Ìý Not long after that I lost my job, I then sought advice with Citizens Advice and various other establishments that because I didn’t have a label of any description there was nothing that they could advise me – you can’t claim anything, you can’t get anything and your wife earns too much, so you’re on your own.Ìý I lost my driving licence in November 2015 and then finally got the certificate of visual impairment, the CVI, in September 2019.Ìý It allowed me to be registered with my local authority and allowed me to sort of have support from the rehabilitation officer.Ìý It allowed me to claim for PIP, which, at this point, I’d been unemployed for three years.Ìý It’s still having a massive financial effect.

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White

PIP, of course, personal independence payments.Ìý And even when Julian did apply for his CVI he had to wait five months for that.

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Omar, I mean, do ophthalmologists always know how crucial they are and the possible effect of delays for the patient?

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Mahroo

Most are aware when you talk to them about it, it’s just whether they think of it at that time in clinic.Ìý I think various which clinics are done, I specialise in inherited retinal disease where unfortunately, there isn’t much in the way of treatment, so, every patient we discuss it with but I can imagine in other clinics, where many of the patients maybe aren’t at the CVI level and there’s a focus on treatments and injections, laser, whatever’s happening in the clinic, where it can get missed and that is a real problem.Ìý The other thing that we now have is an electronic system to flag up when a patient might be eligible, so as soon as the visual acuity or visual function’s entered into the electronic medical record it flags up to whoever’s operating the system – this patient may be eligible – and again, that’s a way of reminding people, which hopefully will help in the future.

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White

Okay, Omar, do stay with us, thanks for that.Ìý Also joining us is rehabilitation officer Trish Wilby.Ìý Trish, presumably, you know if somebody perhaps is getting to you who’s been struggling for quite a long time and I’m wondering how often that is the case?

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Wilby

Probably more often than I would like, it’s hard to put a figure on it.Ìý But one thing I will bring up, because the CVI is a very important document and I agree with that, but when the CVI was actually instigated there was also a low vision letter that opticians could have and give to someone and anybody in the eye clinic should be able to download the letter and give it to somebody or send it through and that can get sent to your local authority, in the same way as the CVI does.Ìý They also produced a referral letter, which was available for hospital and clinic staff to be able to send out before somebody ever reached registration levels.Ìý So, there was a system put in place that people could get early help but I think the emphasis within the clinics is still more on the medical rather than the social – how people are managing outside of the clinic.

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White

One other thing, are there enough of you doing the job when people do get to you?

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Wilby

Absolutely not.Ìý Most authorities don’t have a sensory team.Ìý Many authorities have one rehabilitation officer or vision rehabilitation specialist, if they’re lucky.Ìý And if you also recognise that there’s only about a quarter of people who are registered who are eligible to registered.Ìý There’s an awful lot of people out there who could be being seen who aren’t.

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White

I’m going to go back to Luke because we’ve heard now what’s happening kind of in the real world and of the problemsÌý When you were one of these ECLOs – eye clinic liaison officers – in Leeds, you did an experiment, what I like to call your Solomon Grundy experiment, if people remember the old verse of Solomon Grundy born on a Monday, christened on Tuesday and he was dead by Sunday but the point of it is your experiment was to prove how quickly the correct sequence of events could be achieved.Ìý Just explain what you did.

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Haworth

Yeah, so we were very lucky, we had electronic CVIs, just like Moorfields do.Ìý My five-day experiment was, as soon as they were seen by the consultant, irreparable sight loss, filled out a CVI, if the consultant agreed to it.Ìý Day two was ECLO intervention, so ringing up the patient – have you got any needs, are you aware of what’s happening, do they need any signpost referrals, what are your immediate concerns.Ìý Day three was low vision clinic.Ìý So, it was during covid, was this, and low vision services weren’t running within the clinic, we were doing it all on the phone, so, through working with my senior optometrists in Leeds we developed a really good service where do an assessment over the phone and post out the magnifiers or any low vision aids which you thought might be applicable or help that person at the time.Ìý Thursday was the rehabilitation support, so the rovers would have the CVI as soon as I sent it through on the Tuesday, they would do the wellbeing call on the Thursday – are there any immediate concerns, is there anything like that – then, they’re obviously – they go on the waiting list.Ìý And then on Friday was the sector support, so all the support services, so benefits, advice, home assessments if applicable, things like that.

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White

That sounds brilliant but you did it as an experiment I think, I mean can it really be achieved in the real world or was it just a one-off to make a point?

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Haworth

I think that it can be achieved because don’t forget these people weren’t doing the major assessments at that point, they were just alleviating things.Ìý So, like the rehabilitation officers, for example, and the low vision professionals they weren’t doing their full assessments that they would do in a clinic or a house, they were actually giving the people ideas over the phone and finding out what their needs were at that time.Ìý So, for example, if somebody just can’t read and I know that’s simply a [indistinct words] he just can’t read but if somebody is just – in the concerns of everything, in the greater picture, if somebody’s just having problems reading at that time and then it can be fixed by a 2.5 x 3 magnifier then post it out, send out and that’s alleviated their issue at that point.Ìý So, that’s still letting them being able to do something and potentially stopping them going into mental health issues.

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White

But I think the point you’re really making is you did this because you knew a lot of professionals, you knew them all, you did a lot of networking, you used the phone rather than writing letters or even emails, that’s, presumably, what you’re saying could be done?

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Haworth

What it is for me and what works and what I’ve started to in my organisation is getting together with the different professionals.Ìý So, working with the rehabilitation officers, having forums, meeting them, just ringing them up once a week and saying – oh, how you doing, is there anything else we can do – things like that.Ìý It’s all about networking between the three sectors – the NHS, the secondary sector and the third sector.Ìý And only by working like that can you all work together to stop duplicating work and to actually giving people a better service, in my opinion.Ìý And it works when I’ve trialled it.

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White

So, as you’ve mentioned, rehab officers – I mean Trish, could you imagine this working where you are?

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Wilby

I think the realism is if you know everybody and it’s great and you have a team that’s big enough to do it but to do that and then the next day there’s somebody off on his leave or you’re short staffed.Ìý The theory is great, the practicality to sustain it, I think, might be quite difficult.Ìý The will would be there but I’m thinking reality to sustain that would be quite difficult.

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White

Well, you’ve absolutely anticipated the question I was going to put to Omar Mahroo.Ìý I mean you’re a busy ophthalmologist, we’re talking here about getting ophthalmologists, social workers, rehab officers, other professionals, ECLOs together – could it work?

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Mahroo

I completely agree that getting network – knowing who your ECLOs are, letting ophthalmologists who may be see different types of patients where CVIs aren’t so prevalent in their clinics, to still be in touch with their ECLOs, we have eight across our sites at Moorfields and we’re in touch with them.Ìý And I think that really helps with the delays.Ìý Like I said, the problem is getting the ophthalmologists to recognise that they should be discussing CVIs, if we’re working on them there’s some evidence that there has been a bit of an improvement there but then getting everything else joined up.Ìý Once that happens in our clinics, we often get the certification done within a couple of days, if the patient’s there on site but sometimes there can be delays.Ìý Sometimes it’s patients deciding, which is obviously – the psychology impact that affects people differently, so we don’t push it on everyone but otherwise the delays in actually certification, decisions made are quite small.

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White

Well, you’re all being quite clever in anticipating my next question because I was going to ask Danielle, I mean that sounds great because you had two years to wait but this is the reverse, this is everything happening in a great rush.Ìý Could you have coped with that?

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Smith

I think I’d have coped a bit better if it all happened straightaway, yeah, because for me it was the not knowing where to turn.Ìý I didn’t go out and do anything because I didn’t know what was out there for anybody who’d lost their sight.Ìý As soon as you finish with the consultant there was nothing, no help.Ìý I’d have accepted it a lot quicker and a lot more confident in myself if I’d had had it right at the beginning, rather than two years later down the line.

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White

Let me just finally go back to Luke.Ìý This is your idea, I know you’ve gone out talking to people about it.Ìý Is it something that you think could become the norm rather than what we seem to have at the moment?

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Haworth

I’d like to think that, yeah but I completely agree with Trish and Omar that it’s not always possible but I think if we aim for high, if we aim for a five-day pathway or a five-day support service, then if someone’s waiting two weeks then it’s still better than waiting for two years.

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White

Absolutely.Ìý Well, thanks to all of you for taking part in this discussion.Ìý Omar Mahroo, Trish Wilby, Danielle Smith and Luke Haworth.Ìý We do want to hear your own experiences – positive, negative or mixed.Ìý Did you get or are you getting the help you need?Ìý And just before we go, there’s something else we’d like your help with – experiences of renting.Ìý Tomorrow our consumer programme You and Yours is going to be looking at a case of someone who tells us they were refused accommodation because of their guide dog – has that happened to you?Ìý Let us know.Ìý You can email intouch@bbc.co.uk, leave a voicemail on 0161 8361338 or if you’ve learned the skill yet, go to our website because there’s more information there bbc.co.uk/intouch.

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From me, Peter White, producer Beth Hemmings, studio managers Philip Halliwell and Simon Highfield, goodbye.

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