UK Keratoconus Self-Help and Support Association

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Emotional support – Amanda Hawkins RNIB

I’m the senior manager for the emotional support service at RNIB, which covers all sight conditions. A lot of people don’t know we exist because it is the last thing that most tend to think about when people are adapting to a sight condition. From my point of view it’s the first thing we should be thinking about! Often the impact when people are given a diagnosis is not a physical one, it’s an emotional one. What I’d like to do today is to just give you an oversight of what we’re doing in the sector to address the emotional support that’s needed, talk a little bit about the RNIB survey and then I’m hoping that we’ll have a lot of time at the end to talk about what the particular issues are for your condition, feedback that I can take back so that you’re represented in that more global service.

A little bit about me – I don’t have a sight condition or a history of working with sight conditions. My background is working with children and young people and I’ve got four children myself. I thought I needed to stop working with kids because I was working with children all day and forgetting about my own children when I got home. So I made a big jump into adult based services. When I went for my interview at RNIB I thought that surely when you’re diagnosed with a life changing condition, you get an automatic referral for psychological support. I couldn’t have been more wrong. There’s almost no one interested in the psychological impact.

My specialism is counselling and we needed to think about what it is we should be offering. There are other people giving emotional support. Eye Clinic Liaison Officers (ECLOS) are based in hospitals and give support when people are given a diagnosis. It’s very patchy around the country and doesn’t happen everywhere, but where they are in place they’re very good. We also needed to think about what blind and partially sighted people wanted. Did they want tea and sympathy or was there room for something much more structured? We didn’t really know.

So why do people need emotional support? I found this quite startling fact. Of visually impaired older people, 13.5% were depressed compared to 4.6% of those with good vision - quite a huge jump. So if you have a sight condition and are getting older, you are quite likely to become depressed. 70% of newly diagnosed people wanted to talk to someone, but only 19% had access to that. RNIB have member forums and going round the country and talking to our members in my first year we were asking, of all the range of services that RNIB provides, what is the one you most need. And the answer was the emotional support service. We’re a very small part of the RNIB budget, but the need is huge.

We did a long term study in two eye clinics – one in London and one in Newcastle. And some of the quotes that I’ll give you today come from that study. Someone newly diagnosed – “I do feel like it’s a temporary thing, that won’t be there for ever. I can’t get my head round it, it’s not real, it’s a nightmare. You cling on to a thread of hope and tell yourself it will go away one day and it doesn’t.” Now that’s about a condition that’s different from KC, but it’s an emotive statement and gives the massive impact there can be.

A few years ago I was diagnosed with cancer, which I’ve now fully recovered from. But at my diagnosis I was offered counselling. People who are diagnosed with sight conditions who have a major adaptation to make are never offered anything. Quite often the attitude is, go away, we don’t need to see you again, there is nothing more we can do for you.

The other thing we had to prove was how does counselling help. So we collected data from those 2 pilot sites. What we found is that with some kind of emotional support, people’s well being improved, they reported fewer problems in their lives, they reported functioning better, fewer reports of suicidal thoughts. So we had the evidence, which was very important.

Another quote – “I’m trying to stay calm, to take a step back and take a deep breath. That’s what the lady at the counselling service helped to do. I can still get around, but differently. I might not like it, but I can still do it.” This was somebody who’d had some counselling. Counselling doesn’t change anything physically, but our perceptions of the way we engage with things changes.

So we found there was a problem with understanding of emotional support and a problem with funding it. We started developing a framework, mapping out what successes there were from emotional support by ECLOs, the helplines that charities run, that first point at diagnosis where people are looking for more information and wanting to talk to someone about their condition. And for some people that’s enough, that sense of belonging to a community and being able to talk about it is great. But for some people that’s not enough and that’s where my service comes in with structured counselling intervention that you can engage in and then leave when the problems have passed.

What else do we need to do? There is a lack of counsellors. What our clients tell us is that what’s important is not just the counselling but the knowledge of the sight loss condition. It’s not the same if you’re talking to any counsellor – it’s the combination of the two. The other issue we’ve got is that a lot of people when they start feeling down go to their GP. But the GP is not relating it to the fact that they’ve got a sight condition. Or they go to the low vision clinic and the people there are just picking up that the person is depressed. There is a need for recognition that having a serious sight condition can lead to periods of depression. As a community we need to normalise counselling.

Just to tell you a bit about our service – we offer a telephone service which you can come into by going through the RNIB Helpline. We’ll do an assessment and then offer 6 to 8 sessions with a counsellor who is trained in all the sight loss conditions. Last year we helped around 540 people with around 3600 counselling sessions, but we still have waiting lists. We have sighted counsellors but also counsellors with a range of eye conditions, so their experience helps. We do 1 to 1 work but we also do group work. In the same way as you today of got a lot out of talking to each other, we recognise that sometimes being in a group is much easier than one to one.

That’s all I wanted to say, but I’d like your comments on what you’ve heard today. Does it meet your needs and are there things you’d like to flag up for your particular condition for me to take back?

Q I’ve just had a cataract operation and am halfway between seeing properly.
Before the operation, I couldn’t enjoy anything, go anywhere, because it was on my mind, was the operation going to work out.

A Thank you for sharing that example of how the emotional impact can be on your wider life. The focus is often on your condition, but we need to acknowledge the impact on your life.

Q Two comments and a question if I may. One of the things that the KC Group in its online forum has been absolutely invaluable for is that at times when we get so frustrated with people just not understanding what we’re feeling. You can let off steam to people who understand exactly what we mean instead of explaining for half and hour and having someone still say ‘why don’t you wear glasses then?’ Having had a graft operation go wrong, it meant so much just being able to sit down and type it all and having people who were sympathetic. I think the other emotional impact is just how tired it makes you and how much longer it takes you to do everything. If you’re reading and holding it at the end of your nose and reading a word at a time, it takes you twice as long and it makes you so tired. Little things like it takes 5 minutes to get the microwave plate aligned properly so you don’t get hot porridge everywhere.

The question is the other side of this. Do you ever come across people who have an operation and suddenly find their eyesight has changed for the better, from needing to things at the end of your nose you’re suddenly longsighted? You put contact lenses in for the first time after a graft and you see everything on the trees and people can’t see why that can be a reverse problem.

A We have actually. One of my counsellors has had that very experience and found it difficult to adjust to not having such profound sight loss and she found a loss of identity because she’d been part of a community and now she wasn’t. So who was she then? So that was an equal adjustment to make.
The other point I wanted to pick up on was the tiredness you mentioned. A lot of people who come into our service, when things are going well they cope really well, but when something goes wrong – maybe there’s a bereavement or a change in the sight condition – the fact that life is just so difficult because they’ve got this extra effort of getting through the day, that’s when it can become too much. And people end up just not coping. So just to acknowledge that most of the time it can be fine but sometimes it’s not.

Q I actually asked before the graft whether there was any help in adjusting to having better vision and they looked at me as if I was crazy. The professionals can understand if you push them that people losing their sight might need some support. But if you suddenly get 6/6 vision, you ought to be over the moon. Post graft I can’t tolerate the lens more than a couple of hours at a time. But when I have got it in and can see everything on the tree, I can’t get my head around it, it just makes me feel giddy.

A I think sometimes what it also does is make you realise what you have lost when you weren’t seeing very well and suddenly it’s there again.

We work with everybody, carers as well, because it can be tiring for them, they have their own adaptation to do, so we work with families and children as well. We used to work only with those 18 and above, but we suddenly realised that children who are diagnosed with a condition that may trigger later on in life live with fear and with the feeling of being different at a phase in their life when they want to be just like everybody else and there’s a massive emotional impact about that. So we’ve started working with children and young people. And that’s been really useful because what we’re not seeing is those people that come through in their 30’s with all these big issues that have backed up because they’ve not dealt with them earlier.

Optelec representative I’d like to just touch on a couple of things. A lady was talking about dealing with changes before and after the operation. What we’re dealing with here is change and the older we get obviously the more difficult we find it to cope with change, so it’s the psychology of dealing with that change. We have the same when dealing with out customers who learning reading in Braille. They’re doing their reading in a different way and it’s the usual thing that you’re successful if you want to badly enough.

The other thing is I’d like just to amplify the need for this kind of emotional service. I’ve been involved in this technology for the years and ten years ago what we regularly used to get from the people we showed our equipment to was p why didn’t they tell me about this at the hospital? And I get this right up to last week, it still goes on. It’s one of the easy things to cut at the hospital, whether it’s a volunteer or member of staff. I know in some cases it’s now contracted out to AFBP, but as you say it’s patchy. But it’s a very important service. The consultant says sorry, you’ve got AMD or glaucoma and there’s nothing we can do for you and people go out of the door and are cut adrift, because they don’t know what to do or where to go. But there is another world out there, not only with our technology, but with the services of the blind societies, the RNIB and the whole infrastructure of that.

Q A topic you’ve covered, but with a slightly different slant on it – do you see within RNIB the need for a change in the way professionals are dealing with us? Because they are somewhat stuck in the psychological climate of the 1950s and 60s where it’s stiff upper lip and you just get on with it. I think the sea change that has occurred in the way we deal with mental health in the past ten or even twenty years has left them bystanders of it. So do you think you need to work with the professionals and do you know if there’s anything ongoing at the moment?

A Yes, I do see a need to train professionals. One of the things we hear in the emotional support service is this phrase ‘I’m just a pair of eyeballs on lolly sticks, that’s who I was to my ophthalmologist’. We’ve got to have that debate with them, we need to find that evidence to say to them ‘this is how you make me feel.’ I think they need to address the way they work because I think they work in a really detached way. You are just eyeballs because that’s what they focus on, that’s their specialism. If they engage with the person, can they do what they need to do, and sometimes that’s quite hard. So I do think we need to get in there earlier, in the training, as we have with GPs. It would be fantastic do develop a training course for ophthalmologists when they’re doing their early training rotations. To get them to come to a group like this, where you’re actually giving them feedback about how you’re treated and then being able to take that on board. That’s something RNIB might fund in the future, perhaps get the different eye conditions together. But we do hear it again and again and as far as I’m aware there is no sea change.

Q I just wanted to talk about my personal experience. You get confusing messages from doctors, some have told me I should have a graft, then another doctor would say I want to keep you off the operating table, once you have a graft it can’t be undone. So then you’re in a dilemma – once you do it, if it doesn’t take where does that leave you? Another thing is emotionally, sometimes it’s hard to explain to people that there’s a problem with your eye because they don’t understand. Sometimes when you’re out, people will say did you see that, and you say yes, but you didn’t really see it.

A when I was thinking about coming here today, I was thinking about what’s particular about your condition. The condition can be slow to the point where you do need the operation, so you have to live with that fear for longer. It’s like a hostage situation where someone’s saying one day we might shoot you and you end up saying, then shoot me! It’s like that living with a slow burning condition where things could change, so the emotional impact can sometimes be greater because it’s less tangible. If you have a stroke, it’s traumatic, but it’s happened so you get on with dealing with it. So there’s no hierarchy here because you live longer with that fear, will I have to make that decision, when will I know it’s the right time to take that decision to go on the operating table? And I’m sure you all know people in your community where the graft hasn’t gone well. So you’ve got that there as well as the good support. Do the doctors give you anywhere to talk, do they say you need to think about this, you need to talk about it?

Q Well, different doctors will say different things. The ones who are for it will say have it, think about it, the ones that want to keep you off the table say if you eyes stay like this… but then how long is it going to be?

A The important thing is that it’s your decision and your life. And I think sometimes the interaction with the medical field is, they’re the experts, the gods. So we say, tell me what to do. But actually they can’t tell us because it’s the impact on our lives, so it’s talking through what would be the right thing for me. And it might take two weeks, or it might take a year to make that decision.

Q Another thing – in the daytime my vision’s pretty good, but at night time it gets a bit scary when it’s dark and there’s groups of people. If your lenses are out you wouldn’t recognise your own face in a mirror. So personally I become a bit more enclosed and want to be in my house because I feel safe there. Night driving as well – unless I know the roads, I can’t do it because I can’t really see the road signs. And then I’m thinking what’s going to happen in ten years time? I’ve got a young daughter of 14 and I should be protecting her, but she’s looking after me. Even things like cleaning, you’ve done it and think it’s clean and someone else comes in and says it’s not!

Q With our condition, we have good eye days and bad eye days. We often have quite short term periods of need, as well as maybe a chronic sense of depression. Is it simply a matter of picking up the phone to speak to someone or do we have to be referred?

A You don’t have to be referred – you just have to have a recognised sight condition. There’s nothing about how bad or good it is. You go through the RNIB helpline and ask to be put through to the emotional support person and they’ll then take the information and make a referral.

Q So it’s as easy as that?

A Yes, anyone can access it, including partners, parents, children – whoever is affected.

Q Your strapline is ‘supporting blind and partially sighted people’. I see the letters RNIB (and I’m sure others are the same) and think – well, I’m not blind so why would I contact RNIB. There must be people who are blind who need your service and I’m getting on with things, so why would I call you guys? So my reflection is that I’m glad you’re here today, because now I’m aware you do this kind of stuff. I was blissfully unaware that there are these sorts of services and that you were there for us all those years. I would advocate it to people that I meet from now on. My family sometimes say RNIB, that’s your lot and I say no, but it actually is. So sometimes it’s a question of getting past that pride thing and saying sometimes I actually do need to speak to somebody.

A Yes, I’ve been to meetings with RNIB members where there are people who were born blind and those that have had sight loss later, and they are two different communities. When you talk about sight loss, the first group say, I’ve never had sight so how can I have lost it? So because we call ourselves the major sight loss charity, they don’t see themselves as part of RNIB. So what do we do about that name? It’s an identity. We have this debate every day.

Q We had exactly that same point this morning with people needing help with employment and saying but why would I go to Action for Blind People?

Q I’ve had a graft but unfortunately it hasn’t worked well. I can’t drive any more. I really need counselling. I know everyone’s got long waiting lists, but I’m still waiting for someone to get back to me from the RNIB Emotional Support service. When you lose your independence and your husband has to take you everywhere, you walk into a cupboard and people thing you’ve had too much to drink… So someone has given me their cornea and it hasn’t worked, so do I give up?

A We try to keep the wait to around 2/3 weeks.

Q It’s been longer than that.

A It shouldn’t be. But that’s one of the reasons we don’t go public facing. Our fear is, though it’s an uncomfortable one, that if people could ring us on a direct line then sometimes we’d just be clogged. So it’s trying to balance it and trying to help people as quickly as we can. We never let it go longer than five weeks. So phone again and chase it up. But I think you’ve just illustrated in this room today why we need a counselling service. And it is more than just a cup of tea and some sympathy because sometimes the way we can move on and adapt is to tell the same story again and again and again. And we don’t like doing that with our family or our friends – they get bored with it and we want to maintain those relationships. So I hope I’ve told you today there is a place where you can tell that story. So we want to work with you until you get to that place where you can say – it isn’t brilliant, but I can move forward now, I’ve got my direction.

Q I think it’s been really fascinating to hear about your service with people who have an understanding of the eye condition. So thank you.

A Yes, our clients say it is that combination of the two – it’s not just counselling on it’s own, it’s the specialist knowledge of the conditions.