Health professionals

The focus groups lasted a mean of 110 minutes, ranging from 99 to 121 minutes. The interviews lasted a mean of 48 minutes, ranging from 31 to 61 minutes. In total, 24 health professionals were recruited. This comprised eight optometrists, six ophthalmologists, two public health representatives, six NHS commissioners and two clinical eye care advisors to their local CCGs. Of these, 12 were women and 12 were men. Participants had a mean age of 39 years (range 31–64 years) and stated that they had been in their profession for a mean of 21 years (range 4–40 years). Although none had participated in shared care for nAMD, 11 participants had experience of shared care schemes for other conditions such as diabetic retinopathy screening and ocular hypertension monitoring. Table 27 shows participants’ professional background. Years in profession and location are not presented for the ‘other’ health professionals (i.e. those other than ophthalmologists and optometrists) to protect their anonymity given their unique roles. However, these participants’ locations were distributed evenly throughout England and they had been in their profession for an average of 20 years (range 8–37 years).

TABLE 27

Health professional participants’ background

Service users

The focus groups lasted a mean of 71 minutes, ranging from 65 to 90 minutes. Three focus groups were conducted with 23 participants in total, with seven or eight participants in each group. The sample consisted of 15 women (65%) and eight men (35%) who described themselves as white British. The sampling strategy intended to recruit individuals from a mix of ethnicities, but all those at the supporting groups who were willing to be contacted were white British. They had a mean age of 82 years (range 72–93 years). All had nAMD and attended the same eye hospital in a major city and were diagnosed an average of 5.9 years ago (range 6 months to 20 years). Nine participants had active nAMD in one eye (39%), nine were stable in one eye (39%), four people had active disease in both eyes (18%), and one person was stable in both eyes (4%). Eight participants had dry AMD in their other eye (35%). The partners of two participants (who were also their carers) joined the focus group but spoke very little; their comments were not included in the final analysis. Table 28 provides participants’ demographic and health-related details.

TABLE 28

Service user participants’ demographic and health-related details

Current clinic capacity: pushed to the limit

Many health professionals stated that the number of repeat visits for patients was rising exponentially, which was attributed to an increase in the number of patients who were being diagnosed with nAMD and to new government guidelines for treatment.

The numbers going through the system are higher, and they need treatment for longer.

Comm3

Hospital clinics were felt to be ‘pushed to their limit’ [Optom7, Ophthalm3] and the ophthalmologists felt frustrated that their time was mostly spent on stable patients who did not require treatment.

You are taking the potential time from the ones that actually need the care. There is a limit of work that you can do. I mean you can’t go home at 8 every day.

Ophthalm2

Both the health professionals and service users described how patients would often have to wait for long periods of time for their appointment because of how busy the eye hospital clinics were:

Well, quite honestly when you go to the eye hospital, it always seems to be packed out left, right and centre.

Harry

Sometimes we have to wait a long time, but you know it can’t be helped.

Henry

It’s just generally the issue of they have had to wait a long time [. . .] You’ve got to think also there are diabetics among there that have to regulate their meals, and they have their set routine in terms of their meals and health. It’s the same with everybody, but perhaps diabetics most, because it affects them straight away. I’ve known diabetics that have gone into a hypo [hypoglycaemia] because they were waiting around. Because they had a 9 ‘clock appointment and it got to 11. It’s just a real shame.

PH2

There was a sense that the current model would inevitably need to adapt to cope with this demand and agreement that optometrists monitoring in the community had the potential to reduce clinical workload.

It will help shift a lot of the workload out of the hospital environment where they are overrun with this and putting it into a more capable environment with local optometrists.

Optom6

[Monitoring in the community] will make less queues at the hospital. At the moment they’re choc à bloc with people.

Ruth

The optometrists, clinical advisors and commissioners also described how a shared care scheme represented a great opportunity to enhance optometrists’ professional roles by developing their skills.

It’s fantastic for the optometry profession, because it must give them much more exciting and interesting careers, and career progression, and variety within their work.

Comm3

Potential for a more patient-centred model

Most health professionals also felt that the current model of care was not appropriate for older patients with limited vision who had to regularly travel to the hospital.

The problem is that all the patients have got to go to the eye hospital all the time, which isn’t very patient-centric . . . It’s not very easy for people to get in once a month – which is obviously what Lucentis is about – for their assessment. Given that they are, almost by definition, elderly and with poor vision, it’s not an ideal centre for it.

Comm2

The service users found it stressful travelling to and from the hospital for care. Many stated that they were unable to drive because of their nAMD, which was described as a ‘massive blow’ to their independence (Pat). These service users reported difficulty seeing the bus numbers, and most needed to get multiple buses each way as there were no direct buses. Others were driven by family or friends, but described parking as ‘awful’ (Arthur).

It’s not just getting to the hospital. It’s all that time afterwards, if you’ve got to get the bus, it’s – in the winter, it’s even worse.

Ralph

One of the things that’s come out here is that everyone is, obviously, getting older. They’re stressed when they have to go out of the town because getting home when you’ve got . . .

Robert

Oh, it’s terrible.

Mandy

So if they have someone in the town who is an optician and deals with us, it’s only a short distance from home.

Robert

Monitoring in the community was described as a ‘wonderful’ idea (Elizabeth), particularly for those who lived further away from the hospital or older participants who had severe vision loss.

For me, living out of town in [small town], to get to an optician on the bus is easy, whereas it’s a day’s expedition to come into [city].

Tracey

Many rarely saw the same consultant or nurse at the hospital, and felt that staff were often impersonal as they were ‘so busy’. This was likened to ‘being on a conveyer belt’ (Pam).

If a doctor said, ‘Well, that’s alright’, that’s it. It’s reassurance. I think they’re trying to speed up time, and I know they’re very busy and they obviously look at the photographs and they can see everything, but for patients’ feel-good interest, I always like a doctor or someone to say, ‘That’s alright. You’re not doing too badly. Well, you’re in your eighties now.’ Just to talk to you properly.

George

I think one of the greatest things wrong in the eye hospital is they . . . they kick you out the door.

Arthur

In addition, most others felt that they did not receive enough information about the status of their condition.

Just be told what’s happening –

Harriett

The only criticism I would have is to try to find out how you’re doing and whether you’re getting worse or getting better, or stable, because they’re all so busy.

Ruth

These participants were therefore enthusiastic about the potential for continuity of care, which they hoped would enable them to build up a relationship with their optometrist.

I think one of the things, I think you’ll agree, has come to light this morning, is basically that many aspects of the eye hospital, it’s so impersonal. I think that probably a system like you’re suggesting would probably add a personal touch to it and a more one-on-one situation . . . That’s the big thing, seeing the same person. Like I said, the personal touch . . . The relationship would build up.

Edward

Perceptions of optometrists’ competency

The optometrists in the focus groups, who acknowledged that they had a special interest in nAMD, were very positive about the possibility of shared care and felt that their profession was more than capable of monitoring in the community. This was also echoed by the commissioners, clinical advisors and public health representatives.

They’re [optometrists] really incredible, impressive professionals, with just a huge amount of experience at looking at eyes.

Comm3

However, several health professionals (from mixed professions) commented that ophthalmologists would resist shared care as they were not convinced of optometrists’ competence.

I think it’s the misconception that optometrists won’t do as good a job as secondary care. So I think that’ll be the biggest barrier.

Comm4

This was considered to be problematic for shared care as there was uncertainty whether or not ophthalmologists would ever truly relinquish responsibility for patients.

I would not want to close the door on them, ever. I’d still want them to contact me if they noticed any change.

Ophthalm1

Honestly, I think that clinicians aren’t always very good at letting go [. . .] It will be an issue.

Comm3

There was hesitation among ophthalmologists about whether or not optometrists were capable of monitoring nAMD. The ophthalmologists referred to how they frequently received incorrect referrals from optometrists. Furthermore, they highlighted the ways in which nAMD differed to other eye diseases where shared care schemes existed.

When you work in ophthalmology for quite some time you see just the amount of work that comes to you from inappropriate referrals. Really they’re just doubling work up.

Ophthalm3

This is not like glaucoma where you notice pressure or you don’t feel OK and refer back to the hospital. This is something . . . it’s based on the scan and each patient is different. There’s only a few parameters for glaucoma, whereas here there are . . . it’s complex [. . .] So we can’t expect an optometrist to . . . [laughter].

Ophthalm5

The ophthalmologists felt that the hospital provided an environment where they had access to all previous scans and other colleagues’ expertise, which enabled them to confidently make a clinical judgement. They expressed uncertainty about whether or not optometrists would have these resources. Ultimately, owing to this perceived complexity of assessing the need for retreatment and the support and resources available in the hospital, the ophthalmologists felt that monitoring patients in the community would be a compromise.

So what we are trying to say is hospital care is the best [laughter].

Ophthalm6

Several ophthalmologists felt that patients would prefer to remain being monitored by a consultant at the hospital, whom they would inherently trust. In line with this, service users with active nAMD also tended to be apprehensive about the level of optometrist competence in the community, and commented that lengthy waiting times were secondary to receiving the best care for their condition.

If we put ourselves in their position what would we prefer to have? I’ll prefer to be seen by a doctor in a hospital.

Ophthalm1

So, you’ve got to have confidence in the person that is monitoring you [. . .] I feel that to rely on somebody that has been trained up to identify problems can’t really be as efficient as seeing an actual doctor who specialises in that subject, and because of that, I wouldn’t be happy going to an optician. It might take you longer. We have sat up there for hours, but the end result is well worth it.

Henry

The majority of service users described needing to be able to ‘have faith’ in their optometrist if they were to participate in shared care. Those whose optometrist had diagnosed their nAMD commented that this gave them a sense of confidence in their optometrist’s abilities.

I would trust my optician. He really seems to care. I would trust him. If my wet macular was stable, I’d be very happy to go to my optician because I’ve got confidence in him, because he detected it in the beginning.

Harriett

However, a few service users were apprehensive about shared care and did not wholly trust the idea of monitoring by an optometrist. Those who expressed this sentiment did not have faith in their optometrist because the optometrist had not recognised the condition initially

Personally I wouldn’t have faith in the optometrist. I would much prefer to stay with the hospital.

Henry

(Lack of) communication between optometrists and ophthalmologists

Overall, the health professionals described the relationship between optometry and ophthalmology as poor.

Collaboration optometry and ophthalmology? No way. It’s absolutely dreadful!’ [laughter]

Optom8

These participants described how ‘systems-based’ issues made communication between the two professions poor. This was described by all professions except the ophthalmologists. For instance, most of the optometrists described how it could be extremely difficult to relay information to ophthalmologists because of incompatible computer e-mail systems and variation in technology.

Our problem is we’ve got NHS.net in optometry and because everyone else, they’re all NHS.co.uk. So their end isn’t secure. We can do NHS.net to NHS.net, but we can’t do NHS.net to NHS.co.uk, which is what all hospitals give their consultants. It’s absolutely crazy.

Optom8

They’ve not embraced NHS.net at all.

Optom5

Some optometric practices don’t even have computers. Particularly in the [city] area where many of them are way behind. We actually had to buy them fax machines when this started to make it work. You’d expect most people had that sort of facility, but they didn’t. To make it work, we would do that. So I think standardisation of forms across our units, across the country, and making those forms readily available, and everybody knows that they’ve got to look for the red-topped form in the practice or whatever, could possibly aid this model of shared care.

Optom2

The other big issue is transfer. If you’re actually going to transfer the data, they are massive, massive, massive files. I was talking to an optometrist who has an OCT and sends scans to an ophthalmologist, and he literally has to do it overnight. Just for one patient, it takes so long.

Optom1

All of the optometrists also commented that technology had caused issues with their referrals to ophthalmologists in the past, in that they often got lost between the two professions. As a result, the optometrists stated that they would follow up each referral by calling the consultant to ensure it had been received or they sent referrals via multiple technology methods to ensure that one would reach the consultant.

It does happen that patients will wander back in 2 weeks later and say, ‘Oh, you told me I’d be seen within a couple of weeks. I haven’t heard a thing.’ Then we contact the hospital and we think, ‘OK, what’s happening?’.

Optom2

However, many participants (both health professionals and service users) explained that one of the key concerns of nAMD was the rapid progression of the disease if the condition became active. In particular, several service users described the devastating consequences of their vision deteriorating within days.

Last week I was all-seeing and driving and everything, and on Thursday I thought, ‘There’s something missing on that signpost’, and the glare was terrible. So then I couldn’t read the paper at lunchtime . . . To me, it’s been a disastrous week. I can no longer drive. I can no longer read. This is a week! To me, that’s a disaster. It’s very frightening.

Pat

Participants, particularly the ophthalmologists and service users, therefore expressed concerns about a potential delay between primary and secondary care if retreatment was required.

The problem is that the more steps you have in the system, the longer it takes. We don’t have the time.

Edward

The nature of the disease is such that it needs urgent attention. So it’s better if we see the patient [. . .] I can’t imagine going to the optometrist and him making a decision to refer the patient back, all that delay.

Ophthalm1

The health professionals emphasised that, in order for shared care to be delivered successfully, it would be essential that the two health-care professions were able to work collaboratively so that an efficient pathway could be developed.

I think they would like to make sure that there’s a seamless process between community and hospital, and that nothing drops through the cracks. So I think they would need to make sure that there’s a robust recall service, and that if there is an issue, that there’s a pathway back for the patient into secondary care. So those kinds of things, I think, would need to be ironed out before it goes ahead.

Comm2

The cost of shared care

A theme unique to the health professionals was the financial implications of implementing a shared care model. Both the optometrists and the ophthalmologists believed that financial considerations should be secondary to the care of the patients, although the other health professionals described how a harsh reality of health care meant that shared care would not be commissioned unless it ‘got the most out of the NHS pound’ (PH2).

I think you have to possibly take out the finance issues. How you buy something should be secondary to what the patient needs.

Optom4

You’ve got to show the CCGs that you’re saving money over sending them into the hospital. Because otherwise, they’re just not going to commission it.

PH1

The commissioner participants undertook several roles professionally and were often optometrists or GPs alongside this position. The multiple perspectives from a commissioning and clinical point of view appeared to conflict in terms of patient outcomes and financial efficiency when contemplating nAMD care.

Patients would like it [being monitored in the community] because it’s much closer to home, they don’t have to go to hospital. They don’t have to sit and queue and wait in pain, park and all that sort of stuff that patients usually tell you . . . From a commissioner’s perspective. . . in terms of saving and shifting costs across the health system for eye care services, it certainly doesn’t achieve that.

Comm4

The health professionals were divided about whether or not monitoring in the community would represent a more cost-efficient model. For instance, some perceived that NHS costs of managing sight loss could ultimately decrease.

So if you could use the monitoring to stop the wet AMD getting worse, so that it’s kind of preventative, then you would be addressing the public health indicator of dropping those numbers of people registered with AMD sight loss. [. . .] Yes, that would be the biggest advantage that I would see of it.

PH2

Many also considered that there may be an opportunity to save money with a differential fee for optometrists and ophthalmologists. Conversely, the ophthalmologists stated that the money saved from following up with patients with nAMD could be set towards resources to improve secondary care resources, rather than being ‘lost’ to the community (Ophthalm3).

It would be a cost-efficient option for the commissioners because we would be paying something like £60 for an optometrist to measure the patient’s visual acuity, rather than £100 and whatever it is for a consultant outpatient episode.

Comm4

If the optometrist where I am gets compensated, that pot of money comes from the resources from the hospital and we’re struggling as it is. We’re diverting resources to somebody else who’s not doing as much work as we are doing in the hospital, just doesn’t make sense.

Ophthalm3

The ophthalmologists stated that they took around 15 minutes to see a patient and determine the need for retreatment, while the optometrists’ estimates varied at 20, 30 or 40 minutes. As the requirements to determine reactivation were listed (including a clinical examination, administration of tropicamide drops and use of an OCT), the optometrists concluded the estimate of up to 40 minutes was more realistic to make a clinical decision and explain the results to the patient.

It has to be realistic so you can practise and sustain it.

Optom3

I’ll allow 30 and probably spend 40 [. . .] But once you’ve got an OCT sitting there and you start looking at it, and you really want to explain it to the patient and they say, ‘Oh, thank you. No one ever tells me anything like that at the hospital. It makes you feel so good at the end. You’ve actually told the patient what’s really wrong and, ‘Rest assured my dear, it’s not getting any worse, so we don’t need to send you back’. ‘Oh, thank you!’ It probably would take me 40 minutes.

Optom8

Several commissioners and one clinical advisor therefore highlighted a potential conflict between practices’ clinical and commercial interests and stated that optometrists would need to be paid a sufficient amount to ensure that shared care was economically possible.

If the current business model for eye care is that funding comes from selling glasses, then if you fill your clinic appointments up with OCTs which will be a lovely service for patients, but if the only thing that’s happening is that you are breaking even with doing an OCT, your practice isn’t going to survive.

Comm1

There was also agreement that an OCT, although considered essential for monitoring nAMD, is an expensive piece of kit that not all practices can invest in. The clinical advisors and public health representatives felt that CCGs should provide OCTs, although most of the commissioners and the ophthalmologists felt it should be self-funded to demonstrate a level of commitment to monitoring in the community or that those practices which already had an OCT would represent a more enthusiastic, clinically orientated team.

Well, it’s on the optometrists, really. Whether they’ve got the kit or whether they will want to invest in one. I think what it will be is that you’ve have a small group of practices within a particular area, who will show keenness. [. . .] They will be the more cutting edge practices.

Comm6

I think CCGs should pay for that [an OCT], the NHS. I don’t think it should be the optometrist.

PH2

A further financial issue was whether or not ophthalmologists would repeat tests, owing to difficulty relinquishing responsibility or not trusting an optometrist’s judgement.

If you’re doing injecting from a message that you’ve got from the community, then actually if something was to go wrong, you can’t just say, ‘I did it because the optician outside told me to do it.’ Do you know what I mean? [. . .] For their peace of mind.

CA1

You’d have to attend another OCT in the hospital, look at the scans and then we have to take everything, yes, you may need another angiogram, just to be certain.

Ophthalm1

Consequently, a main concern of the commissioners was that the CCGs might be charged for repeated testing.

‘From a commissioner’s point of view, we would want to make sure then we would only be being charged for that element of it, and they wouldn’t go on and repeat all the tests again.

Comm1

The importance of specialist training

The health professionals spent a considerable amount of time addressing how they felt training should be delivered, in terms of which method was most effective for learning and ensuring training was delivered in a way to reassure ophthalmologists that optometrists were being trained to a high standard.

I think the training needs to be very carefully designed.

PH2

The ophthalmologists have to believe in the competence of the optometrist. It’s important that they have belief in the quality of the accreditation.

Optom4

Virtual training was deemed appropriate for providing a ‘foundation’ level of knowledge, although most felt that this alone would not be sufficient to train the optometrists. In particular, the ophthalmologists were unconvinced by the applicability of a virtual trial.

I think it complements training, but I don’t think it should be the sole course of training. I think you still need a bit of hands-on.

Comm1

I’m sure in your studies you will find 100% virtual case studies that you give, that you will find good correlation between what the ophthalmologist would say and what the optician would say in a virtual case. You can’t just say ‘Yes, the optom [optometrist] has 100% exactly the same as the ophthalmologist, which says that now they are just as good’.

Ophthalm3

Clinical experience, whereby optometrists would gain experience of monitoring nAMD patients in a hospital setting, was viewed as an ‘essential’ component of training.

I think they need to come and see the real patient. There’s no point on sitting on the MediSoft or whatever and clicking boxes and thinking they know it all. Real life is not like that. I mean there are the OCT scans like that, sometimes they can be very devious and very challenging and very confusing . . .

Ophthalm2

The majority of participants felt that having ophthalmologists supervising this training would provide assurance of optometrists’ competence and enable greater collaboration between the two professions. However, they acknowledged that this would be time-consuming.

I would suggest that they [optometrists] would spend a certain amount of time in a consultant clinic. Most services will have a specialist clinic for macular degeneration, so they would maybe spend a session a week, or something, in such a clinic for 6 months, just getting familiar with the treatments and the monitoring, etc. Also that will help the consultants’ gain a bit of confidence in the optom [optometrist] as well. So it’s a working partnership going on there.

Comm2

I think they would be involved if they had an element of control over it. If they’d done the training and if they knew who they were sending the patients out to and they knew what protocols were being followed, the service spec. You don’t get these things to work unless you’ve got clinical buy in. You just don’t. You can set up all you want, but you’ve got to get the clinicians involved.

Optom5

The hospital departments are caving in and creaking under the weight . . . so getting a consultant to be doing local training can be difficult.

CA2