Participant characteristics
Through the process described above, eight main factors were identified. Five factors were modifiable, related to service and staff interactions:
practice communication with screening services;
contacting patients pre- and post-screening;
integration of retinopathy screening with other diabetes care;
focusing on the newly diagnosed; and
a perception among practice staff that there was a hard core of patients who would not attend screening unless they experienced symptoms.
Three factors consisted of non-modifiable challenges related to practice location. They were recognised by existing literature but confirmed in this study:
A summary of these factors related to practices is reproduced in Figure 2.
Figure 2. Factors related to screening uptake.
Modifiable factors
Modifiable factors were linked to communication between practice staff, screeners, and patients. The greatest barriers were inflexible or incompatible administrative systems, screeners being isolated from the everyday work of the GP practice that was the focus of the uptake standard, and perceptions of defeat in relation to patients who missed many practice appointments.
1. Communication with screening services
In all but the three highest performing practices, practice staff and screeners identified communication issues between practices and screening services. Centrally allocated appointments counteracted their attempts to bring patients in, especially if IT systems or administrators were perceived as inflexible. One screener outlined the pros and cons of the current system:
‘Some of the practices ... just hadn’t got any sort of system at all. So a centralised system is a good thing. But then on the other hand you will come to some practices that are really organised and they know their patients ... “oh, hang on, they’re married, so if you put them together they’ll both come in together”. And they can ... we just can’t ... with 30 000 patients you can’t organise things like that.’
(Screener, Programme area 1)
Good communication on the day led to practice staff sharing their knowledge of their patients. Several screeners said that one motivated member of staff could make a real difference, for example, by contacting patients to fill vacant appointments. Another difficulty was that practices needed to allocate a room for screeners and their mobile equipment. This arrangement was seen as superior to a van in the practice car park, but led to other practice staff feeling crowded out and screeners working in isolation if practice staff were not involved, for example, by preparing patients for screening:
‘Someone had let me in [in] the morning ... I was just finished with my second patient, dilating them, and I decided to check my mobile phone and I had a missed call from the office. So I rang my admin manager and she said “I hope you’re okay, I’ve just had a phone call from the practice and they say you haven’t arrived to do your clinic”.’
(Screener, Programme area 2)
2. Contacting and motivating patients
Practice staff often described phoning patients, either in advance to remind them of their screening appointment or after they did not attend; they would then attempt to slot them in later that same week or at a central catch-up clinic. Practices with a high uptake did not see the need as their patients were ‘good at coming in’ without prompting. In practices with a large number of patients from South Asian backgrounds where members of staff spoke the same language, a GP or practice manager led a team effort to contact patients. However, this was seen as least helpful where appointments were out of the practice’s control:
‘What I try to do is get the [receptionists] to ring the patients the day before to speak to them in Punjabi. The problem you’ve got then is if the patient says “well I can come at 11 instead of 9”, they can’t say yes.
(Practice manager, Practice 6)
One practice in the programme area that used optometrists contacted patients who did not make an appointment, motivated by QOF targets:
‘So in the first 6–8 months of the year we sort of let them get on with it and when we see them we encourage them gently. When it comes to January, February, March time we can see our data and we see that we need to work harder on this, so we’re actively ringing them. [Nurse] does a lot of ringing and she will ring and say “can I speak to this person? Have you been for screening yet? Why not?” And I get involved too and if it’s getting to the last few weeks [before QOF census date] we all tend to chip in.’
(GP, Practice 8)
However, one optometrist said they would be best placed to remind patients but could not do this as screening patients were not registered with them:
‘If it’s a patient who is our patient, i.e. they normally attend for sight test, we make sure they come; we will phone them ... It is the ones who are for screening only, because we’re not allowed to send them reminders ... we all sit there praying that they will have a screening somewhere, every year.’
(Screener/optometrist, Programme area 3)
3. Integrating screening with routine care
Routine diabetes care provided opportunities to encourage patients to attend. Staff reminded patients that their screening appointment would be due soon and emphasised the importance of being screened. In Practice 9, receptionists reminded patients who picked up their repeat prescriptions. During screening appointments, nurses who were preparing patients would also pick up on other problems such as elevated blood pressure, thus improving continuity of care. The highest performing practice combined screening with the flu jab:
‘They have to have eye drops put into their eyes and so they usually have a nurse available so that they can have the flu injection and their eye drops put in at the same time, it’s like a conveyor belt really. Then they go and see the man who does the eye inspection.’
(Practice manager, Practice 1)
Screeners again emphasised that practice staff who were aware of the importance of screening and communicated this to their patients could make a difference. However, integrating screening and routine care became problematic in one practice as the nurse felt that involvement in screening took too much of their resources:
‘[Screening] takes up virtually an entire week of my clinical time, which is difficult because I do have other things to be doing than reading people’s eye charts ... the people coming to do the screening should bring somebody with them to do [acuity tests] and just do it completely as a unit and not be part of the day-to-day surgeries.’
(Practice nurse, Practice 6)
4. Focusing on the newly diagnosed
Most practices saw integrating people newly diagnosed with diabetes into the screening programme as important. Practice administrators aimed to add their patients to the DESP lists as soon as possible by letter or fax. Systematic checks of the lists before the annual screening appointment or at the annual QOF audit time were used as a backstop. However, patients could fall through the net:
‘I know several people who say, oh they’ve never been screened before and you say, “can you tell me how long you’ve known about your diabetes?”. And they say “oh a couple of years”. And your heart sinks because sometimes someone has had diabetes for a while before they’re even diagnosed ... so I think that in a way, if we had a better relationship or close relationship with a practice, they perhaps could pick that up.’
(Screener, Programme area 2)
GPs and practice nurses also talked about the need to educate newly diagnosed patients to emphasise the importance of screening and overcome possible anxieties.
5. Staff perceptions of non-attenders
In most practices staff would describe a hard core of ‘difficult to engage’ patients, who would only attend when they began to have symptoms. Patients who did not attend screening were also said to not attend other routine appointments, or to be generally uninterested in their diabetes:
‘Normally there’s this hard core of patients who unless there’s something they need to see a doctor about ... I’ve sat down with the practice nurse and she said “well they won’t turn up, they won’t turn up, they won’t turn up, because they don’t attend for any of their reviews, at all”.’
(Practice manager, Practice 4)
While there was a real sense of frustration with these patients, a perception that some patients are unreachable might lead to staff giving up on trying to motivate them to attend.16 However, in three practices (two of which had a high uptake) staff would focus on the practical reasons where people did not attend:
‘I think a lot of [non-attenders] are maybe housebound or workers who just don’t see that diabetes is that much of a problem ... The young chap who was working ... we’ve referred him back to the hospital because his insulin needs sorting out. But the [housebound] older lady who I’m thinking of, I’ve sent I don’t know how many letters and she just …’
(Practice manager, Practice 3)
Non-modifiable factors
Population-level factors in the practice’s catchment area, especially deprivation, are recognised as influencing screening uptake. How screening is organised locally, for example the use of high-street optometrists or catch-up clinics, may also impact on uptake.
6. Deprivation
Practices were purposively selected to include deprived areas as this had been shown to make a difference. Two practices situated in locations that were among the 5% most deprived in England had the lowest uptake, but this may have been compounded by a substantial minority ethnic population in the area. For other practices, the link to deprivation was less clear, with the three practices reaching the 80% DESP quality standard located in a mix of more or less deprived areas.
7. Language and ethnicity
Three practices with a high proportion of patients from minority ethnic backgrounds had additional difficulties with screening uptake. One recurring issue was language as written materials sent by the screening programme were in English only. Two South Asian patients said that while they could read the invitation and leaflet, they could imagine difficulties for patients from their mothers’ generation. Practices could partly overcome the language barrier as members of staff spoke the same language as their patients, but often there was a multiplicity of languages spoken in practice areas:
‘We have a mixture of sort of Bengali patients, Punjabi speaking patients. We have a few Somali and Vietnamese type patients ... we’ve got big families with lots and lots of younger children, a lot of families living together, and then we do have obviously the elderly population as well.’
(GP, Practice 9)
Extended families living together as described above could also present practical difficulties: the practice manager in Practice 8 worried about letters going to the wrong patient. In another practice in a largely Sikh area, appointments made in alphabetical order proved impractical:
‘Most of the females are Kaur and most of the males are Singhs. So you will guarantee that the Mrs will turn up and the husband will be with her, and it’s silly for us to then have to send them away because he’s way down on day 3 and she’s on day 2.’
(Practice manager, Practice 6)
The annual screening cycle could lead to some minority ethnic patients falling through the net as they went away to their country of origin for months at a time:
‘People go away ... to the Caribbean, Africa, Asia, Pakistan, India ... You find out in retrospect where they’ve been, and because they’re away they’re not going to get their screening done.’
(GP, Practice 8)
8. Transport and access
Transport was the largest single problematic issue for the two rural practices where public transport was inadequate:
‘In places like this, you know, I mean we don’t have buses that go round the villages and bring people in ... If someone has to have a taxi from [nearby village] to here it’s £30 ... the taxi would wait and then they’d take them home again.’
(Practice manager, Practice 4)
Patients who lived within easy walking/bus distance from the practice and those driven by a spouse or relative were generally satisfied, whereas others found getting home difficult as their vision was still very blurred by the mydriasis drops.
Practice staff and screeners said that patients frequently ignored warnings not to drive, and a few patients admitted having driven home from screening:
‘And then afterwards your eyes are ... you’ve got big pupils and light, oh it’s awful, that’s the thing, you know, you can’t drive home obviously. Um, I know I had it done just before Christmas once and the Christmas decorations were [laughs] as you’re driving down the street you’ve got all these big lights coming at you [laughs] so you have to sort of look down and not look at them.’
(Patient, Practice 2)
In the programme area where patients could make their own appointments with high-street optometrists, there were problems with access as participating optometrists in areas with a high prevalence of diabetes tended to have long waiting lists:
‘ [Optometrist] said, it was 3 months, there’s no appointments at all ... because that’s also the nearest one, I said “it’s okay, I’ll wait for three months”. The following year again the same thing ... But the third time ... I chose the one in [different area] and straight away she said “I can do it in a couple of hours”. “Isn’t there a waiting list?” She said “no”.’
(Patient, practice 9)
Impact of factors in combination on individual practices
No single factor was uniquely represented in practices with high or low uptake rates; however, practices began to struggle when several major barriers came together. For deprived areas, diversity of ethnic backgrounds and languages added to the challenge; for more affluent rural areas, transport was the main barrier. All practices adopted strategies to improve attendance; this was often led by one proactive member of staff who then motivated others to work as a team. In the best performing practices, this strategy worked well. The three practices in the middle struggled as communication with screening teams was fragmented and transport was difficult for patients. In the lowest three practices staff battled against the odds, unable to achieve higher uptake rates.
