In total 23 patients agreed to take part (6 male, 17 female). Mean age (standard deviation) was 65.6 years (9.1) with a range of 50 to 84 years. Disease duration was a mean (SD) of 19.6 years (12.2) and a range of 4 to 40 years. All but one requested a telephone interview. Seven healthcare professionals agreed to take part. These included four rheumatologists (3 male, 1 female), two rheumatology nurse specialists (both female) and one administrator (female). One member of staff who was heavily involved in the implementation of DA completed two interviews fifteen months apart to give a perspective on how things may have changed during the implementation period. Fifteen patients recalled having called the telephone helpline. The mean (SD) number of calls per respondent over twelve months was 1.3 (1.5) with a range of 0 to 6 calls, whilst seven respondents indicated they had not needed to use the system at all.
Four main themes were identified. These were: (1) building patient confidence and empowerment, (2) right place - right time, (3) safety and (4) everyday challenges of managing change.
Building patient confidence and empowerment
Attendance at an education session led by an experienced rheumatology nurse was the primary means for ensuring patients fully understood how the DA review system worked in practice. The number of patients attending each session varied between six and eight. During the session it was explained how the DA review system would operate and how appointments would be now scheduled by patients according to their needs, in addition to outlining how the telephone advice line would work. The attendees were then given the opportunity to ask questions about the delivery of a DA review system in practice.
Observations of the education sessions showed that initially patients appeared to be very sceptical of the DA system of follow-up with some people voicing their concerns that the change to the DA system of follow-up appeared to be a mechanism through which to discharge them from hospital waiting lists and shift provision of care back to GP. However, patients appeared to feel more reassured as the sessions progressed. These concerns were consistently voiced in all observed sessions and it appeared critical that the nurse delivering the education was well known to and trusted by all attendees. These observations were supported in the interviews:
“… I trust [nurse], I’ve known her for a long, long time and I trust her implicitly.” (R10).
“…I was very reluctant [to join DA]… I was a bit nervous really thinking Oh if I’m not going to get to see someone regularly…but then we went to the hospital [education session] and I felt much more reassured” (R14).
Patients on the whole also understood the rationale for the DA system:
“…so by being a direct access patient if I need anything when it goes wrong I know I can get help immediately which is at least a lot off my mind.” (R10).
Even though patients thought the education sessions were a very helpful way of explaining the shift from RC to DA review, some were still confused about how the advice line would operate and were still waiting for written instructions.
“… she promised to send out sort of explanatory notes about the whole system of direct access but I don’t know, I never got it, I’m still a bit mystified … I don’t really know what the difference is…” (R22).
The majority of patients welcomed the opportunity to self-manage their illness and reduce dependence on HCPs:
“…I do feel empowered by direct access because you have control of saying ‘ well actually I am not very well I need to see someone’ or ‘well, yeah, it’s a flare up and it will go down and yeah I can manage that and it’s so much better’. It is empowering.” (R10).
For some, the loss of regular monitoring at clinician-driven appointments was a concern whilst another patient appeared worried about continuity of care under DA. Her concerns surrounded the fact that deterioration might go unnoticed whereas a regular clinic would offer the opportunity to pick this up more quickly.
“I think everybody should have at least six monthly reviews…” (R6)
So whilst most patients were convinced during the sessions, especially by the presence of a trusted nurse, an underlying concern about being without support remained for a minority.
Right place - right time
Being able to access care when needed was the most important objective of DA. Under the traditional system of follow up substantial amounts of time appeared to be wasted. For example, patients were often called for a review when they were well, did not need medical attention and were kept waiting for over-running clinics.
“…I’ve got to catch 2 buses which takes about an hour and a half to see a consultant for about 5 minutes, which is my estimation is a complete waste of time unless there is something wrong with me” (R9).
Both patients and staff considered that more timely access to care was a positive impact of DA:
“…if you are in pain and you want to see a rheumatologist you’ve got to get an appointment and that could take two or three months but this system here within 10 days you get to see a rheumatologist and obviously that’s a lot better than having to wait 3 months if you are in pain” (R2).
All patients and staff indicated in the interviews that they supported a change to DA for this reason:
“Well basically I think when you’ve had a condition like this for so long I mean you tend to know your body better than anybody else and I mean sometimes you are going for check-ups and you know well the thing is you don’t really need a check-up you know you’re all right it’s sort of wasting time isn’t it somebody else could have that appointment but if you’re actually doing that yourself you know I decide yes that I need to see someone then you know I can do that.” (R20).
Four patients however, felt that a wait of up to ten days to see someone was too long and that:
“… the only concern I have is that you always have to leave a message and wait for them to ring back and I’m one of these people that once I’ve rung I want something doing immediately” (R23).
One patient expressed disappointment at the outcome of his telephone discussion with a rheumatology nurse who did not immediately offer an appointment with a consultant which had been expected.
“She said if you are still like this in a week’s time come back and you will see XXXX. But I mean in a week’s time you know the flare had gone down so what was the point of that?” (R1).
In this instance, although the patient was dissatisfied with the initial response from the helpline, his later comment that his flare had subsided within the week suggests that the actions of the rheumatology nurse when triaging his telephone call was reasonable.
Patient initiated systems of care have the potential for harm as well as benefit. The eligibility criteria for being suitable for DA follow-up were broad (adult, RA for at least 2 years, able to initiate phone contact) and both staff and patients raised concerns that it may not be suitable for everyone.
“Perhaps having a more consensual agreement as to who goes in and who doesn’t across the board would be helpful… you could say well all of these patients are stable-ish and have been coming for years so let’s put them all in here and see what happens…” (HCP3).
“..I don’t say it’s good for everyone because some people do get very confused about you know different things.” (R19)
Concerns were raised that some patients had not contacted the helpline and when attending the safety net review their health had obviously deteriorated. One member of staff suggested that age and social factors appeared to affect ability to utilise the service effectively:
“…the younger ones [patients] seem to drive it [DA] well… but I think for a group of patients we need to say ‘not yet’. I think we need to wait until we’ve really got past all the social issues acting on their wellbeing and thinking. I don’t think this should just be driven by disease” (HCP5).
As well as concerns that some might patients not have sufficient capability to participate, there is a related concern that others don’t see themselves as ‘candidates’ and would not call for help even in the face of significant symptoms.
“…I’ve had a bit of a flare up but its fading away so I am just sort of hanging on but [Lead Nurse] did say that after eighteen months they would call me anyway if I wasn’t in before that so I’m hanging on really” (R5).
The everyday challenges of managing change
The idea for the service development needed organisational ‘buy in’ before it could be implemented and it had been necessary to stress the potential costs savings and waiting list management with managers rather than improvements in patient-centred care.
“…one of the set high selling points for me to the wider business management team was about the resource saving… but the idea that I was going to be seeing less people because the way that the hospital access funds is by a tariff per visit… so getting people’s mind set away from… you’ve got to get revenue” (HCP1).
Implementing the redesign was led by a core team of clinicians and didn’t involve everyone, with information being fed to colleagues outside the main group on a piecemeal basis. One member of the team explained she was not part of the core group and the way the changes were initially presented to the wider team (clinicians and administrative staff) had not been ideal.
“…there were some meetings before it [DA] was set up…I wasn’t involved in all of them…so I had sort of an bit of an idea as to what it was all about” (HCP7).
This also caused operational difficulties as the needs of the DA system were not always made clear to new staff, including those booking appointments.
“… this [problems with clinic reviews] is the problem when the booking clerk changes because the girl before knew DA very well and the next one doesn’t… there needs to be someone down in the department who solely runs DA appointments… I think this [DA] needs to be a closed shop” (HCP5).
There did not appear to be a shared decision making process regarding the suitability of patients for DA and this resulted in a lack of consensus and confusion, such as one patient group that take biological therapies receiving a mix of regular appointments based on NICE guidelines as well as using the DA system.
The need to plan for the change in workloads to different members of the team needs to be considered as DA impacted on staff workloads to run education sessions, respond to contact via the telephone helpline, arrange urgent appointments and ensure medical notes are in the right place at the right time. In addition, as patients were now attending DA clinics in response to a disease flare clinicians spoke of their struggles to complete a full review within the allocated clinic time.
“…if it [the appointment] is booked at short notice then there’s an element of racing around to get the notes and make sure the nurse has seen them…and then get them to xx [off site]” (HCP 7).
“I’m getting more direct access patients and they come up with more active complex problems perhaps more than one problem. I am realising that a 15 minute routine follow-up slot perhaps isn’t long enough to address all the issues” (HCP4).
There is also a need to have systems in place to balance continuity of care, staff absences and, where required, the need for an appointment within ten days. In order to address these issues a number of changes were made to how this was managed. The consultants had agreed that when a colleague was absent and one of their patients requested a review, the patient would be told their consultant was away and there might be limited availability with another HCP, but no promise to meet the ten day timescale was given. The patient was told they would be contacted again if a clinic time was available. This deferment gave consultants the opportunity to read their medical notes and if the case was complex they would ask for the patient to be booked in to see their own consultant when he or she returned. However, if a case was considered urgent consultants did their best to accommodate them in their DA clinics. This slight change in service was also reflected in later education sessions.
“… as the education goes on I will say ‘all your consultants take a standard 2 week holiday and therefore, if, unfortunately you call during this time you may find that your appointment is just 1 or 2 days outside the 10 day timescale’” (HCP5).