Diaries and participant master list.

Over a 4-month period, RSWs individually completed daily electronic diaries in Microsoft Excel. Activities were selected from a pre-determined list and the time spent (in minutes) was noted. This list was co-developed with RSWs during preparatory discussions. RSWs also had the opportunity to leave comments alongside their entries to provide more information about which issue they were trying to address and how. RSWs were also asked to keep a participant master list as a record for participant recruitment, in which they were asked to list the main reasons for their involvement.

Focus group.

Eight RSWs participated in a focus group about their role and activities. The discussion focused on topics related to processes of service delivery, whether these were meeting patient needs and what best practices within service delivery would be; the RSWs place within the wider multidisciplinary team; differences between RSW and LA social work; changes to the role in recent years; and views of the future of the role. The focus group took place at the University of Salford in July 2018.

Questionnaires.

A pre- and post RSW involvement questionnaire was designed, which included the US National Comprehensive Cancer Network’s Distress Thermometer (DT) [18] as the primary measure of distress. Initially developed by Roth et al. to screen for distress in cancer patients, it has been validated for use in the UK renal population [19]. It is a simple one-item screening tool, designed to be part of health professionals’ daily practice, which asks patients to rate their distress on a scale from zero (nothing) to ten (extreme). Studies using the DT in renal care are limited, but a meta-analysis of studies in oncology patients found a good balance between pooled sensitivity (0.81, 95% Confidence Interval (CI): 0.79–0.82) and pooled specificity (0.72, 95% CI: 0.71–0.72) at the cut-off score of 4 when comparing the DT to other diagnostic tools, such as the Hospital Anxiety and Depression Scale and Beck’s Depression Inventory [20]. In addition to the DT, emotional thermometers for anxiety and depression [21] were added to the questionnaire, to allow for more detailed identification of emotional difficulties. Furthermore, the Problem Checklist asked patients to specify any issues they faced in the last week and a final question asked participants to describe which issues they wanted to receive support for. Tick box data was collected on patient demographics: age, gender, employment situation, living situation, time on dialysis and ethnicity.

Secondary data.

Where available, RSWs provided data on their yearly referral numbers, active caseloads and any audit documents.

Possible reasons for variations in RSW activities.

Analysis of focus group data identified three possible reasons for the variations in RSW activities, namely: differences in funding and employment arrangements; differences in routine RSW involvement and availability of other services; and differences in patient-to-staff ratios:

As also stated in the renal psychosocial workforce report [22], RSWs are predominantly funded and/or employed through the LA or hospital Trust, with a very small proportion funded through charities. Generally, only those employed by LA have the authority to put in place care packages or undertake statutory assessments for other services that are provided through the LA. Instead, an important role of non-LA RSWs is advocating for patients to ensure that they receive appropriate and timely LA support:

‘Advocacy is a big part of our specialist role. We have to phone, push the case, argue the case. If there is a need, often they’ll prioritise ringing us back. Or for an occupational therapy assessment, if you don’t say the right thing, they can sit on the waiting list for ages and ages.’

–Carmen, RSW.

‘I think that is the point, they do wait for ages. The only way for a RSW without that LA jurisdiction to help is to phone up and say this person is high needs; they look healthy, but they are not because of this, this and this. That is really where a lot of our role comes in, advocating for these patients.’

–Maria, RSW.

The RSWs also explained they were not all funded to cover the same treatment modalities. Some, for example, were only funded to cover the dialysis population and not to get involved in transplant care.

Although important to explore, a discussion around preferable funding/employment arrangements is outside the scope of this paper. Details of advantages and disadvantages to being either NHS or LA employed, related to supervision, management, recognition, and access to reporting systems can be found elsewhere [16].

Activities of RSWs were further found to be dependent on whether care processes in the units stipulated that RSWs would be routinely involved along certain parts of the renal pathway. For example, in some units, all new haemodialysis patients were referred to a RSW for an assessment. Yet, in other units, tasks like pre-dialysis assessments and supportive care support would be solely provided by dedicated nurses, with limited referrals to social work. The presence or absence of other social care related professionals and organisations in the hospital or community further influenced the role. For example, some RSWs stated they were able to refer patients to a hospital benefits worker or a local disability advice organisation, whereas others were not.

Lastly, an important factor to consider when exploring the differences in roles is the large variation in RSW-to-patient ratios, as also reported in the workforce audit [14]. Data on yearly caseloads (provided by 12 RSWs) showed large differences between the number of patients that had been referred to the RSW in one year, from 72 to 520 patients per 1 Full-Time Equivalent. The RSWs explained that they would typically have some form of contact with all referrals. Logically, this large discrepancy means that some RSWs have much more time to spend on an intervention than others. The reach and scope of the role was found to reduce as patient ratios worsen, and poor ratios would impede pro-active ways of working:

‘Last year, I got over 150 referrals on top of my ongoing caseload. It just got too much, so I decided not to see CKD patients anymore, but only focus on haemodialysis patients. I also don’t travel to the satellite units anymore, although I know it might be difficult for those people to come and see me here. I help patients more over the phone than in real time. I don’t just go into the unit to chat to patients and introduce myself or advertise the service. There’s just much more demand for the service than I can handle on my own.’

–Layla, RSW.

The RSWs who cover large patient groups with minimal staff time stated that their resources would be mostly taken up by crisis patients, facing urgent situations such as imminent homelessness or visits from the bailiff. As such, the waiting times for less urgent cases would start to rise and the RSW involvement for these patients would involve more signposting or offering advice by using video calls, phone or email, as opposed to home visits. Some of these ways of working could be further explored as they might increase efficiency. Yet it was also argued that visiting a patient in their home environment can be of great value for an intervention.

RSW versus statutory social work.

RSW was found to be considerably different from statutory social work in the LA or hospital. Findings demonstrated that RSWs could be better positioned to support renal patients than statutory social workers, because they are more accessible, are able to provide holistic and more continuous care, and have specialist knowledge of the renal team and illness:

In recent years, changes in the social care system, and particularly the benefits system, have had a major impact on the RSW role. Increasingly, LA services have tightened their eligibility criteria for support and many patients are unable to access LA services unless they have reached a crisis stage. As a result, RSWs saw referrals to their services increase, as did the time they spent advocating for patients with the LA. Megan and her team had explored their referral data between 2010 and 2018 and found that referrals in the same two-month period had increased from 17 in 2010 to 71 in 2018. In 2010, their role seemed to almost exclusively consist of conducting pre-renal replacement therapy assessments and this number stayed relatively stable over the years. However, recently, referrals for benefits issues, housing issues, and requests related to immigration and homecare increased. Specifically, referrals for benefits increased from 1 in 2010 to 15 in 2018 over the same two-month period. RSWs felt that generic social services were currently not meeting patient needs:

‘The local authority only provides to those that have a need for safeguarding and care packaging. Anything beyond that is farmed out to the third sector and independent teams. Increasingly, so often, and this is my bugbear at the moment, I am referring and people are just not acting on referrals. In fact, I feel like they are tearing it up, people are just not getting responses.’

- Carmen, RSW.

There was a consensus that LA eligibility assessments were not always fair and that many RSW service users would not get ‘through the front door’ of social services, leaving their needs unmet. Patients were not asked the right questions to enable them to fully explain their situation and need for services:

‘The patients are being, may I say it, deliberately stopped from accessing a proper social work assessment. They [the assessors] will miss things out. People often have to wait a long time for an assessment to then hear they do not get the equipment. Then I say: “But have you told them you can’t get down the stairs and about difficulties with meals etc?”, then their response will be: “Well, they didn’t ask”.’

–Maria, RSW.

Instead, the only eligibility criterium RSWs apply is whether a patient is under the care of a nephrologist. As such, RSWs are able to support patients that are not yet in the ‘high need’ category, for whom the LA would have no duty to assist. RSWs described their profession as an ‘old school’, ‘therapeutic’ version of social work, that allows them to support all patients in need.

‘Renal social work is about being creative, getting into old-school, old fashioned social work. It is about getting to know people well and getting the best for them, because you know them well.’

–Jennifer, RSW.

RSWs explained that without their expertise and advocacy involvement, many patients would not be able to access community resources, or get adequate support from them. To illustrate, Maria recalled a time when she returned from long-term leave and her post had not been covered, leaving patients to try and access services on their own:

‘My answering machine basically said for this year I’m not here: go to CAB [Citizens Advice Bureau] with this problem, go to the law centre for this, or go to the council. That’s it. Then I came back to find out a lot of people with high level disabilities had their Employment and Support Allowance stopped and were about to be evicted, they had their PIPs dropped to lower levels. So, I came back to a lot of problems because my patients couldn’t access the community services.’

–Maria, RSW.

In addition to experiencing issues related to social care, many renal patients suffer from emotional problems such as anxiety and depression. The RSWs explained that patients were not only struggling to access social services, but that community mental health services were also increasingly under pressure. Many RSWs, particularly those without renal psychology colleagues, feel like they are ‘also holding that patient group [with psychological issues] afloat’ (Carmen, RSW), by offering access to lower-level emotional support.

RSWs were not only more accessible to patients because of their inclusive eligibility criteria, but also due to being based in the hospital. Some RSWs with better staff to patient ratios were involved in doing assessments, home visits, or were able to visit the renal units on a regular basis. This then meant that patients knew of the RSW service, leading to self-referrals. This co-presence also means that the lines of communication between RSWs and MDT members are shorter than those between LA social work and MDT members.

As stated, renal patients often face a variety of simultaneous problems. In the current context of fragmented services, some patients are left to interact with many different agencies and professionals across the health and social care systems. RSWs argued that many of their service users feel too ill, overwhelmed or distressed to actively engage with these fragmented services. Others may not know which services are available, or they lack the capacity to keep an overview of their care. As such, RSWs play an important role in supporting patients by providing oversight of their care.

‘The agencies in the community are increasingly difficult to get hold of. People are living with so much distress, ill health and as a result lack motivation, strength and power, that they just give up.’

- Carmen, RSW.

The RSWs acknowledged the importance of the nursing role in supporting patients with lower-level psychosocial issues. Yet, the complexity of the social services system makes this not an easy task, particularly in larger units. In these units, patients come from different areas, covered by different LAs and local organisations. This makes it difficult for nurses to keep oversight of which services are offered in the community, how they should refer to them and follow-up whether patients have been able to access the service. The RSWs argued that this is ‘where they come in’. They are able to assess all patient issues and take on a case management role, a holistic service that other providers cannot offer:

‘The nurses on the ward are not going to unpick all of the patient’s problems, they are not going to have the knowledge or the time to unpick this. No one else is, if you send someone out to the homeless team they will look at the homelessness, then they have to go to CAB, then they are referred to the law centre for the next thing, then dietician, so many different places and they won’t go because they’ve got 20 other appointments to get to. And no one, the outside agencies, they don’t care enough about the whole issue to stop and unpick everything. And that is where we, RSWs, come in, because we have the knowledge and experience to do that.’

–Debra, RSW.

Not only do RSWs provide holistic care, they also provide continuity of care. RSWs are able to support patients as their needs change throughout their whole renal journey, from diagnosis to end-of-life care. This was considered beneficial for the patients. RSWs argued that they could build relationships, learn about patients’ supportive networks and understand what works and what does not work for them.

‘They get to know us, and that’s what people don’t get in Local Authority social work. They get an intervention and then it’s closed and then somebody else comes along.

–Maria, RSW.

This ability to build relationships was perceived to be an essential element of a good social work intervention, especially as some patients would not share personal problems before a certain level of trust was gained. The RSWs further stated that statutory social workers would close cases much earlier than they would do, especially if patients were not engaging. Since non-attendance was often a reason for the RSW to get involved in the first place, they argued that immediately giving up on a patient that does not engage would go against their objectives.

Finally, RSWs have, as the name implies, specialist knowledge of renal disease, which includes an understanding of the impact of the illness on a patient’s physical and emotional wellbeing, daily schedule and wider social situation. There was a consensus that this renal expertise, in combination with being based in (proximity of) the renal unit, provides further advantages of RSW as opposed to LA social work. By acting as the mediator between medical staff and patients it allowed them to support those who experience distress due to questions or disagreements about their treatment:

‘I find a lot time that I might be mediating between medical staff and patients and I think what they hear from medical staff, how they hear it, is different to when they talk to us. We’ve got the link with it, but we are not clinical.’

–Karen, RSW.

It also meant that the RSWs were able to benefit renal patients on a group-level. They can challenge issues that affect multiple patients, or organise peer-support activities or initiatives for several patients at the same time. Furthermore, RSWs are usually able to offer more flexibility in scheduling appointments around or during treatment times. This offers ease of access by seeing patients in the units, although some would also do home visits if preferred. As mentioned, RSW report having greater understanding and continued engagement when patients miss their appointments.

RSWs work more easily, in an integrated way, with other (renal) allied health professionals, such as psychology or occupational therapy services. This integration in the team, knowledge of the patient, and understanding the importance of treatment, is vital to be able to respond swiftly when situations arise that could stop patients from attending their treatment. Carmen stated that since these problems were ‘normally a crisis’ and ‘normally chaotic’, being at the ‘front-line allows RSWs to be responsive and immediate’. LA social services are not always able to do this, as became clear from this dialogue:

‘When I was on annual leave last year there was a carer in crisis, and they [social services] said ‘we’ll give you a list of care agencies’, because she was self-funding’.

–Becky, RSW.

‘…Which is against the care act’.

–Debra, RSW.

‘Yes, two days later her husband was in hospital because he was so poorly, the list of care agencies hadn’t even gotten to them by that time’.

–Becky, RSW.

The findings showed that RSWs’ specialist knowledge of renal disease was of vital importance to help patients articulate the impact that the illness had on their lives in such a way that would grant them access to the (benefit) support they were entitled to. Especially for dialysis patients, this can be complex, since their health and ability to look after themselves can fluctuate greatly throughout the day. It was said that if RSWs did not help to complete requests for support and followed up with advocacy efforts, patients were often unjustly refused.

‘As a renal social worker, you know the condition and the symptoms, so you know how to ask the right questions when filling in forms, when to explore, or get more into details. For example, someone might say ‘yes’ to the question if they can get dressed or can walk up the stairs, but then don’t say that they will be so tired after that they have to rest for 3 hours. Non-renal staff won’t know this and then patients won’t get the support they should be getting.’

–Layla, RSW.

The criteria [from social services] are strict, but we can frame it in such a way, only through having the knowledge, that specialism. It is not saying that we are winging people through because we are throwing our weight about, they genuinely should meet the need. Alternatively, if they don’t, then we become creative and look at third sector agencies, grants, or different ways of working, different ways of supporting people. If we didn’t, I don’t think things would move on for that patient or that family.’

–Carmen, RSW.