The multifaceted nature of distress
Distress was considered to be highly complex and multifaceted. Wide-ranging contributing factors were highlighted (such as bereavement, finances, housing, employment, health conditions, neurodivergence, and abuse). Participants emphasised a need for individualised support to suit patients’ complex circumstances:
'It’s very person-centred in terms of it’s not just, okay, you're distressed, so this is what we do with distressed people. It’s very personalised to their exact issues at that time.' (Mental health occupational therapist [MHOT]07001)
This complexity was compounded by cultural factors (such as some cultures being less likely to speak to non-medical practitioners), language (such as difficulties using interpreters), and refugee status (particularly regarding isolation in rural areas). Relative social deprivation was reported to be a common characteristic of patients experiencing distress. For some participants this created additional challenges regarding the patient’s ability to manage their distress, their ability to make lifestyle changes (for example, time off work or changing jobs), and their use of drugs and alcohol:
'They're people that generally speaking would be the poorer members of society who just don't have the agency, the networks, the social networks to be able to change what’s going on for them at the moment. I'd say almost all of them have experienced childhood trauma, and almost all of them experiencing pain and some physical health problems alongside everything else, lots of housing issues and often experiences of loss and bereavement.' (Social prescriber [SP]09001)
‘We’re all doing very different things’
There were a wide range of practitioners involved in supporting people experiencing distress. They were providing different support because of a need for individualised care, varied skillsets, and uncertainty around novel roles. They often worked collaboratively drawing on their specific skill set and expertise:
'I feel like it’s so new in our area. We're all just doing our own thing and fumbling our way through … I feel like we're all doing very different things.' (MHOT10005)
Support largely fell into five broad categories: supportive listening, practical support (such as problem-solving and supporting lifestyle changes), signposting and referring, techniques for managing distress, and medication.
Supportive listening was considered an important way to show empathy, validate and normalise emotions, and offer reassurance by a range of practitioners. Normalisation also served to counter patients’ medicalised view of distress:
'I think, sometimes, people just need to talk to the GP; and [for] some, the doctor is medicine. I'm sure that sometimes helps — and just being able to tell people that it’s normal to feel awful, when someone’s just died — that sort of thing. Try not to medicalise the symptoms.' (GP09001)
Mental health practitioners and mental health occupational therapists described providing strategies for coping with distress (for example, distress tolerance techniques from dialectical behavioural therapy). They sometimes had workbooks or handouts they provided to patients. Many also addressed lifestyle factors that may exacerbate distress such as alcohol use and sleep hygiene:
'I think people come in saying, I'm feeling like this, and I shouldn't be feeling like this, and you've got to make this stop. So I think a lot of the work that we try to do is say, no, actually, it’s okay to sit with that distress, but here’s how you can cope with it.' (MHOT10002)
Mental health occupational therapists and mental health practitioners sometimes worked alongside social prescribing link workers who offered more practical support, signposting and empowering patients to help themselves.
Social prescribing link workers recognised their role was not specifically in mental health, but despite this, mental health (particularly distress) was something they see regularly. Signposting to services to address the specific stressor (such as bereavement support groups or Citizen’s Advice) was discussed by the vast majority of participants. There was variability in services known to be offered that were dependent on local availability. Social prescribing link workers were seen by participants as having expertise in signposting to community support, and many of the participants said that they referred patients to social prescribing link workers:
'Our role as social prescribers is to give people time … Although they may have mental health problems, ultimately there are many other things that would also be affecting them ... So we obviously try and listen to them, we try and hear what they're saying, and then we try and link them up with services that will help them with those worries.' (SP06004)
Many participants talked about signposting patients to NHS Talking Therapies for support – however one practitioner with experience assessing patients for NHS Talking Therapies recognised that this is not always appropriate for people experiencing distress caused by an external stressor:
'It’s hard to then say, "Oh, try to be more motivated", because they are motivated to try and get themselves better, but they just weren't getting the support from other services, like the council, for example, so it didn't necessarily fit with what our therapy could do.' (Mental health practitioner [MHP]13002)
Participants shared contrasting views about medication. Some participants described prescribing antidepressants for patients experiencing distress if that distress was having an impact on their ability to function, if it was of a longer duration, or getting worse. Many of the interviewed GPs reported avoiding prescribing antidepressants for distress in favour of NHS Talking Therapies or social prescribing. Some non-GP participants reported working with GPs who often prescribe antidepressants for people experiencing distress. These participants felt GPs’ time-limited consultations make exploration of patients’ circumstances difficult. They felt this increased the likelihood of a depression diagnosis and antidepressant prescription:
'They're on antidepressants and things like that, and again, they'll be on 50 milligrams or whatever, and then it’s like, it’s not working so I'm going to go back and speak to my GP about upping it, and it goes up, and then it changes medication, and then it goes up. It never seems to be coming down … You speak to people, and they've not actually had a conversation with the GP. The GP doesn't know that relationship problems have happened or something’s happening at work.' (MHP10007)
Some participants also talked about short-term medication use to manage distress (such as benzodiazepines, beta blockers, and medication to improve sleep).
Managing and understanding distress is challenging
Participants recognised that it can be difficult to differentiate between distress and depression and anxiety. GP participants described differences more readily than other practitioners who took longer to reflect before responding. Ultimately, participants were largely in agreement about what the differences are: distress has an external cause that is often time limited, whereas depression and anxiety have other characteristic symptoms and may have a greater impact on functioning.
Most practitioners felt it was useful to distinguish between distress and disorder. For GPs (who described their role as diagnosing and prescribing) the distinction was important for determining treatment, particularly medication:
'I'm sure it must be useful to work out whether they're suffering with depression or anxiety, or some other mental health issue, because that I'm sure would influence how you manage them. It could add to how you manage them. In terms of managing the distress, if they're distressed because of, they can't feed their family that week, but they're otherwise not normally suffering with mental health problems, then we might have ways to access food banks and get support from the social prescribers, things like that. So there might be lots of things there, but if they also suffered with depression, then you might also look at talking therapies, or medication, or other things as well.' (GP09001)
Some practitioners (particularly mental health occupational therapists, mental health practitioners, and social prescribing link workers) felt that the label of distress, depression, and/or anxiety was less relevant and instead focused on the patient’s complex individual circumstances to determine management, regardless of diagnostic label:
'My job is to hear what that person says, the meaning that person gives to everything in their lives and then together we co-create a plan to change, so it doesn't matter if that person has a diagnosis or not. It doesn't change anything.' (SP09001)
Participants frequently highlighted the need to have an in-depth conversation with the patient in order to identify distress and determine management. Short appointments were seen as a barrier to this, particularly for GPs, whose shorter appointments were seen to increase the likelihood of a depression diagnosis:
'... the GP was saying, "I think he’s really low in mood". So I had an appointment with him and that’s where we explored in a bit more depth about all of the changes that had happened because of the loss of the job … the GP had prescribed antidepressants, actually, but he hadn't taken them … So we did a lot of work about, at that point in time, rebuilding that resilience … He didn't pick up the prescription. Said he just felt better.' (MHOT10002)
This distinction was also guided by the patient’s medical records and some participants reported supplementing conversations with screening tools (for example, the Patient Health Questionnaire25 [PHQ]) to support decisions about providing a diagnostic label:
'I mean, we're quite lucky because a lot of our patients come pre-triaged on our eConsult, and so they will have done PHQs and GAD [Generalised Anxiety Disorder screening tool], and all the rest of it. So that will also help sway the decisions, especially if they're scoring really high on a PHQ or really high on a GAD-7. You'd be like, oh gosh, maybe we should be thinking about giving them a diagnosis.' (GP01001)
Some practitioners used questionnaires less frequently or only to evidence a perceived need for medication. One mental health occupational therapist described her reluctance to use questionnaires as they fail to capture the complexity of the patient’s situation:
'From my experience of working in mental health, I don't find that they [questionnaires] often give a true representation of what the patient’s actually going through.' (MHOT10002)
Five practitioners expressed less confidence in managing distress because of perceived limited expertise in mental health:
'No, I can't say I do feel confident because it’s — again, mental health isn't my field. I'm an adult-trained nurse. So it’s not my comfort zone in any way, shape or form, but I can't turn that individual away so try to manage it in a safe a way as possible, but I'm not confident or comfortable with it on most occasions.' (Nurse practitioner 08001)
Other practitioners were more confident in their approach, sometimes drawing on their experiences from previous employment outside of primary care.
Participants identified many systemic challenges to managing distress such as long waiting times for services, inappropriate referrals (within primary care), and a lack of service provision:
'So I think a lot of patients that end up with us should never get as far as us. I think they should go straight to the talking therapies, but there’s such a long wait on that they don't have access. I think they often re-present to us because they're not getting anywhere. I think we prescribe more because we have no other option.' (GP06001)
This resulted in some participants feeling frustrated or like a failure. For some participants managing distress affected their own wellbeing. Some reported experiencing distress and vicarious trauma.
Some participants took a ‘scattergun’ approach to referrals that they felt exacerbated long waiting times:
'Then you feel a bit guilty because it’s a bit of a scattergun effect to which service will pick you up first, and then you know you're causing a problem because you're bottlenecking all the services, but you just want to get some help as soon as possible for them.' (MHOT10005)
Some practitioners, particularly ARRS practitioners, had guidance about the duration they should see a patient (for example, no longer than 6 months). This contradicted the benefits seen in practice by supporting people for longer periods. Practitioners talked about prioritising the patients’ needs over the guidance from management (often external to the practice):
'We're managing patients that maybe no one else in the surgery — not hasn't been able to, but it hasn't been appropriate for anyone else. I will carry on and do what is right for the surgery, but then I have guidelines from my employers saying you only have up to six months to see this person.' (SP13001)
Demedicalising distress in the face of increasing societal pressures
Participants highlighted the changing context of mental health as a challenge in managing distress. Society’s destigmatisation of common mental health problems was viewed as creating a medicalised view of distress:
'In my view, there’s been a lot of emphasis on destigmatising mental health … they come in and say, I'm depressed … I find a lot of what I end up doing is talking to them about actually, it’s not a depression, it’s not a mental illness. What you're experiencing is a really normal reaction to a life event.' (MHOT10002)
This medical view was related to challenges in supporting patients owing to patient expectations of a ‘quick fix’ or medication to treat their distress. This had an impact on the patient’s motivation and sense of responsibility (where some patients felt it was the clinician’s responsibility to treat the distress):
'Some of them are disappointed that I don't immediately offer them medication — maybe they want a quick fix.' (GP09001)
This was compounded by reports of increasing distress, particularly in relation to the current cost of living crisis. Some practitioners suggested that people have less tolerance for distress in this context:
'I feel there’s a lot less ability to cope now and I think partly that’s because of the pressures of life, that most people are so stressed that there’s no room for dealing with anything else.' (GP12001)
Short appointment length and long waiting times for psychological therapy were seen to contribute to medicalising distress through increasing antidepressant prescriptions. One social prescribing link worker described how demedicalising distress could relieve some of the pressure on services by directing people away from GPs towards support from other practitioners and the community:
'[social prescribing] is an empowering strengths-based model for people that increases confidence, and that is what we need if we're not going to burden the NHS with endless things. If we have a paternalistic view of things where we feel something is wrong with us that we can't possibly change, we need a doctor … That’s just going to increase the burden on the NHS.' (SP09001)