Psychological toll

Participants reported the first negative psychological impacts when contacted by government letters, GP texts or phone calls.

But I did get quite upset when the letter about shielding… and it changed for me then. And I sort of had a feeling that I would be on the vulnerable list. And when it turned into the extremely clinically vulnerable, then I did have, yeah, I was quite upset about that to be honest. (Female, 30s, interview 1)

Despite the psychological impact of the letter, having to socially isolate and being told you were CEV, there was not much attention nor information about this from healthcare professionals, care teams nor in the letters themselves.

I was a bit disappointed with the team that they did not contact us as patients and say, ‘You need to shield.’ Because not everyone got their letters at the same time. (…) It would have given more weight to what was said by the government and by the GPs. So, yeah, they did not contact us until a lot later and they basically told us that we’re shielding. They basically sent us a letter how to deal with mental health and what websites to use to deal with mental health, and to use mindfulness and stuff like that, which I just thought was unhelpful. (Female, 20s, interview 2)

This was echoed by several other participants, who all stated that having digital resources was not the same as psychological support, especially as emotions became more intense as what it meant to be ‘vulnerable’ was understood. Respondent 1 explained:

I felt trapped and I felt like, and very scared as well, because you would hear coronavirus is killing all these people and you are on a list that says you are extremely vulnerable.

Being ‘at risk’ and managing ‘risk’

These emotions began to heighten as people learnt more about ‘risk’ factors correlated to getting COVID-19 and ethnicity. Thus, respondent 4, who was in her 30s, stated, ‘When it started coming through that BAME people were more affected, I felt like that’s almost like double whammies. I’ve got sickle cell and I’m Black!’. All participants were open about feelings of ‘fear’, ‘anxiety’ and ‘stress’. They also discussed the consequences of ‘their shielding’ on family members who had to take extreme precautions to keep them safe or who also had to stay inside and shield, such as children. Respondent 1 noted:

I have had times when I have just felt so, so fed up and feeling like almost like there is nothing to look forward to, just like stuck in this, and really bad feelings of guilt as well for my daughter and my husband.

Getting through the pandemic was described as a ‘challenge’, ‘struggle’, ‘hard’ or to be ‘managed’, and parenting during a pandemic was especially difficult with no respite. In interviews, children were viewed as ‘adapting’, but the effects on parents was described as cumulative. Respondent 7, in her 30s, who had been looking after her child with family support explained, ‘It’s been really hard. Psychologically, I think it’s kind of mentally damaging’. The two single men who we interviewed, despite having family and friends, described being ‘isolated’ and ‘alone’. All participants explained how their friends and families would try to aid them to look after their physical and psychological health. Respondent 3, a man in his 60s, noted, ‘I'm managing in terms of being careful wherever I go where there’s a crowd, you know, I do have anxiety with that’. However, he explained that he was avoiding hospitals and any GP appointments he had.

Breaking shielding in hospitals

Hospitals were mentioned by several respondents as situations where people had to ‘break’ shielding and were linked to emotions of ‘fear’. People with SCD did not always have a choice about having to go into hospital and symptoms like pain crises were often unpredictable. However, a respondent explained how she felt that that her ‘chances of living’ was linked to how she understood her identity as intersectional:

This is what intersectionality looks like, it just never stops, it was Black Lives Matter. And then it was Sarah Everard and all of the women’s rights and women’s protection, then it was the boys, the two sickle cell boys Richard and Evan, and how health inequalities and racial health inequalities and sickle cell and like, just having a disability. (…) I think just the fear, you heard all these things on the news saying that, actually, they’re going to be rationing ICU and oxygen. So actually, if I signed up to hospital and I had a chronic illness, and he thought that I wasn’t going (…), I have lower chances of living, I wouldn’t be prioritised. (Female, 20s, interview 8)

Participants’ reports of experiences in hospital care included lack of pandemic preparedness, lack of Personal and Protective Equipment (PPE), fears of contracting COVID-19 and stories about friends or patients with SCD being put on COVID-19 wards or getting COVID-19 and dying. They also related deaths in their communities and among their friends, but grief counselling in hospitals was never mentioned by healthcare professionals, nor was the effect of issues like BLM on patients. Respondent 2 describes this silence:

‘It was never acknowledged, or discussed, like when all the stuff was going on with Black Lives Matter. Like when it first kicked off with George Floyd. There was no conversation about that, when, you know, there’s been reports about how (pause) people that are Black have been treated unfairly in hospitals and been put on the COVID-ward, all that stuff, there was no discussion, there’s just been no discussion nor not even acknowledgement that all of this is going on. It’s like, two separate worlds.

This was not because respondents did not bring it up. Respondent 2 also poignantly explained how she brought up being affected by deaths of fellow patients with SCD:

Because even when I’ve brought up about mental health, with the sickle cell patients, because of the deaths and stuff, (…) the ward manager was like, ‘Um, well, you know, we’ve had to deal with colleague deaths, as well and we have had a bad time with COVID.

The mental health needs of the staff and their emotions of fear and resentment of risking their lives was masking what was happening to patients. Yet, as respondent 3 told us, ‘I’ve experienced death like I’ve never experienced it before in one year’. These stories of deaths and neglected bereavement support were often connected to their own histories and experiences of care in hospitals, which also featured narratives of death and dying.

The lack of knowledge of SCD

Healthcare professionals’ ‘lack of knowledge’ about SCD added to participants’ fears of dying and concerns with ‘mortality’ in clinical practice became a psychological issue. Participants noted that usually they had an advocate, guardian or family member, especially mother or partner, looking after them in hospital before the pandemic. This was very important during pain crises, when patients explained losing control over their physical functioning and ability to speak or in grave situations, for instance, if they were sedated in intensive care. They felt that the presence of this person reduced bad care and acted as a guard against racist treatment. Respondent 2 explained why having an advocate was so important:

My life is in their hands (…) If I piss off that nurse, if I piss off that ward manager, or if she, even if what I am saying is correct, they just don’t agree, she can delay my pain relief by half an hour, she can say that I did anything (…) there is just a lot that can go wrong in that setting. While I am a sickle cell patient, our care is not at the standard as it should be compared to other long-term health conditions that have a lot less people, because as patients we do not say anything. If we do say something, we are immediately labelled as being aggressive or whatever, so we just don’t get what we should get (…) If I was white they would not see it like that (…) That is why I am so scared going into hospital during this period because we cannot have visitors.

Racism in treatment

Fears of second-class treatment, racism and being labelled as ‘aggressive’ were raised by other respondents. For instance, respondent 5, a man in his 40s, explained how clinical guidelines for administration of SCD pain relief within 30 min of admission were not being met in A&E during the pandemic. He mirrors the points made by respondent 2 and explained how he tried to be agreeable and not aggressive, strategies that other patients have also engaged in to manage bad care or discrimination.30 Respondent 3 also explains how he becomes ‘small’ and that is his way of dealing with the pandemic. However, this strategy of being agreeable and not aggressive could backfire as respondent 5 described:

It’s difficult because you don't want to go against them. Like myself, because they always say, ‘Oh, (Name) is so good because he’s not like the other patients who expect the treatment and they are more strong, more assertive.’ I’m not like that. I accept things more. If they say, ‘(Name), we don’t have space.’ Or like, we give you some tablets to go home. And if you can, just go home (…) Sometimes I’ll go, but I know, I wasn’t prepared to leave yet. But because, I think like, okay, they have so many infected people on the wards.

Several respondents stated that they did not ‘go against’ the nurses or other healthcare professionals because they would then risk receiving worse care. Care became a dilemma that patients could not solve and contributed to anticipatory stress that placed participants at increased risk of having pain crises.34 Generally, all participants related a link between the invisibility of pain, their ethnicity and the racism they encountered in services. Respondent 8 highlighted this when she talked about Evan Nathan Smith who died at North Middlesex University Hospital in 2019 and whose inquest was reported in the press in April 2021:

I read one of the articles about Evan and it was saying how like, basically the nurses did not believe him and didn’t believe his pain. I remember the day that they admitted me because they thought that I had the stroke. And then the nurse who admitted me was like, you can look a little bit more ill. And I was like…

Unethical treatment

Experiences of negative treatment were reported in A&E and on the wards more generally. For instance, participants related that nurses did not understand how serious illness manifests on the Black body in cases like stroke or the management of invisible pain. As stated previously, some people try to become small or agreeable, others become big and scream, but neither strategy works.

Some of the things that have been said to me and how I have been treated, like people would purposely not give me my pain relief. And then I have asked and it’s been like two hours. and I am in like excruciating pain. ‘Oh, you’ve just got a habit!’ It says two hours pain relief and I need my pain relief. She says, ‘I don’t think you are even in that much pain.’ (…) The ambulance crew picked me up one time and I was having a horrible crisis. I was screaming. The guy says to me, ‘Shut up. Stop screaming, you’re not that much pain, it can’t be that bad.’ I was like, you can’t tell me what my pain is. You don’t have this. You’ll never understand. You don’t know how the pain feels. (Female, 20s, interview 6)

Respondent 6 illustrated the double bind that patients are in; expressions of pain for a BEM person is always too little or too much. Like other participants, she noted how racism is deeply entrenched in stereotypes of drug-seeking behaviour, yet she jokingly noted that there were places online where she could get stronger drugs. She explains that patients, and especially Black patients, are made to feel guilty for using NHS services. She notes that care can also humiliate SCD patients, reporting an instance of a nurse taking so long to help her with toileting that she had wet herself. She says the nurse’s reaction was, ‘Oh you are disgusting. You are a (age) year old! How can you be wetting yourself?’. The effects of such experiences of neglect and poor care built up, and she explains:

My mental health has been tested so much, even before COVID, it has been tested, I can’t explain it but I suppose, I like to hold things in and sometimes I do like cry about things but sometimes you get pushed over the edge.

Fighting for life

In all the interviews, narratives of unethical treatment, racist experiences or loss of ability to control what was happening to them were counteracted by stories about family support, friendship among patients, care of voluntary sector and self-management of SCD. Respondents 6 and 8 each recount experiences where they had almost lost their lives in hospitals, but this was prevented by their mothers. Respondent 8, who had a life-threatening stroke during the pandemic and was treated as if she was faking it, explained how this was put in context:

My mom was like, it’s really funny, because when you were a baby, you're probably about one, I knew something was up (…) you just weren't right. And so, I took you to A&E at the hospital and I was like, ‘Something’s wrong with my daughter!’ and ‘Help her.’ And she’s got sickle cell and something’s wrong. And they were like, ‘She looks absolutely fine. She’s playing around. She’s doing that, she looks fine.’ And she was like, ‘No, I know my daughter!’.

In these stories, the role of the mother and child as ‘fighters’ (or ‘warriors’) who know SCD best are shared and support the necessity of a hypervigilance around hospital care. Respondent 6 has a similar story and says that her mother tells the healthcare professionals, ‘If you know my child, you would understand this. She’s always been a fighter from the day she was a baby!’. Their stories are affirming that their lives matter when lack of knowledge of SCD or racist treatment threatens those lives. Mothers are also giving their children psychological resources in a medical context where what it means to grow up with SCD, and go through traumatic and dehumanising experiences in care, is ignored.

Psychological resources

While we expected stigma related to mental health, we instead found participants remarkably astute and open. Several were seeing therapists or psychologists privately and explained that their consultants were not always aware of their diagnosis or medications. They explained psychological needs linked to bereavements, anxiety, depression, panic attacks and also experiences of racism and traumatic hospital care. One participant even suggested there should be a psychologist available for every person with SCD from childhood upwards. This is echoed by respondent one:

No, I think the main thing about mental health is, with sickle cell, it is not spoken about enough and I don’t think the NHS as a whole has made enough between mental health and dealing with a chronic condition because sometimes it is just so focused on the physical and it’s not accepted or considered, you kind of live in fear a lot of time. You are living in fear of getting unwell.

The fear of being in pain is also about the fear of dying, which is a message that patients with SCD are confronted with as a matter of routine. SCD is a ‘taboo’ or ‘burden’ or a ‘stigma’ in society and everyone shared how they were told on a regular basis that they were going to ‘die’ by families, communities and healthcare staff. This is reinforced by actual experiences throughout their lives when they have become ill or almost lost their lives. Respondent 4 explained:

When I had my (child), my anxiety really went sky high, because then all I was thinking about was my mortality to be to be fair, because if I had a crisis, and I passed away, who would look after him, and I think it’s things that people who don't have an illness, like we do, don't think about at this age, but it’s something that we do think about.

Participants related that some healthcare professionals would check in on them during the pandemic but generally they were not routinely asked about their psychological health, despite the fact that this can be a conduit to stress and thus crisis. We know that patients with SCD do not wear their conditions on their sleeves and they try to manage both their physical and psychological well-being privately.35 However, while some physical needs can become visible, pain and psychological issues stayed invisible and meant that common reactions to the pandemic, like anxiety or depression, were never talked about, nor were common emotional reactions to growing older with an uncertain chronic condition. Respondents related that if a patient was using services intensively that would trigger a clinical psychologist to talk about pain management. Patients could also self-refer to a psychologist, but it was noted that these services were typically white, not culturally affirmative nor understanding about SCD. That last point was noted as particularly important, especially if one wishes to be critical about the care received, to discuss racism or to see services improve. However, it was about more than that as respondent 2 elucidates:

I also wanted it to be someone that I could relate to, someone that was Black, that had a knowledge of the Caribbean, like the pressures of being Black in Britain, basically, and how that impacts on sickle cell and everything.

Fears and mistrust in medicine of the Black community also had to be taken seriously like being sectioned, families forced apart or being medicated. Yet, when bereavements, deaths from COVID-19 and even BLM is ignored in services, it sends a general message about who the NHS services are for and the position of BME patients in those services.