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Pain is spoken about often within health and social care. Patients might be asked to locate our pain during examinations, to rate our level of pain or to describe the type of pain we are feeling. They may be forewarned of the possibilities of pain occurring during or after procedures or operations. Medical consent forms often include reference to the risk of pain and require a signature to confirm they have been appropriately ‘informed’.
Pain can be acute (lasting less than 12 weeks) or chronic (lasting more than 12 weeks), and the way we experience it, our thresholds, can also vary. It can be our body’s way of warning us of potential damage, yet it can also occur when no actual harm is happening to the body. It can cause trauma, physiological reactions, mental health difficulties and chronic fatigue, and can have a huge impact on someone’s quality of life and ability to perform daily tasks.
Pain is undoubtedly complex, but is it a patient safety issue?
In this blog we will focus on several issues where there is a clear overlap between pain and patient safety concerns, inviting further debate and collaboration on this important topic through a series of questions.
Consenting to treatment is vital to respecting the rights of the patient and ensuring safe care. It is also one area where we see evidence of how patient safety and pain issues can overlap.
A recent example of this can be found in the publication of last month’s report of the Independent Medicines and Medical Devices Safety Review, First Do No Harm. This highlighted a number of cases where women were unable to consent to treatment, undergoing pelvic mesh procedures without being aware that mesh would be used. Many have since experienced adverse effects of the mesh, including severe and chronic pain, managed now by strong opioid painkillers.
While in the above example lack of consent is linked to pain following treatment, there are other cases where patients lack the necessary information regarding pain during a procedure. Women who have undergone outpatient hysteroscopy procedures have highlighted concerns around informed choice, with many given little or no information beforehand about the risk of severe pain. Of those who did experience high levels of pain, some have reported that their doctor continued with the procedure despite their obvious agony, leaving them feeling traumatised and violated.
These examples go against the legal requirement for patients to be made aware of what a treatment will involve, including the associated risks. They illustrate the relationship that can exist between consent, pain and patient harm.
Patient safety points for further discussion:
In our report A Blueprint for Action we make clear the importance of engaging patients in patient safety, drawing on evidence that shows that ‘communication between clinicians and patients has a positive impact on health outcomes’.
When looking at issues of pain and communication, problems with the latter can often present a barrier to dealing appropriately with a patient’s pain issues. For example, evidence shows that pre-verbal children are far less likely to receive adequate pain control in comparison to their adult or older children counterparts. Their inability to self-report has a direct impact on the level of pain they are likely to have to endure. Poorly managed pain in childhood can cause chronic pain, disability, and distress in adult life.
Similarly, there are calls for people with intellectual and developmental disability (IDD) to have their pain better managed, particularly pertinent where self-reporting is not feasible. Researchers have acknowledged the communication barriers faced by patients with IDD and highlight a need for evidence-based, stakeholder-informed methods to be used, in order to assess pain and prevent unnecessary suffering.
This raises further questions around disparities in pain relief for patients who may struggle to communicate for other reasons. For example, if being treated in the NHS and where English is not their first language.
Patient safety point for further discussion:
Another overlap between pain and patient safety is when it comes to access to medication and clinicians holding a gatekeeping role in this respect. Here we will look at examples of this in three different health areas:
The pain that women can experience in childbirth is widely recognised. Some report that pain relief was either withheld or not given within a reasonable time when they requested it during labour.
There can be different factors that also interact with this, with some women raising concerns around the role that racism or cultural assumptions may play in these circumstances. For example, there is a risk that black women could be denied pain relief because of a common perception that they are stronger and better able to cope. Or, that loud vocalisations of pain may be more easily dismissed and wrongly attributed to differences in cultural expression, rather than seen as genuine and in need of immediate response.
We have also spoken to women who felt that staff were ‘gatekeepers’ to pain relief during their labour, based on their preference leaning towards birthing with no medical intervention. The investigation into patient deaths at Morecambe Bay NHS Foundation Trust maternity and neonatal services found that the presence of such attitudes contributed to unsafe deliveries. The Royal College of Midwives has also faced criticism over the language used in a campaign to encourage expectant mums to give birth without intervention, where vaginal deliveries were referred to as ‘normal births’. The College now uses the term ‘physiological births’.
Bias is evident in several patient groups, particularly in the sickle cell community. Mismanagement of pain in this group is frequent due to the assumptions held by clinicians and healthcare workers. Sickle cell patients may be perceived as hypochondriacs, drug seeking or addicted to pain relief. This often leads to patients waiting long periods without (or with minimal) pain relief and can prevent them from seeking help early, potentially leading to further deterioration.
Patients who suffer with chronic pain may also be waiting for long periods without adequate relief, whether attending hospital or seeing a GP. Studies have shown that up to a third of UK adults suffer from chronic pain and, although guidance has been produced, there is evidence that clinician assumptions continue. Some, for example, do not accept that Fibromyalgia (a condition that the patient suffers chronic pain) actually exists. Attitudes like this can lead to patients being ignored, dismissed or sent away with minimal intervention. Sadly, for decades patients have been raising concerns around the dismissal, bias and lack of understanding surrounding the management of chronic pain. A recent analysis of tweets from patients, many of whom had chronic pain, showed that harmful doctor-patient communication can impact on diagnostic safety. 
Patient safety points for further discussion:
Research suggests that pain thresholds can vary. Low pain tolerance has been attributed to patients with fibromyalgia, chronic fatigue syndrome and intellectual and developmental disabilities. Studies have also shown that gender, ethnicity and previous trauma can all contribute to people experiencing pain differently.
With research indicating there are notable differences in pain thresholds, it leads us to question whether all patients have equal access to the pain relief needed to reasonably ease suffering.
Patient safety points for further discussion:
In some ways, we end as we began - with an understanding that pain is incredibly complex. The growing concerns around opioid reliance and over-prescription add another dimension to the conversation and will challenge our thinking further.
Eliminating pain altogether would undoubtedly have implications for how we are able to listen to our bodies and adjust accordingly to recover or prevent damage. However, there is clearly much to learn in order to manage peoples’ pain needs safely, effectively and without perpetuating inequalities. And we cannot ignore the continued presence of both acute and chronic pain in incidences of patient harm.
Patients are describing their personal, and sometimes deeply traumatic, experiences to help key decision-makers identify where change may be needed and prevent future suffering. Their insight and lived-experience will prove crucial to this debate.
The limited examples used in this blog are designed to trigger wider conversations about how we may work together to understand pain as a broader patient safety issue. We welcome the input of others who have an interest in this area. Please comment below or get in touch with the Patient Safety Learning team by emailing [email protected].
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