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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 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.[4][5] 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. [6-10] These examples go against the legal requirement for patients to be made aware of what a treatment will involve, including the associated risks.[11] They illustrate the relationship that can exist between consent, pain and patient harm. Patient safety points for further discussion: Are there other scenarios we can learn from to understand how consent impacts on pain experience and patient safety? What support do clinicians need to communicate the information in a way that is accessible, comprehensive and patient focussed? Where guidance for clinicians exists[12], why isn’t it being widely used? What can be done to make sure patients feel empowered and supported in halting procedures if the pain becomes unmanageable? Should severe procedural pain be recorded as a Serious Adverse Event? Communication 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’.[13] 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.[14] 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.[15] 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[16]. 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: Can examples be shared where alternative pain assessment tools have been used to meet the needs of patients with communication challenges? Bias and gatekeeping 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: 1) Maternity 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.[17] 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.[18-19] Or, that loud vocalisations of pain may be more easily dismissed and wrongly attributed to differences in cultural expression[20], 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.[21] 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’. 2) Sickle cell anaemia 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.[22] 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.[23] 3) Chronic pain 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[24] and, although guidance has been produced,[25-26] 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.[27] 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.[28] A recent analysis of tweets from patients, many of whom had chronic pain, showed that harmful doctor-patient communication can impact on diagnostic safety.[29] Patient safety points for further discussion: What training is there for GPs and other clinicians regarding pain management, across different patient groups and demographics? To what extent do assumptions and biases impact how patients experience pain more broadly throughout health and social care? To what extent does institutional racism play a part? Differences in pain experience Research suggests that pain thresholds can vary. Low pain tolerance has been attributed to patients with fibromyalgia, chronic fatigue syndrome[30] and intellectual and developmental disabilities[31]. Studies have also shown that gender[32], ethnicity[33] and previous trauma[34] 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: Are some patients at greater risk of experiencing trauma-inducing levels of pain than others? Do the methods used for determining how much pain relief to give an individual adequately recognise differences in thresholds, across all demographics? We’d like to hear your views 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 content@psl.org. References [1] British Pain Society, Useful definitions and glossary. [2] Katz N, The Impact of Pain Management on Quality of Life. Journal of Pain and Symptom Management 2002; 24; 38-47. [3] Twycross A, Forgeron P, Chorne J et al. Pain as the neglected patient safety concern: Five years on. Journal of Child Health Care. 2016; 20 (4): 537-541. [4] The Independent Medicines and Medical Devices Safety Review. First Do No Harm 2020. [5] Patient Safety Learning. Findings of the Cumberlege Review: informed consent. Patient Safety Learning’s the hub 2020. [6] Patient Safety Learning. Painful Hysteroscopy. Patient Safety Learning’s the hub, Community Forum. 2020. [7] Women’s Hour. Hysteroscopy. 2019. [8] Discombe M. Hundreds of women left ‘distressed’ by hysteroscopies. Health Service Journal 2019. [9] Care Opinion. Painful hysteroscopy and biopsy. 2019. [10] Hysteroscopy Action campaign website. [11] The Supreme Court. Montgomery v Lanarkshire Health Board. 2015. [12] Royal College of Obstetricians and Gynaecologists, Outpatient Hysteroscopy. 2018. [13] Patient Safety Learning. The Patient-Safe Future: A Blueprint For Action. 2019. [14] Kirkey S. Study suggests more can be done to control pain for children. Ottawa Citizen 2014. [15] Eccleston C, Fisher E, Howard R et al. Delivering transformative action in paediatric pain: a Lancet Child & Adolescent Health Commission 2020. [16] Barney, Chantel C, Andersen et al. Challenges in pain assessment and management among individuals with intellectual and developmental disabilities. PAIN Reports 2020; 4; 821. [17] Hill A. Women in labour being refused epidurals, official inquiry finds. The Guardian 2020. [18] Patient Safety Learning. Racial disparities in postnatal mental health: An interview with Sandra Igwe the Founder of The Motherhood Group. Patient Safety Learning’s the hub 2020. [19][19] Patient Safety Learning. Five X More campaign: Improving maternal mortality rates and health outcomes for black women. Patient Safety Learning’s the hub 2020. [20] Wyatt R. Pain and Ethnicity. Virtual Mentor. 2013; 15(5); 449-454. [21] Kirkup B. The Report of the Morcambe Bay Investigation. 2015. [22] Smith-Wynter L, van den Akker O. Patient perceptions of crisis pain management in sickle cell disease: a cross-cultural study. NT Research. 2000;5(3):204-213. [23] Hall S. “People with Sickle Cell are seen as hypochondriacs or drug addicts. Even a nine-year-old has to scream to get the care they need”. Picker. [24] NICE. Chronic pain: assessment and management. Guideline scope. 2018. [25] NICE. Analgesia - mild-to-moderate pain. Accessed 2020. [26] NICE. Chronic pain: assessment and management (in development). Page accessed 2020. [27] Häuser W, Fitzcharles MA. Facts and myths pertaining to fibromyalgia. Dialogues Clin Neurosci. 2018; 20 (1): 53-62. [28] Rehmeyer J. Bad science misled millions with chronic fatigue syndrome. Here’s how we fought back. Stat News. 2016. [29] Sharma AE, Mann Z, Cherian R et al. Recommendations From the Twitter Hashtag #DoctorsAreDickheads: Qualitative Analysis. J Med Internet Res 2020; 22 (10): e17595 [30] Dellwo A. Pain Threshold and Tolerance in Fibromyalgia and CFS. Verywell Health. 2020. [31] Barney, Chantel C, Andersen et al. Challenges in pain assessment and management among individuals with intellectual and developmental disabilities. PAIN Reports: 2020; 5 (4); 821 [32] Mogil J, Bailey A. Chapter 9 - Sex and gender differences in pain and analgesia. Progress in Brain Research 2010; 186;-157. [33] Wyatt R. Pain and Ethnicity. Virtual Mentor. 2013; 15(5); 449-454. [34] Mostoufi S, Godfrey KM, Ahumada SM, et al. Pain sensitivity in posttraumatic stress disorder and other anxiety disorders: a preliminary case control study. Ann Gen Psychiatry 2014; 13 (1): 31.

Now called Right support, right care, right culture, the guidance (published on 8 October 2020), outlines three key factors that CQC expects providers to consider if they are, or want to care for autistic people and/or people with a learning disability: Right support: The model of care and setting should maximise people's choice, control and independence Right care: Care should be person-centred and promote people's dignity, privacy and human rights Right culture: The ethos, values, attitudes and behaviours of leaders and care staff should ensure people using services lead confident, inclusive and empowered lives

I believe all clinicians should read this latest report. There is so much to be learned and so many changes in clinical practice that can be made right away. Since 2018, I have been teaching using Oliver's tragic story to promote reflection on best practice in prescribing and in implementing the Mental Capacity Act. I could write a lot here; however, I believe this is a report all clinicians, and especially all prescribers, need to read in full. A summary of how I see this (or indeed how any individual sees it) it will not be adequate.

Summary of recommendations Taking the learning from good practice, the CQC want to see tangible progress on four key areas. Below is a summary of the CQC's recommendations. People with a learning disability and or autistic people who may also have a mental health condition should be supported to live in their communities. This means prompt diagnosis, local support services and effective crisis intervention.People who are being cared for in hospital in the meantime must receive high-quality, person-centred, specialised care in small units. This means the right staff who are trained to support their needs supporting them along a journey to leave hospital.There must be renewed attempts to reduce restrictive practice by all health and social care providers, commissioners and others. We have seen too many examples of inappropriate restrictions that could have been avoided. We know in absolute emergencies this may be necessary, but we want to be clear – it should not be seen as a way to care for someone.There must be increased oversight and accountability for people with a learning disability, and or autistic people who may also have a mental health problem. There must be a single point of accountability to oversee progress in this policy area.

Quality of care before the pandemic The care that people received in 2019/20 was mostly of good quality However, while quality was largely maintained compared with the previous year, there was no improvement overall Before the arrival of the coronavirus pandemic, we remained concerned about a number of issues: the poorer quality of care that is harder to plan for the need for care to be delivered in a more joined-up way the continued fragility of adult social care provision the struggles of the poorest services to make any improvement significant gaps in access to good quality care, especially mental health care persistent inequalities in some aspects of care The impact of the coronavirus pandemic As the pandemic gathered pace, health and care staff across all roles and services showed resilience under unprecedented pressures and adapted quickly to work in different ways to keep people safe. In hospitals and care homes, staff worked long hours in difficult circumstances to care for people who were very sick with COVID-19 and, despite their efforts to protect people, tragically they saw many of those they cared for die. Some staff also had to deal with the loss of colleagues to COVID. A key challenge for providers has been maintaining a safe environment – managing the need to socially distance or isolate people due to COVID-19. Good infection prevention and control practice has been vital. The crisis has accelerated innovation that had previously proved difficult to mainstream, such as GP practices moving rapidly to remote consultations. The changes have proved beneficial to, and popular with, many. But many of these innovations exclude people who do not have good digital access, and some have been rushed into place during the pandemic. The pandemic has had a major impact on elective care and urgent services such as cancer and cardiac services, and there is huge pent-up demand for care and treatment that has been postponed. The pandemic is having a disproportionate effect on some groups of people, and is shining a light on existing inequality in the health and social care system. It is vital that we understand how we can use this knowledge to move towards fairer and more equitable care, where nobody’s needs go unmet. It is important that the learning and innovation that has been seen during the pandemic is used to develop health and social care for the future. New approaches to care, developed in response to the pandemic and shown to have potential, must be fully evaluated before they become established practice.

The virtual service was implemented initially as a work-based project by the Hospital Liaison Nurse (HLN) over an 18-month period between 2017 and 2019. It was designed to keep the patient very much in the centre of their care with regular patient/carer remote contact, ongoing assessment, monitoring, clinical decision making and person-centred care planning. In a consultative capacity, the HLN was enabled to work remotely and maintain ongoing close patient/carer contact, effective case management and improved communication across multiagency professionals. This included ongoing virtual collaborative working across care providers and professionals working within primary, secondary and tertiary health and social care services. Overtime, by embedding person centred care and coordination into clinical practice; it became clear that the approach of the HLN’s role shifted from reactive to proactive care provision. This was likely due to early recognition and earlier response to the subtle signs of deterioration in the patient condition. The initial findings highlight the potential of virtual care coordination, to essentially respond to the ongoing changing health needs of adults diagnosed with an ID and comorbidities and enable timely planning for the individual’s future longer term needs. This shared learning example relates to NICE guidance and quality standards: (QS153) on Multimorbidity (Statement 3 on coordination of care and (NG56) Multi-morbidity: clinical assessment and management. In particular this project takes into account NICE recommendations in relation to equality and diversity considerations and making reasonable adjustments as follows: healthcare professionals should take into account the needs of adults who may find it difficult to fully participate in a review of medicines and other treatments (i.e. those with learning disabilities, cognitive impairment or language barriers.

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Contents: Definition of discrimination Why people with a learning disability are at increased risk of discrimination Additional discrimination seen when people have Dementia Definition of Stigma Why stigma is historically a BIG problem in Dementia The importance of challenging stigma to support living well What has been done to tackle stigma? The national ambition for reducing discrimination and stigma How discrimination and stigma can make a person feel Recognising discrimination and stigma in everyday life How to support a person when they are the subject of discrimination or stigma Reporting concerns How you can avoid being discriminatory or stigmatising Combating discrimination and stigma Taking inspiration from the disability movement Education! Education! Education.

Contents of this booklet: Why does it happen? Ways to support the person Think about unmet needs Understanding the person's health needs Changing daily life

Contents: The importance of good quality end of life care What is the difference between end of life care and palliative care? Useful words that can help you understand end of life care Talking about death and dying Talking about death to the dying person Respecting human rights and a right to know Human rights and end of life care Supporting people at the end of their life.