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In the two weeks before his death Robbie was seen seven times by five different GPs. The child was seen by three different GPs four times in the last three days when he was so weak and dehydrated he was bedbound and unable to stand unassisted. Only one GP read the medical records, six days before death, and was aware of the suspicion of Addison's disease, the need for the ACTH test and the instruction to immediately admit the child back to hospital if he became unwell. The GP informed the Powells that he would refer Robbie back to hospital immediately that day but did not inform them that Addison's disease had been suspected. The referral letter was not typed until after Robbie had already died and was backdated to the day following the consultation. In a statement after Robbie's death this GP stated: "An Addisonian crisis is precipitated by an intercurrent illness and the stress it induces." Dyfed-Powys Police investigated Robbie's death between 1994 and 1996 but asserted, supported by the Crown prosecution Service in Wales, that there was no evidence of crimes committed by the GPs who, incidentally, were retained by this police force as police surgeons. Following a complaint by Will Powell (Robbie's father) in 1998 against the Deputy Chief Constable of Dyfed-Powys Police, regarding the inadequacies of the criminal investigation, a second criminal investigation was agreed, which commenced in January 1999. As with the first criminal investigation, there was a gross failure to adequately investigate the criminality of the doctors. This resulted in Will Powell making a formal complaint against the Chief Constable of Dyfed-Powys Police in late 1999. This complaint against the Chief Constable resulted in Dyfed-Powys Police appointing an outside police force to review Robbie's case in 2000. Detective Chief Inspector Robert Poole [DCI Poole] from West Midlands Police was appointed. DCI Poole’s investigation report, entitled 'Operation Radiance', which was based on the documents provided to Dyfed Powys Police in March 1994, by Will Powell and his solicitor, was submitted to CPS York in March 2002. This report put forward 35 suggested criminal charges against five GPs and their medical secretary. The listed charges were: gross negligence manslaughter forgery attempting to pervert the course of justice conspiracy to pervert the course of justice. DCI Poole's investigation also resulted in a disciplinary inquiry by Avon & Somerset Constabulary into Will Powell's allegations of misconduct against Dyfed-Powys Police officers with regards to their two inept criminal investigations between 1994 and 2000. Dyfed-Powys Police was found to have been 'institutionally incompetent' but no police officer was made accountable. In April 2003, Will Powell met representatives from the CPS in London, who accepted there was sufficient evidence to prosecute two GPs and their secretary for forgery and perverting the course of justice. However, they would not prosecuted because of (1) the passage of time, which was caused by a decade of cover ups between 1990 and the appointment of DCI Poole in 2000, (2) Dyfed Powys Police had provided the GPs with a letter of immunity, and (3) the available evidence had been initially overlooked by the police and the CPS, between 1994 and 2000, for a variety of reasons. Following a 2013 adjournment debate, in the House of Commons, the Director of Public Prosecutions subsequently agreed, in October 2014, that there would be an independent review of the decisions made by Crown Prosecution Service, in 2003, not to prosecute, when there was sufficient evidence to do so. The reviewing Queen's Counsels have been provided with a report, written by myself ( a healthcare IT professional, former head of IT in an NHS trust and clinician) on major anomalies in Robbie's Morriston Hospital computerised records, which were erased during the first criminal investigation between 1994 and 1996. The review has not been concluded six years on. The letter below (and also attached) from the English and Welsh Ombudsman was sent on 10 November 2020 sets out the case for a Public Inquiry.

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.

In their previous review, the CQC found that many children and young people experiencing mental health problems don’t get the kind of care they deserve. They found that the system is complicated, with no easy or clear way to get help or support and made a number of recommendations for national, regional and local action to improve mental health care for children and young people. The CQC have followed up what action has been taken at a local level in response to their recommendations. They found that the recommendations from the 2018 report were being implemented to varying degrees. For example, while there was stronger prevalence of joint commissioning, almost one in five local health and wellbeing boards reported back that there was no joint commissioning of support for teenagers and young people as they moved to adult services. The report concludes that continued improvements are needed to make sure the CQC's local recommendations are being acted on.

The report identified five essential learnings: More than half of adults and over two thirds of young people said that their mental health has gotten worse during the period of lockdown restrictions, from early April to mid-May. Restrictions on seeing people, being able to go outside and worries about the health of family and friends are the key factors driving poor mental health. Boredom is also a major problem for young people. Loneliness has been a key contributor to poor mental health. Feelings of loneliness have made nearly two thirds of people’s mental health worse during the past month, with 18–24 year olds the most likely to see loneliness affect their mental health. Many people do not feel entitled to seek help, and have difficulty accessing it when they do. 1 in 3 adults and more than 1 in 4 young people did not access support during lockdown because they did not think that they deserved support. A quarter of adults and young people who tried to access support were unable to do so. Not feeling comfortable using phone/video call technology has been one of the main barriers to accessing support.