Hi Guest S L,
Thank you for adding your comment. A recent NHS press release said:
"Ten sites have been earmarked for the Midlands, seven in the North East, six in the East of England, South West and South East respectively, five in London and three in the North West."
It is important that people with Long COVID can access the relevant services, regardless of where they live. At Patient Safety Learning, we have called on the NHS to provide more clarity on the clinics including specific locations. We have also recommended they set out plans to address regional disparities, should there be any, to avoid a post-code lottery of access (you can read our blog below).
Clear NHS plan needed to reassure Long COVID patients
If you would like to discuss your concerns further, please do get in touch via firstname.lastname@example.org
From: Learner-Centered Innovation: Spark Curiosity, Ignite Passion and Unleash, Katie Martin.
Join the Patient Safety Learning community and sign up to the hub for free. As a member, you’ll be able to join the conversation, get early access to events and receive regular news and updates about patient and staff safety.
Further reading and resources:
Culture: Good practice
Safety culture programmes
The link below will take you to all of the associated resources on the THIS.institute website including:
Video: Managing obstetric emergencies in women with suspected or confirmed COVID-19
COVID-19: Five key goals in managing an obstetric emergency
Downloadable poster of the five key goals.
When patient harm occurs, caregivers involved are often devastated along with the patient and family, yet many have had to navigate this storm alone. A 'systems approach' in our healthcare workplace, along with the just culture, cultivates the sharing of knowledge and helps prevent patient harm from occurring altogether.
This short video of 'Annie's Story', shows how healthcare organisations seeking high reliability embrace a just culture in all they do.
How did the video make you feel? Have you experienced a systems approach? How can we work towards a more just culture?
*You'll need to be a hub member to comment, it's quick and easy to do. You can sign up here.
This 5 minute video, from MedStar Health, focuses on the human cost to our healthcare workforce when we fail to cultivate a just culture and systems approach overall, but especially when managing unfortunate harm events. This story has inspired conversation and can be used widely as a teaching tool.
When patient harm occurs, caregivers involved are often devastated along with the patient and family, yet many have had to navigate this storm alone. A systems approach in our healthcare workplace, along with the just culture, cultivates the sharing of knowledge and helps prevent patient harm from occurring altogether.
If you'd like to share your thoughts on Annie's Story, the systems approach and building a just culture, please comment below or join the conversation in our forum – Analysing events without blame or shame.
In the meantime, Patient Safety Learning and the Royal College of General Practitioners (RCGP) has developed the attached short guide to help patients with post COVID-19 syndrome (also known as Long COVID) understand the support they can expect from their GP.
Patient Safety Learning recognise that some people living with Long COVID strongly prefer this term, rather than the NICE definition Post-Covid-19 syndrome. In our individual publications on this issue we use the term Long COVID. In the case of this joint leaflet with the RCGP, the term Post-Covid-19 syndrome is used as this aligns with the source information this draws on, specifically this guidance to GPs. While we recognise that this is not the preferred terminology for some people, we hope that this leaflet will help provide people living with Long COVID with a brief support guide in the interim period before detailed guidance is produced.
In a blog, published on the hub today, Midwife Samantha Phillis talks about her experience of the Midwifery Continuity of Carer (CoC) model. Samantha reflects on the benefits of getting to know your patients throughout their pregnancy journey and how this can lead to better outcomes.
What are your thoughts on Continuity of Carer?
Do you have experience of working this way? Have you seen an impact on patient safety? Perhaps you want to ask others how they set it up in their area?
Or maybe you're a patient and had the same midwife care for you throughout your pregnancy. Can you tell us more about your experience and how it made you feel?
Please share your thoughts in the comments below.
You'll need to be a hub member to comment, it's free and easy to do. You can sign up here.
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. 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. 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, 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?
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:
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:
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.[18-19] 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’.
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. 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.
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 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. 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:
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 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:
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 email@example.com.
 British Pain Society, Useful definitions and glossary.
 Katz N, The Impact of Pain Management on Quality of Life. Journal of Pain and Symptom Management 2002; 24; 38-47.
 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.
 The Independent Medicines and Medical Devices Safety Review. First Do No Harm 2020.
 Patient Safety Learning. Findings of the Cumberlege Review: informed consent. Patient Safety Learning’s the hub 2020.
 Patient Safety Learning. Painful Hysteroscopy. Patient Safety Learning’s the hub, Community Forum. 2020.
 Women’s Hour. Hysteroscopy. 2019.
 Discombe M. Hundreds of women left ‘distressed’ by hysteroscopies. Health Service Journal 2019.
 Care Opinion. Painful hysteroscopy and biopsy. 2019.
 Hysteroscopy Action campaign website.
 The Supreme Court. Montgomery v Lanarkshire Health Board. 2015.
 Royal College of Obstetricians and Gynaecologists, Outpatient Hysteroscopy. 2018.
 Patient Safety Learning. The Patient-Safe Future: A Blueprint For Action. 2019.
 Kirkey S. Study suggests more can be done to control pain for children. Ottawa Citizen 2014.
 Eccleston C, Fisher E, Howard R et al. Delivering transformative action in paediatric pain: a Lancet Child & Adolescent Health Commission 2020.
 Barney, Chantel C, Andersen et al. Challenges in pain assessment and management among individuals with intellectual and developmental disabilities. PAIN Reports 2020; 4; 821.
 Hill A. Women in labour being refused epidurals, official inquiry finds. The Guardian 2020.
 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.
 Patient Safety Learning. Five X More campaign: Improving maternal mortality rates and health outcomes for black women. Patient Safety Learning’s the hub 2020.
 Wyatt R. Pain and Ethnicity. Virtual Mentor. 2013; 15(5); 449-454.
 Kirkup B. The Report of the Morcambe Bay Investigation. 2015.
 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.
 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.
 NICE. Chronic pain: assessment and management. Guideline scope. 2018.
 NICE. Analgesia - mild-to-moderate pain. Accessed 2020.
 NICE. Chronic pain: assessment and management (in development). Page accessed 2020.
 Häuser W, Fitzcharles MA. Facts and myths pertaining to fibromyalgia. Dialogues Clin Neurosci. 2018; 20 (1): 53-62.
 Rehmeyer J. Bad science misled millions with chronic fatigue syndrome. Here’s how we fought back. Stat News. 2016.
 Sharma AE, Mann Z, Cherian R et al. Recommendations From the Twitter Hashtag #DoctorsAreDickheads: Qualitative Analysis. J Med Internet Res 2020; 22 (10): e17595
 Dellwo A. Pain Threshold and Tolerance in Fibromyalgia and CFS. Verywell Health. 2020.
 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
 Mogil J, Bailey A. Chapter 9 - Sex and gender differences in pain and analgesia. Progress in Brain Research 2010; 186;-157.
 Wyatt R. Pain and Ethnicity. Virtual Mentor. 2013; 15(5); 449-454.
 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.
We are currently seeking a couple of patients who would be happy to help us with a hysteroscopy communication piece. It will involve a short video recording via zoom, talking about your experience and also to share any benefits you have found in coming together via this forum and the hub. If you have any questions or would like to take part, please email me at firstname.lastname@example.org.