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Joanne Hughes

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About Joanne Hughes

  • Rank
    Starter

Profile Information

  • First name
    Joanne
  • Last name
    Hughes
  • Country
    United Kingdom

About me

  • About me
    I have been an active campaigner for patient safety improvement, patient engagement in patient safety, and better care of those affected by patient safety incidents since the tragic and avoidable death of my daughter Jasmine, aged 20 months, in 2011
  • Organisation
    Mothers Instinct
  • Role
    Patient Safety Campaigner

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  1. Content Article Comment
    Blodwen, I am so sorry to hear of your suffering and some of the appalling things that have been said to you. To be harmed by healthcare is a 'trauma' that is not properly understood (except for those of us that are suffering from it) , and in particular differentiating this trauma from the physical injury or loss suffered. It's obvious to us the help we should receive and that the worst thing is abandonment, and dismissal. What happened to anyone harmed by healthcare one would hope would be 'rare' so that's certainly no excuse is it?? Your comments are not irrelevant and are welcomed. Have you had any support at all? I am aware of two counsellors who specialise in this kind of trauma, they themselves have suffered which is helpful. https://www.maureeninsight-services.co.uk, https://burnbankcounsellin.wixsite.com/burnbank-counselling. Sending strength x
  2. Content Article Comment
    MaryAdams thank you for your feedback. I'm glad that you found the content useful. I will be expanding further on the needs of harmed patients and families and how we meet them in this blog series over time. With 3 small children at home and no childcare opportunity since the end of March progress has been stalled, but it is in the pipeline! I'd be very delighted to have a chat with you about your work and my views on how we treat harmed patients better, ...and as discussion/development for pathways unfolds do make sure you are a part! Jo
  3. Content Article
    “After he died, the little plastic ID band that was around his tiny wrist should have been slipped onto mine. There was nothing more that could have been done for him, but there was plenty that needed to be done for me. I needed an infusion of truth and compassion. And the nurses and doctors who took care of him, they needed it too." Leilani Schweitzer[1] When someone is hurt, it is reasonable to expect the healthcare system to provide care to alleviate symptoms or to cure. It is also reasonable to expect those providing the care to be adequately trained and supported to do so. Yet, when harm is caused by healthcare, the spectrum of harm suffered is not well understood, care needs are not fully recognised and, therefore, the care needed to facilitate optimum recovery is not being provided.[2] In fact, with outrageous frequency, at a time when exceptional care is so desperately needed, those hurting describe how they are further harmed from ‘uncaring’ careless and injurious responses. Healthcare harm is a ‘double whammy’ for patients Healthcare harm is a ‘double whammy’. There’s the primary harm itself – to the patient and/or to those left bereaved – but there is also the separate emotional harm caused specifically by being let down by the healthcare professionals/system in which trust had to be placed.[3] This additional emotional harm has been described as being the damage caused to the trust, confidence and hope of the patient and/or their family.[4] Trust – you rely on professionals to take responsibility for what you cannot do yourself. Confidence - you believe that the system will protect you from harm. Hope – you have the conviction that things will turn out well. Anderson-Wallace and Shale[4] For the patient and family to be able to heal from healthcare harm, appropriate care must be provided not only for the primary injury and any fall out from this, but also this additional emotional injury (being let down by healthcare) and any fall out from that. For example, a parent who loses a child as a result of failures in care will need help to cope with the loss of their child and all of the processes that occur as a result. But they will also need support to cope with having had to hand over responsibility for their child’s safety to healthcare professionals, only to be let down, and all the feelings and processes associated with that. Much needs to happen to restore that parent’s trust, confidence and hope in our healthcare system and the staff within it. This is different to the parent of a child who has passed away from an incurable illness despite exemplary healthcare. A parent let down by healthcare has specific additional care and support needs that need to be met to help them cope and work towards recovery. Healthcare harm also causes emotional harm to the staff involved In 2000, Albert Wu introduced the phrase ‘second victim’ in an attempt to highlight the emotional effects for staff involved in a medical error and the need for emotional support to help their recovery.[5] The term has recently been criticised, since families should be considered the second victim,[6] and the word victim is believed “incompatible with the safety of patients and the accountability that patients and families expect from healthcare providers.”[7] While the term itself may be antagonistic, or misrepresentative, the sentiment – that staff involved in incidents need support to cope with what has happened, and to give them the confidence to do what is needed to help the patient/family heal – certainly stands. When staff are involved in an incident of patient harm, they may lose trust in their own ability and the systems they work in to keep patients safe, and they may worry about their future.[5],[8] They need care and support in order to recover themselves and, crucially, so that they feel psychologically safe and are fully supported to be open and honest about what has happened. They need to feel able to do this without fearing personal detrimental consequences for being honest, such as unfair blame or a risk to their career. This is essential to the injured patient/family receiving the full and truthful explanations and apologies they need in order to regain trust, confidence and hope, and, ultimately, to heal as best they can. So, in addition to patients and families there should be a ‘care pathway’ for staff involved in incidents of harm. A google search on ‘second victim’ reveals a wealth of research on the emotional effects of medical error for staff involved and the best ways to provide support for this, and this is resulting in the emergence of staff support provision to aid recovery.[9] In contrast, very little research has been done into the emotional effects and support needs of families and patients. How is ‘care’ for emotional harm given? The ‘treatment’ of the emotional harm has been described as ‘making amends’ – by restoring trust, confidence and hope.[4] Once a patient has been harmed by healthcare, every interaction (physical, verbal or written) they have with healthcare after that will either serve to help them heal or to compound the emotional harm already suffered. Trew et al.[10] describe harm from healthcare as a “significant loss” and conclude that “coping after harm in healthcare is a form of grieving and coping with loss”. In their model, harmed patients and families proceed through a ‘trajectory of grief’ before reaching a state of normalisation. Some can move further into a deeper stage of grief and seemingly become stuck in what is referred to as complicated grief. They can display signs of psychiatric conditions "if there are substantial unresolved issues, or where there is unsupportive action on the part of individuals associated with the healthcare system and the harm experience”. At the point of the harmful event, the patient/family experiences losses, including a drop in psychological wellbeing. From this point on, healthcare staff and organisations have opportunities to respond. If the response is supportive it may be helpful for the patient/family in coping with the losses. If the response is not supportive, this may cause ‘second harm’ complicating the healing process, leaving the patient/family with unresolved questions, emotions, anger and trust issues. The patient’s psychological wellbeing and ability to return to normal functioning are severely affected. “Most healthcare organizations have proved, in the past at least, extraordinarily bad at dealing with injured patients, resorting at times, particularly during litigation, to deeply unpleasant tactics of delay and manipulation which seriously compounded the initial problems. My phrase ‘second trauma’ is not just a linguistic device, but an accurate description of what some patients experience.” Charles Vincent[11] There is no shortage of individuals who have suffered extensive ‘second harm’ sharing their experiences in the hope this will lead to better experiences for others and some help for themselves to recover. Many are, wrongly, being ‘written off’ as historical cases that can no longer be looked at. This cannot be right – when these people are suffering and need appropriate responses to heal their wounds. The extent of suffering that exists now, in people who have been affected by both primary trauma and then second harm from uncaring defensive responses, or responses that have not taken into account the information patients and families themselves have, or relevant questions they ask, is no doubt nothing short of scandalous. There is a pressing urgency for the NHS to stop causing secondary trauma to affected patients and families. ‘Patient safety’ has to start applying to the harmed patient and their family members’ safety after an adverse event, and not just focus on preventing a repeat of the event in the future. Yes, future occurrences must be prevented, learning is crucial, but so is holistically ‘looking after’ all those affected by this incident. If they are not looked after, their safety is at risk as their ability to heal is severely compromised; in fact they are in danger of further psychological trauma. These same principles apply to affected staff. Avoiding second harm: what happens now and what is needed? This series of blogs will highlight that every interaction a harmed patient or family member has with staff in healthcare organisations (not just clinical staff) after a safety incident should be considered as ‘delivery of care’. With this view, the ‘care interaction’ should be carried out by someone trained and skilled and supported to do so, with the genuine intention of meeting the patient/families’ needs and aiding the patient/family to recover and heal (restore trust, hope and confidence). The interaction / response must not cause further harm. Stress or suffering, and the content of the interaction, for example a letter, should not have been compromised, as often occurs, by competing priorities of the organisation to the detriment of the patient/family. Thus, these blogs will look at: The processes that occur after an incident of harm (Duty of Candour, incident investigation, complaint, inquest) with the aforementioned focus. The care the patient and family need and the obligation (that ought to exist) to meet that need. Processes that are core to the package of ‘care’ to be provided to the harmed or bereaved and to be delivered by skilled and supported ‘care providers’. The blog series will seek to show that meaningful patient engagement in all of these processes is crucial for restoring trust, confidence and hope; therefore, aiding healing of all groups in the aftermath of harm. “It is important to respect and support the active involvement of patients and their families in seeking explanations and deciding how best they can be helped. Indeed at a time which is often characterised by a breakdown of trust between clinician and patient, the principle of actively involving patients and families becomes even more important.” Vincent and Coulter, 2002[3] It will also consider the additional care and support needs that might need to be met alongside these processes in a holistic package of care, such as peer support, specialist medical harm psychological support and good quality specialist advice and advocacy. It will describe what is currently available and what more is needed if healthcare is to provide adequate care for those affected by medical error in order to give them the best chance of recovery. Alongside this, the needs of the staff involved will also be considered. We welcome opinion and comments from patients, relatives, staff, researchers and patient safety experts on what should be considered when designing three harmed patient care pathways: for patients, families and staff. What is the right approach? What actions should be taken? How can these actions be implemented? What more needs to be done? Join in the discussion and give us your feedback so we can inform the work to design a harmed patient care pathway that, when implemented, will reduce the extra suffering currently (and avoidably) experienced by so many. Comment on this blog below, email us your feedback or start a conversation in the Community. References 1. Leilani Schweitzer. Transparency, compassion, and truth in medical errors. TEDxUniversityofNevada. 12 Feb 2013. 2. Bell SK, Etchegaray JM, Gaufberg E, et al. A multi-stakeholder consensus-driven research agenda for better understanding and supporting the emotional impact of harmful events on patients and families. J Comm J Qual Patient Saf 2018;44(7):424-435. 3. Vincent CA, Coulter A. Patient safety: what about the patient? BMJ Qual Saf 2002;11(1):76-80. 4. Anderson-Wallace M, Shale S. Restoring trust: What is ‘quality’ in the aftermath of healthcare harm? Clin Risk 2014;20(1-2):16-18. 5. Wu AW. Medical error: the second victim: The doctor who makes the mistake needs help too. BMJ 2000;320(7237):726-727. 6. Shorrock S. The real second victims. Humanistic Systems website. 7. Clarkson M, Haskell H, Hemmelgarn C, Skolnik PJ. Editorial: Abandon the term “second victim”. BMJ 2019; 364:l1233. 8. Scott SD, Hirschinger LE, Cox KR, McCoig M, Brandt J, Hall LW. The natural history of recovery for the healthcare provider “second victim” after adverse patient events. Qual Saf Health Care 2009;18(5):325-330. 9. Second victim support for managers website. Yorkshire Quality and Safety Research Group and the Improvement Academy. 10. Trew M, Nettleton S, Flemons W. Harm to Healing – Partnering with Patients Who Have Been Harmed. Canadian Patient Safety Institute 2012. 11. Vincent C. Patient Safety. Second Edition. BMJ Books 2010.
  4. Content Article
    Emotional and other long-term impacts of harmful events can have profound consequences for patients and families. Stakeholders designed a path forward to inform approaches that better support harmed patients and families, with both immediately actionable and longer-term research strategies. '[There's the] long-term responsibility of the institution, that we don't talk about....If we [had] some sort of [understanding of the] trajectory of the harm, [we could ask] What roles do institutions play at different parts? [What roles] should they play?'
  5. Community Post
    When my daughter Jasmine was given Methylprednisolone unsafely in 2011, when she was already Hypertensive before being given the drug, unbeknownst to me, safety guidelines for giving the drug (to monitor BP) were not followed. She developed symptoms that were very alarming to me. I was certain she was in distress and as time went on she developed a facial palsy (as I described as 'a strange shaped mouth' ) strange movement of her limbs and slurred speech. She was in the care of a nursing team and a very junior doctor who mistook her initial distress as 'hyperactivity' in response to steroids. This initial misdiagnosis then 'remained' despite her progressing symptoms, and my repeated attempts to get somebody to 'do something' to alleviate her distress. Conversations with a senior on call clinician described a hyperactive child whose mother is asking for sedation due to the Childs distress. This did not convey a sense of urgency for a review. By the time the senior clinician arrived Jasmine was seizing. At that time, once it was established BP had not been monitored and the current BP was measured, a Methyl Prednisolone induced Hypertensive Crisis was suspected. Jasmine had to be transferred to PICU. There are many stories, like mine, where parents are on a ward with a deteriorating child, who are alarmed, and frightened, but have no power to escalate their own Childs care. Was I at home and Jasmine presented like that, I am certain I would have rushed her to A&E myself or called an ambulance. On the ward, I had to rely on the nurses and junior doctor to do this for me. For whatever the reasons were, and there were many (I do no blame them as individuals for what happened) their judgement that day was wrong. I firmly believe Patient Activated Call4Concern should be provided in every trust. Why should parents / patients be disempowered from escalating care themselves once their child / they become an inpatient. I am aware that what evidence there is on this subject demonstrates it is not abused or used inappropriately, it has avoided serious incidents that likely would have otherwise occurred, and every call provides the trust with insight of some sort to help with patient safety improvement. https://www.royalberkshire.nhs.uk/call-4-concern.htm
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