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  • Please don’t undermine my pain relief! A call for learning and respect for patients with long term needs

    Summary

    This blog calls for action on the careful review of established pain medication when a patient is admitted to hospital. Richard describes the experience of two elderly patients who suffered pain due to their long term medication being stopped when they were admitted to hospital. Pain control needs must not be ignored or undermined, there needs to be carer and patient involvement and their consent, and alternative pain control must be considered.

    Content

    My mother, 87 years, was admitted to hospital with a suspected heart attack. At the time, she was on a strong dose of a GP-prescribed opioid (fentanyl) to manage her growing lung cancer. The Duty doctor in the hospital seemed panicked as she was so unwell and used a drug to totally reverse her morphine as they thought she had overdosed. This caused excruciating pain for most of the last 60 hours of her life. They hadn’t properly assessed the history of her prescription or asked me, her documented health advocate, about the drug or my mother’s end of life wishes. After a 2-year long traumatic journey for the family, the Inquest issued a Prevention of Future Deaths report, agreeing her prior medication should have been properly assessed. After another year and a convoluted journey through the health system, NHS England’s Patient safety team issued a National Safety Alert to all English hospitals around more careful use of pain relief reversing.

    Five years later, my good friend was on an unusual cocktail of GP-prescribed drugs for her very painful arthritis. She was admitted to hospital after a fall that dislocated her severely arthritic shoulder. For three days in hospital she went through different medical teams, but no one looked at her pain control needs or her unusual medication, and the only pain relief medication that had worked for her for years was removed totally from very early on in the admission. She suffered on those hard hospital beds, unable to move to a comfortable position due to her painful arthritis, lack of adequate pain control and her shoulder that remained painfully dislocated. She could not move on those beds without help. She was in agony for three days. Sadly she died of a pulmonary embolism in hospital in the midst of that traumatic experience.

    What both these people have in common is the neglect of their medically prescribed, carefully designed pain control to meet their unique needs, their understandable wishes and personal rights. As a result their essential pain control was totally removed while other necessary medical interventions occurred. These patient and service user’s rights were not respected. Huge suffering resulted. This I believe needs addressing and learning from. Pain control needs of patients with chronic conditions needs to be carefully assessed and addressed on all hospital admissions from the very start of admission.

    The current complaint and Inquest systems do not have as their agenda these types of safety learning.

    There are two routes whereby these incidents can be recorded, with one route that may lead to an investigation and system learning nationally. One is the NHS patient portal, which is just for reporting (no one will get back to you, but the information you share could be used to improve safety for future patients), and the other is the Healthcare Safety Investigation Branch (HSIB) who do national investigations  almost always on recently occurring events.

    I would add there are developments in patient safety learning, including patient safety partners rolling out across some health facilities, but this is relatively early on in a national process: https://www.england.nhs.uk/patient-safety/framework-for-involving-patients-in-patient-safety/

    The new NICE guidance on Shared Decision Making also adds to the pressure to learn and change from cases like this. Perhaps special guidance is needed for those admitted for emergency care with complex palliative medication needs? I hope a Body will take this up soon.

    The patient, service user, family and carer voice must be heard and acted on to improve patient safety at these difficult times.

    If you or anyone you know has had an experience like this, particularly in the last few months, do let me know by emailing me or commenting on this post below, as the routes above could lead to long lasting learning. It is sorely needed.

    About the Author

    Richard von Abendorff, son and friend of the patients in this blog. Patient safety campaigner, a member of the Advisory Panel and Citizens Partnership of the Healthcare Safety Investigation Branch and previously a Patient Public Voice for NHS England Patient Safety Team.

    I write this all in a personal capacity as part of an ongoing campaign to get learning and patient/users voices heard and acted upon. They must be central to these processes as Berwick argued some years ago now.

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    Great session on shared decision making here , a real avenue for  patient voices to be heard right from the beginning and ultimately with good guidance may help prevent harm described above

      

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    The Royal College of Emergency Medicine have a Safe Care Committee  which are considering the question! I am hopeful. A valuable forum for others here to consult? https://rcem.ac.uk/safety-3/#:~:text=What%20is%20the%20Royal%20College,the%20speciality%20of%20Emergency%20Medicine

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