Angela’s consultation is an example of commonly reported complaints about the health system. But where does it stem from? This does not seem to be an isolated grumble.
To my mind, it is a symptom of a much larger problem with the system –the perceived imbalance between doctor and patient. Doctors have in the past been placed on a pedestal and many poorer or less educated people have been too intimidated by this reputation to dare to speak up. Even when the doctor is clearly mistaken, some patients simply do not dare to question or contradict. This hesitation is now most common among the older generation, often to the consternation of their children and grandchildren.
It’s time we all recognised the need for a much more balanced approach.
What is needed is a partnership between patient and doctor working together towards diagnosis and healing.
In Angela’s case above, there was in the end little damage done. Angela consulted another GP at the conference. She volunteered the information about previous medication and was treated appropriately.
But the repercussions of not questioning care can be much more serious and even catastrophic.
One devastating failure of relations between the family of a thirteen-year-old girl and the healthcare team looking after her, was reported in some detail by her mother in the Guardian newspaper dated September 3rd, 2022. She concluded that ‘if I had been more aware of how hospitals work and how some doctors behave, my daughter would be with me now.’
I will present the story in summary here but the article itself is well worth reading. (https://www.theguardian.com/lifeandstyle/2022/sep/03/13-year-old-daughter-dead-in-five-weeks-hospital-mistakes)
Recently (September 2023) Mrs Mills has described this tragedy on BBC 4 Today programme and launched a campaign for the right of parents and patients to request a second opinion in circumstances where a patient is deteriorating, and the family disagrees with management.
The family, parents and two young daughters, went on holiday to the Snowdonia National Park and rented a cottage nearby. On the second day they rented bikes and rode along a well-known flat cycle path to the sea. On the way back daughter Martha was cycling slowly when her wheel slipped and jack-knifed on a patch of sand that had blown in from the beach. Martha fell with the full weight of her body on one end of the twisted handlebars. She was badly winded and did not recover quickly. The family took Martha to the local Minor Injuries Unit. A nurse described her condition to a doctor over the phone and he diagnosed internal bruising. He prescribed Paracetemol for pain. He did not see or examine her.
During the night Martha was sick and in pain. Her family decided to take her to the local hospital A&E department. The hospital ran some tests and kept Martha in overnight for observation. At dawn one of the doctors explained that he thought Martha had serious damage to the pancreas which had been lacerated at the time of her fall. The pancreas is an organ on the back wall of the abdomen responsible for secreting hormones needed in digestion. The escape of these hormones from the normal channels can be ‘corrosive’ to surrounding structures. Martha was flown by helicopter to the nearest Welsh university hospital where she was admitted to the intensive care unit and received one-to-one nursing. Martha’s mother was now scouring the internet for information about pancreatic trauma. She found that early diagnosis was key as these corrosive secretions escaping from the pancreas could cause serious internal damage.
From Cardiff Martha was airlifted to London to one of the three specialist centres in England dealing with pancreatic injuries in children. Her parents were greatly relieved, believing their daughter to be in experienced hands.
However, Martha was seen by a different consultant each day and it was not clear to the family who was ultimately in charge of her care. Her daytime care was overseen by junior doctors.
After a few weeks in this hospital Martha developed a fever with diarrhoea and vomiting. A course of antibiotics was started. After a few more days Martha started to bleed from the tube in her arm and another in her abdomen. This bleeding is a recognised sign of sepsis, (a very serious form of generalised infection with potentially fatal outcome) but Martha’s parents were not told this. Nurses apparently told Martha’s mother ‘Don’t Google the symptoms. Trust your doctors.’ Martha became dizzy on standing, indicative of low blood pressure, another sign of sepsis.
Fatefully, a bank holiday weekend was approaching. Very few medical staff were in the hospital although consultants continued to call in and do ward rounds. An important blood test was omitted. Junior staff were unaware of the seriousness of Martha’s condition. On Sunday Martha developed an angry red rash involving most of her body: another red flag sign for sepsis. She developed a raging thirst and then had a convulsive fit.
Eventually, and too late, Martha was transferred to the Paediatric Intensive Care Unit and then on to Great Ormond Street hospital for life-support. Sadly, Martha died.
With great generosity Martha’s mother has shared with us the lessons she felt she learned.
- However indebted you are to the NHS, don’t be afraid to challenge decisions if you have good reason to do so. It’s easy to feel cowed but hold your ground.
- Remember most of the doctors in hospital are just training. Don’t be afraid to ask how long a clinician has been qualified. (It’s one indication as to competence.)
- Make sure, if you can, that a single consultant has overall responsibility: we all know that if you are answerable for something you try harder.
- Ignore the advice to avoid the internet and ‘Google’ as much as is relevant.
- Be aware that hospitals are understaffed at weekends and especially bank holidays.
- Understand the shortcomings of the hierarchical system among doctors where juniors are over-deferential to their seniors because their future jobs depend on them.
- ‘Remember that it’s entirely possible you will be “managed” and “reassured” but not told the full truth. We certainly weren’t.’
c. Merope Mills. Merope Mills is the editor of the Guardian’s Saturday magazine.