I wore a wig for a 12 months after I had a stem cell transplant. The wig wasn’t for self-importance as a lot as not desirous to be outlined by having had chemotherapy. I didn’t desire a label, stigma, judgment, or pity. I’ve written a pamphlet for surgeons on Avoiding Unconscious Bias,1 and I do know that being perceived to slot in is usually simpler than being your genuine self. Returning to work as a surgeon, I treasured every interplay with sufferers, working alongside colleagues previous and new, in a job I assumed I’d by no means do once more.
In medication, and extra broadly, we’re caught in a paradox. We’ve got entry to extreme quantities of knowledge, but easy messages get drowned out. By my expertise as each a affected person and a surgeon I’ve come to worth clearly communicated well being info. Clear info helps to reduce taboos and empower sufferers and employees.
I’ve some sensible ideas that might profit others sporting wigs after chemotherapy: put on cardigans, not jumpers; get a Radar key for entry to incapacity bogs so to alter your wig in non-public; your hair grows about 10 cm a 12 months, and after chemotherapy it might develop again very curly. Equally, when getting ready for my hip substitute I used the Fitter Higher Sooner leaflet2 that I’d helped to write down with the Centre for Perioperative Care, and the recommendation it gave about getting lively actually improved my means to go away hospital quickly and regain power after the operation.
Each affected person’s expertise is completely different. However I nonetheless assist standardised pathways that empower sufferers and assist all employees to really feel a part of the workforce and share common info and expertise. If pathways aren’t agreed and written down a affected person’s journey can really feel unpredictable, in order that they continue to be passive and really feel powerless. Having info in writing clarifies follow: affected person info assets can clarify care pathways for workers and sufferers.3 And standardised pathways permit us to establish the steps the place every affected person and their medical wants are distinctive. For instance, every pathway ought to embrace prompts for excellent care and will outline “pink flags” the place a affected person could deviate from the usual trajectory.
For sufferers, lengthy intervals of ready are interspersed with rushed interactions with healthcare employees. We want details about every affected person prematurely: the Skilled Document Requirements Physique has a useful “About Me” template for sufferers to incorporate essential private particulars for healthcare employees, explaining the affected person’s distinctive background and values.4
Choices and complexity
I fear that the “one cease store” strategy to healthcare provides an excessive amount of stress and doesn’t permit a cooling-off interval for sufferers to mirror. Higher preparation and perioperative care, involving complete and clear communication, may assist the 14% of sufferers who categorical remorse after surgical procedure5 and the 12% who’ve a complication after it.67 Even in uncertainty, there’s often a finite variety of choices for remedies and care. However healthcare ought to put together and permit enter from sufferers prematurely.
Shared resolution making is necessary in keeping with the Nationwide Institute for Well being and Care Excellence’s guideline NG197.8 Sufferers must be primed to ask about “BRAN”—the advantages, dangers, alternate options, and non-treatment choices9 of any proposed remedy. They need to even be able to take steps to optimise their well being earlier than remedy to assist enhance outcomes, as I did via train earlier than my hip substitute.10
The hazard with standardised pathways is that coverage makers oversimplify well being and healthcare. As we’re wanting time and the workforce is stretched, we’d like an empowered workforce working collectively, to agreed protocols. However crucially, the workforce and pathway needs to be led by senior clinicians who perceive the choices and complexity for every affected person, reasonably than a number of autonomous practitioners working exterior a workforce.
As a affected person and a surgeon, I belief the NHS to ship—nevertheless it wants to present clear details about what well being means for sufferers and groups.
Competing pursuits: Scarlett McNally is a advisor orthopaedic surgeon, deputy director on the Centre for Perioperative Care, and president of the Medical Ladies’s Federation.
Provenance and peer overview: Commissioned, not externally peer reviewed.