A post intended to advise/help/support patients facing surgery.
One of the benefits of being ‘a generalist’ (as distinct from a specialist) is the capacity to see issues in their widest perspective – and to identify solutions that experts sometimes miss.
In this post I offer an overview of the trip-to-hospital process from a carer’s perspective: before diagnosis, meeting the consultant, pre-operative preparation, what to do before and on admission, and the critically important post-operative stage that will either support, or bear down on recovery. I hope that this insight will help future patients and those struggling with the process.
Before diagnosis
It would be wrong to say that the period of time before diagnosis is the most stressful, yet often not knowing is harder to bear than receiving an opinion. At least on diagnosis you can plan.
Pre-diagnostic waiting lists in the NHS are a nightmare, so funds permitting, consider booking a private consultation to establish causation of your symptoms and list options. Rather than undermining the NHS private scoping supports it, filtering issues that may not be amenable to hospital inpatient care, and accelerating resolution of those that are. If you can afford to do so, set aside a modest private consultation fund on a monthly basis to earmark for such eventuality.
Meeting with your consultant
Here, it really pays to be organised. Many patients report that they neglected to mention an important feature during their consultation. Statistics show that 40-80% of medical information provided by healthcare practitioners is forgotten immediately. The greater the amount of information presented, the lower the proportion correctly recalled; furthermore it seems almost half of the information that is remembered is incorrect.
Consultants are aware of these statistics and most will be agreeable to a request to sound-record the consultation on your phone. Always seek your consultant’s permission for this, explaining your reason to avoid misinterpretation. Alternatively, ask a relative or friend to accompany you: someone who will ask the questions that you may overlook. Your consultant will encourage and support this choice.
Consultations are intended to be a process of information sharing from the consultant to the patient, with your clarificatory questions at the end. They are not suppose to be a dialogue. To get the information you will need to listen, wait and be patient. Make notes if you think this will assist. Ask your questions at the end.
Information sharing
New patients arrive at their consultation as a blank canvass. Consultants have surprisingly little information before they meet their patient. They may be armed with biopsy results from pathology, or detailed analysis of image scanning. But as for your medical history (which could be pivotal regarding diagnosis) they know nothing, save for that which your GP has considered relevant and provided beforehand.
You can help your consultant by preparing a chronological digital summary of the more significant events from your NHS App record. This will provide background information, for example, when pain was first detected, particular symptoms occurred, and treatments that may have been forgotten over time. Your consultant will not have had access to this information. It may not be pertinent, but having a digital summary could make a world of difference to test options and even diagnostic processes and will always be appreciated.
A little about your NHS Health Trust’s EPR
Once admitted to secondary care (hospital), an Electronic Patient Record (EPR or equivalent) is opened for each patient. Each and every test, intervention and outcome will be recorded and thus available for subsequent clinical care staff. Of course, it doesn’t really work that way, as the EPR acts frequently as a digital sump, with inefficient mechanism to retrieve basic information quickly. This is why you may be asked the same question multiple times by different clinicians.
Needless to say, with EPR this should be unnecessary. Part of the clinicians’ duty of care towards their patient, especially one vulnerable through cognition, pain, anxiety or age, is to access information already provided before seeing their patient. A gentle reminder that the information they seek is ready to access on EPR will enhance clinical practice in this regard!
Preparing for your operation
With such a wide spectrum of surgery or other medical interventions, it is impossible to provide a definitive guide. Here are a few tips on topics that are sometimes overlooked.
What to take: the grab bag – It is really helpful to be prepared well in advance of your surgery date. It should be modest in size to contain two sets of night clothes, dressing gown, slippers, flannel, comb and toiletries, wet-wipes, fresh underwear, notebook and pen, phone charging bank and cable, AirPods (always useful on a busy ward), a banknote secreted in a safe zip pocket, and a book to read. Add a visible identification tag with your name and NHS number to the bag, for believe it or not, personal items go missing in hospitals.
What not to take: for this reason, leave behind all jewellery, watches, handbags, wallets, purses and other valuables or items that may be difficult to replace.
Advance arrangements: make these in good time for your hospital stay. They may relate to pets, plants, gardens, home security or other dependants. Whilst you may expect a single overnight stay, patients occasionally face unexpected delays of cancellations, surgeon unavailability, or clinical crises.
Parking: unless you are very fortunate with your NHS Trust, hospital carparks are a stress-nightmare and parking charges can be swingeing. PayByPhone, RingGo and YourParkingSpace are three apps that may be useful, allowing you to park without cash and extend your parking time if required. Allow time for the likelihood that all the spaces are taken. Alternatively, simply book a stress-free Uber from your home, or from a stop-off low cost carpark enroute if you live at some distance from the hospital.
The day of your operation
Following the steps set out above will reduce some of the stress of your operation day – not least because preparing for surgery gives our brain the opportunity to come to terms with what is inevitably a challenging event.
When presenting at reception, to avoid delay in information-sharing, have your notification letter to hand. Jot your NHS number, full name, date of birth and GP surgery details on a slip of paper just in case – it is surprising how many patients struggle with this information. Keep your reading book, phone or magazine to hand whilst in the waiting area. A personal water bottle is always handy unless you have restrictions on hydration. Experience shows that patients who are accompanied are often more relaxed than those that attend alone.
After surgery
It is quite impossible to cover the range of eventualities post-surgery, but planning will reduce the stresses at this time. It’s not just a case of the pick-up from hospital, but consider arrangements once home, especially if your recovery is to be delayed or further medical events arise. Issues with mobility, nutrition, personal hygiene and day-to-day support should be anticipated, especially the threat of isolation that will impair recovery.
Family, friends and neighbours may be of critical assistance in this regard. Absent these, consider arranging some paid support, whether for personal care, shopping or administrative assistance.
Our mental approach
Our grandparents spoke of ‘mind-over-matter’. Your mental state may not cure you, but recovery is certainly enhanced by positive thoughts and delayed by negative ones. Having the right mindset requires mental preparation during which we contemplate a range of outcomes and options. Good news will inevitably give a boost, but the possibility of likely challenges should not be disregarded. Option-planning helps frame the mind and ease the soul. Talk about these with those friends and family that can cope with such conversations and are close enough to speak openly. Remember, surgery may be just the beginning of a journey rather than the destination.
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