Mind the Gaps!

I decided that I wanted to be a doctor when I was around ten years old. I was fascinated by science and medical matters and in a classic, but naive way, I “wanted to help people”.

One of my best teachers was my younger brother. He was profoundly disabled, especially in his later years, with Duchenne Muscular Dystrophy. Growing up with Iain taught me a lot of things, including much about healthcare and the relationships between patients and the professionals caring for them. I graduated in 1988, a year before he died, aged 21.

Over many years since, I’ve noticed that there are several barriers that stand in the way of us helping our patients. Some of these are built in to our society, and are difficult to solve. As we mark fifty years since the Inverse Care Law paper was published in The Lancet, many of the issues regarding inequalities and the social determinants of health remain apparently intractable problems.

On a more individual level, however, there are some barriers that we can help to break down. Over time, on Twitter and elsewhere, I have enjoyed talking to a lot of people about what I describe as the three “gaps” that are in play during any consultation or “episode of care”.

I cannot claim the idea of the “three gaps” as my own, but I’ve never been able to find an article in the literature outlining them in this format, so a blog post feels a bit overdue.

The doctor patient relationship has many imbalances in it, and each one is important, yet subtly different. All of them can be mitigated, at least to some extent, if we have the insight and the motivation to do it.

Recent experiences for me both as a patient, and as a relative, have reminded me how pervasive these asymmetries are in our interactions.

The list is here, and we can cover them one by one…

  • The knowledge gap
  • The power gap
  • The arousal gap

The knowledge gap is, in some ways, the most obvious one, and in theory the easiest one to address. Indeed, many people with long term conditions have learned so much about their particular illness that the knowledge gap is now reversed, and they know significantly more than the health professionals treating them.

None of us should feel threatened by that. Indeed, the best strategy is to welcome it and work in partnership to pool the patient’s and the doctor’s knowledge and experience to navigate a way through the challenges faced on life’s journey.

For many people though, the knowledge gap is still wide, and this is not necessarily a reflection of intelligence or education. Many highly educated individuals still have very limited health literacy when it comes to the workings of the human body.

They may also have quite specific ideas or expectations about how fixable problems are, perhaps influenced by their experiences elsewhere in life. Engineers of all levels are sometimes puzzled when all the right levers are pulled and buttons pressed, yet the biological variability of the human body means that the machine doesn’t splutter back into action like a broken down car after the jump leads have been applied.

Almost every patient (or their immediate family) will turn to Google to find out more about their problem, both before and after they have sought help. There is a lot of high quality information around, but also a lot of nonsense!

As healthcare professionals we need to be mindful of this and offer signposts to the better sources of knowledge and guidance.

Leaflets can be helpful, but they need to be in an appropriate format and at the right level. This is a challenge when the target audience has a wide range of backgrounds. We also need to remember that some people simply don’t want to know more, and are happy to be steered along the journey by the professionals accompanying them.

We all draw on a range of sources and experiences for our knowledge of medical problems. Both the doctor and the patient may have biases. If Auntie Mary got better after trying the home remedies recommended in the tabloid newspaper, why would you not want to try them? The professional may also be influenced, perhaps by the fact that the last patient with that condition had an unusual side effect from the standard treatment regime.

This brings us to the next gap, which is the power differential between the practitioner and their patient. I don’t think I realised how important this was until I had some personal experiences in the last few years.

In some ways, the “power gap” is the trickiest one of all. It is simultaneously reassuring & terrifying to be on the “conveyor belt” of an efficient department. Suddenly you find yourself completely out of control of what the next step is. You are swept along as part of the process, with or without consent.

As a patient, you don’t know how things work, or even what the “process” is. Indeed, for hospital outpatient interactions, you may not even know where you are on that conveyor belt? After your GP has made the referral to the specialist, the wait until the appointment arrives is intolerable, especially if you perceive that you might have a life limiting condition.

I’m sure I’m not the only person who has phoned up repeatedly to try and find out when a pending clinic date might be. But how do you know who to phone? Many patients with established diagnoses do know a number or a person to call, but at the start of the journey, most probably don’t even know that there is a nurse specialist that you can call, or the contact details of the clinic or consultant.

No one wants to be a difficult patient, but can you even be sure that the referral has gone? Healthcare professionals aren’t infallible and things do get lost in the post… Should I phone? Or should I wait? The power imbalance is very definitely skewed, and hard to cope with.

Of course, once you are “in the system”, it’s difficult to challenge anything that is happening to you. Lots of conditions are now managed using pre determined “pathways”, designed to ensure that all patients get optimum treatment.

Many departments run clinics on the basis of a “one stop shop”, to try and deal with the entire episode in a single morning. So an individual may have a very busy session at the hospital with multiple scans and even biopsies and treatments. All this without pausing to draw breath and check in with the patient regarding how they are coping with each stage of the process.

A friend of mine had this experience a few years ago, when she developed an overactive thyroid gland. In the “old days”, when I was a Registrar, this condition would have been managed over a series of outpatient appointments, with pauses between them to take stock of scan results and discuss treatment options. However, in the modern and efficient world that we live in, the entire journey was “concertina”d for my friend into a single day. She phoned me later that night to ask what it all meant. All she knew was that she had had lots of tests. Then they had made assumptions that aged 40, she had completed her family, and had given her some treatment. She had been told that she wasn’t allowed to hug her husband that evening because she was “radioactive”.

My own experiences too, are that you are expected to submit to the routine of the clinic, and have the tests you are recommended. The system at the breast clinic which I attended a while back was very efficient, but there was little in the way of consent involved when they proceeded to scan the “other” breast, not just the one with the offending lump. That one turned out to be a cyst, but we then went down the rabbit hole of having to investigate the incidental findings on the other side…. Precisely what I had wanted to avoid!

Despite having some knowledge of what they were doing and why, I had no power in the situation. Or, at least, it felt that way.

Which brings us to the final “gap”, the “arousal gap”. No, this isn’t a sexual thing, it’s about how “on edge” the patient is and how much their autonomic nervous system is firing. Or, putting it more bluntly, how terrified they are!

If you are a doctor working in a hospital, or a GP in the surgery, then you come to work and yes, you are hopefully fully engaged in the process, but at the end of the day, it is “just another Thursday”. If you are a specialist, you may be telling several people a month that they have a serious diagnosis, so although you never become blasé about it, it’s all in a day’s work for you.

But, for the patient, any consultation is anxiety provoking. Even apparently routine interactions cause your pulse to quicken and your blood pressure to rise. When you add in the additional stress that you have convinced yourself that you are going to die, leaving your children motherless and your husband widowed, it doesn’t make for a relaxing discussion.

So while the healthcare professionals are trundling happily through their day’s tasks, the patient in front of them is somewhere on the spectrum from mildly concerned through to being paralysed with fear over what is to come.

The difficult question is how we can resolve these challenges, or at least ameliorate them. Giving people time helps, and so does writing things down. This might feel as though it’s time wasted in an initial consultation, but may ultimately save time later. An educated, informed and relaxed patient is definitely easier to work with for everyone!

On another of my interactions with the NHS in recent years, one of the real heroes was my GP. I needed to see a Neurologist, which is, almost by definition, a scary experience. There were recommendations, medications and further investigations to be sorted out afterwards. I was overwhelmed, despite having been accompanied to the appointment by my very capable, though non medical, husband.

The GP was brilliant. Dr Best by name, the phenomenon of nominative determinism prevailed. He sorted out the initial practical issues straight away, and gave me a time and a date for a further appointment a few days later, when we could discuss some of the other bits and pieces that needed to be arranged. I am deeply grateful to him, even now.

Far too many blogs, articles and speeches end with the statement that we need “more awareness” or “more research”. This is important, but I think it’s also important to think of some practical tips for people (on both sides of the gaps) on how to deal with them. Here are some suggestions:

  • Be aware of the gaps, whether you are the professional or the patient.
  • Take pen and paper to appointments, or ask if you can record them,
  • Offer to write key things down for your patient.
  • Give people time, if you can.
  • If you know anyone who has attended the same clinic, get their advice on what the format is likely to be.
  • By all means do some research in advance, but be mindful that when you read statistics (eg 80% of breast lumps are benign), you are an individual, and your outcome will be your own, more binary one.
  • Print off leaflets for people or suggest good websites they might look at. http://www.patient.co.uk is a good start.
  • Be clear about what the next steps are and be as specific as possible.
  • Manage expectations. Eg “it’s usually a three week wait for this clinic”.
  • “Safety net” by telling the patient that if they haven’t heard by, for example, the end of next week, to call back.
  • Give people a number to call if they have further questions, or a follow up appointment that they can bring them to.
  • If you are the patient, ask the questions needed to get these answers if they aren’t offered.
  • Where possible, take someone with you to the appointment.
  • Offer people the chance to bring someone with them.
  • Get to know your patient, even briefly to explore their health literacy. What are their ideas, concerns and expectations?
  • If you are the patient, volunteer what your worries are. This gives the practitioner the option to confirm or refute them and explain why.
  • Remember Maslow’s hierarchy of needs and try to ensure that your patient is comfortable in the clinic environment. Apparently superficial things like car parking, closest bus stops or tricky locations to find are actually really important. And that’s before we get started on access to toilets, coffee and of course WiFi!
  • If you are a manager and looking for efficiencies, remember that doing something as fast as possible isn’t always the best option. Taking someone on a journey one step at a time may work better for them.

This list of tips is a deliberately mixed up one, for lots of reasons. As healthcare professionals, we need to see things through the same eyes that our patients do. Unsurprisingly too, we also sometimes end up becoming patients ourselves!

Being a patient does give additional insights into how we can be better providers of care. We can still always do better though, even if we haven’t been offered the opportunity to walk a week in someone else’s shoes…

9 thoughts on “Mind the Gaps!

  1. Such a good read, well done and thank you. The empathy you have ,and describe , seems to be lacking once you are on the conveyor belt of diagnosis/ treatment. The 3 gaps are very real, particularly the “arousal” gap; when I went for my first op in hospital, I felt as if I wouldn’t be able to get through doorways, my desire to put my arms out was palpable. However I had brilliant care and understanding, which was so vital and helpful.

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  2. Nice article Trish.

    I would love to see two innovations- patient held records (even if that is a diary) that HCPs review for questions and comments and that they write (briefly) into. This will facilitate reflection and discussion (with other significant people) outside the brief contact with HCPs.

    Electronic chat facility (email, text, whatever else). Again, it will allow patients to communicate in the best possible way when their arousal has settled down and they have had a chance to reflect. It will allow the HCP to respond when they have time, rather than trying to dump everything within the brief clinic contact (or rather multiple brief clinic contacts).

    Liked by 1 person

  3. A good read and I agree with all the ‘gaps’. I’d also throw in an honesty gap – we run our health services on a relative shoestring but pretend our services can match other systems with double the funding. Its not sensible to expect people to make judgements about the quality of services without some understanding of what can and cannot be provided through the underlying cost framework – but for whatever reason no govt ever wants to level with people about this…in my experience they always find it helpful to understand.

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  4. I wish my old GP had read this blog – or indeed been as patient aware as you. No one should have symptoms dismissed, which happens to women all to often. And everyone deserves empathy. A few years ago my bowel events were construed as gynaecological – clearly I was deemed to be “hysterical”. This is what happened. Thank you for your fab blog, just discovered! https://fortewinks.com/2015/07/12/a-brief-skirmish-with-cancer/

    Liked by 1 person

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