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How to get the best out of medical appointments…

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I am participating in this month’s Patients for a Moment blog carnival!  This month’s carnival is being hosted by Abigail at Hidden Courage.

The Patients for a Moment blog carnival is held every month and solicits submissions from bloggers regarding a topic related to illness, whether it be from the perspective of a patient, carer or a professional – the carnival is open to everyone.

This month’s theme is: getting the attention you need.  Specifically, getting the attention you need as patients within the healthcare system.   I am sure every patient, has been casually dismissed by a busy, overworked doctor, with a glance at their watch, counting down the time when we should be out, and time to see the next patient.

It seems as if doctors are constantly watching the time
It seems as if doctors are constantly watching the time

However, what is it like to be a patient with a long-term chronic illness, where it seems that we are constantly being dismissed by the healthcare system.  And what can we do to get the attention that those with chronic illnesses need and deserve despite often having difficult and challenging conditions which are not always easy to diagnose nonetheless treat.

As a patient with a long-term chronic illness; an illness which went undiagnosed for years, and one which was misdiagnosed as an anxiety disorder, I have at times felt ignored or dismissed by the healthcare system on countless occasions.  When I tried to challenge the doctors that the dizziness started before the anxiety, however, I was dismissed yet again, probably deemed to be a hypochondriac  and again sent on my way.

Being ignored and dismissed by doctors, and being constantly told that the symptoms you are experiencing are just ‘all in your head’ can be demoralising; especially when the symptoms that are supposedly in your head are for you, very very real.  A problem that I often experience is the lack of consistently in my care from the medical profession.  The surgery that I am registered with has several different doctors, and you are never guaranteed to an appointment with the same doctor.  This is a real disadvantage for patients with an unusual chronic illnesses as it means that you have to reiterate your medical history, diagnosis and so on at every appointment.   Also different doctors have different methods of working and ideas, therefore patients with chronic illness often prefer to see the same doctor for consistency in their care and to see a doctor that know their full medical history and familiar with their diagnoses.

So, whenever I make an appointment with my local GP Surgery, I makes sure that I ask to see my regular doctor – doing this also saves me and the doctor time as I don’t have to waste several minutes of the appointment explaining my medical history.

In the end I had to fight very hard to even get a referral to see a neurologist.  I was lucky that I had a strong support system in the form of my parents, and found it incredibly useful to have an advocate present during the appointment to stand up for me when I didn’t have the confidence to stand up for myself.

Another barrier that I have found is the routine questions that doctors often ask, such as asking to describe what the dizziness is like; however how am I expected to describe an experience that is so difficult to explain in words – especially when put on the spot.  Often I have found that there are so many ways to describe certain symptoms, and I cannot always find the right word to describe the experience of the dizziness, or trembling in my legs.  If patients are inconsistent in their account, doctors are then more likely to dismiss them and not take them seriously.

In order to avoid this barrier, and to ensure that I adequately describe the symptoms accurately and consistently I write my experiences with my illness (both physical and psychological symptoms), in a journal and then take it with me to appointments.  A second notebook is also very handy to take along to appointments in order to write down notes regarding the information and advice that the doctor passes along to you, especially helpful if you are likely to forget after the appointment has ended.  Not only is it helpful to make notes it also shows the doctor that you are a patient whom is pro-active in their approach to their own health, and also are a cooperative one.

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Keep track of your illness by journaling! And takes notes during appointments to get the most out of it…

So to reiterate; in order to be taken seriously by the medical community and not to be dismissed by doctors here are my tips on how to get the best out of appointments:

  • Do not be afraid to advocate for yourself to get what you need in terms of referral, treatment and so on.  If you are unable to do so for whatever reason then perhaps take someone along to appointments so they can advocate on your behalf
  • Try and get appointments with the same doctor to get consistency of care and prevents you from having to divulge your entire medical history at every appointment
  • If you can, try keeping a journal or even a small notebook where you can keep account of your medical condition, such as symptoms – the frequency, severity and whether certain treatment or approaches seem to have any impact on them
  • To show that you are a cooperative and pro-active patient, take notes and ask open-ended questions at appointments which will less likely result in you being dismissed by doctors and other medical professionals
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In Chronic Illness

Don’t judge others for you do not know their story…

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On Wednesday at the ‘Life 4 Living‘ group that I attend, we had a very interesting seminar on Diversity.  In the seminar we were split into two groups and given a laminated sheet with a picture of an island, and a deck of cards with pictures of a diverse group of people, with only their occupation listed on the cards.  We were then told that a ship carrying the people on the cards was in an accident, which resulted in the ship sinking and the people being stranded in the middle of the ocean.  Each group had a lifeboat – however, on the lifeboat there were only spaces for 10 people, and hence we had to decide who of those people to save and whom to leave in the water.

This was obviously very difficult as the only basis we had to make our decisions is what they looked like and their occupations.  During our discussions we decided to save a doctor and nurse, to treat those with medical injuries, a carpenter to help build shelter from the bad weather, and gardener’s to help grow crops and nutrients whilst being stuck on the deserted island.

However, we soon learnt that the doctor who we chose to rescue was in fact a doctor of music and not a medical doctor.  And the nurse, was a veterinarian and so would not be very useful in treating human patients!  And the people whom we rejected, for example, the biker as we thought he looked like he would cause trouble, would in fact be extremely useful in an emergency situation as he was a surgeon.

This exercise, however, taught us how we often make judgements based on very little information causing us to make snap decisions on the type of person we are busy scrutinising.  We are too busy scrutinising others; determining the type of person we believe them to be instead of seeking out the person’s story.

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Many of you spoonies reading this will surely understand this; particularly those with invisible illnesses as we are often victim of others’ judgements.  For example, once I went out, and forgot my crutch.  Due to the problems with my balance, I was all over the place, and as a result, a woman came up to me and accused me of being drunk.  I have heard many other stories, of spoonies whom have been victims of incorrect assumptions made by others – people who have been accused of misusing a disability badge, because there were no outward signs of illness or disability, and thus were labelled as being healthy, and in no need of using a disability parking bay.  There are endless examples of these types of anecdotes that have been shared by spoonies everywhere.  I am sure everyone reading can think of at least one example from their personal experience.  Please feel free to share your experiences in the comment section below.

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So, the game that we played at Life 4 Living, and through the experience of living with an invisible illness, has taught me to not make assumptions about people, without getting to know them first.  To not assume that a person has no wounds, or illness because there are no scars; no signs of illness or disability as not all wounds, illnesses or disabilities are visible, many are hidden as if keeping a secret from the outside world.  And as the quote above also tells us, we also shouldn’t judge so quickly or harshly as we may find ourselves walking in that person’s shoes.

Perhaps if we weren’t so quick to judge in the exercise at Life 4 Living then we may have chosen the people that would have been useful whilst being deserted on that island, instead of those we chose based on our preconceived ideas regarding their abilities and resources that they would bring.

 

This is a lesson that we all must learn….

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In Chronic Illness

Sick to Chic!

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With all the falls that I have been experiencing lately, the crutch that I bought myself last year has taken quite a battering!  The crutch itself has dents, scratches – some of the damage that has been caused by the falls has even caused some cuts on myself.  Where the paintwork on the crutch has flaked, it has caused the paint to sharpen; and it is these sharpened points that has been causing cuts on my legs and feet when I have had falls in the house.

Also, the anatomical moulded right-handed designs have become uncomfortable, and where it has rubbed against my fingers, a callous has formed there!  So I thought that I would treat myself to a new crutch – one which would be more comfortable and not cut me!  I remembered reading online on a forum that I often visit, that one lady recommended an online store that sells crutches at a reasonable price.  And therefore I headed to Chic Aid Crutches to look at the range that they offered.

And what I found was impressive!  Chic Aid Crutches offers an impressive range of different crutches, including full cuff crutches, half cuff crutches, designer crutches and even folding ones!  And even more impressive is the wide range of colours that are available!  We have all seen the standard NHS crutches – they are heavy, uncomfortable and the grey colour just looks dull and boring.  Using them, feels depressing as they are just not fashionable!  Why should we be sick and be unfashionable with it?  Especially when we have the option to use a bright,  colourful and fashionable mobility aid which feels comfortable, lightweight and what’s more is fun!  It does not feel like a mobility aid but rather a fun fashion accessory!

After purchasing the crutch, the delivery time was fantastic – I only waited a day for it to arrive, and the crutch was also well-packaged and with no damage to the crutch whilst it was in transit.

Lately, I have really come to love the colour orange – its bright, fun and is a colour that instantly cheers me up.  It’s a reminder of a beautiful sunset.  And it’s because of this, I chose an orange colour for my new crutch.  A beautiful and cheerful colour that will look lovely during these Summer months.

My brand new crutch
My brand new crutch

 

And it has some great features – a padded foam covered handle – which is very comfortable to use and what is even more great is that it doesn’t rub against my finger.  The height can be adjusted in tow places – the height from the floor to the handle, and between the handle and the cuff.  This is great for me, being short!  It is also very lightweight and is quiet when it’s being used; great for when I am in the house and my Dad is in bed after working nights, as the NHS standard crutches can be noisy when being used.  Another fantastic feature and incredibly useful is the black Pivoflex ferrule, which provides increased stability with their ‘flex’ action – a feature that is great for me, due to my balance problems, and so a mobility that aid that provides increased stability really is a must-have feature.

I really love my new crutch and perhaps one day I will buy more from Chic Aid Crutches and look chic and fabulous whilst being sick!

Thank you Chic Aid Crutches!

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