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.

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.

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