Chronic illness: How is your relationship with your doctors? Carenity members share their thoughts!
Published 1 Apr 2022 • By Candice Salomé
A key element of successful and quality medical care, a good relationship and communication between doctor and patient is essential.
What about you? How is your relationship with your doctors? Do you feel listened to and taken seriously? Do you feel supported?
We conducted a survey in the United Kingdom, the United States, and France to gather the opinions and feelings of Carenity members!
Discover what members had to say below!
754 members responded to our survey in the UK, the US, and France
We conducted a survey from 23 February 2022 to 23 March 2022 involving 754 Carenity community members in the UK, the US, and France.
Surveyed members' profile
The majority of members who participated in the survey are living with multiple sclerosis (14%), type 2 diabetes (8%), fibromyalgia (6%), or ankylosing spondylitis (6%).
40% of members surveyed were diagnosed less than 5 years ago.
The majority of Carenity members questioned have been treated by the same medical team (52%) since their diagnosis.
Why have members chosen, or not, to stay with the same medical team since diagnosis?
48% of respondents have chosen to change their medical team since diagnosis. They cited the follow reasons why:
For the majority of participants, the reason for their change was for logistic or technical reasons: a move (55%) or their doctor's retirement (23%).
However, 25% made a change because they did not feel heard, 17% because they did not feel understood, and 14% did not trust their doctor.
52% of Carenity members who responded to our survey are still being treated by the same medical team. The reasons are as follows:
66% of them trust their team, feel well taken care of, and listened to. 15% have seen their health improve thanks to their medical follow-up.
What relationship do patients have with their doctor(s)?
The majority of patients (57%) feel comfortable asking their medical team any question they may have and 39% tell share their expectations and needs. 35% are able to be proactive in their research about their condition and openly talk to their doctors.
However, 22% do not communicate about their fears and anxieties, 13% do not share their needs and expectations with their doctors and 8% do not dare to ask their doctors questions.
What improvements can be made in the care provided by patients' medical teams?
The improvements most desired by the members surveyed are: information on new medical techniques, protocols and advances (23%), greater open-mindedness on the part of doctors on possible alternatives to drug treatments (18%) and more transparent communication (15%).
How have online patient communities helped to change the doctor-patient relationship?
We asked Carenity members if their relationship with their doctors had changed since they started interacting on health forums such as Carenity. This was the case for only 16% of them.
Nevertheless, some see a real benefit in the relationships they now have with their doctors. They feel that they are better informed about their condition and equipped to broach topics like the side effects of their medications, alternative treatments, etc. They share the information they discover on Carenity with their doctors and understand their condition better.
93% think that it is important to be able to inform oneself about one's condition for the following reasons:
40% have a better understanding of the symptoms associated with their illness, 32% feel that they play a more active role in their health, and 24% can now better anticipate their symptoms.
Give it a "like" and share your thoughts and questions with the community in the comments below!
Take care!
Sources:
Carenity survey conducted from 23 February to 23 March 2022 in the UK, the US, and France.
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4 comments
Thank you for giving the results of the survey.
It is interesting seeing the facts and percentages which explain so much more!
The trouble with chronic illness/disease, here in the UK is that you hardly ever get to see the same GP twice, and so as a result, whomever you do see, doesn't know you, your problems, your personality, how you usually walk or act, or your history, nothing. You only have 10 minutes for an appointment; 9/10 times you're rushed through said appointment, with the doctor typing on the computer as you speak; so they're not looking at you or really listening fully. The amount of times things have been written in my notes which were completely incorrect are too many to mention, but all of them have been important facts like my dad and grandma having gastric cancers when I presented with stomach problems; it was written that my uncle and grandad had them, so I'm lucky that I was actually referred to fast track and diagnosed with lymphoma!
Referral to specialists is long winded and tedious, again, they don't listen to you in either triage or the actual specialist (that's if you get referred from triage) because again, they're typing up notes and time limits are constrained. 9/10 times they haven't looked at your notes or reason for referral beforehand too! It's like banging your head against a brick wall trying to get a diagnosis; it took my eldest daughter 20 years; I have always been told by GP's 'It's wear and tear' when I've had an appointment for back/hip/joint pain and they've given me opiates/anti-inflammatory meds, then sent to physiotherapy, which on the NHS is worse than the actual pain you're in! My younger daughter and I have both been told that we have the gene (HLA-B27 which causes Ankylosing Spondylitis among other autoimmune problems) and we're waiting to see a specialist now, that's after suffering since we were both children, in her case 31 years, mine 55 years. It's disgusting!
@YorkshireJayne ... Sorry to hear what trials you have been through. Being a person with epilepsy, I understand your thoughts so well.
Coming to Northern Ireland from Africa has been quite an eye opener for me. For almost 5 years now, I feel I have not been listened to by those in the neurological field. After trying 6 epilepsy medications and now on my 7th, my doctor cannot make any decisions on dosage or change without the neurologist's approval. It seems like a constant fighting battle.
I agree with your comments also regarding physio. In 2018 I had severe lower back pain, tried physio for 6 weeks which made it worse, and eventually had to tell the physiotherapist that the damage was probably caused by taking epilepsy medication and being on HRT for several years. Only then was I sent for a DEXA scan, and osteoporosis of the spine and osteopenia of the hip was diagnosed.
I have had bad neck pain for months now, and am currently under a physiotherapist. I have had one appointment so far, and xrays have been requested. Exercise will not solve the neck pain. It needs massage or other treatment, but it seems massage is not even considered when attending physiotherapy appointments.
My doctor/GP is caring, he listens to me and is a gentleman at the same time. I know physiotherapy is a waste of time, but will request xrays and take it from there.
It is frustrating when one has to do telephone consultations, as that does not give the patient a proper diagnosis.
I literally feel your pain! 😆
I have had neck problems for years now too and was sent to a pain clinic after an MRI scan showed discs pressing on nerves. Since then I have had 6 monthly occipital nerve block injections in the left side, the migraines I suffered at least weekly have stopped and the pain in my arm (think constant toothache-like pain) is only there when they are wearing off. There are risks involved, but I would rather be without the pain/migraines!
I thought HRT prevented osteoporosis and epilepsy medication was meant to help nerve pain? I was on HRT for 20 years before my (female) GP told me that it was time for me to go into the menopause naturally (I was 53) so time for me to come off it! Boy did I suffer then, for weeks and weeks I was snappy, in constant tears, wet through with sweat every time I moved and so tired. Then friends told me about some natural supplements and within a week I was so much better. I now only have the odd hot flush if I get worked up about something and no other symptoms of that. But the epilepsy meds never stopped nerve pain, and just gave me a hangover effect all day (I took them at night).
Discovering that I have this gene, after 40 years of pain and suffering, going numb below the waist, having surgery to relieve the pressure causing that, is just the tin lid on a huge boiling pan of frustration. Had they thought to do tests other than the normal inflammation levels all that time ago, I might possibly be in less pain now! It all boiled down to cost at my last GP surgery, I am so thankful that we moved house and had to change surgeries; without that, I would never have had the check-up and been diagnosed with hypertension nor would my gastric symptoms have been diagnosed as cancer. I'm a great believer in fate.
