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💬 Discussion Topic: How does your ba... - Research Opportun...
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💬 Discussion Topic: How does your background or how you grew up affect how you think about healthcare?
AnnaHUHealthUnlocked
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AnnaHU
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I grew up not knowing where we would get food and clothes or if we would lose the house. I had state health insurance as a kid, but that meant bad doctors and long waits. Because I was severely disabled by a rare brain disease at age 24 when I was a student, I never got the chance to build a different kind of life for myself. I’m still insecure and dependent. I can’t even find a proper PCP or dentist. I don’t trust any doctor or insurance company or pharma.
Thank you kitnkaboodle for being so honest about your experience. If you feel comfortable we would love to know your thoughts on our lastest discussion topic asking how you could improve trust within the healthcare providers: healthunlocked.com/research...
My father was a medical doctor, so if we were ill we were told take an aspirin or put a bandage on it. My father failed to diagnose a broken arm, it was HIS arm.
Well, we only went to the drs if we really HAD to. Mother would say ‘oh it’s not that bad’. I’ve had many ‘accidents’t as a child, from age of 3, which has been pointed out as child neglect. Over the years I’ve had neglectful treatment by the medical profession, not once but quite a few times, where ‘care’ was far from good. Being a qualified Complementary Therapist of 24yrs, I want to be included and informed about my health and care, so I can make an informed choice. This is not welcomed by drs, particularly those of a certain age and sex. I have NO TRUST left, because when I try, it go’s wrong.
My health in the last 4 yrs has been challenged beyond my endurance, through few accidents and SVT, PAF & T2D! Then, finally diagnosed with Haemochromatosis, which most likely to be associated with the heart and dire betes. Getting GH recognised, particularly Compound variant is nigh on impossible due to outdated education or even lack of it. Constantly fighting to get the tests and assessments I need.
My younger brother who was autistic with mental health issues died by Asphyxiation on MK hospital, had compromised airway and drowsy, fed tuna sandwich with no supervision.
I am deeply sorry to hear of your loss. We hope that by being part of this community we can create improve the healthcare providers understanding of patients to improve the lives of those who are dependent on the healthcare system.
Well I had made my complaints and asked questions of MHUH I have not had direct answers to all the questions and concerns in the hope for them to explain their lack of care and attention. I have gone back and pointed out this and questioned their response which was not different to the inquest details they gave which does not deal with any of the negligent care. Although I have had a response from their representative I am expecting my letter to be ignored.
As they say “the cobbler's children have no shoes”.
In England as a child our doctor was a family doctor who knew his patient list and cared. He mixed with the community and he was a good and kind man. As the village grew into a small town and the family doctor died his practice became a 4 man band. We were lucky to have good kind caring people but by the time I was an adult teenager with more and more people moving to the area and with a change to practice doctors the care they gave became more impersonal. As an adult I have lived in a new area (for over 30 years now) and the standard of care has diminished. In my late 40s I was diagnosed as an alcoholic suffering empty nest syndrome (odd as I had never been blessed with children) in fact after about 10 years it was discovered I had a rare to uncommon auto immune disorder of the liver. I have since collected 3 more auto immune disorders and osteoporosis all of which have either been a lucky catch or because I pressed for blood tests and diagnosis. I believe that in the training of our young professionals "care" has been removed from their learning process. I also believe that with the population explosion and advancement in medical knowledge being a doctor is a profession not for the feint hearted. Today the general population benefits from web sites such as Health Unlocked where people can discuss their symptoms and be helped by others on what to search for or how to cope and how to get a diagnosis.
Thank you for taking the time to respond to this discussion topic. We have just posted a new question asking about trust in healthcare providers, I would love to know your thoughts on how to build trust as the population increases! You can answer the post here: healthunlocked.com/research...
I have no faith and do not like the NHS . I had epilepsy from age 6 to 16, and they said I was attention seeking, so I missed all my school. They only found it 16, at the back of the head as they did not exam all the head, only the front. For the last 5 years I have been extremely ill loosing blood, kidney stones , passing out unconscious with lab reports of ecoili and being anemic with High blood pressure and they just say there is nothing wrong. Head injury 2 years ago. still suffering, been diagnosed as functional neurological disorder by one Dr and cervical headache under private who gave me physio which has helped big time. Also suffering from severe dizziness and told nothing wrong despite several ear infections. FND every Dr is saying that just means they can't fine anything wrong. I know lots of women in my area who have the same symptoms and are going through the same as me. The DR on cruise ships seem to treat you better and have helped me big time, expensive but it is worth the money. So the true saying is western doctors will not help if they can't do an operation or give you pills, and it seems to be true by experience. The covid system was a mess by the NHS as well.
I am so sorry to hear of your experience in your early childhood - that must have been an extremely difficult time for you. I am glad to hear that you have had a positive experience with your physio - and on the cruise ship! Would you always choose to go private over the NHS now?
I was born in 1935 with a then undiagnosed rare condition PCD. I lived through war in air raid shelter dug into back garden clay, always damp. When during air raid shelf fell and flattened nose, before raid finished and with return of daylight local doctor came and stopped bleeding with cottonwool, returned few days later to check and tried to push nose back to centre. Didn’t charge for this, even though before NHS. I compare his attitude with that of today doctors and some consultants.
Your local doctor sounds like a hero ❤️
Most people go to the hospital only when they are sick in my country. Most of them prefer self medication and can only see a doctor when they are seriously sick. This is because there's no good healthcare system, no insurance and everything is out of pocket. Growing up, there was no regular health check up except if it's necessary to see a doctor. I take my health and that of my loved ones seriously so didn't allow my background to affect me. I see my doctor regularly even though I do everything possible to minimize the amount of medicines I take.
Reading all the replies so far I must have been really lucky with my GPs as only had a couple who weren't very approachable. Consultants a different kettle of fish needing me to be firm in stating my case.The only big problem I had with GPs was in getting them to agree with me that I had CFS. They treated me for depression for 5 years even though I told them on first appointment and continually over the 5 years that I did not. At that time CFS was thought to be all in the mind.
I have like everyone else have had big problems with gaining hospital treatment both during and since COVID. Prior to that getting a GP appointment was not a problem unless you stipulated who you saw, which I always did as had a good rapport with those particular GPs.
Getting a face to face appointment at the drs is almost impossible but on 3 occasions when they could not diagnose over the phone I was seen.
Getting appointments for Hospital treatment is much harder however. Hours and hours waiting in A&E, even when in atrocious pain. Also criteria for operations has been changed, for example Gall bladder removal. Kept in hospital for 4 days sent home but told it was urgent it was removed. Nearly a year later it took even though I went to A&E in the interim.
I am lucky in that I have some savings and have paid privately this last year for treatment for chronic back pain as I could not cope with the pain any longer and wait was over a year on NHS. I cannot however continue with private treatment and trying to get private health insurance is a non starter as they do not cover pre- existing conditions of which I have many.
I do admire the staff who are battling through but I also need help.
Maybe not the right forum for this but I do wonder if we all agreed to pay a little more on our taxes to be allocated specifically to the NHS for Drs and Nurses etc NOT managers etc and ring fenced so it couldn't be used for anything or anyone else whether this might be an answer. We can't really blame healthcare staff for going elsewhere when their pay us so bad.
However, Drs contracts need amending as at the moment they do not have to work for the NHS for a set number if years but can just qualify and then go abroad or straight into private practice, surely they should give something back.
Thank you for providing such a detailed response. Do you think trust in healthcare providers would improve people's experiences further? We would love to know (by answering our new post): healthunlocked.com/research...
I was a pudgy infant, a chubby child and a blossoming overweight teen. I hated doctors from the earliest of age. The only thing they focused on was my weight. My mother was 4'9" and weighed only 98 pounds most of her life. I was the biggest girl/woman of anyone in my family at 5'6" and a very curvy figure in a family of tiny women. I was punished my whole childhood for being big. Even when I had a cold, the conversation was about weight.
My whole health situation with my chronic kidney disease is because when I started to have issues with joint pain, the doctor refused to test me. The only thing told to me was to lose weight and take 1800mg of ibuprofen daily for almost three years. Once my hands started to curl up into claws, I was finally tested. I have psoriatic arthritis and psoriasis. Damage was done to several of my joints, including my back, and I damaged my kidneys. I had all the symptoms, classic PsA, but the doctor refused to see beyond my size.
When I was finally sent to see a Nephrologist, after my labs came back with CKD stage3, I saw a resident. He only spoke only of my weight again. There was no discussion of renal diets or medications. It was not until many years later that I became self-educated on renal diets and care for CKD.
AND..... I was originally refused for transplant because of my size. Even though I lost close to 50 pounds, I was still over their BMI restriction. I went for a consult for bariatric surgery because I could no longer lose weight. I was denied because of the CKD. I went to the Nutritional Center connected to the Bariatric surgery and they told me after seeing my diet journal that my own diet was better than theirs. They use package processed items; I do not eat anything but whole foods. I went on Ozempic and developed pancreatitis.
About two months ago, I found out that actually my BMI was lower than the cutoff all this time and they never told me. Because the original tests for transplant were over 2 years ago, I just went through all the testing again. The nuclear tests I had done 2 years ago came back with some issues. I never followed up with them because of the weight disqualified me for transplant... so I thought. The same tests done last week came back with absolutely no cardiac issues, no blockages and no ischemia. My cardiologist was flabbergasted. I am waiting to hear from the team on whether they will put me on as stage 1 priority with time accrued.
I worked in healthcare as the Director of Education for the U of R Medical Center, Home Care Division for many years. I worked with patients and families navigating the process of home care. I worked with clinicians to help them understand the gap of patient care and understanding. Our health care system is extremely bias and discriminating in many ways. Although I am part of the National Kidney Foundation's Diversity Board, you never hear much about the discrimination of people of size. Even in today's world, there is blatant rudeness and lack of care for patients of size. These patients are afraid to see a doctor because they know they are going to be treated poorly. This includes equipment too small to object disgust from providers. And many of these patients wait until they are in crisis to get the care they need.
Even my Nephrologist, who I have been with for many years, and my cardiologist are just now talking about the issues of metabolic complications and the lack of science behind diet and weight loss. Here in the United States, we are supposed to have the best of medical care. The stigma of people of size automatically being unhealthy has to change.
Bassetmommer , your health journey sounds hard, but you continue to remain strong and optimistic which is such a triumph. After all these years, how do you continue to have trust in your healthcare providers? I have just posted a new discussion topic asking this very question: healthunlocked.com/research...
I was born at home. The doctor said, "It'll be a long time yet, I'm going for my lunch." As soon as he'd gone, labour went to the next stage. The midwife said, "Shall we call him back?" My mother said, "No, we'll manage without him, won't we?" By the time the doctor returned, I was there. That set the tone.
My great grandfather was a pharmacist who believed that pharmacists are superior to doctors. They are certainly more easily available, and are trained to know the difference between what they can handle and what needs a doctor.
My father had the old-fashioned Yorkshire attitude that to stay healthy you should keep away from doctors.
I did a science degree. I often ate my lunch with friends who were studying medicine. They had often spent their morning in the anatomy dissection class, and had developed a very dark sense of humour to deal with having to study corpses. Having seen so many as students, I am not intimidated by doctors. Nurses in hospitals sometimes threaten to call a doctor if they think you're being awkward, and are surprised when I don't seem scared.
I was once a first-aider, which is great training for coping in emergencies, and dealing with minor injuries. I'd rather deal with trivial ailments myself than see a doctor, not because I don't want to bother them, but because I don't want to bother _me_. I have 3 useful reference books - the St John's Ambulance 1st aid manual (run it under a cold tap, and advise them to see their GP - well it's more complicated than that of course ...), the "When to see your doctor" booklet sent out by my GP (take paracetamol, see your GP if it's no better in 3 days) and the SAS Survival Handbook, which assumes there is no doctor within a day's walk so actually tells you what to do.
hiya! i grew up in the usa, and remember seeing a pediatrician in his office in the basement of his house. highlights fir children magazines in the waiting room, and lollipops when the exams were done. ah, the seventies. we went there when the white bits popped up on the tonsils, yearly checkup, and school stuff. dr g was kinda grandpa - ish.my folks tho... my father thought he was a self care guru: i know shiatsu, i can get rid of your cold by pressing here and you visualizing throwing the germs in the compost pile, and i only need three hours of sleep per night because i put myself in a trance first. when i wasn't able to do the same at age six, i had failed at life, it seemed. my mother was a big believer in orange juice and aspirin. Gatorade, saltines, and broth after a stomach upset. everything that took more time than this, especially after the folks split up, she seemed to take personally. i had chronic strep throat for a few winters, because the antibiotics disagreed with my stomach, so i had a throat of horror plus toilet trouble; she decided the thing to do was stop the antibiotics before the end of the course so she could go back to work. the year they split, i had spasms at the top of my stomach so bad that food wasn't going down. it was due to stress, yes, but i was eleven, and psychosomatic still doesn't mean 'making it up'. but the non loopy making muscle relaxers were too much (?), so after the first bottle, she did not refill.
i learned pretty quick that asking for medical help was met with bad stuff. anti-help. now in my near mid fifties is when I'm just starting to get the hang of asking for help.
I am glad to hear that you are finding the confidence to ask for help - it is never too late. How has being part HealthUnlocked helped you seek help?
every time i have spoken up on here, there has been some good result. from just being friendly to asking a question, to venting when i'm frustrated or comforting someone or looking something up. every. time. retrain the brain! i've been seeing health psychology for about twelve years now too. acknowledging positive even if teeny outcomes has been a big thing; they add up to make negative experiences smaller, if i simplify it.
learning. every. day.
AnnaHUHealthUnlocked
Thank you for taking the time to share your experience
I regret that I was born with rare condition PCD. It’s become more difficult recently, but when I think back I recognise that except for when I pushed to get consultation few years ago I’ve been let down by NHS. ,my late husband also had terrible 14 year battle with prostate cancer. I have relative whose children are doctors, and when parents need consultation or treatment they appear to get it quickly and thoroughly even though they are in different area to their offspring.
according to general newspapers and Tv, the autumn jabs for Covid and flu are available from 11 September. I’m with large surgery in Midlands and told that jabs will not be available until end of month, and cannot book in advance.
I was born in England after the introduction of the NHS. So when I was growing up if you needed a doctor you went and sat and waited (often a long while) to see a doctor. If you had an accident you went to A and E. If vaccination was on offer - the local paper advertised it and you called in the surgery to find out session times - then you sat and waited again. Or if you had a Mom like mine you stood outside the surgery instead, while she kept an eye on the queue. Infection control and all that. .
Thank you paddington for sharing your experience of the NHS.
We grew up very poor because my Dad passed away when he was only 34 and left 3 small kids for my Mom to raise. However if we needed medical care, my Mom somehow found the money. My Mom had great respect for the medical profession and so do I. I have never had a real problem with a physician and if I did, I quickly found another doctor. I show up to appointments with notes and questions for physicians. My family is very proactive with medical care, last year I was diagnosed with cancer. At first symptom, I was at the doctors office within two days. I did my research and asked a trusted physician who they recommend, their choice was spot on. I received excellent care from a very proactive gyn/oncologist. I am now in remission so far but will not hesitate to go for care as soon as necessary. We live in a small rural town in the southeastern US but do not hesitate to travel 60 to 100 miles to get the best care.
Hello Opie__ I am glad to hear that you had a trusted support network in your medical physicians. Remission - what a tremendous feeling you must have had to receive this news. The dedication you have to learn about your health and what is best for you is inspiring.
Improve trust - is a difficult one as we are all different . NHs has the issue of not being able to tell a relative anything without permission but if we don't know we can't pick up the pieces . I didn't know my sister had been discharged from hospital , what medication she had been put on or her care programme and my sister was too ill to acknowledge family help was in her best interests however I found out such a lot when I was phoned at 3am by concerned paramedics who needed a key to her home and a kind neighbour said I had one . After finding her in her bathroom the paramedics started asking me questions . I knew no answers and then it was highlighted as to what a plight I was in . I don't know what the name is - but ideally someone like a family advocator who was available to help both patient and relative / carer to have a better understanding of what they are dealing with .
We have to be trusted as carers then we may trust and understand the reasoning behind treatment , medication , time spent in hospital as I only could meet my sister outside the ward - never let in to see her bedroom where she was convinced her things I brought in were stolen or missing .I didn't meet her key nurse as I couldn't talk as she was ushered out to meet me . I never knew when her CPN did home visits until after she had been .
Can see that staff have guidelines but relatives can be very useful . When they want to know something they ask . When I want to know something I can't .
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