Just wanted to share that I am reading a beautifully written book ' Some of us may fall' by Polly Atkin. Interwoven with descriptions of her surroundings in the Lake District, she writes of years of unexplained health problems. Looking back over her hospital letters she reflects '(they) show how much the Doctor has not listened, or has forgotten or misunderstood . (They) make me wonder how they could possibly comprehend the complexity of my life in my body'. Does that sound familiar? Available in some libraries I believe .
Off topic? no: Just wanted to share that I am reading... - NRAS
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Stayloose
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Thank you for the recommendation, I shall look out for this book.
I know from my own personal experience how true this is and at times there are things written about you that you don't recognise or are simply not true. Take care xx
That is so true. I today had a letter from the local MSK team (referred to for herniated disc and other spinal problems). I have, in the past, been a senior orthopaedic sister and had written a concise history of my back investigations so that he had a full picture. The letter was a mish-mash of his examination and bits of my information which made no sense at all. I wanted to get the red pen out, rewrite it and go and push him into a bed of nettles!
It’s an insult and a devaluation to you as a patient if you are mis-represented and also can be dangerous if something vital is left out. Doesn’t happen often but when it does it gives health professionals a bad name and goodness knows the NHS needs all the help it can get!
It's very frustrating. I received a letter today from the orthopaedic clinic. I gave a concise history but could write a better letter when I was age 12. It would have been better if I had written my own letter.
I did write my own letter at the request of the GP, when I returned a factually incorrect, ramble of a letter from her to support a holiday insurance claim. She still charged me £130.
Meh!
If you look on on line at your NHS record held by your GP……you will consider yourself fortunate if they get your date of birth right because that’s virtually the only thing that’s right on my record .
You’re so right. My medical record held on Patient Access from my surgery is a mess of missed-off major illnesses/ surgical procedures, inaccurate reporting of what I arrived at the surgery with and for, outdated drugs -particularly those prescribed by rheumatology (really bad news if you were ill) and other badly recorded consults. I despair!
🙈
Many years ago before my RD and co reared their ugly heads I was at my previous GP surgery when I saw something alarming on the screen in my records, when I questioned this it came to light that there were more than one person with the same name as me (different DOB/address but same name) and her information had been put onto my records. So I requested to read my medical records and it's amazing what you find out from them! Again years ago I was once billed for a woman (may be the same one) with the same name for unpaid prescription charges while she was at A & E. I was abroad at the time and on taking this bill to the hospital they insisted it was me!! I had to then get proof that I was not even in the country and after a lot of stress they finally admitted the hospital number was different. I tell you, you couldn't write it...but it seems they do!! 😀
Eeeek!
You are so right about completely random medical notes. I have written out a complete account of all my health issues, medication and treatment and give it to every medic I see. I just hope they read it !
From personal experience, highly unlikely! I live in hope………🤬
I love your comment re the nettles!
My story is similar I too was a ward sister for many years on both elective and orthopaedic trauma wards. I suffered with my back from my early 20s, always blamed on the job. I remember once, I was 29 and sent to A&E having injured my back transferring a patient to her chair, when she chose to lift both feet off the floor. Me being the shortest took the brunt of the weight. The registrar in A&Etold ne myback X-ray showed I’d have serious issues going forward, but didn’t elaborate, and I was too shocked to ask. Fast forward 18yrs and I was referred to rheumatology with severe neck and pelvic pain, gp was convinced it was polymyalgia, but as I was 47 and not 50 it couldn’t be. It took 6 months before they accepted atypical polymyalgia. 3 months after starting steroids, I developed most GCA symptoms, except vision. My jaw was agonising, temples burning, scalp painful to touch, and vascular lesions on my tongue. They continually refused to accept it was GCA. I’d put pictures of my tongue on the PMR charities forum, and a medical adviser for the charity got in touch, asking what me rheumy said. She was horrified and requested I get an urgent referral to her, which my gp kindly did. She was 250 mile away. The care there far surpassed my local experience. She did a special coloured ultrasound which confirmed the GCA. However she also suspected an overlap with spondylarthropathy when I told her about the pelvic and neck pains. Local rheumatologist refused to do scans, when Leeds did it showed my sacroiliac joints were fused, and my ribs were also fused,which she explained is probably what had been seen 18yr earlier, and that all my years of back pains were flares. Unfortunately I had to be referred back to my useless team for funding of the biologics I urgently needed, as I had an aggressive form of ankylosing spondylitis. My colleagues used to keep saying I should write a book. As mentioned by others, often the written summary bares no similarity to what occurred in clinic. I’m currently going through issues of medics not listening. On holiday I overdid my activity, and started experiencing my knee buckling, thought it would settle after reducing to normal activity but it didn’t. I fell in the shower when knee gave way, gashing my leg. A week after the fall the knee became excruciating, unable to stand on it, even standing not putting weight was excruciating. All medics have focused on my back despite telling them I fell because knee buckled, I didn’t slip or trip. My symptoms are classic tendonitis, A&E gave me a week course of steroids early July which helped, but returned with a vengeance when finished. I’ve had CT scans, and MRI of spine and pelvis, but little concern re my knee, which has now made me housebound. My gp still insists that my knee issue is from my spine. Ironically I’m on high dose steroids for a chest infection and exacerbation of asthma, and again knee is improving. I’ve had an MRI on my knee by A&E last week, which wasn’t reported on, and orthopaedics say shows severe arthritis. I specifically asked if inflammation was seen at the tendons, and their only response was you need to speak to your rheumatologist 🙇♂️
Sorry this wasn’t meant to be a war and piece post 😂, but it feels good getting it off my chest 🤗
It’s a wonder any if us are still standing and retain a sense of humour! This forum is brilliant for getting things off chests cos there aren’t many people other than those of us who suffer all these bloody set-backs that understand anything to do with RA and its cousins and aunts and relations making life miserable! There, I’ve just got that off my chest!
I have rheumatoid and osteoarthritis, severe asthma, bronchiecstasis and I’m steroid dependent, yet on my medical notes it says I also have MS!
Mine must be written by a clairvoyant. It states that I had an operation seven years ago that in fact I only had in February this year.
😂😂😂 oh how this site keeps us entertained.
I am an academic in computing and every time I hear a colleague talk about patient records and algorithms or AI I quickly remind them of GIGO - garbage in, garbage out. And I would go one step further, NIGO, nothing in, garbage out.
These are often men who have rare or only occasional acute interactions with medicine, things like chest infection, broken limb or some other discrete single episode. They have no idea what an electronic health record looks like in reality, and the large amount of missing or incorrect information.
AI isn't the worry, it is the humans behind it and their biased view of reality!
It’ s like the Chinese whispering game.
Patient tells doctor….who scribbles on notepad….or rarely types on pc….nurse/secretary cannot decipher either….but has no time to ask…so updates patient record with what she thinks Patient/Dr meant.
Patient reads info input & thinks they have something so awful the doctor won’t tell them .
Best not to read any of it really…….
My GP is definitely clairvoyant. I had what I thought was an infection in a recently operated toe so called the GP’s for potential antibiotics. I received a text to send photos. At that time I was in an appointment at my osteopath so couldn’t send them however half way through my appointment a GP called me to say he had looked at the photos & was prescribing antibiotics as it looked infected. Erm 🫤 I told him I hadn’t sent any photos. His response wait for it. Oh well someone in the community must have sent them in!!
You couldn’t make it up 🤷🏻♀️
I had been with my present GP for about a year & had a f2f consultation to discuss something else & I happened to say “I don’t think it’s RA related”. Her reply was..”What makes you think you have RA?” So either it’s not on the record she sees….or she hadn’t read it.OK nothing on my prescription is RA related…but I would have thought “How long have you had RA”? might have been a more suitable question. I couldn’t be bothered to explain…..and I guess she still thinks I imagine I have RA.
So accurately put and utterly nightmare-ish!
Thankyou for the recommendation
Aw lovely. I know Polly, she’s a great writer & a mighty advocate for disability (&chronic illness) rights. I’m so glad you’re enjoying her book - she’ll be thrilled.
On you tube (I think), I watched Polly being interviewed about the book. She had received a big response from 'fellow travellers', not so much from the medical sector. Hmmm. She made a very gracious comment as to why that might be 😊 I am nearing the end of the book but will reread it underlining parts that really speak to me. ( Not a library book).
Spooky - just downloaded from Amazon (as I find it hard to hold a real book) but it is Some of Us Just Fall - next in line for reading when I finish my current book
Sounds good. I will read it.
What really scares me is that for those of us who are not medically trained, whose knowledge is somewhat limited, we have to rely on our medical professionals and they are getting it wrong. What do we do?
Thanks I will have a look for this x
It is unfortunately true, mostly (I feel) because of the way they are trained. Most are not trained to find the cause of a problem but only to treat the symptoms with pharmaceuticals. We have a brilliant system for emergency services. Can't beat them if one falls off a mountain or has a really nasty accident. For chronic health issues I personally think there is room for improvement. Medicines do not work for everyone, plus such medicines are either the 3rd or 4th leading cause of death.
I'm in no way saying all medics are bad, or that all medicines are bad. Antibiotics save lives! Docs are simply trained from a pharmaceutical bent.
I guess some GPs might say that that is what the patient demands.
Yes because it's what they are used to, although I think probably less so after the last three years. The cracks are showing.
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