Wondering if anyone else in Ireland is having the same issue. I had a BMB in the summer and only recently have I asked for a copy of the results, as in Ireland we don't have the likes of patient portals etc. .. My doctor at the hospital told me they are not allowed to give out copies but they sent a copy to my GP and to ask them if they could print me off a copy. So I asked my GP receptionist for a copy and they said, of course no problem, only to discover my hospital never sent them a copy, they didn't even know I had one done. So they asked me to contact my hospital and ask if they could send them a copy (once they received it they would print me a copy). So I rang up my hospital and I told whole story to them, only for them to say no, we don't send copies to GPs and they won't and actually asked what Doctor told me they sent a copy to my GP to as they are wrong. If I want a copy I'm going to have to apply through the freedom of information act, and even that's not guaranteed.
So what turned from me just wanting to read over my results purely out of just curiosity and because i find it all very interesting, has now turned into a big ordeal and now my Doctor who I actually really like might be in trouble and I'm quite upset about it all. If I knew it would be this hard I never would of asked for a copy and now I have to wait until start of December for my next appointment to see if my Doctor is mad with me if they did get in some sort of trouble -(that could just be me overthinking but I can't help it).
Sorry for the long post but I'm just flabbergasted by it all and I officially give up trying to get a copy of my BMB results.
Take a shot every time the word copy is mentioned in this post lol
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Charm33
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Wow. That is a shock. I do think you should be entitled to all of your test results regardless of what they are. I just received a letter which stated that they were conclusive with e.t that was it. I am in UK but I would say I would also like to know what else they discovered. I really hope you get some answers back . Your doctor will understand as well. That is what they are there for don't worry about it. You could of just made everyone in your health system realise that something needs to change x
Wow. Flabbergasted is an understatement. I have never heard of outright refusal to release test results and making it out as if a crime to do it. Not understanding what the reasoning is behind this. Hoping your upcoming appointment goes well and an explanation is shared. Please take care.
The response you received is truly outrageous and a violation of fundamental patient rights. The information is yours, not the hospitals. It is up to you to decide who can see the information, not them. I would not back down on your very reasonable expectation to be able to see the information that is your property. This kind of denial of access reflects an outmoded authoritarian approach to medicine that does harm to patients and damages the relationship with the provider. Neither you nor your doctor did anything wrong. Your request was reasonable and your doctor's response was appropriate. The problem lies with a medical bureaucracy that is clearly not committed to quality patient care.
The response you received is not acceptable. It is worth fighting the system when the system is so clearly wrong in it's policies. Your doctor is not the one who should be in trouble. The doctor tried to do the right thing. It is the medical bureaucrats that deserve a disciplinary response for their wrong-headed thinking and inappropriate response to your request.
This kind of inappropriate behavior can only continue when it is tolerated. Suggest that this is not a time to be tolerant nor to give up on accessing the information that is your right to access.
Thank you, I may need some time to work up some courage to keep on at them, as I have quite bad social anxiety and it took a lot for me to even ask let alone make them phonecalls. I was nearly in tears to the hematology secretary when they were shutting me down, and my sister, who was sat beside me at the time, couldn't believe how rude and heartless tone was used with me. .. At my next appointment I will ask again and il tell GP what exactly was said to me - "no we absolutely never send GPs BMB results as they wont know what they are looking at" - as I'm sure they won't be happy about that either. I have another BMB next summer, so I may need to fight for them results too.
This is a fight worth fighting. No one deserves to be treated the way you describe. I am not sure what part of Ireland you are from or the details of the regulations regarding patient information, but it seems highly unlikely that they regulations would be so outdated and restrictive in any modern country.
I believe that patients in Ireland have the right to access their medical records under the Freedom of Information Act 2014 and the Data Protection Act 2018. themdu.com/guidance-and-adv....
There is similar regulation in Norther Ireland if that is where you are. You have the right to receive a copy of these under the General Data Protection Regulation (GDPR) and the Data Protection Act 2018. If you wish to access your health records from your GP, surgery staff or Health Trust you should do so in writing. nidirect.gov.uk/articles/ac....
Suggest that before you move forward on accessing your information that you acquaint yourself with the specifics of the relevant regulations. Base your accessing records in the specific regulations and processes. In addition, rude and uncaring responses from administrative staff are never acceptable in any system of care. This behavior undermines quality of care and is simply inhumane. It warrants a formal complaint and disciplinary action.
Please let us know how things go as you move forward. Wishing you all the best.
No guarantee you’ll get access here either! Some hospitals, like Guys, are really good and have My Chart portal where you can access results, documents etc, my local hospital started a My Health app then abandoned it. It’s proving very difficult to access my results.
Yes it used to be a nightmare in Scotland and in the past I had to get a court order and pay the hospital to get access to my records. The hospital still don't like to release information, mostly because it shows how badly organised they are.
Could you write to the hospital requesting the information? That way you don't have to speak to anyone and you have a record of your request. I would send the request to the CEO of your health board and the legal department. Give them 5 or 10 working days to answer. If you get a "no" go to your politician. Again you can write instead of phoning. With writing you have a paper trail so if you want to use a lawyer you have evidence.
Good luck from an elephamt who has learnt to stand up for herself.
Agree its very patchy in England. The MyHealth family of patient portals is run by EPIC. Can be a disaster ( see the Cambridge Adenbrokes experience: Wikipedia) or , if the hospital wants to make it work, as Guys seem to, can be excellent. Maybe this is something we could influence?
wondering if you have a PALS system in Ireland? Through them, I was able to get copies of all my mums notes for her recent hospital stay - all 300+ pages, both handwritten and typed, and all arrived within a week. There must be a system for getting your notes. You are entitled to see them.
In Wales, my wife rarely gets to know any scan results or blood test results by word, and never any printed copy. Myself I had numerous scans over my fall off my bike in January 23 and had scant results conveyed to me, and one of them taken back once I read it and then replaced by another, which had many things redacted. Talk about broken NHS. It's more like protectionism, so long as the patient knows nothing the safer the NHS feels from prosecution for negligence.
It makes no sense that they keep your GP in the dark. They are responsible for your overall care - how can they care for you if they don't know the test results relating to your MPN, and what is happening in your blood and bone marrow?
All I can say from here in the deep south,That's is disgusting. This is your health you are wanting to know about and for someone to do this and keep your information from you is beyond comprehension for me . Hope you get the report.
I cannot believe what I read here. In South Africa (Cape Town) - If the GP request a blood test or X-Ray/Sonar, I normally drive straight from his rooms to the radiology or pathology rooms. Except for some mri or other more serious scans, the wait for blood tests/x-ray or other scans never longer than about 30 mins. IBack home I would open the related app on my phone and get my full blood results within 3-4 days (GP normally gets it next day and would call during afternoon to discuss it - my BMB results took 7 days) . All my blood results (with commentary from dr's) remain on my profile.
Should I feel the need to have (for instance) a full blood count - I can walk into pathology rooms without GP or specialist's prescription - explain what I need done, pay about €5 -8 and have the test done as "private". Same process - results available on my app in 3 days time with all other previous tests/results available.
Should I go to a specialist (other than my GP) I would sign a letter giving him permission to open my app and have all Radiology/bloodresults ever done in front of him!
I thought South Africa was lacking in some ways but I was stunned reading about your experience regarding your own blood results!!
Surely it's the patients' right to have access to their medical records. I am Irish, but live in the north of Spain ans was diagnosed with Mylofibrosis February of this year post TE since 2019.
Wow so sorry about the complete neglect your experiencing regarding getting your records in a simple and well deserved manner. This should NEVER happen! This past week I had a similar experience as you!! My experience had to do with getting a very urgent Phlebotomy. I've had PV for over 20 years and have had standard 2-3 month phlebotomies when my HCT is at 45 or over. (I'm not on any medicine but aspirin) These phlebotomies has been fairly easy and efficiently done. I spent summers in Alaska which has excellent seamless medical care and rarely a problem. I spent winters in Arizona where there hasn't been a problem until this week.
After 9 weeks my HCT had risen to 52 which has never been that high for me and I had been experiencing dizziness for over 10 days thinking it was low iron not high HCT. After several days of the wrong form, horrible communication between infusion centers/medical schedulers......to make a long story short...........the scheduler FINALLY calls me after waiting for a call for days when I'm in Safeway shopping. She causally says oh our next appt. isn't until next Tuesday! My form says urgent with ASAP written across the top.
I completely LOSE it in Safeway and am screaming at her that this is a medical emergency and there's a good possibility I'll stroke out by then. The gal stocking selves came over and gave me a hug and other people were just staring. Well guess what she calls back 10 minutes later and said we can get you in this Saturday!!! Nobody told me that they have Saturday hours open at their infusion center for urgent matters!!! I'm an urgent matter for gods sake! By the way they had several openings at this infusion center. Nobody volunteered this info. I'm happy to report that my dizziness has gone away and I live to see another day! 👍
Guess my point with this whole story is there are times to REALLY advocate for yourself and if that involves screaming in a Safeway store or where ever you are at.........DO IT so you can get the proper care!! Your record situation is one such time. Do not worry about a doctors feelings ever! You are the one living with this MPN. Demand results and answers or change doctors which I've done. Time for you to get tough and demand that those records be given to you ASAP. Squeaky wheel gets the grease!! Best wishes........Kerry
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