Have errors in your medical records impacted your diagnosis and management of multiple sclerosis? Here are some of my thoughts on this endemic problem in the NHS.
It’s eye-opening - and safe to assume the actual prevalence is much higher. Not many people have the time, attention or motivation to review their medical records. The figure reported today likely represents significant under-reporting. I’d hazard a guess that a systematic review of records would find that the majority include frequent inaccuracies by multiple clinicians.
For me, there’s a deeper level overlap with some of the issues that came up last week when you responded to the patient angry at the cost to his health of poor care. I.e., lack of attention, consideration and consistent standards. Also, it’s clear that doctors aren’t listening closely when patients communicate - or they’re presuming to override what they’re told. At the worse end of medical practice, the inaccuracies deliberately conceal mistakes, shifting responsibility snd accountability rather than owning it.
The thing is, not many doctors are as highly and sincerely motivated as you. You’re shocked by these things because you assume your peers are working to the same motivations and standards that you are. Many are not, which is why stories like this surprise few patients who have long-term and multiple interactions with healthcare practitioners.
All of your points about the systemic issues are fair and important - but medical culture is part of the problem too.
Culture change is difficult and the systemic drivers aren’t going to get easier in the near future, so for me this is an opportunity area for AI.
Tech exists now that could be easily adapted to accurately take and record medical history - for example through standard written or audio questions in advance of appointments. I think it’d also be worth considering what options exist for consensual audio recording of appointments for the same purpose, using AI tech to accurately record key data - also saving clinicians time and bureaucracy.
All so true. I find I have to act as project manager of my chronic conditions. Having been diagnosed with MS for 20 years I’ve become quite used to it -but when dealing with MS and having to manage all its administration it’s exhausting. Three points. 1. We’ve just moved and transferring healthcare within the NHS is draining -7 months in and my DMT prescription ( despite much work on my part) is still not transferred. 2. NHS IT systems do not ‘.talk’ to each other and neither does primary or secondary care. 3. An example -my GP didn’t know I was on Kesimpta and therefore that I was immunosuppressive..a fairly fundamental flaw..
I actually don't know where to start on this subject. All I can say is I have no trust in my care. The basic of systems need to speak to each other, the mistakes recorded in patient records, my GP not knowing what is happening with me in my hospital care, consultant letters for GP's and other consultants (that I get copied into and influence my future care) that bare no relation to the appointment I was at, or what I thought was planned or agreed to. I dread to think what some of my records say, but more so I am extremely concerned that these records are used at MDT meetings to decide my future without knowing me. These mistakes can mean getting treatment or not, its scary.
A transcription error led to a letter from my consultant to my GP saying I was "a lifelong smoker" rather than a "lifelong non-smoker". I wrote and asked for this to be corrected because I didn't want anyone to think the wrong thing about me!
I am so glad you’ve covered this. Last year I submitted a critical illness claim to my insurer to claim on a critical illness policy. What should have taken a matter of weeks to pay out, became a nightmare lasting almost 14 months, during which time the insurer denied the claim based on misrepresentation.
The major factor in this was the inconsistencies and inaccuracies of my clinical history, alongside significant missing data around the birth of my child - which if present, would have made it easy for me to prove that a trapped nerve (parasthesia meralgia) was as a result of pregnancy and not a pre cursor to ms.
After such a lot of time, distress and serious mental health impact, the insurer did pay out. But all of this additional stress could have been avoided if my medical records were accurate and complete.
This is a really important topic. When I requested a copy of my records for an Insurance reason two years ago, I was surprised to see no specific mention of my MS as an ongoing chronic condition. It also did not have recorded my DMT medication. (Which is prescribed in MS clinic not in doctor’s surgery) It had my Gabapentin prescription on there, but not that it was given to me because of my MS symptoms. I also noticed that there were a number of occurrences of a UTI that were not on there, one had been quite recent and the records were definitely up-to-date. I assume that the GP can view a full history in surgery? I also have ongoing issues with the multiple apps that are available via NHS. I had missed an appointment because a paper letter had not arrived and when the neurology clinic rang to say I had missed an appointment I said I checked the NHS Apps regularly for letters and messages and there’s no mention of an appointment letter to which the they replied. ‘Oh that’s not always up-to-date. it’s not very reliable’. It appears there is a disjoint between the multiple NHS applications and the amount of data that’s either uploaded or kept up-to-date.
Your right my consultant often write things to suit his research . Like I am fit or something like and alway missing out key information as in relapses and key simptons . I guessing his only interested in his salary .
It needs to be improved ..
Thank you bring such and very important subject . You may know the many from your earliest days.
its not only records - ive never been in my local hospital without a prescribing error -some of them must have meant someone else on the ward had recieved the wrong meds. they werent ms related. but thats not good
I was investigated during COVID pandemic when there was not access to MRI so I had a CT-scan which suggested widespread small vessel disease of the brain. My symptoms were attributed to stroke disease. When I eventually had an MRI the picture was of inflammation typical of MS which fitted my history. My diagnosis is now MS but I have seen reference to small vessel disease of brain still in my letters. This obviously will affect my supposed prognosis and perhaps treatment options.
I live in Scotland. In NHS Scotland we do not have access to current or past clinical letters, investigation results, prescription lists or any other aspect of our illness. We have to ask for copies of items one by one. This takes up clerical and clinical time as staff will ask the doctor if you are allowed access each time you ask. It does not feel like it is one's own case record. It is anxiety provoking because if I fcan ind a major error in the small small amount of my letters I have had access to then what else might be wrong? It can feel like wasting clinical time just asking and enquiring whether changes have actually been made.
We don't know anything and we don't know what we don't know! We are missing the very valuable check of seeing if our records match our experience and understanding of our condition. It also undermines the feeling that you have responsibility for your own MS management..
I kind of despair about some aspects of NHS Scotland particularly patient records. It’s a few years back now but my wife used to work as a nurse in an outpatient clinic and would have to spend far too much time chasing down records which were often found in amongst large piles of records waiting to be written up/ updated. Things are probably (hopefully) different now but I’m pretty sure that record keeping is just as chaotic. Personally, I doubt we will ever be able to get online copies of our records ( it beyond the capacity of NHS Scotland to organise and deliver . I read recently about a ‘great step forward in the use of IT for patients. The much lauded development was ——- the facility to send in photos or short video clips of your ailment’.
The problem is, good notes are actually really hard and take time! But it gets treated as something people can easily do offhand, with no time allocated or support.
In the states here…it is not just the NHS. It’s a widespread issue here also. For some reason, there is no coordination of information.There is also a great reliance on AI, which leads to myriad problems. For example, after a CT of the pelvis, there was a speculation on the part of the radiologist, wherever they were reporting from, that perhaps there was some gas in a certain area or perhaps I had proctitis. Bingo! I’ve got proctitis in all of these medical reports. And forget about getting medications accurate. That remains a horrific struggle. I was so fed up, I went as far as to look into what could legally be done about inaccuracies in medical records here. Thanks for this, Prof G. I empathize with you all.
For me, the issue is the way things fall through the gaps, most of which I would have thought well programmed computers could prevent. I don’t think that this has affected my MS journey, because I am a persistent individual and I usually get issues sorted, although I would say that this has got more difficult recently. Part of the problem is the structure of my medical record at the GP. A simple task seems to generate multiple, sometimes repetitive, coded entries. For example, there are 9 entries attached to my Shingrix Vaccine:
Coded entry Medically fit for immunisation (XaPwh)
Coded entry Advice on immunisation (XE1TP)
Coded entry Face to face consultation (Y290c)
Coded entry No (Y0428)
Coded entry Administration of medication under patient group direction (XaQA7)
Coded entry Immunisation consent given (XaCFi)
Coded entry Requires vaccination against Shingles (Y406b)
How does anyone see the wood for the trees? I’m hoping that the computer does most of the work, but if not, I feel that this is setting the HCP up to make mistakes. This happened with the diabetic nurse a couple of years ago. 15th June HCA records left foot deformity, 2 pages further on, dated the 20th July the diabetic nurse records no left foot deformity and says “The HCA probably just ticked the wrong box, but I can’t go back and change it, there are so many to tick.” This week I contacted the GP and said “Two years ago your diabetic nurse said I had resolved my diabetes and didn’t need specialist checks and monitoring. I’m still being sent diabetic retinopathy screening appointments, will you stop them please. They said “If you don’t want to go anymore, you need to tell the hospital”
I currently take Venlafaxine. I was prescribed it between around the year 2000 till about 2004 and then, basically continuously since September 2012 till now. Suddenly in 2023 I’m told I need my annual ECG, never had one before. Then in 2024 I’m told I was meant to remind them that I need an ECG. The computer doesn’t keep track of this then!
I started Siponimod in January. I tried really hard to get this shown on my GP record. I failed, in that all I achieved was the pharmacist adding it as an entry on the pages and pages of my record. My Dr daughter said “Nobody will find it there!” Then the GP wanted a blood test which they reviewed and said “your white blood cells are slightly low, I would like to retest in 4 weeks.” I looked at the blood test result , saw that only the lymphocytes were low, and said “That’s because the Siponimod is working. The fact I take it needs to be recorded somewhere.” Finally success!” This Dr said she has put an alert on the front page of my record.
According to the head pharmacist at Jardines pharmacy head office, the prescriptions on my GP record that say “Future dated” with dates attached that are 4 weeks apart, are not future dated. She didn’t seem remotely concerned that my pharmacy were able to issue 3 lots of monthly medication in 3 days. I was trying to obtain my Estriol cream, prescribed for the first time by the GP not UroGynaecology. I have switched back to ordering my meds one month at a time! This was after I had to send the GP a photo of the cream I had been prescribed by the hospital because apparently the letter saying prescribe an 80 gram tube of 0.01 % strength means the GP prescribed a 15 gram tube of 0.1% strength.
It’s eye-opening - and safe to assume the actual prevalence is much higher. Not many people have the time, attention or motivation to review their medical records. The figure reported today likely represents significant under-reporting. I’d hazard a guess that a systematic review of records would find that the majority include frequent inaccuracies by multiple clinicians.
For me, there’s a deeper level overlap with some of the issues that came up last week when you responded to the patient angry at the cost to his health of poor care. I.e., lack of attention, consideration and consistent standards. Also, it’s clear that doctors aren’t listening closely when patients communicate - or they’re presuming to override what they’re told. At the worse end of medical practice, the inaccuracies deliberately conceal mistakes, shifting responsibility snd accountability rather than owning it.
The thing is, not many doctors are as highly and sincerely motivated as you. You’re shocked by these things because you assume your peers are working to the same motivations and standards that you are. Many are not, which is why stories like this surprise few patients who have long-term and multiple interactions with healthcare practitioners.
All of your points about the systemic issues are fair and important - but medical culture is part of the problem too.
Culture change is difficult and the systemic drivers aren’t going to get easier in the near future, so for me this is an opportunity area for AI.
Tech exists now that could be easily adapted to accurately take and record medical history - for example through standard written or audio questions in advance of appointments. I think it’d also be worth considering what options exist for consensual audio recording of appointments for the same purpose, using AI tech to accurately record key data - also saving clinicians time and bureaucracy.
All so true. I find I have to act as project manager of my chronic conditions. Having been diagnosed with MS for 20 years I’ve become quite used to it -but when dealing with MS and having to manage all its administration it’s exhausting. Three points. 1. We’ve just moved and transferring healthcare within the NHS is draining -7 months in and my DMT prescription ( despite much work on my part) is still not transferred. 2. NHS IT systems do not ‘.talk’ to each other and neither does primary or secondary care. 3. An example -my GP didn’t know I was on Kesimpta and therefore that I was immunosuppressive..a fairly fundamental flaw..
I actually don't know where to start on this subject. All I can say is I have no trust in my care. The basic of systems need to speak to each other, the mistakes recorded in patient records, my GP not knowing what is happening with me in my hospital care, consultant letters for GP's and other consultants (that I get copied into and influence my future care) that bare no relation to the appointment I was at, or what I thought was planned or agreed to. I dread to think what some of my records say, but more so I am extremely concerned that these records are used at MDT meetings to decide my future without knowing me. These mistakes can mean getting treatment or not, its scary.
I now understand why my MS Nurse usually starts a session with her by running through my record!
A transcription error led to a letter from my consultant to my GP saying I was "a lifelong smoker" rather than a "lifelong non-smoker". I wrote and asked for this to be corrected because I didn't want anyone to think the wrong thing about me!
I am so glad you’ve covered this. Last year I submitted a critical illness claim to my insurer to claim on a critical illness policy. What should have taken a matter of weeks to pay out, became a nightmare lasting almost 14 months, during which time the insurer denied the claim based on misrepresentation.
The major factor in this was the inconsistencies and inaccuracies of my clinical history, alongside significant missing data around the birth of my child - which if present, would have made it easy for me to prove that a trapped nerve (parasthesia meralgia) was as a result of pregnancy and not a pre cursor to ms.
After such a lot of time, distress and serious mental health impact, the insurer did pay out. But all of this additional stress could have been avoided if my medical records were accurate and complete.
This is a really important topic. When I requested a copy of my records for an Insurance reason two years ago, I was surprised to see no specific mention of my MS as an ongoing chronic condition. It also did not have recorded my DMT medication. (Which is prescribed in MS clinic not in doctor’s surgery) It had my Gabapentin prescription on there, but not that it was given to me because of my MS symptoms. I also noticed that there were a number of occurrences of a UTI that were not on there, one had been quite recent and the records were definitely up-to-date. I assume that the GP can view a full history in surgery? I also have ongoing issues with the multiple apps that are available via NHS. I had missed an appointment because a paper letter had not arrived and when the neurology clinic rang to say I had missed an appointment I said I checked the NHS Apps regularly for letters and messages and there’s no mention of an appointment letter to which the they replied. ‘Oh that’s not always up-to-date. it’s not very reliable’. It appears there is a disjoint between the multiple NHS applications and the amount of data that’s either uploaded or kept up-to-date.
Your right my consultant often write things to suit his research . Like I am fit or something like and alway missing out key information as in relapses and key simptons . I guessing his only interested in his salary .
It needs to be improved ..
Thank you bring such and very important subject . You may know the many from your earliest days.
its not only records - ive never been in my local hospital without a prescribing error -some of them must have meant someone else on the ward had recieved the wrong meds. they werent ms related. but thats not good
I was investigated during COVID pandemic when there was not access to MRI so I had a CT-scan which suggested widespread small vessel disease of the brain. My symptoms were attributed to stroke disease. When I eventually had an MRI the picture was of inflammation typical of MS which fitted my history. My diagnosis is now MS but I have seen reference to small vessel disease of brain still in my letters. This obviously will affect my supposed prognosis and perhaps treatment options.
I live in Scotland. In NHS Scotland we do not have access to current or past clinical letters, investigation results, prescription lists or any other aspect of our illness. We have to ask for copies of items one by one. This takes up clerical and clinical time as staff will ask the doctor if you are allowed access each time you ask. It does not feel like it is one's own case record. It is anxiety provoking because if I fcan ind a major error in the small small amount of my letters I have had access to then what else might be wrong? It can feel like wasting clinical time just asking and enquiring whether changes have actually been made.
We don't know anything and we don't know what we don't know! We are missing the very valuable check of seeing if our records match our experience and understanding of our condition. It also undermines the feeling that you have responsibility for your own MS management..
I kind of despair about some aspects of NHS Scotland particularly patient records. It’s a few years back now but my wife used to work as a nurse in an outpatient clinic and would have to spend far too much time chasing down records which were often found in amongst large piles of records waiting to be written up/ updated. Things are probably (hopefully) different now but I’m pretty sure that record keeping is just as chaotic. Personally, I doubt we will ever be able to get online copies of our records ( it beyond the capacity of NHS Scotland to organise and deliver . I read recently about a ‘great step forward in the use of IT for patients. The much lauded development was ——- the facility to send in photos or short video clips of your ailment’.
This is why I review the notes after every visit.
The problem is, good notes are actually really hard and take time! But it gets treated as something people can easily do offhand, with no time allocated or support.
In the states here…it is not just the NHS. It’s a widespread issue here also. For some reason, there is no coordination of information.There is also a great reliance on AI, which leads to myriad problems. For example, after a CT of the pelvis, there was a speculation on the part of the radiologist, wherever they were reporting from, that perhaps there was some gas in a certain area or perhaps I had proctitis. Bingo! I’ve got proctitis in all of these medical reports. And forget about getting medications accurate. That remains a horrific struggle. I was so fed up, I went as far as to look into what could legally be done about inaccuracies in medical records here. Thanks for this, Prof G. I empathize with you all.
For me, the issue is the way things fall through the gaps, most of which I would have thought well programmed computers could prevent. I don’t think that this has affected my MS journey, because I am a persistent individual and I usually get issues sorted, although I would say that this has got more difficult recently. Part of the problem is the structure of my medical record at the GP. A simple task seems to generate multiple, sometimes repetitive, coded entries. For example, there are 9 entries attached to my Shingrix Vaccine:
Vaccination Shingrix 2 0.5 ml
Note
Vaccjnation consent Vaccination consent VARICELLA-ZOSTER (verbal consent given)
Coded entry Medically fit for immunisation (XaPwh)
Coded entry Advice on immunisation (XE1TP)
Coded entry Face to face consultation (Y290c)
Coded entry No (Y0428)
Coded entry Administration of medication under patient group direction (XaQA7)
Coded entry Immunisation consent given (XaCFi)
Coded entry Requires vaccination against Shingles (Y406b)
How does anyone see the wood for the trees? I’m hoping that the computer does most of the work, but if not, I feel that this is setting the HCP up to make mistakes. This happened with the diabetic nurse a couple of years ago. 15th June HCA records left foot deformity, 2 pages further on, dated the 20th July the diabetic nurse records no left foot deformity and says “The HCA probably just ticked the wrong box, but I can’t go back and change it, there are so many to tick.” This week I contacted the GP and said “Two years ago your diabetic nurse said I had resolved my diabetes and didn’t need specialist checks and monitoring. I’m still being sent diabetic retinopathy screening appointments, will you stop them please. They said “If you don’t want to go anymore, you need to tell the hospital”
I currently take Venlafaxine. I was prescribed it between around the year 2000 till about 2004 and then, basically continuously since September 2012 till now. Suddenly in 2023 I’m told I need my annual ECG, never had one before. Then in 2024 I’m told I was meant to remind them that I need an ECG. The computer doesn’t keep track of this then!
I started Siponimod in January. I tried really hard to get this shown on my GP record. I failed, in that all I achieved was the pharmacist adding it as an entry on the pages and pages of my record. My Dr daughter said “Nobody will find it there!” Then the GP wanted a blood test which they reviewed and said “your white blood cells are slightly low, I would like to retest in 4 weeks.” I looked at the blood test result , saw that only the lymphocytes were low, and said “That’s because the Siponimod is working. The fact I take it needs to be recorded somewhere.” Finally success!” This Dr said she has put an alert on the front page of my record.
According to the head pharmacist at Jardines pharmacy head office, the prescriptions on my GP record that say “Future dated” with dates attached that are 4 weeks apart, are not future dated. She didn’t seem remotely concerned that my pharmacy were able to issue 3 lots of monthly medication in 3 days. I was trying to obtain my Estriol cream, prescribed for the first time by the GP not UroGynaecology. I have switched back to ordering my meds one month at a time! This was after I had to send the GP a photo of the cream I had been prescribed by the hospital because apparently the letter saying prescribe an 80 gram tube of 0.01 % strength means the GP prescribed a 15 gram tube of 0.1% strength.
I mean. What on earth?