Let me say at the outset, I'm eternally grateful for the NHS and how it has helped us since Steve was diagnosed with mesothelioma in 2009. However, there are odd occasions when it can be very frustrating from the patient/carer's point of view, such as the failure of the triage system the night we needed it (blog entry 14 October 2012) and the shambles over the Christmas/New Year when appointments for X-rays and assessments got out of sync and Steve's treatment was delayed as a result (blog entry 17 December 2012) although that worked out best for Steve in the end, as it happened - he needed a break!
We have just experienced another one of those occasions. Not a really big issue, but one that is frustrating because it was foreseen and could have been avoided if one hand of the NHS had paid attention to, and acted on, the request of the other hand.
Please don't read any further if you are likely to get upset by a whinge...It's just my way of letting off a bit of steam! If you happen to be involved in the NHS, then please read on, take notes, put yourself in our position and if the circumstances I describe apply to where you work then please think about what you can do to avoid such situations occurring in future. And then do it!
Anyone with mesothelioma will tell you about the importance of scans - how they become the yardstick by which those with the disease and their carers measure and arrange their lives in short chunks of time, rarely daring to look beyond the date of the next scan and follow up meeting when we find out the results.
Pain may not always be a sign of disease progression; neither is the absence of pain a guarantee that the meso isn't growing. It is only by looking inside the body, either crudely with an X-ray or in more detail with a scan of some sort that it's possible to assess with any degree of confidence whether the disease is active and aggressive, growing, spreading, stable or reducing in size.
Is it any wonder therefore, that we all get twitchy, anxious and stressed in the run up to a scan, wondering what the news will be? So much depends on the outcome of the scan - whether we can heave a sigh of relief that there is no change; celebrate like we've won the lottery when there is shrinkage; prepare ourselves for more treatment if that is an option, or face living with quality rather than quantity of life if options have run out, or the thought of having more treatment with all the attendant side effects is no longer tenable.
I think it's fair to say that it takes an expert and experienced eye to "read" scans and assess whether there has been any change when compared to the "benchmark" scan. It's not as if you can simply put one image on top of the other and play spot the difference! With so many sections in a CT scan, it's important to compare like for like and to be able to measure changes as small as a millimetre on each section so as to build up an accurate overall picture of change. In other words, it's not a job that can be rushed if it is to be done properly.....
In the past, the doctor has usually allowed around two weeks between the date of the scan and the follow up meeting to go through the results. Not that it takes a fortnight to assess the scan - just that there is usually a queue of scans for the radiologist to look at and it takes time to do a thorough job.
Steve had his last assessment on 28 January. His scan referral form was filled in there and then, with a handwritten note requesting an appointment in sufficient time for the scan to be considered and the radiologist's report prepared before his next assessment on 28 February, a whole month away.
Knowing that it usually takes a couple of weeks for the results to be looked at, we were expecting for Steve to be given an appointment some time this week so that the results would be ready for his post-treatment assessment at the end of the month. We were also hoping for at least a few days advance notice of when the scan would happen so as not to make plans which then clash with the scan date and have to be rearranged.
With no appointment in the post by the end of last week, Steve phoned the hospital yesterday to check that he was "in the system" for a scan and find out the date. Getting through on his second attempt, he was surprised when told that as of 11 February, they had only just started looking at the referral forms going back to 28 January. It seems that Steve's referral had been sitting in the pending tray for 14 days without any action - no one had even checked to see if were any marked urgent!
The good news is that as a result of phoning, Steve now has a date for his scan. The bad news is that it's only two days before his follow up assessment meeting. I ask myself, what are the chances that the radiologist will assess the scan and write a report so that it is ready for the oncologist to give us the results the next day? The answer, I think, that the chance of that happening is about as remote as ......Well, you can choose your own metaphor!
I've no doubt that the doctor will take a look at the scan before we are called into the meeting room on assessment day, but I doubt somehow that it will have been given a very thorough going over.
I hope very much that my fears are unfounded, especially as this is a really important scan from our point of view. ALL scans are important. However, this the one that will give us a clear idea of the impact that six cycles of chemotherapy has had on the mesothelioma and whether the last five months of treatment and side effects have been worth it, so it's really, really important from our point of view.
Unlike the majority of mesothelioma patients who appear to have scans every three months, our hospital relies on X-rays for quarterly assessments, following up with a scan only when the X-ray suggests that something might be happening. As a result, Steve has had relatively few scans compared to others diagnosed back in mid 2009.
Given their rarity, each scan Steve has is like gold dust in terms of getting a really detailed, accurate picture of what's going on inside. It deserves to be looked at carefully and thoroughly by an expert, as it will influence the course of our lives for the foreseeable future, one way or another. Is less than 48 hours long enough to do something that usually takes a fortnight? Only time will tell....
The frustrating thing is that this could have been avoided if those responsible for making scan appointments simply looked through all the outstanding referrals at the end of each day, pulled to the top those that are time critical for whatever reason and booked a slot in time to meet the deadline - a sort of triage system for paperwork.
Why on earth does it take at least two weeks for a bit of paper to get to the top of a pile? Why have a bit of paper in the first place? Why not a computer-based system accessible to medical staff so that, if nothing else, they can see dates when scan slots are available and the patient can book an appointment for the scan and follow up assessment at the reception before leaving the hospital.
No doubt someone will tell me that there are administrative flaws in this approach, but would they be any worse than the hoops, anxiety and stress that patients and their carers go through as a result of the current system?
Or perhaps it all works like clockwork in other hospitals, and we are just the unlucky ones on this occasion?
We have just experienced another one of those occasions. Not a really big issue, but one that is frustrating because it was foreseen and could have been avoided if one hand of the NHS had paid attention to, and acted on, the request of the other hand.
Please don't read any further if you are likely to get upset by a whinge...It's just my way of letting off a bit of steam! If you happen to be involved in the NHS, then please read on, take notes, put yourself in our position and if the circumstances I describe apply to where you work then please think about what you can do to avoid such situations occurring in future. And then do it!
Anyone with mesothelioma will tell you about the importance of scans - how they become the yardstick by which those with the disease and their carers measure and arrange their lives in short chunks of time, rarely daring to look beyond the date of the next scan and follow up meeting when we find out the results.
Pain may not always be a sign of disease progression; neither is the absence of pain a guarantee that the meso isn't growing. It is only by looking inside the body, either crudely with an X-ray or in more detail with a scan of some sort that it's possible to assess with any degree of confidence whether the disease is active and aggressive, growing, spreading, stable or reducing in size.
Is it any wonder therefore, that we all get twitchy, anxious and stressed in the run up to a scan, wondering what the news will be? So much depends on the outcome of the scan - whether we can heave a sigh of relief that there is no change; celebrate like we've won the lottery when there is shrinkage; prepare ourselves for more treatment if that is an option, or face living with quality rather than quantity of life if options have run out, or the thought of having more treatment with all the attendant side effects is no longer tenable.
I think it's fair to say that it takes an expert and experienced eye to "read" scans and assess whether there has been any change when compared to the "benchmark" scan. It's not as if you can simply put one image on top of the other and play spot the difference! With so many sections in a CT scan, it's important to compare like for like and to be able to measure changes as small as a millimetre on each section so as to build up an accurate overall picture of change. In other words, it's not a job that can be rushed if it is to be done properly.....
In the past, the doctor has usually allowed around two weeks between the date of the scan and the follow up meeting to go through the results. Not that it takes a fortnight to assess the scan - just that there is usually a queue of scans for the radiologist to look at and it takes time to do a thorough job.
Steve had his last assessment on 28 January. His scan referral form was filled in there and then, with a handwritten note requesting an appointment in sufficient time for the scan to be considered and the radiologist's report prepared before his next assessment on 28 February, a whole month away.
Knowing that it usually takes a couple of weeks for the results to be looked at, we were expecting for Steve to be given an appointment some time this week so that the results would be ready for his post-treatment assessment at the end of the month. We were also hoping for at least a few days advance notice of when the scan would happen so as not to make plans which then clash with the scan date and have to be rearranged.
With no appointment in the post by the end of last week, Steve phoned the hospital yesterday to check that he was "in the system" for a scan and find out the date. Getting through on his second attempt, he was surprised when told that as of 11 February, they had only just started looking at the referral forms going back to 28 January. It seems that Steve's referral had been sitting in the pending tray for 14 days without any action - no one had even checked to see if were any marked urgent!
The good news is that as a result of phoning, Steve now has a date for his scan. The bad news is that it's only two days before his follow up assessment meeting. I ask myself, what are the chances that the radiologist will assess the scan and write a report so that it is ready for the oncologist to give us the results the next day? The answer, I think, that the chance of that happening is about as remote as ......Well, you can choose your own metaphor!
I've no doubt that the doctor will take a look at the scan before we are called into the meeting room on assessment day, but I doubt somehow that it will have been given a very thorough going over.
I hope very much that my fears are unfounded, especially as this is a really important scan from our point of view. ALL scans are important. However, this the one that will give us a clear idea of the impact that six cycles of chemotherapy has had on the mesothelioma and whether the last five months of treatment and side effects have been worth it, so it's really, really important from our point of view.
Unlike the majority of mesothelioma patients who appear to have scans every three months, our hospital relies on X-rays for quarterly assessments, following up with a scan only when the X-ray suggests that something might be happening. As a result, Steve has had relatively few scans compared to others diagnosed back in mid 2009.
Given their rarity, each scan Steve has is like gold dust in terms of getting a really detailed, accurate picture of what's going on inside. It deserves to be looked at carefully and thoroughly by an expert, as it will influence the course of our lives for the foreseeable future, one way or another. Is less than 48 hours long enough to do something that usually takes a fortnight? Only time will tell....
The frustrating thing is that this could have been avoided if those responsible for making scan appointments simply looked through all the outstanding referrals at the end of each day, pulled to the top those that are time critical for whatever reason and booked a slot in time to meet the deadline - a sort of triage system for paperwork.
Why on earth does it take at least two weeks for a bit of paper to get to the top of a pile? Why have a bit of paper in the first place? Why not a computer-based system accessible to medical staff so that, if nothing else, they can see dates when scan slots are available and the patient can book an appointment for the scan and follow up assessment at the reception before leaving the hospital.
No doubt someone will tell me that there are administrative flaws in this approach, but would they be any worse than the hoops, anxiety and stress that patients and their carers go through as a result of the current system?
Or perhaps it all works like clockwork in other hospitals, and we are just the unlucky ones on this occasion?
Posts
Linda,
ReplyDeleteas you say I am eternally grateful to the NHS but gosh they aren't good at organizing, it seems so simple to get right but so often the basics just seem to be missed- two weeks to even look at scan referrals seems mad.
Hopefully the 48 hours will be enough for a good look, We have had a couple of times when the experienced radiologist has turned round scans very quickly for the surgeon to get feedback.
the extra stress doesn't help though !
Amanda
Thanks Amanda!
ReplyDeleteHope you are feeling better now?
Linda