Breast cancer diagnosis: the lessons that should be learned

Andrew Harrison is the one of the leading clinical negligence lawyers in the North West, with a particular and well-deserved reputation for his work as a specialist in the field of breast cancer misdiagnoses in which he is an acknowledged expert. Notably, he has won multiple cases  against Barnsley Hospital which have been reported in national and regional media. Here he shares his experiences and advice about the proper process of diagnosis.

I have, over the past decade, sadly dealt with dozens of cases in which simple and completely avoidable mistakes have led to a delay in the diagnosis of breast cancer. The consequences are, always, awful. In addition to the physical impact, the patient has to live with the additional burden of knowing a mistake has been made and that it could well have reduced their life expectancy chances.

There are some very simple points that I think can be made about this, and which could have a real impact. If lessons are not learned from it all, then nothing will ever change.

The two-week wait referral

The two common paths to a breast cancer diagnosis come from the “two-week wait” referral from a GP, or from something picked up on routine mammography.

In an ideal world, a patient with concerns would see their GP, be referred to the local hospital breast clinic, and a three-stage test would be carried out to diagnose the problem. Either a problem is found and treatment can start early, or it reveals something else entirely, which can either be addressed or ignored. The system, when followed correctly, is very effective. The problems that arise come from a number of frequently-repeated mistakes.

No referral

Very few people go to their doctor for fun. They do so because they have noticed something, and are concerned. This is often a lump, a skin change, or a change in shape. You know your own body better than anyone else does. So if you report these changes to, for example, your GP, then unless you have been given a clear and definite explanation for it, you do not need to accept anything other than a referral for investigation. You may well be told that it is probably nothing serious, and that is correct, but you are entitled to know for sure. If you have any doubt, at all, insist on referral. When it comes to symptoms, the patient is always right. No GP dare not refer a patient who is worried they may have breast cancer.

Cut corners

There is a set of fairly standard guidelines that sets out how suspected breast cancer is investigated. The “triple assessment” is mammogram, ultrasound, and biopsy. You do not always need all three, but you do need to understand why you are not having all three.

The NHS is busy, and sometimes doctors cut corners. I have seen cases in which biopsies are abandoned, or not performed, for very flimsy reasons, with fatal results. Ultrasounds are not performed because someone who does not want to do it decides that they have seen enough on the mammogram. At one particular Trust, there is a widespread habit of not bothering to follow the triple assessment rules at all, and biopsies were not carried out on a series of young women despite black-and-white guidance that said it was mandatory. Scan results are downgraded so that investigations do not have to proceed. I have had cases in which despite nobody actually discovering what was wrong the surgeons decided it was too much trouble to look further. The Court disagreed.

Knowing what to expect is important. There are many useful guides as to what that three-stage process is, and why and, as above, you can help yourself by seeking answers as to what is being done to you, and why. If your investigation has stopped at Stage 2, do you know why? Do you agree with that? If you don’t, that’s a problem that must be addressed.

Don’t accept “no”

You might hear this referred to as “consent” by both doctor and lawyers, but it refers to your right to be involved in your own treatment. The old way of the helpless patient being dictated to by the all-knowing doctor is now out of date. You are supposed to know what is going on, fully.

A doctor using their clinical judgment is absolutely entitled to do so, but you also have the right to override it. If something is not being done, and you don’t know why, or you want it doing because you are not satisfied with the explanation, stand up for yourself. Ask. The worst that happens is that you look like an idiot for a few minutes. It’s not a large price to pay.

On the other hand you will not be left wondering what, in fact, just happened, and why nobody did the scan you were expecting.  Better, the doctor will have to explain to you why that scan isn’t happening, and in the process they might just discover that this is actually a mistake. If you were told in department A that you are going for a biopsy, and then Department B doesn’t perform it, someone needs to explain why.

The patient has an absolute right to all the relevant information, to know what is being done, why, and what their options are. Do not get sent home with half the job done.

Administrative errors

It is remarkable how many cases result from red tape. The system is reliant on human input, and humans forget things. Medical records with relevant information missing are common. The wrong patient’s scans being sent is a classic. The most frequent problem, however, is a patient not getting the appointment they are waiting for. If you have had a scan and you are expecting the results, but they never come, or you have had the result and you know you are expecting to go back for further investigations, don’t leave it six months before you chase that up.

The NHS is not so busy that they cannot get a letter out in half a year. The sheer number of appointment letters that are not sent, sent to the wrong place, lost, filed without action, or the patient accidentally discharged, is remarkable. Every one of these missed appointments was a call for action, with a patient waiting for it and hoping that it will not in fact come. You can help yourself. Chase it. Your GP will get sick of it, but weigh up who is more upset, the GP receptionist fielding your third phone call or the patient with undiagnosed cancer growing for another year.

The NHS is not an all-knowing magic entity that is looking after your every move. They forget you as soon as you leave, and if the right button is not pushed, your letter doesn’t go out. No letter, no appointment, no diagnosis. You do not simply report to hospital and then everything is taken care of for you, you are involved. If the appointment hasn’t come, or the scan results are overdue, chase it.

You can make a difference in your own care.

If you are affected by any of the issues raised here please do get in touch today. We are here to help you.