Dear all,
As you will realise from the other message I’ve just put on this thread I suffered a 12 month delay in the diagnosis of breast cancer. Last month NHS settled out of court a claim for damages that I brought against them.
All this has taken great deal of time and energy. During the legal action I was unable to do something that I think needs doing – finding out whether other women have suffered similar delays and making sure that no one else suffers delays in diagnosis. I had to hold fire on this for three reasons: I only had enough energy for one fight at a time (against the trust), my solicitor advised against doing anything public as it might prejudice my case, and I was afraid that if I was particularly vocal the Trust concerned might only settle if there was an agreement on my part not to talk.
But now everything is settled and there is no ‘gagging order’.
Delays in breast cancer diagnosis shouldn’t happen. Doctors’ guidelines (the NICE guidelines in England & Wales, the SIGN guidelines in Scotland) are very clear and straightforward. If a woman goes to her GP with a palpable lump then she should be referred urgently (within two weeks). If a woman goes to a breast clinic with a palpable lump then the consultant should carry out all three parts of the Triple Assessment - clinical examination by the clinician, imaging (mammography or ultrasound of the breast) and histology (fine needle aspiration or biopsy, where cells taken from the lump are then looked at by a pathologist). In both situations this is not some sort of gold standard to be aspired to but is best clinical practice which all doctors should be carrying out.
In my case I was doubly ‘unlucky’; I was neither referred urgently nor did I receive all three parts of the triple assessment.
So, am I the only person to have a delay in diagnosis? No, there are a few others on the site that I know about and they have very kindly sent details of their delays in diagnosis to a relatively new government body called the National Patients’ Safety Agency or NPSA for short.
The NPSA is set up to collect information on medical errors and to investigate whether there are any common patterns in these errors. It has no remit to punish doctors or apportion blame but relies on receiving information about errors from the doctors themselves, their colleagues or their patients. If you have had a delay in diagnosis due to a delay in referral to a breast clinic or due to events at a breast clinic please, please, please do report it to the NPSA. If guidelines are not being followed they need the evidence to show it.
Sadly the NPSA only covers England & Wales and there is no equivalent Scottish organisation but if you have had a delay in diagnosis in Scotland please consider sending the NPSA the details anyway. All details are confidential and any information taken from the database is anonymised so that neither the patient or the doctor can be recognised.
If you wish to report a delay in diagnosis then go to npsa.nhs.uk. Click the green box on the left marked ‘Patient Safety Division’. This will bring you to a new web page. Read down the text under the box and click on ‘collecting and analysing information’ which is at the end of the first paragraph. On the new web page click on the end of the first bullet point where it says ‘For public reports please click here.’ On the new web page at the bottom of the box marked acceptance click ‘accept’. This will bring you to a report form which can be filled in. The form has 7 steps to fill in, each on a separate web page. At the end of each step click ‘next’ at the bottom of the page to get to the next step. When you’ve completed the report keep hold of any reference number that you are given.
Later this month I will be writing to the NPSA under the Freedom of Information Act and asking how many women have had delays in diagnosis. I can then use these figures to raise awareness of the problem.
With very many thanks and best wishes,
Sue