delays in diagnosis and the National Patients Safety Agency - have you had a delay in diagnosis?

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

Sue, I can only admire your courage and tenacity in bringing this much needed action when undergoing treatment. It will be a benchmark for others not getting the 3 step treatment that is theirs by right, or NICE guidelines.

I had a normal 3 yrly mammo Nov 4th 2002 at a travelling mammo unit as I live in an isolated area. I had no reason to suspect anything was wrong as I had no palpable lump. I was contacted by letter Dec 28th for a recall at a breast care centre, but no date. I followed up many times and finally got seen Jan 24th, when it was quite evident from the original mammo that I had a fairly large mass. So much for the 2 week rule. I had an invasive ductal tumour, 2 cm and associated intermediate DCIS. The cancer had already spread to my lymph nodes.

What I am now concerned about is the 3 yrly mammos for ladies over 50 - this was my 3rd NHS mammo, at 58 yrs. I truly believe that if I had had annual mammos, as my friends do in the USA, perhaps my cancer would not have spread to the lymph nodes and the tumour may have been less extensive. What is also worrying is that as bc patients, we only get 2 yrly mammos at my supposed breast care centre of excellence. My surgeon says it is because of risk of damage from radiation - how come then I got 5 and a half weeks of radiation after surgeries and chemo? Doesn’t sound logical to me. My cynical husband said it is more a question of resources than good medical practice. As I had a non palpable tumour it is perhaps reasonable to hypothesise that if I had a recurrence, it would also be non palpable. So, how would I know when to seek help?

Even as bc survivors we are treated differently for private mammos - i.e. my friends in the Midlands pay £80 for a private annual mammo, yet when I recently rang the local Nuffield Hospital in Plymouth, they quoted me £450, as they said I need an ultrasound as well as a mammo. This was on the phone, with no knowledge of my medical notes, only that I had had bc. As my 5 yrly review is due Jan 2008 with the 2 yrly mammo, I declined the Nuffield offer.

Liz.

I will follow your link as I had a delay and in the end was only seen urgently as I worked with a family planning doctor who also worked at the breast clinic.
I am going to get a copy of my notes and report her to the GMC becuase she also did the same thing 6 minths after I was diagnosed to another woman aged only 28 at the time.
thanks for sharing your experiences - doubt I will get anyway as my cancer has been so aggressive expect I will fall below the limit for outcome.
Kate

Hi Lizziecee and DippyKate,

Lizziecee -Thank goodness for screening - I’m glad that they found the tumour and dealt with it promptly. Would yearly screening make a difference? In some cases yes and in some cases no. It’s a difficult one to call. Yearly screening does have its risks and a small number of women every year would develop breast cancer caused by the screening. When we have the big lot of radiation during radiotherapy the risks to us are much higher than in screening but they are lower than the risks involved in not having the radiotherapy i.e the breast cancer returning. I’d agree with you that this sort of decision should be taken on medical grounds rather than financial grounds. I don’t mind paying more tax in order to do this.

DippyKate - I’ve left a message for you on the other thread. (The one about the case settling out of court.)

With best wishes,

Sue

Hi all

Like Kate I was called for a routine mammogram in one of the mobile screening units. I am 52 and this was 2nd - I had the first in my 49th year - thank goodness, otherwise things could have been too late.

I had the mammogram on 19th March 2007and 4 weeks later, not having heard from the clinic I telephoned only to be told the scan had not been read as they were short of consultants. I went away for a week at the end of April. On my return there were 2 letters waiting for me - an appointment for the 3rd May, which had been sent with only a couple of days notice and of course I was away. The other was an appointment on 10th May.

I attended this, which was 7 and half weeks after the mammogram. I was told they were worried about a thickening and didn’t really say anything else other than take your top off and lie on the couch. Then proceeded to punch biopsies and core biopsies. I then realised it was serious and asked the consultant was it cancer and she said yes - but wait for the results.

I went back on the 17th May and after a wait of about 4 hours met with an awful registrar who was slumped in a chair and who more or less said - well, you came last week and had biopsies. You asked if you had cancer and were told yes - so? It was like getting blood out of a stone for any more details. I had a large tumour, half the size of my breast (not sure about the exact measurements but will find out) DCIS, Grade 3, in 8 out of 14 lymph nodes. HER2 positive.

I opted to have my mastectomy in a hospital nearer home which was performed on 22 June 2007.

Where does the line lie ? 2 week rule for GP referrals and for routine mammograms - it depends on staffing levels. What is the use of having these screenings in place if they don’t have the resources for follow-up?

I am having chemo and radiotherapy but intend to complain when I can sit down and compose a letter to the Health authority. I will also complete the NPSA form.

So from first mammogram to surgery is was 13 and half weeks and such an aggressive cancer. I just worry how much spread happened in that time.

Liz xx