"Post-poned elective surgery"

From initial referral to secondary care in October 2010 for excessive menstrual blood loss due to uterine fibroids and elimination of malignancy following biopsy at the end of November 2010, I was referred to vascular radiology for consideration for uterine embolization.

I was seen mid-February 2011 subsequent to an MRI in mid February. At the mid-February appointment in which probity for the procedure was agreed, consent signed, blood tests and MRSA test taken, I was told I would have the procedures in 6 weeks time, i.e. the end of March 2011. I received a letter mid-march 2011 to say the procedure would be done at the end of April.

I phoned the hospital to check whether there had been a typing error; there had not. The same letter stated that I had to 'ensure' that I had the hormonal IUD (mirena coil) removed prior to the procedure. This I duly did at the very end of March 2011. What ensued was the worse bleeding I have ever had on three separate dates in the subsequent 10 days – to such an extent that I had to rush home having bled through, sanitary protection (double), clothing, onto my car seat and two other occasions where I could not leave the house.

I phoned the GP and could not get an appointment unless I sat in the surgery. My bleeding meant I could not ‘sit’ anywhere at that point in time.

In mid April I received a phone call to inform me the procedure was postponed until the end of May due to an outbreak of Norovirus. Due to how poorly I had become and fearful of a sudden loss of blood as seemed to happen unbidden since the coil removal, I asked was there any way I could be treated prior to that as I was becoming so ill and had someone coming to stay with me who had booked a flight and time off to stay with me subsequent to the scheduled procedure. I was told there was not.

I asked could I try and organise treatment privately and was asked whether I had health insurance; I did/do not and therefore was told that it was highly unlikely.

I was referred to the secretary of the vascular radiology team who told me that she would have to take me off the list if I ‘wanted’ to go privately. I tried to explain that I did not ‘want’ to go privately as I did not have any money to pay for private treatment but could sell my car and borrow money to pay for the procedure as I simply could not wait any longer. I asked the secretary to keep my appointment.

Subsequent to this, I had to further haemorrhagic bleeds and spoke to a GP at my surgery who said my dose of anti-haemorrhage medication was very low (I was not aware it was low – it was my prescription – 500mg tranexamic acid + 500 mg of mefenamic acid) and I could double the dose. She also said, I should have the coil put in again. I explained to her that the coil was very difficult to insert the first time due to the size and position of my most problematic fibroid which obstructs the cervix. Since the coil had been put in in June 2010, that same fibroid had increased in size by at least 2 cm and the possibility of reinsertion was not very likely (given that removal was very difficult – it is normally extremely easy) due to the obstruction of the cervix. I also did not want to go through what I had just been through with the post-coil removal blood loss again as I am now aware that it is very uncertain whether the appointment due at the end of May would go ahead as it is ‘elective’.

I conducted a search of the internet for interventional radiologists outside of Sheffield and found someone in Birmingham who practiced both on the NHS and privately. The wait time for NHS treatment is 18 weeks and for private is immediate. The private clinic in which I will be treated offers an interest free credit system to pay.

Obviously, in the interest of patient safety, to close areas and decrease bed numbers because of norovirus is necessary. What could have been avoided for me and countless others I have spoken to in my role as a health services researcher conducted research of patient attitudes on hospital wards is clarification that a procedure date does not necessarily mean a person will be treated on that given date.

If I had understood this, I would not have had the coil removed until immediately prior to the procedure. A sentence such as (and highlighted): You are scheduled for what is termed an ‘elective procedure’ meaning the surgery is not considered a medical emergency. As such, medical emergencies can arise with other patients and may mean the intended date given in this letter might have to be moved. We hope this is not the case but understand that you will probably be organising time off work/child care/post-operation care and therefore some flexibility is important in your planning.

If such a sentence was included, it would be educative to a non-clinical person such as me and others in my position. Up-to-now, I was really unaware, had a family member book a flight for me and as mentioned, followed the pre-procedure treatment as requested with subsequent symptoms.

As it stands, I have struggled with massive blood loss since October 2010 which first prompted me to request referral to secondary care at that time.

My issue is with the communication and management of my referral and booking for procedure. All clinical dealings have been entirely satisfactory and I have every confidence in all the clinicians who have attended my case and would far prefer to be treated on the NHS rather than enter into debt as I feel obliged to do to be able to continue working (my GP offered to have me signed off work for 6 weeks leading up until the end of May and then the time off for recovery). I do not think this is a good use of tax-payers’ money.