"much more sensitivity required surrounding the care & the terminology used for miscarriage"

About: Leeds PCT NHS Direct NHS Trust St James's University Hospital

(as the patient),

I miscarried my first baby, at around 7-8 weeks into the pregnancy, in April last year. I started having a few warning signs on a Sunday so called my GP first thing on the Monday, obviously in distress, to try getting an appointment that day. The receptionist told me in no uncertain terms that it wasn't possible to get an appointment and gruffly asked what my problem was. After explaining to her, I was told in what I thought was a particularly callous and unprofessional manner that it "probably wouldn't be considered a viable pregnancy yet" and the best she could do was to request a phone appointment with the GP and for me to call back at lunchtime. I was disgusted at having to discuss something so personal and upsetting with the receptionist.

Speaking to the GP when I called back made me feel stupid and that my problem wasn't a real one. The GP told me, as it was so early on "it's unlikely there's a heartbeat yet" and that "these things happen" but I'd just have to "wait and see" as it could all be fine. The only advice she gave me was to put my feet up and relax.

I spent the next anxious 48 hours with the same symptoms but tried my best not to worry. Midweek the symptoms eased and I thought maybe all was fine and I'd caused a fuss over nothing. Then on the Friday things took a turn for the worse with the spotting I'd been having becoming much more red and more frequent. In my heart I knew what was going to happen but I was frightened as I didn't know what to expect. So again I called the same GP who was dismissive, offered no real advice and had to be pushed into giving me the telephone number for the Early Pregnancy Unit at my local hospital where I was informed I could get a scan if I was "really that bothered".

The midwife I spoke to at the EPU was kind and patient. However, she couldn't offer me a scan until the Monday morning so gave me advice on what to do if my symptoms worsened/if I became ill. This at least put my mind at rest and I appreciated some care and sensitivity at a time when I was feeling so distressed.

On the Saturday my symptoms became worse still and I began having extreme pains every few minutes, along with the start of much heavier bleeding and clotting. My husband and I were obviously very distressed and to put our minds at rest my husband spoke to NHS Direct to ask if we should go to hospital or if I would be okay at home. I was asked a series of questions but care was taken to be sensitive and I was advised to go to A&E if the pain became unbearable or if I became faint. I was told, due to the symptoms I'd described, it was likely I was miscarrying but I should still go for the scan at the EPU on the Monday morning so that they could be sure that "all of the product had passed". I was shocked at the term "product" I was under no illusion at this point about what was happening but felt the terminology could have been better in the circumstances.

I went for the scan on the Monday morning and the lady who performed the ultrasound was incredibly sensitive and kind when she explained that I had indeed had a "complete miscarriage". I understood what she meant by complete and was thankful the term "product" wasn't used. She told me that everything looked fine in my womb and ovaries and that she could see no problems that would mean this would necessarily happen again, which was somewhat comforting to hear. We were asked to wait back in the waiting room to speak to a midwife and, unfortunately, had to sit between one extremely distressed woman who was obviously in a huge amount of physical pain and a young couple who'd just been given much happier news and were waving their scan picture around.

The midwife we saw, again, was very kind, explaining that it was a complete miscarriage and there's often no rhyme or reason why it had happened. Then she advised me to have one more period before "trying again" and we were waved out the door, passing the maternity ward on the way out.

We weren't given any leaflets or any information on how to cope emotionally. Had I not found the Miscarriage Association online I'm not sure I would've got through the rest of this year in one piece as the emotional impact has been huge.

I appreciate that what happened to me was a mere drop in the ocean in medical terms. Although I'm nowhere near feeling ready enough to try for another baby, I have certainly toughened up after such a rude awakening. I will perhaps be much colder and clinical myself next time, in the early stages, as I'm terrified of losing again.

My experience with the NHS (of which I am, of course, grateful) certainly wasn't horrendous. I've since heard some real horror stories of women who suffered much more than I did. Overall I think there needs to be much more sensitivity surrounding the care that's given and to the terminology used when dealing with pregnancy loss at any stage. Dealing with each woman as an individual rather than just another statistic would help. Some women cope much better than others in these situations. I feel it's the duty of the healthcare professionals to offer advice, information, counselling and perhaps follow up at a later stage.

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Response from Leeds Teaching Hospitals NHS Trust

Dear MrsT

Thank you for taking the time to make these various comments - some positive and some negative - about your experiences. We are very sorry to hear of your miscarriage.

Your comments have been passed to the gynaecology outpatients department. The senior sister agrees that we need to look into the terminology used within the service as it can come across as cold if not used correctly. She has set up a meeting with other senior sisters to discuss this issue. They are also going to review the patient information and how we direct patients to the appropriate areas I.e counselling.

The senior sister is happy to talk to you in confidence about your experience however she is unable to contact you directly. If you would like to discuss the issues in person, and confidentially, you can contact the Patient Advice and Liaison Service on 0113 2067168 or email patient.relations@leedsth.nhs.uk. We hope you will feel able to do this.

Thank you once again for giving us your feedback.

With kind regards

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Response from Caron Brittain, National Clinical Governance Manager, NHS Direct

Dear Mrs T

I am so sorry to hear not only of your personal loss but that contact with our service led to further distress at what can only have been a very traumatic time for you.

We would like the opportunity to feedback to our staff member who took your call. If this is something you would like us to do please could you forward the following details to us via our secure Contact Us function at www.nhsdirect.nhs.uk, details required are your name, address including postcode, telephone number you called from and the date of the call.

Again my apologies for your experience with our service and thank you for taking the time to provide us with your feedback.

Yours sincerely,

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