"It only took me 5 years ..."

About: Pilgrim Hospital / Gynaecological oncology

(as the patient),

5.5 years ago I went for a smear test which due to a move had been a few months overdue. The test came back abnormal and my GP at that time was very quick to respond and referred me to a specialist in Boston for further smear test.

Still problematic, I went back for a biopsy which was further investigated. I was called back by the specialist, who said he would refer me to another specialist in Nottingham, because I may need more of my cervix removed, but it would not impact on me having children.

I was able to meet with the next specialist in Lincoln at very short notice, which was appreciated. The specialist who was very nice, asked me why I had come to see me on my own. As I frowned, they said: 'Because of the difficulty of the subject, it is advisable to bring support.' I continued to frown as up until this point, no one had mentioned 'cancer'. My jaw dropped!!!

The specialist then explained that my cervix and womb would need to be removed, meaning I would loose my ability to have children. Double blow!!! After that I was fast-tracked for an operation and had a very positive experience of NHS hospital services.

A year and a half on from my biopsy, I was watching TV and heard the first specialist had been practicing though it was known that they had an infectious illness which could have jeapordised the health of the women they performed biopsies on. I rang the hospital, who said I would receive a letter with further information and advice.

I had since moved house and the letter never came. My NHS records were however up-to-date as I was still going for regular quarterly check-ups following my involuntary hysterectomy.

During my time in NHS care was I ever asked about my experiences, good or bad. For the last 5 years I have been avoiding going back here as it is still somewhat painful. When I finally plucked up the courage and contacted the NHS to give some feedback (I had not intended to complain), I was told I could join a Patient Forum which met at 2pm on a Friday. Working full-time that did not suit, but there was no other alternative to give feedback other than an official letter of complaint.

I hope there are some lessons to be learnt from my story. My suggestions, based on my experience, would be:

1. No matter how hard it is, I feel you should always tell patients the truth.

2. You shouldn't make promises that others can't keep.

3. Why keep records up-to-date if you are not going to use them?

4. Look at more comprehensive feedback procedures that capture real experiences of real people in real time

5. Welcome feedback without defensiveness

6. Poor communication adds to the trauma of patients.

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Response from Jennie Negus, Deputy Director of Patient Services, United Lincolnshire Hospitals NHS Trust

picture of Jennie Negus

Your story was quite simply heartbreaking to read and I cannot even begin to imagine the anxiety you have experienced; I am so very sorry. You posted your story 2 years ago and it is hard to have to admit that it is first being read by us all this time later but this shows, as you have highlighted yourself, that as a Trust we just did not have the systems in place to actively seek and listen to patients views and experiences.

We do now - we have a range of ways for patients to provide feedback and a range of ways to proactively seek that feedback - one of these is using stories from Patient Opinion and feel strongly enough about it to also go back through older stories, not just recent ones to learn from them. I hope, that even after all this time you can see that we are listening - that we value patient feedback and we will use your experiences to ensure we continue to learn and improve our systems and standards of care.

Even after such a long time I would still like to offer my sincere apologies - but also to say that we have listened and shared your story.

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