"left waiting after urgent biopsy"

About: The Queen Elizabeth Hospital (King's Lynn)

I had two lots of surgery at qe and have been left with two terrible conditions which have changed my life completely. Despite all literature stating that close regular monitoring should be done following these surgeries I have been seen just 3 times in 5 years and despite having symptoms and having had blood tests locally (gps and local hospital) I was discharged with a 4 line letter to my gp saying my last ct was unremarkable. I had also had an mri at my local hospital 2 years earlier which showed the liver was enlarged. I emailed this consultant and in these emails he admits the letter was inaccurate and the liver was still enlarged on the ct but said he couldn't do anything! I month later I was admitted to local hospital where two consultants confirmed that the ct showed enlarged liver and my blood tests indicated disease. I was told I needed urgent referral back to liver unit. A referral was made marked urgent and 6 months later I got an appointment and saw an f2 who going on the previous consultants notes was dismissive until she scanned me and my results were at the top end of indication for severe fibrosis she jokingly said of course this could be wrong, results that high would be heading towards end of life stage but still she said your blood tests are all clear. I had only had two lots of blood tests done at qe and yet was shown a spreadsheet by her full of negative tests. I explained my gps local hospital findings and she ordered further tests. She then rang me late the following Friday to say I needed an urgent biopsy at my local hospital with samples sent to them and to ring the consultants Secretary 7 days later for the results. I carried out her instructions only to be told I needed to contact local hospital for results. They said no it was qe who needed to give me the results. I spent a further month phoning between two secretaries. This was in April. Finally an appointment arrived for November. In the meantime I was again taken to local hospital as I had gone into bladder retention caused by the ascitites having been ignored for so long. They had no access to the biopsy results and I had to have numerous New medications some of which may be contra indicated if I have liver disease (a very laughable if). I now have terrible symptoms and my gp is doing her best but without a firm diagnosis it is very difficult. Every day I get worse. I vomit am in terrible pain and have lost masses of weight. I can no longer walk or eat properly. I know I am dying and I feel completely let down both by the initial surgeon who was suspended over another patients treatment and who subsequently left (a few weeks after discharging me) and by the treatment or lack of it since. I tried pals got some platitudes but again told my local hospital could give me the results except of course they don't have them! I gave up trying to contact the consultants Secretary after leaving numerous messages on a voicemail that it appears is never listened to.

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Response from The Queen Elizabeth Hospital

Thank you for taking the time to provide a very detailed history of the difficulties you have experienced with your health. You have obviously had to cope with a number of very serious health issues and quite rightly have questions about the decisions that have been made throughout your treatment. I would like to have the opportunity to review your case and hopefully provide you with the answers that you seek. I would be very grateful if you could contact me directly on the contact details below so that I can discuss your concerns with you and look at how I might be able to help. Claire Roberts Associate Director of Patient Experience Tel: 01553 613459 or email: claire.roberts@qehkl.nhs.uk

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