"Trying to cure my abdominal pain."

Three years ago I had a laparoscopic appendectomy at Yeovil District Hospital. Something went wrong - they never worked out exactly what, but they thought a vein somehow got nicked during the op. I lost three pints of blood into my abdominal cavity. Despite low oxygen saturations, extreme pain and a fall in haemoglobin levels post-op, the bleed went undiagnosed and I was sent home 2 days later. After more than a week of increasing levels of pain, I was finally diagnosed with an infected pelvic abscess and readmitted to hospital. The abscess subsequently separated out into separate collections of fluid. It took 5 different types of intravenous antibiotic, 3 attempts at CT-guided drainage and a hospital stay of nearly 5 weeks (including 1 discharge and subsequent readmission 2 days later) to solve the acute problem. The memories of that period still give me nightmares and flashbacks. These experiences left me with a fear of hospitals and medical procedures and have made it very difficult for me to trust medical professionals.

Since then I have suffered intermittent pain and discomfort in my lower right abdominal quadrant. However, a year ago the pain became (and continues to be) both continuous and much worse. Though I am always in some pain, its level fluctuates. I have periodic episodes (sometimes, though not always, associated with opening my bowels) when the pain is so agonising that I am bent double screaming. It is impossible to predict when these episodes will occur, which means I have to plan my entire daily life with thought to what I will do should one happen. Even when the pain is less extreme, I find the combined effects of pain and pain killers make me tired and fuzzy and impair concentration. I have been unable to work for the past year and my normal daily life has been severely circumscribed.

I first went to my GP with this problem in October 2011. She prescribed drugs to help relieve the pain and referred me for an ultrasound. The ultrasound took place in December and showed no abnormalities. The ultrasound technician told me that this was to be expected, for 2 reasons. Firstly, the locus of the pain is an area where there are few structures visible to ultrasound. Secondly, I was too sore to enable them to press the scanner inward sufficiently in that area. Given these facts, I would question why I was referred for an ultrasound in the first place, as its only effect was to cause unnecessary delay. I saw a different GP about the ultrasound result. She thought that the most likely cause was bowel adhesions and made an urgent referral to the colo-rectal surgery department of the John Radcliffe Hospital in Oxford. Her referral was wrongly sent to the upper GI surgery team, who gave me an appointment in January 2012. I turned up to the appointment, only to be told that the clinic had been cancelled. The letter telling me this had been posted over the Christmas period and only arrived after the appointment date. I was very distressed by this, as the journey to the appointment was uncomfortable and had had to be done by taxi, which I could ill-afford. I was also distressed because I desperately wanted a speedy solution to the problem so that I would no longer be in constant pain and could return to work. However, the upper-GI team's secretary arranged for me to see one of the colo-rectal registrars that same day. I am very thankful to her for making the effort to arrange that.

The colo-rectal registrar I saw felt that a CT-scan and herniogram were necessary in order to obtain more diagnostic information. This scan did not take place until the end of January. I was very nervous about these tests, as some of my strongest bad memories from my original hospital stay concerned having CT-guided drains put into my abdominal cavity. I was worried that the repeat experience of having abdominal injections and being inside a CT scanner could provoke a flashback and/or panic attack. A week beforehand, I rang the radiology department and tried to find someone to discuss these concerns with. I simply wanted staff to be aware of the problem, the reasons why I might be edgy or panicky on the day and to know that, in this event, it was important that the radiologists carrying out the tests did not become frustrated or impatient. The department seemed very surprised that I had called and seemed to have no experience of dealing with a query of this nature. My concerns were not passed on to the staff present on the day of the tests. My GP prescribed a one-off dose of diazepam to help me through the tests – I wonder why no radiology staff suggested this option when I explained my concerns. In the event, the radiologist concerned decided that a herniogram was an inappropriate test for someone with my history and a probable diagnosis of bowel adhesions, as it carried an increased risk of perforating the bowel. I would therefore question why this test was ordered in the first place, subjecting me to a large amount of unnecessary anxiety.

According to the radiologist’s report, the CT-scan showed bowel adhesions and a small umbilical hernia. I waited until the end of February to see a registrar regarding the scan. I had not seen this registrar before and during the consultation it became patently obvious that he had neither read my notes nor looked at the scan beforehand. Despite the radiologist’s report, he asserted that the scan looked normal and that bowel adhesions could not cause the level of pain I was in. He clearly had no prior knowledge of my previous problems with the original abscess or of the degree of damage it had wrought. He had not viewed or sought copies of the original CT-scans from 3 years before. He asserted that nothing, surgically, could be done. He said that he would write a letter referring me to the pain clinic. He suggested that I should try to build up my activity levels gradually and try to lose weight. I pointed out that the pain I was in worsens considerably when exercising. Even when walking, the further I walk the greater the pain becomes. I also argued that, despite several months spent unable to work and with a minimally active daily life, I have not gained any weight. I told him that I am a vegetarian with a relatively healthy diet, high in fruit and fibre. My bowel motions are of normal frequency and consistency, yet are sometimes accompanied by excruciating abdominal pain. Despite these points, the registrar insisted that there was nothing he or his department could do for me. I left that consultation feeling suicidal. I felt that I simply could not cope indefinitely with the level of pain I was (and still am) in, or the circumscribed existence it entailed. I felt that the registrar had failed to pay sufficient attention to my circumstances or to listen to me and I felt totally abandoned.

This consultation was followed up by a letter from the colo-rectal department’s consultant. The copy of this letter intended for my GP had been sent to my previous GP surgery, despite the fact that my current GP had made the original referral. I had to take my own copy to my GP for them to scan in. In addition, the letter contained several mistakes. It once again stated (contrary to the radiologist’s report) that the CT-scan was normal. It stated that my pain is intermittent (it is constant). It stated that the original problem was directly due to the removal of my appendix, rather than the subsequent pelvic abscess/es and infection. It once more asserted that nothing could be done to relieve the problem surgically. The letter alluded to a ‘previously outlined’ plan for managing my condition, including a referral to the pain clinic and some weight loss. Neither I nor my GP had received any such plan. I took the letter to the GP who had made the original referral. She was as taken aback as I was by as its contents and by the assertion that nothing surgical could be done. She suggested that she refer me to another consultant for a second opinion. By now, the strain my physical condition had put on my mental health and material circumstances was extreme. As I was unable to work, I had to spend my savings in order to live and my financial situation was increasingly precarious. Nevertheless, in order to expedite the process, I offered to pay to see a second consultant privately. Before this consultation, the GP agreed, at my request, to write to Yeovil Hospital to ask for copies of my original CT scans.

Obtaining copies of scans slowed the process, so it was mid-May before I was able to see the second consultant. From the start of the consultation, he seemed better acquainted with my condition and overall situation. He also took more time to listen to my symptoms and concerns. He disagreed with the original registrar’s assertion that adhesions could not cause the amount of pain I was in. Indeed, he thought that this was the most likely diagnosis. I was, therefore, quite angry that the registrar had simply dismissed this idea. He thought that adhering bowel loops were possibly coupled with the adhesion of bowel to the abdominal wall, which would explain why the pain worsens with exercise. He agreed that it was virtually impossible for me to exercise in my current situation. He said ‘we can’t just leave you like this. ’ He agreed that, at age 25, continuing indefinitely without a concrete diagnosis and with no attempt at resolving the problem was simply untenable. He also asserted that bowel adhering to itself or abdominal wall would not show up clearly on a CT-scan. I wondered why the registrar had not known this. The consultant therefore advised carrying out an exploratory laparoscopy. This should give a definite diagnosis and, if bowel adhesions were indeed the problem, they could be divided during the procedure. He was hopeful that this would solve or at least ameliorate the problem. He also wanted to get the pain management team involved as, once established, chronic pain can be very difficult to treat. He was confident that a combination of both approaches should bring considerable improvement. I raised the issue with him that, despite the fact that a referral should have been made in February, I had heard nothing from the pain clinic. I left pleased with the outcome of this consultation and the way it was conducted, but angry that a second consultation had been necessary at all. I was also angry that I had needed to pay in order to get seen within a reasonable time frame.

The second consultant stated that he was happy to carry out the laparoscopy on the NHS. Given the length of time it had taken to get thus far, he thought it inadvisable that I should spend more time on a waiting list. He would, therefore, try to fit me into his schedule over the ‘next few weeks. ’ By early August, I had still not received a date for the procedure. I therefore contacted the John Radcliffe colo-rectal department’s secretary. Her records contained no reference to the fact that I was due to undergo a laparoscopy. After phoning the consultant’s private secretary, I established that there had been a breakdown in communication between the private and NHS practice and the message had not been passed between them. Surely, as the NHS becomes more open to competition and commercial input, coordination between such separate entities will have to be improved? After multiple telephone calls, I was given a date of 3rd September. I also mentioned that I had heard nothing from the pain clinic and the NHS colo-rectal secretary therefore resent the referral.

Towards the end of August, having still heard nothing, I contacted the pain clinic directly. They had no record of either referral and told me that they now only accepted referrals from GPs. Neither the colo-rectal department nor the GP were aware of this fact until I told them. I still have no idea what the pain clinic did with the first two referrals they received. My GP made a new referral, accompanied by a letter explaining the circumstances and asking them to backdate the referral to February, when it should have been made. This should have ensured that I was seen quickly. However, I then received an appointment for the pain clinic in January 2013. Subsequent enquires by the GP confirmed that this was the earliest they could offer. I feel that it taking nearly a year to access a service relating to a service as crucial as pain management is simply unacceptable. This is especially so given that my surgical consultant feels that it is important that input from the pain management team accompany surgery.

In August I underwent a pre-operative assessment. On the morning this took place my pain was particularly acute and I had to take a considerable level of analgesia in order to be able to attend. As usual, I was acutely anxious in the hospital environment and the tests carried out invoked painful memories. Unsurprisingly, my blood pressure was extremely high. Several readings were taken. Each was higher than the last and the frequent squeezing of the pressure cuff left a large bruise on my arm. I was distressed by these proceedings, especially when staff suggested that the level of my BP could lead to my operation being cancelled. The staff at the pre-op clinic showed a signal lack of understanding or sympathy towards my anxiety and distress. I was asked to wait to see a doctor, who I was told would see me in approximately half an hour. After waiting for him for more than two hours, I was so distressed that I was sitting in the waiting area in floods of tears and only just managing to find enough self-control not to simply walk out. None of the staff present appeared to notice and, when the doctor did arrive, he saw his patients out of order and I had to wait while he saw others whose appointments had been after my own. When I did see him, he failed to identify himself, his position or his purpose in examining me and it took several questions to elicit this. The outcome of this examination was simply that I was asked to see my own GP. It was very poor doctor patient communication and left me feeling as though I was not a person, just another unit to be examined. Indeed the entire pre-op clinic felt somewhat like this.

After this very distressing experience at the pre-op clinic, I saw a GP. The guideline blood pressure lowering medication for my age group usually takes more than a month to come into full effect. Since my surgery was scheduled to take place sooner, he put me on a drug that would lower my BP more quickly (though accompanied by some side-effects). Very shortly after this, I received a letter saying that, owing to an unexpectedly large number of cancer patients presenting to the colo-rectal surgery department, my operation had been cancelled. I contacted the department and was told they could give me no new date, or even tell me roughly how long I would have to wait. I was utterly stunned by this news and once again felt suicidal – I simply did not know how much longer I could stand the level of pain I was in. I understood that patients with life-threatening conditions had to take priority, but I found it difficult to understand how the department could be so stretched that a small rise in the numbers of these cases could cause all other procedures to be put on hold. I also felt that, while my condition is not life threatening, the department had failed to understand just how life-limiting it is. I also felt that I had been put through the experience at the pre-op clinic and had made every effort to lower my BP as quickly as possible to no purpose.

The colo-rectal department said they could offer me a new date fairly soon, but only if I was happy to have the operation carried out by the first consultant I had come into contact with. This was the man who had written a letter full of mistakes insisting there was nothing he could do to help me. Having already been on the receiving end of the surgical mistake which was responsible for my current problems, I was unwilling to undergo surgery performed by a surgeon whose competence I had even the slightest doubts in.

During this period my pain had been worsening, especially the periodic outbreaks of extreme pain. These were becoming increasing difficult to control with the analgesia available to me. My GP therefore prescribed liquid morphine to help manage these outbreaks. Faced with the pain and the prospect of living without wages for a further indeterminate length of time, I obtained a quote for having the procedure privately. To my astonishment this cost turned out to be considerably less than the amount the state had paid out in housing and other benefits to enable me to live while incapacitated. This state of affairs seems to defy logic!

This entire experience has left me distressed, anxious, extremely angry and occasionally suicidal. It has done nothing to allay my fear of hospitals or medical procedures, or to improve my trust in medical practitioners. I have had outstanding support from multiple people at my GP surgery throughout and would like to praise and thank them. However, the treatment I received at every NHS hospital clinic I attended was in some way unsatisfactory and was on occasion totally unacceptable. Large numbers of professionals in various fields failed to listen to me and paid insufficient attention to my concerns. Perhaps because there was no immediate or obvious diagnosis, no one took ownership of my problem. I was passed between a succession of practitioners who seemed to have little sympathy, understanding of the level of pain and disability I was experiencing or willingness to try and remedy the problem. At every stage of the process there has been administrative confusion or mistake and a notable lack of coordination between different departments and hospitals. Copies of my original scans were only eventually obtained at my personal behest. I have had to chase or follow up appointments almost every time, making several personal phone calls to clinics’ secretaries. I am also extremely angry that, in order to obtain adequate and timely care I have now twice had to pay to have treatment privately. Surely the NHS can and should do better than this?