"Concerned about my care and sharing of information"

I had been a patient at the Golden Jubilee since late 2010 and overall my entire experience has been unpleasant. I had open heart surgery in February 2011 and soon after I complained about unbearable pain. I understood that there are a set of protocols of weaning patients off stronger pain killers such as morphine but I felt that my complaints fell on deaf ears. The doctors and nurses in 3West did not listen. I was discharged on very little pain relief despite my being in absolute agony I was informed that hospital policy does not allow for patients to be discharged into the community on any of the stronger, controlled drugs like morphine. Long story short, my GP ended up putting me back on morphine within a week of my discharge. I had issues with appointments the outpatient department had to make as I continued to have post surgical pain. This issue was only resolved after I made a formal complaint which was upheld. I finally received a cursory apology and was informed that it was probably the sternal wires that were causing the pain. Said wires were removed in September of 2011 without any further investigations such as an x-ray or CT scan and this initially appeared to resolve things. I had a baby in 2013 with constant monitoring from my Golden Jubilee cardiologist who was a fine example of a caring and professional clinician. I did remain symptomatic although I tried to self manage but things finally came to a head in early 2015. Every drug that my GP had prescribed I was now taking the maximum dose so she got in touch with my surgeon so that he could review me in his clinic, (incidentally I was now back on morphine for breakthrough pain).

During the first appointment the registrar saw me. She was convinced that I had some movement in my sternum and she also felt a gap. She ordered a chest x-ray to ascertain whether all the wires had been removed, gave me a heart hugger to use when I coughed or sneezed and asked the physios to order a chest brace for me to provide me with additional support for my chest.

A further appointment with another clinician lasted less than 5 minutes, in which I felt that the clinician was clearly not interested in seeing me as patient who is also a wife, mother and woman who could no longer provide meaningfully for her family as I cannot work, lift my youngest child or do any housework due to the pain I now have to live with. To my dismay the idea of any sternal instability was dismissed and consequently the use of any aid to stabilise and support my chest. After initially saying there was nothing wrong with me, it was said that a 3rd chest surgery was not advisable, but the orthopaedics department would be consulted. In addition, a CT scan would be requested, although it had previously been said that a chest x-ray was enough evidence that nothing was wrong. So I left feeling very confused about what was going to happen next. Later, a letter to my GP was written which implied that it was all in my head and the CT scan would hopefully reassure me.

I received a phone call a few days later from the Golden Jubilee scan appointments dept giving me possible CT scan appointments. I indicated that my husband worked away from home and asked if it was alright to bring my son with me. The staff member said she would check with the CT scan dept and within a few minutes she called back and said the CT scanning dept said that they would not be able to help me. Ordinarily such an appointment wouldn’t be too much hassle for me in terms of asking a friend to watch my son, but getting to Golden Jubilee on public transport from Kirkcaldy would mean I would need approximately 6 hours of child care. After explaining the difficulties this would pose as I would have to make arrangements for my eldest child to be collected from school (as it would be impossible for me to be home in time for school finishing up for the day), I was told that it was my problem and the hospital couldn’t help me. I asked if it would be possible to get the scan done somewhere closer to home which she kindly looked into. I later received a call advising me that I had been referred to the Victoria Hospital which thankfully is in Kirkcaldy.

Sadly my optimism was wasted as after 2 weeks without any news I called the Victoria hospital to chase things up only to be told that my referral had never arrived. 3 more weeks passed with no word despite having been told  that a referral had been made. I eventually found out that my CT scan referral had been sent to a cardiologist who had only met me once to do my transoesophageal echo. By the time it reached the correct cardiologist at Victoria hospital, he only managed to dictate a referral to the scanning department and went off on a fortnight’s holiday so the letter had to wait for his signature. All this hassle could have been avoided with a letter to formalise things. Such action would have taken 5-10 minutes, could have speeded things up considerably.

Dismayed by this turn of events and realising that I would have to wait even longer, I got in touch with the Golden Jubilee. I asked if I could attend for the CT there as the local referral had now taken more than 6 weeks since I last saw my surgeon. I was told that there was no way to get it done at Golden Jubilee as I had requested an appointment in Kirkcaldy, so I had no choice but to wait. At the end of June my husband was fed up and arranged for the kids and I to move down to England where he was working. I registered with a new GP who in light of my medical history and prescription medications referred me to Papworth Hospital in Cambridge.

My new thoracic surgeon has been absolutely brilliant and has kept me informed about any thoughts he has regarding my treatment. He has been in touch with the Golden Jubilee, however this has not reciprocated. I am now having investigations for residual pulmonary hypertension which was a significant issue prior to my surgery which was never investigated at the Golden Jubilee. To add insult to injury, frustratingly despite previous requests for my medical records, the Golden Jubilee has not sent them to Papworth hospital. This means that essentially my thoracic surgeon and my cardiac pulmonologist are unable to ascertain whether there has been any improvement or worsening of symptoms as the baseline assessments done prior to my surgery at the Golden Jubilee in 2011 are not available for comparison.

I cannot understand the reluctance in sharing this information as it is important to my new healthcare team and could help me get my life back. I can’t help but feel like I am just an annoyance to the Golden Jubilee and not the patient who trusted them and looked for help. I feel I am nothing more than a statistic and yet now I take no less than 6 different painkillers in order to function. I no longer have a good quality of life as I am now dependent on my family to help me with my activities of daily living as my condition has worsened. This whole experience has been made worse by the lack of care and compassion I have received as a patient at the Golden Jubilee hospital.