Hospital Fun and Games July 2011

When you are seriously ill, it is inevitable that you visit hospital regularly and sometimes a variety of hospitals. When I first found out that I had a problem I had used our private medical insurance to get tests that were needed done quickly, so we could get to the bottom of things quickly. On reflection later, I am relieved we had had this now and the ability to go privately for tests, as my PH was so severe by the time I got to Papworth, it is quite clear I would probably not have survived waiting months and months for this test or the other, given the waiting times on the NHS; not only the waiting time to have the tests done, but the waiting time for the follow up appointments to actually find out test results. Having said that, once tests were done and there was sufficient information to be referred to a specialist centre, all the specialist centres for PH are NHS. Papworth Hopsital has proved over and over again so far to me that it is a centre of excellence and absolutely 'five star' and 'premier league' and the NHS should be proud. It is the NHS at its best. I can only say in my experience, once you have been diagnosed with something pretty serious, the NHS can be second to none in providing the appropriate care.  

During the time awaiting diagnosis, I visited a few private hospitals and the local hospital and I have to say had frustrating experiences at both.

The local hospital is not geared up for patients who have unusual diseases and is really geared to treating patients who have a variety of more common problems. This is quite rightly so, they cannot be expected to know about and have the ability to treat every single rare disease or condition that is going, however, it can be easy when your symptoms are of a more general nature to be swept along by general experts and general assumptions. In many cases of PH, patients take years to get diagnosed  for this reason.

My CT scan at the local hospital looked as though my lungs had scaring and the conclusion was the general reason for this, possibly blood clots. As I now knew that there was definitely a lung problem, I began to research on the internet all the jargon that had been put in writing about my lungs. It was amongst this research that I kept finding reports saying that it is only a very specialised eye that can interpret what scarring is caused by in the absence of blood clots. I had been told that the cause was probably just several mini blood clots, but I was reading about vascular disease, which presented very similar results on CT scans.

I had joined the PHA by this time, knowing that I had PH, and was becoming increasingly aware that this seemed to need treating at a specialist centre. Rob and I researched where these centres were located in the country and were coming to the conclusion that this was where we needed to be going, pretty quick. We also concluded that Papworth was probably the best one to go to, as they are the only hospital that performs the operation to remove blood clots from the lungs, they also perform lung transplants if it ever came to that.

Armed with this information we had a discussion with my cardiologist, who at this time also thought that things had become beyond his remit, he found himself unable to prescribe the specialist drugs I needed, and it was agreed that I be referred to Papworth. As it was, we picked the right place, but at the time it was furthest in our thoughts that it would be for a transplant! Before we got to this point though, I was told as I had feared that my PH was Idiopathic and that I had not got blood clots. I am glad we trusted our instincts on this one. My only regret now is that I didn't ask for this referral earlier or the opportunity for referral wasn't offered earlier, but everything is easy to do on hindsight and we were swept along in shock in those first few months. I had gone six months from PH being first mentioned to actually getting treatment that worked for me and during this period my PH was at its most severe.

I believe, I am blessed to have a specialist unit looking after and caring for me, there are many stories of patients with rare diseases that have nowhere to turn and they are passed from pillar to post or have to raise money for treatment in other countries to help them.  

I also found that the private hospitals I visited were very lacking at times. You feel quite secure in the knowledge that you have private medical insurance when you are well and believe if anything happens to you then you can get quickly sorted. This may be the case if you want a few tests and a routine simple operation or procedure, but it is the NHS that steps in when you need more and have a chronic or terminal illness, the ability to have yet more tests to monitor the condition and any associated problems is no longer there.

These private hospitals can be very lacking in the service they provide too. I needed an angiogram undertaking quite urgently in those first few scary weeks on finding I had a problem and as private angiograms could not be done at the local hospital, the nearest place was Harley Street in London. Here I was attended to by a male nurse, which I found quite embarrassing every time I had to have my groin checked,which seemed like every two seconds following my procedure. I was new to all of this and wasn't quite as inhibited as I have become now I'm a 'seasoned hospital goer'. Being a 'seasoned hospital goer', I find at NHS hospitals that you are asked beforehand if you are happy to have a male nurse, when there are embarrassing things to be checked, even just to have an ECG you are asked. I don't usually object as I trust it is their job and they have to do this all day long. In this early stage,however, I would have much preferred a female nurse to be looking after me, especially as I was paying for the privilege.

The experience at this hospital went even further downhill when a work man decided to barge in and start putting up some shelves in my room. My room was meant to be a private place and I was laid there feeling anxious, my life turned upside down and in a whirl and terrified of what they were going to find. Now I was laid down in bed, in a strange place, feeling very vulnerable and had this bizarre situation of a man in blue overalls coming in and out with a work box and a drill, drilling in my room. I did not really need this at this moment in time. This situation was exacerbated when the nurse and consultant, who was to undertake the procedure came into my room to explain the procedure and he still carried on. At this point I signalled to my husband to stop any further talks and get rid of him. I couldn't really believe this was being allowed to happen, let alone pay for the pleasure! I was really angry, but another part of me wanted to laugh so much,as it looked like some cartoon sketch and you couldn't really make it up.  


These hospital traumas were to be the first of many to come.