History

When I was first diagnosed I attended appointments at my local hospital in Kent. I found the appointments a burden, and when I was having flare-ups I found them almost unbearable. The waiting time was usually at least two and a half hours, the nurses would weigh us in batches of four or five and would never disclose to me my weight or any fluctuations. But most importantly during this period I never once, not ever, met my consultant. Instead I saw a succession of different registrars, never the same one twice. So every six months for about four years I would go and meet a complete stranger, to whom I would have to recount my very personal story from start to finish each time, and who had no idea about me as a person or a patient other than the scribbled notes of the previous registrar and so on.

After about four years I stopped going, I simply found the whole experience of going to the hospital too distressing. I moved to East London and If I had a relapse I would just go to my GP and ask for a course of steroids, which I would be given. Once my symptoms would subside I would stop taking them and go on as normal. And that is how it went for the next three or four years. When I got married I even remember going to the GP and asking for a course of steroids as a preventative measure, to ensure I could enjoy my wedding and honeymoon without being bothered by strong symptoms of my UC, my main concern being that I wanted to be able to walk down the isle and stand to say my vows without being hit by that sudden urgency. When I look back now and think about that, I realise how unwell I was for such a prolonged period of time. Yet I fell through the cracks in the healthcare service – my GP knew I was unwell but no advice was given and no referral made. The consultant and his army of registrars knew I was unwell yet when I just stopped going to my appointments they wrote to my GP to say that I wasn’t coming they assumed I had made a full recovery and was no longer in need of their services. No connection was made.

When I eventually collapsed in the bathroom one night early in 2005 and was carted off to Whipps Cross in an ambulance it changed my life. I met Doctor S and I remember him saying “It seems you have fallen victim to a lack of appropriate care…though you are not completely innocent”. I knew exactly what he meant, he was saying Hey you’ve had a rough ride, but you could have tried a bit harder. He was right of course, he always was. Doc S and his team picked me up, dusted me off, equipped me with the knowledge I needed to control my own care and gave me some confidence in the NHS and in human nature once more. When I moved back to Kent in 2006 and then found myself facing hospital again in 2008 it was with some trepidation that I transferred my care back to the original hospital I had endured ten years earlier.

That was a year ago now. I have survived ok – though I still feel quite out of touch with my consultant, who I usually see at one out of every three appointments, and never when I go in for my IV infliximab treatments. But I have a great specialist IBD nurse, a direct line for my consultant’s secretary and a spirit of steal when it comes to getting the answers I want to my questions. I am older and wiser and I have the scars to show for my battles so far. But I do feel for the newbies coming into the system, there’s just not enough information about how to handle the NHS and how to get what you want, even how to know what you want.

Hubby is one of the newbies of course, but he has me fighting his corner*. Since being diagnosed a year ago his symptoms have sometimes got a bit better and sometimes got a bit worse, but they have never gone away. He had an appointment with his (our) consultant yesterday and saw a registrar, not the usual registrar either, but a new one he had never met before. The new registrar decided to reduce hubby’s steroids, increase his mecaptopurine and encourage Hubby to take the predfoam enemas daily (Hubby doesn’t like them but needs must). He came away from his appointment with a new course of action but with a feeling of the appointment not being a great one. Why? Because confidence in the decisions made about your health, the most precious thing you have, cannot grow if there is no consistency. It makes me angry that I can see my own history repeating itself in this way through Hubby’s experiences.

Except I suppose this time I can do something about it, and rest assured I bloody well will.


* bossing him about.