The Greek Isle of Hosp

The first week of the Summer Holidays I was meant to be jetting off to the Greek Island of Zante. Instead, we joke, I ended up in The Greek Isle of 'Hosp.' Broomfield Burns Unit, to be exact. Not exactly fun in the sun.

Since then, I have spent hours and hours in the Unit, being 'put back together.' Stitched, scraped, poked and prodded.

I had an appointment today that I have been waiting weeks for. Unfortunately, it was all a bit of a shock. I've been battling a livid and disfiguring rash that appeared a week after my skin grafts, in August 2011. It's been there quite a while! It started off looking like impetigo. Once the impetigo cleared up it left behind bright red, inch-wide, raised patches, around the outline of my grafts. These have never receded. Sometimes the skin breaks or blisters and I've had other smaller patches appear on the back of my arm. Other than that though, it's barely changed.

I've had many, many people look at the rash including Burns Nurses, Surgeons, Doctors, Physio and a Dermatologist. I've had lots of antibiotics and topical creams but nothing has made a difference.

Today I had a surgeon look at the rash. He declared it to no longer be a rash at all. He says that it's now hypertrophic scarring. He said I may have once had a rash which damaged the already fragile skin, causing it to scar. I am horrified. I went to the hospital thinking I had a rash that would vanish with the right treatment, only to be told that I have 50% more scarring than I thought.

NOT a good day.

I've been instructed to treat it as a scar tissue with massaging and silicone and then come back in 3 months. They didn't seem to really understand why I was so upset. From where they're standing, my arm is red and damaged. What's a little more damage? As long as I'm not going to keel over, they don't seem too worried. How my body looks seems of very little concern.

But the NHS is only there to get you out of harm's way. After that, there is very little interest in patients. This is what I'm slowly beginning to discover.

For instance, to me the compression vests are a matter of urgency, necessity. Without them my scars will become hypertrophic (raised) and will heal badly. However, the NHS have forgotten to order one of my vests; so I have only one to wear. I need to wash them daily, yet wear them for 24 hours. With merely one vest, this doesn't work. They also need replacing every 3 months to work as efficiently as possible but mine are over 4 months old.

Although I will still attend my appointments at 'Hosp' for basic care, I am going to go and see a private consultant as soon as possible. I want to find out the options available in the long run, to make my arm and chest look as good as possible. There must be lots of cosmetic procedures that I could opt for if necessary. This is something the NHS won't even mention, let alone offer. I also want a second opinion on the rash/scarring. I have spent 5 months being told it's a rash and suddenly it's scarring? I'm really not sure who to believe!

I'm starting to find it very difficult being a patient. I'm running out of patience!