Monday, 9 March 2015


Feels like forever since I last blogged. A lot's been going on in my head. On the last post I briefly mentioned a disastrous trip up to the Brompton and since then I have been doing a lot of thinking. I hate to speak badly about people or organisations, especially when I know they only have good intentions. However, this is a very open, honest blog and I have to say how I'm feeling. It's sort of like therapy writing this because once I've written it I feel like a weight has been lifted and it's no longer filling up my brain. Like they say, "a problem shared is a problem halved".

So, the problem is is that whenever I know my Brompton appointment is in a few days I get stressed out. Usually the day before the appointment is when Alex, my family and even the dog notice it. This stressed out state will continue throughout the whole day of the appointment and calm down a day or 2 after it. So that's about 3 days of stress for just one appointment. Crazy!

It's all because of a few factors. The worst one being PARKING! OMG, it's become a joke now. First and foremost, this isn't the hospital's fault it's just the way London works. There are about 5 disabled parking bays directly behind the hospital- one of which has had a metal fence round it for over a year because a company is using it to store materials and what not for some building work. Why they needed to use a disabled bay I'll never know! Anywho, so next to those are 3 or 4 bays that the hospital actually own (the hosp have thousands and thousands of patients, yet only 3 or 4 bays of their own), which you have to book 2 weeks in advance to use on a first come, first serve basis. Other than those, there are a few other disabled bays dotted around a few streets away infront of other hospitals. If you don't manage to get those golden-ticket-disabled bays, then I'm afraid you'd have to cough up £3.30 p/h for a parking bay. It wouldn't be so bad if you knew how long you'd be in the hosp, but with the waiting times increasing, you could put on 3 hours worth, then have to go back out to put in another couple of hours on your car, just to return to the hospital to find out you've just missed the doctor. So you end up £16.50 worse off and in a crap mood.

Sorry, I feel like I'm being super negative, but it's the harsh reality :(

There's also the issue of the doctors at the Brompton. In the last 2 years, I haven't seen the same doctor twice- except for if I was an inpatient. Every appointment I have to repeat myself and my life story because they never know me, I'm just a number and a folder that they don't know personally and haven't had time to read my notes. It always gets me down that I spend soooo many hours getting there, looking for parking and waiting around just for the doctor to rush in late, give me 5-10 minutes of their time and rush back out again. I feel guilty if I have any questions to ask. It's not the way it used to be and I'm feeling like my needs are being met by them anymore :(

I know the hospital has been struggling a bit the last year or so with the head consultant, Dr Bilton being very ill and no doubt changes in laws and budgets etc. You can feel the atmosphere has changed a bit. The CF team and the nurses on the wards are trying so so hard, but the work load for them is just enormous. They have so many patients, it's no wonder my bloods have been lost, or appointments accidentally cancelled or what have you. I totally don't hold it against them and try and be as helpful and easy to deal with as possible by turning up on time to appointments, being as independent as I can in booking/re-booking/canceling appointments or getting in touch with physios, dietitians, wards etc.

So I started researching other hospitals that specialise in Cystic Fibrosis. I found one called Frimley Park hospital, that is almost the exact same distance from me, just in the opposite direction to the Brompton. I got in contact with a couple of girls who I knew went there and decided to book an appointment to meet the head nurse. I drew up a list of questions and Alex and I went to check it out. One of the first reactions I had as we were driving there was how green the area was! It was so lovely to drive through more country roads, seeing fields and animals. The air was so fresh, no pollution! Compared to the busy, polluted roads of London it was a welcome change.

Once we arrived at the hospital there were thousands of parking spaces: designated CF spaces, loads of disabled bays and so many regular bays. Even better is that it is all completely free for me and any of my friends and family who visit! I met Judith, who I believe is the head nurse of the CF unit- which is only about 110 patients compared to Brompton's 2000+ CF patients. She was lovely and answered all my questions. She reassured me that I would always see one of their 3 consultants (one of whom I used to know from Brompton) every appointment, so they're much more personal. There are many more advantages of this lovely unit, but I'd be here all day listing them.

Now is the hard part; saying goodbye to the Brompton. I feel terrible that I want to leave them. The team have helped me so much and helped me overcome my phobias. I don't want them to feel that I don't like them as individuals- or even as a team- it's just I can't be dealing with the amount of stress that I have by going there. I feel like I need doctors who know ME and have a relationship with me. I'm going to miss seeing friends up there and the CF specialist nurses like Millie, Suzie and Alan! I'll miss the lovely polish cleaning man and even though they are annoying, I will miss the "tea coffee please" people lol. The dietitians, physios, receptionists, phlebotomists. The Foulis nurses, the Lind nurses, the ambulance drivers. It's like a second home there now. But I need to do this just to see if the grass really is greener on the other side. I can always go back if I don't like Frimley Park.