THE BREAKSPEAR CLINIC 1

The reason I started this blog was that, about three months ago, I started looking into getting treatment in the Breakspear Clinic. This is a clinic in the South of England that specialises in allergies and environmental medicine, including treating CFS.

I had read their website, but I wanted some first hand testimony from people who had actually been to see them and who had gotten treatment. The clinic is expensive, so before going I wanted an idea of what I was letting myself in for.

There was very little out there on the Net. I found the odd blog post, a few posts in forums, but little that would give me any real information.

I decided to go ahead anyway with an appointment with one of the doctors there, Dr Jean Munro. As I am in Ireland, they arranged it so I could have the appointment by Skype.

I also decided that I would start recording my experience with the clinic, for those who are coming after me and wondering whether it is worth spending all that money to attend Breakspear. A blog seemed to be the best way to do this, and so here I am. In essence I am doing what I wish someone else before me had done. It would have helped me a lot when I was trying to decide whether to go down the Breakspear route.

So far, my experience with Breakspear has been mixed.

I had to fill in a lot of forms before the first consultation, medical histories, symptom charts, medications lists. The consultation began almost on time, practically the first time that I have ever seen a doctor at the time of the appointment.

Dr Munro was sympathetic, asked me about the onset of my condition, what my major symptoms were, asked about my diet, what I was taking etc. There wasn't a whole lot to the consultation, to be honest, she eventually got on to what tests she would recommend, and we finished within half an hour.

And that's as far as I have gotten so far. The specific tests I have been recommended to get are as follows....

Priority 1.

Immunology profile

Comprehensive viral panel

Priority 2

ATP Profile

Cardiolipin

DNA Aducts

Translocator study

There was a third priority, stool analysis, and IgC food panel, that I am not going to do at the moment. They sent me explanations on all of the tests except the Cardiolipin, though in truth I am none the wiser. I am only really taking them at their word that these are worthwhile, productive tests.

The reason the two tests above are priority one is because they were what I asked for, I have never had any immune investigation or tests for viruses, and I wanted to get these done.

I have already had blood drawn for the priority one tests. I am undecided about the priority two tests as yet, my next appointment isn't until late June so I don't have to decide yet.

As I have said, my experience with Breakspear so far has been mixed. Initially I found the administration side to be less than efficient. I had to email them requesting that they send out the forms that I had to fill in before the first appointment. Then, before they actually sent me the forms, they emailed me asking if I had returned them.

When the arrangements were made, there was a little confusion on a number of levels. I had given them my credit card details, yet they emailed me asking for these details, as if they had mislaid them. They sent me contradictory information in arranging for the first consultation, though that was quickly sorted out.

They did facilitate me in enabling me to get the blood drawn here in Ireland and then send it to them next day delivery to get it tested, though when I received the kit all of the blood bottles had my name misspelled and I was down as female (I am not).

My biggest complaint with them though, is when it comes to payment for the tests. I rang them and confirmed that I wanted to do priority 1 and 2, and was quoted a price of £1100 or €1300. Before I even received the kit for the tests, they had taken the money from my credit card. They didn't inform me that they were going to do this, and it meant that I was over my credit card limit.

In fact they took my money three days before I even received the kit, never mind actually getting tests done. As we speak it will be another couple of weeks before I can arrange the second set of tests - if I do them - and yet they have had over a thousand euro of mine for nearly a month now. Charging the money to my credit card is by far the most efficient thing that they have done as yet.

I have read a little more about Breakspear since I went down this road, and one theme seems to be that they are a business first, a clinic second. That too is my impression. They are, in some cases, helpful when I have a query, though when I rang to complain about them charging me so quickly for the tests, they were utterly unapologetic. I have to say that I am not massively optimistic for whatever potential treatments that they propose, yet it is an avenue that I haven't explored yet, and so I feel I need to tick it off my list and give it a try.

I still suspect that I may end up spending thousands with no tangible benefit to my health. My big problem here is still lack of information. I don't know how useful those proposed tests are, and have no way of evaluating whatever treatment they will suggest.

I will update as and when I get any results or new developments.