Find out how my appointment went at Breakspear Medical, a clinic I visited to find the root cause of my fibromyalgia and CFS.
Photography source: Unsplash

On a Tuesday morning in September, my husband and I left for the airport with an overnight bag. I was feeling nervous, not just for the journey ahead (I really don’t like flying these days) but for what we were actually travelling for. We were flying to London and then driving to Hemel Hempstead in Hertfordshire, where I had an appointment booked at a private medical clinic called Breakspear Medical the following day. I was feeling really reserved and anxious about it. I couldn’t help but wonder if I was doing the right thing?

Who is Breakspear Medical?

Breakspear Medical is a private day-clinic. It is not NHS funded and so you have to pay for your medical care there. The doctors at Breakspear are specialists in environmental illnesses and offer diagnosis and treatment for a range of conditions and illnesses, including allergies, chronic fatigue syndrome, myalgic encephalomyelitis, fibromyalgia and Lyme disease.

Why I decided to have a consultation at Breakspear Medical

For a long time now I’ve felt distanced from my fibromyalgia diagnosis. Don’t get me wrong, I’m not saying I don’t have fibromyalgia, it’s more that over the past couple of years my fibromyalgia has felt secondary to something else.

My symptoms feel different now to how they were when I was first diagnosed in 2013. I no longer have massive pain flares, my pain feels different and is generally low on the pain scale and my main struggles are related to fatigue, feeling unwell and my lack of stamina.

I couldn’t help but feel there were answers I was still to find

I’ve always had a curious mind and I’ve done a lot of reading and researching. I came up with many theories and potential issues that could have cropped up, keeping me from progressing to where I want to be. For a while, I was content not knowing, simply because I was progressing regardless. However, I’ve had some setbacks this year and I reached a point where I felt frustrated that I didn’t know for sure exactly what was going on.

I had been aware of Breakspear Medical for quite a while but the travel and cost involved in going had always put me off. However, a flare up in August fuelled me to pursue arranging an initial consultation.

Breakspear seemed like the best option in this country to get the answers I was looking for. From my research, I knew they looked past your diagnosis to try and get to the root cause of what is causing you to be sick and I liked that approach.

Arranging an initial consultation

Arranging an appointment with Breakspear Medical is very straight forward. You do not need a referral and can simply phone their reception to get the process started. People travel from far and wide to go to the clinic; from within the UK and beyond.

There are initial forms to fill out

After your initial enquiry, you are sent out numerous forms via email that need to be completed before arranging your appointment. The receptionist I spoke to was lovely and told me to take my time filling out the forms as she knew it would be challenging for me.

I would definitely recommend having someone to help you with the forms, especially if brain fog is a problem for you.

The forms are very thorough, going through your medical history and current symptoms. They made me feel confident that Breakspear was looking at the entire picture and taking everything into account.

Once the forms are sent back to Breakspear, you can arrange an appointment. You are free to decide which doctor you would like to see, though it’s worth bearing in mind that there can be a waiting list to see a specific doctor. I was happy to see any of the doctors and took the first appointment that best suited me.

Preparing for my appointment

It is important to note that Breakspear has a scent-free policy, due to the fact that they treat people with multiple allergies and chemical sensitivities. This means that all clothes must be washed in scent-free powder and that any toiletries you use, including shampoo etc, prior to your visit has to be scent-free.

They also do not allow electrical devices, such as mobile phones to be switched on when you are at the clinic.

Before attending my appointment at Breakspear, I wrote down my medical history and all that I wanted to say during my appointment so that I didn’t forget anything important. I also took a note of questions I wanted to ask.

Travelling to Breakspear

Living in Scotland, we decided the easiest and cheapest way to get to Breakspear was to fly to London Stanstead with Ryanair and hire a car to drive to Hemel Hempstead. We stayed overnight in a nearby hotel, had my appointment the following morning and then flew home that same evening.

Although it would have been good to stay another night before travelling home, we didn’t do this simply due to the additional costs involved.

We used the sat nav on our mobile phone to find the clinic on the morning of my appointment. It is located in an industrial estate and was easy to find.

Arriving at the Breakspear Medical

We arrived at Breakspear 15 minutes early. I always like to be early as being pushed for time makes me feel really anxious and stressed. I was welcomed by the receptionist, who was lovely, and I was shown where the toilets were and where the dining room was.

The dining room is where you are asked to wait prior to your appointment and it is also where you can have lunch. You can order food from there or bring your own. There were drinks available, including filtered water, and I took a glass of water to my appointment with me.

If you are unable to sit up while you wait for your appointment it is worth speaking to a member of staff as they do have day beds that you can use if they are available.

Find out how my appointment went at Breakspear Medical, a clinic I visited to find the root cause of my fibromyalgia and CFS.
Photography source: Unsplash

My consultation

My appointment was at 9.30 but my doctor was 15 minutes late, for which he was very apologetic. He said something about a miscommunication with the person on reception and that he didn’t know I was there.

The doctor I saw was very polite and friendly and immediately put me at ease. He asked if it was okay for one of his colleagues to sit in on my consultation, which I was fine with. My husband came into the appointment with me too.

The initial consultation lasted for 90 minutes and was very thorough

Before we started, my doctor asked me why I decided to go to Breakspear and what my expectations for the appointment were. I found this quite refreshing. I said that I was looking to find the underlying cause of my fibromyalgia and chronic fatigue.

Although both doctors asked me some questions at various points during the consultation, it was mainly me doing the talking. I went over my symptoms and all the health problems that I have experienced for the past five years.

They were also interested in how my health was before all these problems started and how my health was as a child. I am sure that if you have problems with brain fog or other symptoms that make talking for a long time difficult, then it would be fine for someone to do the talking on your behalf.

I felt like both doctors were genuinely interested to hear everything that I had to say

I felt like they took everything I said seriously and they legitimised the things I was saying. It actually felt really alien to be able to talk about my health as a whole and so comprehensively; I’d been so used to 10-minute doctors appointments and focussing on the most prevalent problem.

It was clear that the doctors were listening to everything I was saying and that they were trying to connect the dots between all of my symptoms.

After I had given my medical history, I had a physical examination

This was a little rushed as I had been speaking for so long that we were almost out of time. Following this, the doctor said his impression was that I could possibly have Lyme disease with coinfections– as this would explain all my symptoms– and he also queried food and chemical sensitivities.

He asked what my thoughts were on my situation and if I had any specific questions for him. I told him I agreed and thought it was likely that I could have recurrent infections and I thought Lyme disease was highly possible (these were the main reasons I went in the first place).  I said I was also interested to know if my mitochondria were dysfunctional.

It was a relief to know we were on the same page

He then told me which tests he recommended I had but he also made it clear that these were only recommendations and that it was up to me to decide which tests I wanted to have done. It was clear that I was the person in charge of my health care and he knew I had to take my budget into consideration.

Following my appointment

I was then taken back to the dining room and was told someone from patient liaison would come to speak to me about the test recommendations. When they did, I was given a printed estimate along with information sheets about each test.

To make things easier for me, the recommended tests were split up into two priorities. This meant that I could prioritise which tests I wanted to have done if I decided against doing them all.

I was told to take my time and that I did not need to make a decision there and then. I could go home, read all the information and decide at a later date.

Deciding what to do

I read over all of the information with my husband while we had lunch. I also spoke to my mum about it all as I knew she would be waiting at home worried about how I had got on.

I had a bit of a wobble over whether or not to have all of the Lyme testing done (I was recommended to do 3 different tests). I’ve talked about Lyme testing previously and my thoughts on it, so I won’t go into it again here.

My mum and husband both told me to just go ahead and do the tests.  I decided to go ahead with the priority 1 tests but that I would leave the priority 2 tests for now.

Most testing was done there and then

My blood was taken that afternoon and I was also given a couple of test kits to take home. I left the clinic after this, with a list of dates when I could expect to get my results. Some would only take a few days to come back, others a few weeks as they were being sent to specialist labs all over the world!

I want to say that prior to attending Breakspear, one of my concerns was that they treat all patients the same and go through the same process of testing. I can definitely say– especially knowing a few different patients at Breakspear– that this is  not true and that the tests are recommended on a personal basis.

What happens following your initial appointment at Breakspear

The results of the tests are all sent directly to you via email. If you don’t want them sent through email you can let Breakspear know this. I found receiving the tests interesting but it’s worth saying that it isn’t always easy to decipher your test results.

I managed to get my head around most of them and had a good idea of what was going on. However, your doctor will go over your results during your follow-up appointment and will explain everything to you. This follow-up appointment can be done in person or over the telephone.

My results

I have now received all of my test results, I’ve had my follow-up appointment and have been prescribed a treatment plan. If you’re interested, you can read all about my test results and what Breakspear discovered was the underlying cause of my fibromyalgia and chronic fatigue.

I am definitely glad I went to Breakspear. I feel I have a clearer idea of what my health problems are and I feel positive and hopeful going forward. My own GP has been kept informed of everything and has been very supportive (you can choose not to inform your GP if this isn’t something you want).

Why I am sharing my experience of Breakspear

I understand that not everyone will be able to go private with their healthcare and I am extremely grateful for my ever supportive husband and parents. However, I hope that sharing my experience and what follows may offer some insight that you will find helpful with regards to your own health.

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2 Comments

  1. Hello,

    I too have been suffering with ME since i was 24 and then felt better from 33-39 and then after a dose of Glandular Fever I have extremely low energy levels and any form of excercise wipes me out for a week. I am interested in going to Breakspear but i need to have an idea on what all the testing costs. Could you give me an idea on what you spent before i embark on a Skype chat(that costs £260).
    Thank you so much in advance

    • Hey, Claudia. I am really sorry that Glandular Fever has knocked you backwards. Unfortunately, it’s very hard for me to give you an estimate for testing as it very much depends on what the doctor decides to test for. Some people spend a few hundred, others a couple of thousand. At the end of the day, it’s up to you to decide what tests you want to do. You don’t have to do every test they recommend. And, if you are on a budget, be sure to tell them this. I thought that initial consultations had to be done in person but maybe that has changed.

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