Breakspear Part 1

Hey everyone! I’m back with another chapter of my story and this time it’s about Breakspear Medical Hospital! You can read my previous post here to find out what happened to me prior to going to Breakspear and why I decided to go there. Instead of my usual descriptive, story-telling posts I’m going to be doing a series of more informative posts for people who are considering going to Breakspear and want to know more about it. Also for friends and family who are interested in what I’ve been doing for the last few months 🙂

First off, Breakspear is in a town called Hemel Hempstead in Hertfordshire, England. It is a PRIVATE hospital, not an NHS hospital. For those of you who aren’t in the UK, the NHS is our National Health Service; it is the publicly funded healthcare system for the UK. A few years ago you could get a referral from your GP and apply for special funding on the NHS to be a patient at Breakspear but this option is no longer available as the NHS have cut the funding (surprise, surprise). To get an appointment at Breakspear you simply have to call, make an appointment directly and pay privately (costs cannot be covered by private health insurance though). An initial consultation with a doctor costs £220 and typically takes up to 90 minutes. This is the amount of time you will be booked in for but you can use less of it if you don’t need it all (I think the price is a set rate though so less time doesn’t mean a cheaper appointment). You have to have an initial consultation before you can have any tests or treatment. There are 5 doctors and you can choose to book an appointment with a specific one or go with the nearest available appointment, which can be anything from a few days to a few weeks waiting (check this?). Many people go to Breakspear based on  word of mouth recommendations so they might choose a specific doctor based on those recommendations. I heard of Breakspear through a friend who told me a family friend of hers went there after ending up with an ME/CFS diagnosis on the NHS – Breakspear managed to find the causes of her symptoms, treat them and now she is back at the gym and working full time! This person saw Dr Jean Monro so I went with her as well, who I probably would have chosen anyway as she is the medical director and founder of Breakspear Medical Group and she has the most experience out of all the doctors considering she began her private practice back in 1982! Click here for information about the different doctors which may aid your decision.

*You can also read more about the different chronic and environmental illnesses Breakspear treat here.

When you have booked your initial consultation, you are sent various questionnaires regarding symptoms and medical history. Back in January 2016 (date on the form is a year out as I must have had brain fog at the time of completion), I was unable to grip a pen, let alone write due to muscle wastage/weakness and lack of energy, I also couldn’t read or absorb any information so my mum had to fill out most of mine for me. If it’s too difficult for you to fill out then you can enlist someone to help you and remember to pace and break the paperwork up into sections so you don’t over do it!

This is the medical questionnaire all new patients have to fill in:

14

 

2

This is the symptom scoring chart all new patients have to fill in (you also fill this symptom chart out every 6 weeks so your progress can be measured):

14

15

When we booked the appointment we told Breakspear that I already had ME/CFS and Fibromyalgia diagnosis’ on the NHS so I had to fill in these pain and fatigue forms as well:

 

3

4

5

7

8

We also told Breakspear that I wanted to be tested for Lyme disease so I had to fill out this Lyme disease questionnaire and symptom checklist:

9

20

10

Some of the other paperwork you have to fill in are: a supplement and medication form detailing what you are currently taking, a consent form, a patient record card indicating whether you want information to be sent to your GP or not (I chose the option for information to be sent to my GP). The final form you have to fill in is a payment form were you include the payee’s information along with card details from a Visa, MasterCard or Debit card. This is where the consultation and any future tests or treatment will be charged to.

Many people have asked me how I was able to go to Breakspear considering how sick I was… if you haven’t read my previous blog posts, here is the severity my health was at and my level of functional ability back in January 2016: It’s taken from AYME’s ME/CFS Functionality Ability Scale you can see here.

Screen Shot 2016-04-19 at 10.09.46

Months prior to booking the appointment at Breakspear we enquired how they would manage with someone ‘as sick as me’ and we were told, “We are sorry but you are too sick for us to help you and you are too sick for us to facilitate your needs.” Oh if I had a pound for every time I have been told this over the years… I would have millions! A few months later and it was a completely different story; by January 2016 I was ‘too sick’ to NOT go to Breakspear. I no longer had a choice. You can read the reasons why in my pervious blog post here. Many people say they are ‘too sick’ to go to Breakspear due to the consequences it will have on them and their ill health. I completely understand this but for me the risk and the consequences of staying bedridden for any longer were much higher than the risk and consequences of me going to Breakspear. I had no idea what would happen to me if I went but I knew what was most likely to happen if I didn’t go. If I had stayed in that bed for a few more months then I probably wouldn’t be here now. Going to Breakspear was my only option. It’s as simple as that.

My family pushed for me to be moved to Breakspear by stretcher and to travel down in a private ambulance as it seemed the only feasible option to get me there but from previous experience travelling to hospitals via stretcher and ambulance, I knew that this would make me much more sick than having my family move me themselves. Extreme hyper-sensitivity to noise meant that the noise of the heavy ambulance doors slamming, the noise of the machines, the noise of the vehicle, the noise from the traffic and the outside world, the noise of the paramedics talking, my body would not be able to handle. Imagine standing next to the loudest speaker you can ever imagine whilst someone is screaming in your ear, that is how a whisper or a tweet of a bird outside my window sounded to me. My body didn’t register noise as a sound, it registered it as pain, the most excruciating pain you can imagine. Extreme sensitivities to chemicals, scents, perfume, aftershave, laundry detergent, make-up and leftover smoke the paramedics usually wore tightened my chest, leaving me, nausea, faint and difficulty with breathing. There was absolutely no way no way that I would be able to endure THREE HOURS of this for the length of the journey it would take to get to Breakspear. It was decided that instead, my step-dad, good old Roger, would carefully lift me from my bed, carry me downstairs and gently placed me into a ready-made bed in the front seat of the car. Good job I’m only small! (By the time we left for my appointment I was severely underweight, and weighed just six and a half stone.) I remember those few seconds I spent outside as clear as a blue sky, my eyes were closed but I could feel the wind on my face as it’s the first time I had been outside in about 9 months. I never could have imagined something so simple could have felt so good and little did I know that soon enough I would be sampling that wonderful feeling on a regular basis.

That first journey to Breakspear was with my mum who has had to give up work to be my full time carer as I needed 24 hour care. She’s become accustomed to my needs and was able to facilitate me exactly as I needed to minimise the impact the journey would have on my ill-health. Here are some tips for spoonie travelling: we pushed the front seat of the car as far back as possible so I was in a lying down position because if I was placed upright I would immediately pass out. We padded the seat out with duvets underneath me to reduce the pain that the impact of a moving car caused me. We filled out the leg space with pillows to raise my legs as having my legs bent was far too demanding on my body and also caused me to faint. There was no talking allowed; obviously no radio or music noise at all, as well as using earplugs and headphones to reduce the noise from the car and the outside world. An eye mask was needed to block out all light and ensure I had no visual stimulation (what I saw when I opened my eyes, the moving traffic, colours etc) because having my eyes open alone would have emptied my energy pot for the entire day. I remember a friend wishing me good luck for the journey and suggesting I look at the outside to distract myself from the pain I was in. My response to her was, “I can’t open my eyes. It makes me much more sick.” How is it possible that I had got to a point where I was too sick to even open my eyes?

Breakspear is a day clinic so depending on how far you have to travel and how well/sick you are, you may travel on the same day or stay at nearby hotels the night’s before and after the appointment. There are two Premier Inns and two Travelodges in Hemel Hempstead so patients usually stay in one of those. Most of the patients who travel from abroad stay for a period of a few months to have the initial consultation, testing and treatment so they rent apartments nearby. Breakspear also have a self-catering guest house which is well suited for those with chemical and electrical sensitivities, you can read more about it here. This would have been perfect for my needs but unfortunately the only toilet is up a flight of stairs which I clearly wasn’t able to manage when I first went to Breakspear so we stayed in a nearby hotel the night before and after my appointment. There is no way I could have had the appointment and travelled on the same day! In the past, my mum and I used to always share a room when we were travelling away from home but when you need 24 hours a day complete rest just to survive to the next day, no light, no noise, no talking, no communication and no movement within the room meant separate rooms were a necessity for my mother and I. An accessible room allowed me to be wheeled straight to the bed, lifted out and then wheeled to the toilet when I needed. I had a commode at home but that wasn’t the type of thing you wanted to take around in public with you!!! At this point my fluid intake was limited as I only had the energy to be moved from the bed to the toilet a couple of times a day. Yes I’m baring all in this post aren’t I! To sum this up, I highly recommend an accessible room to those who may benefit from it 🙂

*A couple of important things to be aware of before you go to Breakspear is that anyone entering the building isn’t allowed to wear anything scented or perfumed – you have to be completely SCENT FREE which includes washing clothes in scent free washing powder, wearing scent free deodorant, wearing scent free make up or no make-up at all because there are many chemically sensitive patients attending the clinic who react to just a small amount of a wide variety of smells. You can read more about becoming scent-free here. There are also no mobile phones or other electrical devices allowed inside Breakspear. Many of the patients have electrical sensitivity meaning that they react to electrical devices and it makes them much more sick. It is important to respect these rules because if they weren’t in place, lots of the patients who are electrically and chemically sensitive wouldn’t be able to attend Breakspear for testing and treatment.*

On the morning of my initial consultation when we arrived at Breakspear (my dad travelled down to meet us for the appointment), my parents lifted me out of the car into the wheelchair, which was padded with blankets and pillows so I could be as close to a lying down position as possible. I was wheeled a few metres from the car park to the entrance of the building and through the double doors, which my wheelchair fits through quite nicely! I have actually heard people complain that they have difficulty fitting their wheelchair through the door because usually only one of the double doors is open so if your wheelchair doesn’t fit through then all you have to do is ask at the reception desk and they will unlock it for you! As soon as the staff saw the state I was in they took me straight to be lifted into a bed on the ward. I was unable to lift my head, move my arms, move my legs, open my eyes, talk or communicate. They don’t usually offer beds out as most people go to the waiting area until their doctor is ready to see them. If you do need to go in a bed however, there are a few on the ward as well as private side rooms so if there are any free then they will allow you use them. Remember to ask and advocate for what you need! After a few minutes I was moved into a consultation room (again most people sit in a chair but if you can’t and this isn’t obvious (they aren’t mind readers!) then ask to lie down in the bed). The blinds were closed and the lights were turned out because despite the fact I was wearing sunglasses, after 5 months of not leaving my bedroom, having the blinds constantly closed, the lights off and living in almost pitch black, the mild light shining through the doctors window whilst I had sunglasses on and my eyes closed still felt as if I was staring, directly into the blinding sun. Extreme hyper-sensivity to light may even be an UNDERSTATEMENT.

During the consultation, due to my limitations, lack of strength and energy, at most I could whisper a few words. My impaired cognitive function left me unable to listen to people talk and absorb information so my parents did most of the talking and communicating for me. The majority of the consultation is spent going over the paperwork and discussing an in-depth detail of history and symptoms so the doctor can begin to build a picture of ‘what has gone wrong’. For me this went something like this… when Dr Monro asked my if I had ever experienced whiplash, I did have to reveal a car accident I’d been in at the age of 18 and had hidden from my parents for all these years! At the time I had been under strict orders from my mum not to leave the house because I was extremely sick (how ironic) but as she left the house for a few hours I decided to sneak out to my boyfriends, only to crash, sustain injuries to my neck, back and knees and then be too scared to tell anyone about it! My parents got a nice SURPRISEEEE during our consultation! The doctor also conducts a brief physical examination… as Dr Monro walked over to me she stated, “You are over breathing. You take too many breaths per minute and your breathing is erratic. I suspect this is alveolar hyperventilation, which will be causing respiratory alkalosis, a decreased pressure of CO2 in your arteries and an imbalance of acid in the blood which will be putting too much strain on your liver.” She then felt my pulse and said, “Your heartbeat is erratic and fluctuating too much.” She took one look at my face and explained, “You have lymphadenopathy. Your lymph glands under your chin and along your jawline are swollen. You will have chronic active viral infections.” We could never understand why I had a ballooned out, swollen face and about five chins (grose I know) when I was severely underweight?! She then went onto test my neuroglical sensations. She asked, “Can you feel this?” I responded, “Feel what?” I looked down and she was holding a vibrating piece of metal on my legs, my feet and my knees and I couldn’t feel a thing. I took my sunglasses off so she could shine light into my eyes where she found, “Your pupils don’t react to light. They are constantly widely dilated.” This along with me being unable to hear noise vibrations near my ears meant that I have developed severe dysautonomia. The autonomic (automatic) part of my nervous system is seriously malfunctioning. I was actually in shock. How had she been able to find all these things wrong with me in a matter of minutes when the NHS couldn’t find one thing in 10 years?!!?!? This is the initial plan that was created for me after the consultation:

12

13

Once the consultation is over most patients go back to the waiting area where there are drinks you can help yourself to whilst you wait for test recommendations but I was moved into a private room on the side of the ward. Remember if you aren’t automatically moved to a bed and you want/need a bed then just ask if there are any free. Advocate for yourself and your needs! Dr Monro compiled a list of test recommendations based on my history, symptoms and physical examination, then a member of staff from the patient liaison team came to discuss the tests and costs with my parents. They even offered to talk outside of my room due to how the noise and movement within the room effects me (have you ever heard of medical staff so understanding, aware and accommodating??!?!) Usually the tests are put into two priorities – priority one and priority two. This obviously depends on how many tests are recommended to you because if it’s just a few they won’t be put into priorities. The amount of tests recommended to you really varies person to person, it can range from 1 or 2 to 10-15 like I had. You can see my test recommendations below (I will explain what the tests mean when I share my results). Some of the blood tests are done in Breakspear’s laboratory but most of the tests are sent to different laboratories around the world!

Priority One

  • Monro Fatigue Panel (blood test)
  • Haemotology & Biochemistry Profile with Electrolytes (blood test)
  • Immunology Profile (blood test)
  • Vitamin D (blood test)
  • UOA + GPL + TOX (urine sample)
  • Immunoserology of Lyme Panel B (blood test)
  • Viral Panel Comprehensive (blood test)
  • Coxsackie Abs (blood test)
  • QIFT Test (tests with the neurologist)

Priority Two

  • Lymphocyte Sensitivity Test (blood test)
  • IgG Comprehensive Food Panel (blood test)
  • Intestinal Flora Immunity + Candida (blood test)
  • Comprehensive Stool Analysis with Parasites X 3 (stool sample)
  • Total Mycotoxin Panel (urine sample)

I am extremely grateful to be in the fortunate position where we were able to say to Breakspear, ‘do whatever it takes’. Other people aren’t so fortunate so when choosing tests, many patients only choose priority one to begin with because of the costs, then if they are able to do priority two tests further down the line they do so whilst other patients choose the tests that they feel will be most beneficial to them. Remember you are the one who is ultimately in control of the decision making, Breakspear are there purely to guide you. Most patients have the blood drawn for the tests after their consultation so they don’t have to return to the hospital at a later date. This is what I did and I had 25 vials of blood taken in one go!!! Back in January my peripheral neuropathy (damage to the nerve cells that lie outside the brain which you can read more about here) meant that the slightest touch of a finger upon my skin or the brush of a piece of clothing left me flinching, screaming and crying in agony. My body registered touch as pain, the sharpest pain you can imagine, it was as if I was being stabbed. Two nurses either side of me did their best to keep me conscious. My body’s usual automatic response to any intrusion such as an injection or blood being taken by a needle was to black me out because it was in such a crisis mode it didn’t know how else to cope! The nurses then injected me with Vitamin D, in my bum! Going to Breakspear was the first time I had left the house in 9 months so they predicted my Vitamin D level would be be close to non-existant …  it felt strange because prior to being sick I found injections incredibly painful but it actually felt nice to have pain that was only temporary? Dr Monro passed by briefly before we left… she prescribed me Acyclovir, a broad spectrum anti-viral drug she wanted me to begin straight away as she highly suspected I have chronic active viral infections suppressing my immune system. At first we questioned whether we should wait for the comprehensive viral panel test results before I started treatment? What if I didn’t have any active viruses? Would this treatment then be harmful? We also wondered whether we should have waited for my vitamin D test result before having the injection? Oh well too late for that now! We were all in, there was no doubt about it. I remember lying there, unable to talk, unable to be awake, praying that this would be the answers I had so desperately longer for. There was absolutely no guarantee that any of this would help me and knowing that my life was in their hands was terrifying to say the least but it really was my last and my only chance of survival.

After our consultation Dr Monro wrote this letter to my doctor at my local GP surgery:

1617

18

19

Can you believe it? All that in one day! They wanted me to return for more tests and to begin treatment the very next day! And so the journey had begun, the journey I had longed for so many years before; the journey that would reveal the answers that I had been searching for, and the journey that would save the life that I had already mourned for.

  • I would like to say that my experience at Breakspear is not the same as that of other patients, everyone’s journey is unique and I am simply sharing my individual experience and opinion. Please feel free to ask any questions and I will try my best to answer them. The one thing I’m not willing to discuss is how much we have spent at Breakspear so far. I will discuss the costs of specific tests or treatment I’ve had but not overall costs so please respect this and bare it in mind. If there is anything in particular you would like me to write about in future posts then let me know!

***Don’t forget to subscribe to my blog by entering your email on the home page to receive notifications when I publish a new post 🙂

 

 

20 Comments

  1. Jana November 2, 2016 / 10:37 pm

    Wow! Thank you SO much for this detailed post. Will be reading next one now. Before I read it, I reckon one of the problems is toxic mould. As we know from the Times article, you are better now. So, so pleased for you!

    • Emma November 18, 2016 / 4:52 pm

      I’ll be publishing a new post tomorrow with all my test results I don’t have toxic mould although my Dr suspected it! I’m not ‘better’ I’m still very sick just not as sick as I was thank you Jana

      • Jana November 18, 2016 / 5:16 pm

        Hi Emma,
        Progress and positive thinking are the most important things – you are doing better, that’s great. I hope the doctors will help you further and that you will recover fully or at least that you will be able to lead a much fuller life.

        I’ll read your post with interest – I think I’ve signed up for updates.

        I have also contacted the clinic and will be booking an appointment.

        By the way, I am sure you get tons of advice every day (we all do), but one thing which has been really helping me every day for the last 3 years (I’ve been ill for 3 1/2 years) is meditation. I meditate every day with Headspace app if you ever wanted to try it.

        Best wishes to you

        Jana

        • Emma November 20, 2016 / 11:03 am

          Hi Jana,

          Thank you so much. I hope Breakspear can help you like they have helped me 🙂

          I have used Headspace app in the past but haven’t for a while so I think I will get back into meditation soon.

          Take Care, Emma

  2. Victoria Holmes August 9, 2016 / 2:59 pm

    Hi Emma,

    You are one brave soul indeed! I suffer with moderate and at times sever ME/fibro and I am in the process of filling in forms for Breakspear Hospital. Two different people have told me about your blog and so I’ve been reading with interest and heartfelt empathy.

    I’m currently on the candida protocol (10 weeks so far) which is all organic mostly vegetables, wild fish, chicken, nuts, seeds, berries, apples, 100% chocolate only, no sugar, minimal buckwheat or quinoa and anti fungal teas which I haven’t started yet. So a very limited diet indeed esp for a sugar addict!

    Once you’ve been on the diet for 1 year you will (hopefully) start to see improvements in conditions such as ME,MS,cancer even as this candida yeast is a nasty parasite.

    Having read what you’ve disclosed here so kindly and with much effort on your part considering how ill you are I am wondering whether I will be overwhelmed by the results of any tests I have done at BH. There seems to be so many options to follow and maybe, just maybe my ME is all to do with candida?

    I’m torn between wanting to get the help BH offer and whether to wait and keep doing the candida cleanse for another 9 months and see how my symptoms have changed if at all I need to pray more about it as I just don’t know.

    Every blessing on you.

    Vee x

    • Victoria Holmes August 9, 2016 / 3:01 pm

      Also could you tell me what the Munro fatigue panel is please?

      • Emma November 20, 2016 / 11:12 am

        Hi Victoria,

        So sorry for the long reply. Thank you for your lovely comment.

        I’ve been paleo for two years so I only eat meat, veg, fruit, nuts & seeds. I don’t eat dairy, grains, legumes or refined sugar. It sounds very similar to the candida protocol! The diet has helped me 🙂

        It is possible that your ME symptoms care being caused by solely candida but often candida overgrowth is because there is a problem with the immune system so the immune system can’t keep it in check. So it is likely/possible that there is something surpassing your immune system.

        The Monro Fatigue Panel is with Acumen Labs and it is mainly to do with mitochondria issues and the energy making process. It also looks at chemical sensitivities. I will be publishing a new post soon explaining it.

        Did you end up going to Breakspear?

        Take Care, Emma

  3. Jude Gough July 26, 2016 / 7:02 am

    A well written blog Emma ! Newsy and infornative ! It’s a clear reflection of the great expertise and care one receives from the Breakspeare Team . As you mentioned in your earlier days , I would not be able to teach full time , exercise or exist in the form I do today without their guidance , medication and commitment !
    I’m so delighted you have started your journey . You are an inspiration to others . I’m gutted you ve had to experience what you have so far at such a young age . Like me you are lucky you have such a super mum , family and friends as a support network . Almost this is as important as medication !
    Look forward to seeing your progress ! Good luck

    • Emma July 30, 2016 / 10:36 am

      Hi Judith,

      Thank you for your lovely comment! I am pleased to hear you think my blog does Breakspear justice for what they can do for so many people 🙂 I am so pleased to have met you otherwise I probably wouldn’t have gone to Breakspear! We are both on the road to recovery now which is the best place to be xx

  4. Angela Callick July 18, 2016 / 10:43 am

    Fantastic! I’m so glad you’re getting the right help to acheive wellness

    • Emma July 18, 2016 / 5:27 pm

      Hi Angela,

      Thank you very much! I’m so pleased I have found the right treatment that is working for me 🙂

      Take Care

      Emma

  5. Melissa July 18, 2016 / 8:40 am

    Hi Emma,
    Great blog post that I’m sure will really help those thinking of going to Breakspear.
    I’ve been a patient of Dr Monro since 2013 and she has helped me get my life back after I contracted Lyme disease from a tick bite.
    Best wishes to you and I’ll look forward to reading more of your posts

    • Emma July 18, 2016 / 8:55 am

      Hi Melissa,

      Thank you! I really hope it helps others who are considering going to Breakspear. The more people who are aware of Breakspear the better because more people will be able to get help 🙂

      Sorry to hear that you are also sick but it is great to hear you are also a patient of Dr Monro and have seen improvements. I hope it continues for you!

      Take Care

      Emma

  6. Rachel July 18, 2016 / 7:01 am

    Thank you again for sharing your experience Emma. It’s shocking to read how seriously ill you became and I hope some good can come from you sharing your story.

    Wishing you all the best

    Rachel

    • Emma July 18, 2016 / 8:21 am

      Hi Rachel,

      It is shocking for even myself and my family to look back at how sick I was. I think that at the time we were so consumed and overwhelmed by what was happening that it was difficult to see the situation from the outside looking in!

      Thank you, there are already some positive things happening from me sharing my story for myself and for others as well 🙂

      Take Care

      Emma

  7. Emma July 17, 2016 / 12:44 pm

    Amazing blog post Emma. Really well written and informative and I’m sure will help so many people curious about Breakspear.

    I am so glad you are beginning to see small improvements, I know from experience how slow it is….but keep focused on those small steps. You are doing so well and are one of the most inspirational people I know!

    I haven’t been to Breakspear, but could relate to this post because in the last 6 months I have found SO many different things wrong, after just having the ME label slapped on me for 16 years.
    It’s overwhelming in some ways isn’t it? To know so many things are wrong – but also empowering too. At least we have something to work with.

    And one last thing – during my severe years with ME and also during relapses now, I also have widely dilated pupils unresponsive to light. I think this is a real biomarker for ME/adrenal fatigue / dysautomnia.

    Sending loads of love babe.

    Emma (from the consciouslyhealthy blog) xxx

    • Emma July 18, 2016 / 8:17 am

      Thank you so much for your lovely comment Emma! I know you understand a lot of what i’ve gone through as you’ve had similar experiences yourself.

      It’s very overwhelming considering we have both been sick for many years without really knowing ‘what’s wrong’ and to now find out the amount of things that have gone wrong! This information is power though and it is only going to aid us when it comes to treatment options 🙂

      Widely dilated pupils that are unresponsive to light is a sign of dysautonomia because it is controlled by the autonomic nervous system but I personally don’t think it’s a sign of ME because everyone with ME has different thing’s ‘wrong’ with them so not everyone has problems of the autonomic nervous system. I don’t know much about adrenal fatigue but I’m interested in learning more!

      Lots of love xxxx

Leave a Reply

Your email address will not be published. Required fields are marked *