Wednesday, 24 June 2015

Chiari blogs: Tips for a stress/anxiety free consultation

Something that has bothered me for so long is that when patients enter the medical system (ie they go to hospital/ they are ill/ they are diagnosed/ whatever stage they are on) they get bombarded with information. If you are like me, you will be in this place feeling horribly desperate and ill, being told so many different pieces of information, having so many procedures mentioned and I guess it seems that it is expected that EVERYTHING is soaked up, stored and processed. If you are like me, you probably won’t "soak up" much (if anything) during such times and remembering what I have been told is almost impossible! Also, as the years have passed, my ability to retain things has diminished quite substantially which is incredibly frustrating! – you can read about my "story" here.

So, along the way I have had some pretty horrendous experiences but something that has been consistent is the note taking that my mum has done from pretty much day one.
I am lucky that my Mum knew from other people’s experiences that we would benefit from taking notes from the very early days.

I guess that is the next point. Have a “consistent person” attend appointments with you. Someone that is able to speak out when required, make notes so you can focus solely on the information you need to give and receive and most importantly, someone who can stay calm and be a calming influence in stressful situations!

Take a puzzle book or colouring book or anything else that can occupy your mind for a long while. Remember that things that require batteries have a tendency to run out when you least want them to! I have been delayed by over 3 hours before for a consultation and believe me, it’s not fun if there’s nothing to do but stare at leaflets and walls!

Be prepared for a first consultation
  • Write a brief medical history to give your consultant an outline should they ask.
  • List your symptoms and why you are there to see the consultant. Have a rough time span if possible. Also list if there is anything that makes the symptoms worse/better.
  • List your medication. Include doses and times taken.
  • Be prepared to listen and have physical examinations carried out if needed.
  • ALWAYS ask to be copied in to letters etc. It is your right and those letters can sometimes fill in the gaps that your note taker might have missed or answer questions that you forgot to ask!

This is an example of how I would type up the notes from the first meeting.

Header: (my initials) Hospital notes
Date:     Consutlant:                         Department:
Notes from (consultant initials):
Next steps:
Next consultation: (just aproximately how many weeks/months when s/he wants to see you again). It's so you have a timescale.

Have a plan for future consultations
  • Any unresolved issues from last consultation.
  • How I have been since the last consultation. Is there any change or noticeable differences? Anything significant to note? (Did the consultant ask me to do anything in particular – give results)? – if there is another professional involved that needs cross referencing, do that here.... write it separately including the date you saw them so you can flick to your file if needs be... be prepared to in case the notes haven’t reached them yet!
  • Questions and any immediate issues from this consultation

Set up a filing system for all of your letters
  • Keep a record (in a file) of all of your consultations with EVERYONE involved in your care. It is not unusual for other people to come on board and different departments to cross over. I get by this by having a file with dividers in. One for each department or professional. I.e. GP, Neurologist, neurosurgeon etc.
  • After every consultation write down your feelings and queries. I have only recently started to do this. After a series of “tricky” consultations, I started to get affected by the sheer thought of speaking to ANY medical professional. I didn’t sleep well, I started to get anxiety and I was just not “myself” before OR after for probably a week! I felt as though I was not being heard and that my feelings or wishes were not one bit taken into account. It was as if I was talking to a brick wall so I started to write down what I felt and that directly feeds into the prep for the next consultation. Also, part of the physical examination is having my eyes examined quite a lot. It is extremely hard to explain how that has affected me but imagine having someone that you have lost trust in being I promise you it does NOTHING for heightened anxiety. I used to await my appointment with dread and in my head it was totally irrational. I also felt confused and lost. This just had to stop and although I still get anxious, my stress levels are less and I am easier to live with since I started to have my own little reminders to feed into appointments or just realise that it was just head of the moment from the awkwardness of the day - on the day. I hope this makes sense. I guess it's just a way for you to personally document things and work out what you feel are the most imortant things to discuss because you have to remember that you can't possibly fit everything into a consultation all of the time.
  • Correct any inaccuracies in letters! THIS IS IMPORTANT! Those hospital notes are the “book of you” that medical professionals get to read before seeing you. If they are wrong then you are not necessarily going to get the most accurate care!

My file is set up like this:
    • First page: Important hospital numbers
    • NEXT APPOINTMENT letter, plan,
    • Dividers with departments on (including GP)
      • Appointment letter,
      •  Notes, 
      • Consultant letter,
      •  reflections.
      •  Plan for next consultation.
I really hope that you have found this useful. I am still refining my "tools" but since I have been doing these I have felt more in control of myself and able to keep on track. I found that with every consultation I couldn't deal with all of the information that I was being told on top of my emotions. I used to say that it was easy for Doctors and medical staff because they can walk away. It's so wrong to tar everyone with the same brush. I have been cared for by so many amazing, positive people but it was just that one person seemed to be more "powerful" than others. Now I have a little bit of ownership of myself back. Ok, not medically but emotionally. There is only one person who can control that and that is ME! 

I have learnt so many of the little tricks that I have mentioned by seeing chats and of course having conversations with people from the Ann Conroy Trust. They have really been incredible in providing a safety net of people going through very similar things and just a cosy little place where it's normal to be scared/worried/confused/everything in between! 

Please read my post about The trust and if you'd like to win one of two hand crocheted Elephants that I have made, please go to my justgiving page and make a donation (all ts and cs are on there).

Thank you for all of the love and support.
Love and hugs.

Monday, 22 June 2015

Chiari Blogs: The "emergency"/hospital bag.

Hey everyone,
Here I am again continuing my month of hospital related posts.
I decided to spend this month writing about all things hospital related because I am raising awareness for the Arnold Chiari and Syringomyelia UK Awareness Month in association with The Ann Conroy Trust. Please visit my other posts by clicking here, here and here.

Having had a fair few emergency trips or last minute admissions to hospital, experience has proven that it is useful to have a small bag packed with some essentials for the event of a last minute stay. It eases the stress for your loved one(s) having to go through your stuff trying to find the items that they think you will need.

Here’s what I have in mine.

Important information.

  • A file that contains: 
      • A copy of any important documents related to your medical situation.
      • An up to date list of medication including doses and times taken.
      • A list of contacts.
      • Note pad and pen – make notes! ALWAYS make notes when you can or get someone to. It’s a good idea to have important numbers written into the book too just in case. Also helpful for you to make a list of things that you need if you have to stay in for any length of time. I.e. phone charger, hair brush, extra clothes etc etc


  • Travel sized shampoo, conditioner and shower gel. (hospital lockers/drawers are usually quite small).  Empty travel bottles (so you can decant your own regular products) are available from most drugstores, some supermarkets and online but Matalan and Primark also sell them.
  • Face / hand wipes
  • Deodorant
  • Tissues
  • Toothbrush in a case and toothpaste. (yep, I have a “spare” one – just a cheapo one. At home we have an electric toothbrush with interchangeable heads... obviously this set up doesn’t work if we’re separated so having a separate cheap one is very useful in an emergency situation)!
  • Hand towel and flannel


  • Comfy pyjamas. Much, much better than hospital issued nightwear!
  • Cheap slippers (mine cost £2/£3 from Primark).
  • 2 pairs thin socks (better to layer them up than one thick pair – I get really bad cold feet and thin socks keep my feet warmer for longer). 
  • Underwear (not on pic)


  • Small purse with a few pounds in change in (useful for the pre payed tv systems and to buy a newspaper or magazine) –  If possible DO NOT take a full purse with bank cards etc – everything you have in hospital is your responsibility and unfortunately not EVERYONE in a hospital can be trusted! Lots of people have had money/bags/other personal belongings taken from them so it’s only worth having a small purse that you can hide somewhere with a small amount of money in.
  • Puzzle book/colouring book/ Pens, crayons
  • Empty carrier bag to put dirty clothes in.

I am raising money for The Ann Conroy Trust. Please visit my justgiving page and make a donation if you would like to win Juno the elephant or a miniature version named Junior. Both hand made by me!

Thank you for all of the lovely messages that I have had. I hope that this post is helpful.

Lots of love and hugs.

Sunday, 21 June 2015

Chiari Blogs: The Ann Conroy Trust. Who are they?

Hello everyone!

If you read my first post this month, you will already know that I have decided to write about my “experience” living with a brain condition. (If you haven’t seen that post, you can read it here). Today I want to take some time to tell you about the charity that I am supporting on my JustGiving page. 

Who are they?
The Ann Conroy Trust is the only charity in the UK that offers support, training and education to medical professionals to broaden their knowledge and understanding of Arnold Chiari Malformation and Syringomyelia. (Visit their website for more info on this).
Further to their research and professional training, they offer support to people with the conditions and their families too.

How did I find them?
I had been diagnosed for over a year before I had heard about The Ann Conroy Trust. I was visiting a relative in a hospital regularly and his nurse happened to mention the trust to me as if I should have known about them. It took me a little bit of time to give the helpline a call because I didn’t exactly know what to say. I knew very little about the condition, I knew how I was affected but that was it. I had worries, I had questions and quite frankly I was scared of the unknown. A really soft, friendly voice answered the call and within minutes I knew that I was talking to a wonderful lady and that some of my questions could be answered. More than anything, she was an understanding ear, someone that has heard pretty much everything I had said over and over before but still had the patience to let me flood it all out. She offered advice of how I can help myself and where to go medically. (They have affiliated surgeons with the trust). Since that first call with Lynn, I have joined the group on Facebook. From this group I have met up with someone local to where I live who has become a friend and an inspiration. She really does help me “cope” and I would have always felt lost had I not found the Ann Conroy Trust!

They deserve every single bit of support. The conditions are rare and easily over looked or not even recognised. (In my case I was apparently suffering with “typical migraine” until I had MRI scans)!
Awareness is needed!

How can you help them?
If you would like the chance to win a special hand-made (by me) cuddly Elephant (it was the most popular choice when I asked on the trust forum and my family and friends). Please visit my just giving page and make a donation. (Every penny will help) and for every donation made, I will be making a small heart – these will be stuffed into the Elephant.  In the comment section please state that you would like to be in with the chance to win. *please note that anyone that wishes to remain anonymous will unfortunately NOT be entered into the draw*. The draw will be made on Wednesday 1st July 2015 at 7pm GMT. REMEMBER, YOU MUST LEAVE YOUR NAME IN ORDER TO BE IN FOR A CHANCE OF WINNING!  (if possible leave twitter/facebook/instagram details too so I can easily contact you if you win).
Disclaimer: I have not been asked to write this post. All views are my own and that is why I would like to spread awareness and hopefully raise some money for this wonderful charity.