The GP list.

i LOVE my GP. i wouldn’t want ANY other! she is kind, concerned…even a friend if and when i need her to be…. yet able to detach and give out to me when she needs to. She fits the mould of the GP in my childhood – the one who worked with gut instinct, saw more than was told, did home visits they weren’t needed to….she has a REAL vocation.

BUT this is the NHS in 2014. NHS means for most people” GP=10 minutes slot”

  •  10 minutes during which she has to ask me how i am
  • try to read the body language – or in my case the extent of the slump!
  • listen to my problems,
  • take phone calls (not all the time but one GP does each session)
  • , and notate what SHE feels are the key points i am in with.
  •  10 minutes during which i feel agitated as i know that ANYONE HUMAN cant be:
    • looking at me,
    • making evaluations, and
    • sitting typing what she summarises as my main points.

That really doesn’t work for a good doctor…

That also doesn’t work for a complex health…

That doesn’t work with an all encompassing chiari malformation – which confuses neurologists and neurosurgeons with all its weird symptoms.

That doesn’t work when it classifies nationally as a “RARE CONDITION” …
What exactly is your GP meant to do in this case?
And i don’t mean that in a critical way…
i mean, are they not led by specialist team? neurosurgery?
So…I have a problem. i am BAD at going to GP.
Its a twofold problem. 1. when you are in need of an appointment, there isn’t one – our practice is VERY overstretched…so you really need to book appointments in advance. 2. as my health is chronic and complicaticated  and i have rare conditions, the GP often feels like a sign-posting off to another stage, so while that is appropriate the inner “sad” patient in me would like a bit of TLC with the referral I have a LOT of chronic health problems.

  1. a chiari malformation at base of brain.
  2. headaches
  3. neurological problems
  4. asthma
  5. heart arrhythmia – electrical defect
  6. osteoarthritis
  7. constant lumbar pain
  8. prone to depression

so is the BEST way to write a baseline list? Tell her the medication i take on a good day and a bad day? Am sure am not asking her to medicate for me? Am i? is that fair? chiaribody The chiari classifies as a “rare disease” – the huge number of neurological issues it causes are much beyond a GPs remit. So i tend not to bother mentioning them – or updating on them. like do i tell her now of the physio putty and the difficulty using my full hand? my fear of developing a “claw?”

Headaches are an integral part of Chiari Malformation  – an everyday variant requiring pain medication . A cocktail of some sort mixed by my patient OH.
Exhaustion. Again part of a neurological condition. But currently a part that pisses me off as so many people seem to be eager to “jolly me along” with the old “it takes time”…and i swear i KNOW they mean well, BUT i have had decompression surgery 6 months ago. I STILL feel the struggle to lift me out of bed. nd shortly after getting up, showered and downstairs i NEED to sleep!
weakness. what kind of a stupid statement is “my limbs are weak” – it can be countered by you will soon start to feel better, or wait til you are more mobile… but my chiari malformation covers that too!
Balance. My physio isn’t EVEN rehab physio it is VESTIBULAR rehab physio – how to walk without falling. How to move in a “busy” environment where there is opposing motion…and you almost feel dizzy? And i expect her to do WHAT with this?
Eyes. This seems pathetic. It seems NOT medical but it IS.

  • my range of sight is poor
  • my eyesight is blurred
  • the double vision test is ALWAYS double
  • my Right Eye can’t keep up with my left eye
  • my Right eye is crooked now in pictures
  • to move my Left Eye in its socket is painful
  • to look to extreme ranges with left eye hurts the eye muscle – i think
  • with my distance, varifocals, intermediate and close range specs i am NOT clear.
  • i feel dizzy if i try to focus while i move my head
  • i feel dizzy if i move my eyes and walk.
  • i AM being referred to OPHTHALMOLOGIST by neurosurgeon – but should my GP know all this?
  • 20140630_0020_Fionn_Birthday

all my numb feet, numb leg, tingling fingers, strange sensations in face… will HOPEFULLY be picked up by the neuro physiotherapist who is coming to do my “conductive nerve studies” – but again do i log THIS with my GP? So THAT little lot…and how’s the form…. WHAT am i reasonably telling her, asking her and expecting from her… is the rest of my days going to be reporting to GP…who passes me on…and shoot me on in ambulance to Belfast where they may do something..

weight and thus unfitness remains a problem as i have NO metabolism. Am almost completely sedentary. A walk to my mammy’s grave from the gate of the cemetery is me exhausted and breathless.
BLOODS. My new symptom – as in since i got out of hospital is that i have strange readings in my blood tests. They are being repeated every few weeks…and same old same old each time. The last time they extended the search but we have now found MORE “rare” to investigate…Connective Tissue Disorders. They aren’t pretty and am really not looking forward to hearing about them…but will hardly be back to be honest. photo 1 (1)
mood. it doesn’t cheer me up. i LOVE my GP… 😦 H



One comment

  1. Helen, I’m glad that you have a great G.P. but it seems absolutely crazy that there is such a time limit. Perhaps this post will help, in some small way, to make the powers that be sit up and realise that there is need for change in the way things are organised.

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