ENT : I depair. Got my first ever ENT... - Pernicious Anaemi...

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Nackapan profile image
27 Replies

I depair. Got my first ever ENT appointment.

By telephone

I explained can't use a landline so on mobile speaker phone as part of the problem . Sets of tinnitus of varying degrees abd head pains.

He was irritated and rushed

He just said;

Symptoms?

I asked if he had any background.

B12 problems

He repeated Symptoms.

I rattled off my list.

He replied.

I do not know.

Said to to get a referral to a neurologist.

I said that's where I started 3 yrss ago.

He ssid :

Scan

I replied yes I have had brain scans.

He said

Normal?

I asked what could be the reasons for some of or any of my symptoms.

He said we don't always have a answers.

So I said no ideas on anything I'm suffering with.

Answer.

No

?????

I said I need more tests. I'm trying to get on with my life. Daily symptoms for over 3 years .

He very irritated now.

Referred for ear pressure test and pysio.

Had to push him as ge dudnt thinknj needed either??

Needed to get something out of it.

Now a headache and furious / upset.

Now where???

I also did ask if a face to face might help to see me and examine me.

No

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Nackapan profile image
Nackapan
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27 Replies

I can understand your frustration, it's about time the NHS realised telephone conversations are NOT the answer, face to face consultations are a must.For weeks I have had the same problem regarding my partner, put on medication which made him delirious and ended up with a wait for an ambulance of 7 hours, only to be told he needs a blood test to find out what's wrong.

Asked for blood test (including b12) as in the past been low only to be told he couldn't have one for three months as his last test was in October ( b12 269). As I had been up all night waiting for the ambulance I wasn't fully awake, and didn't realise that he hadn't had a blood test for over a year. I rang again explained to the receptionist that he hadn't had a blood test recently and she looked up and said no that was two years ago. Still awaiting to hear if he can have blood test.

All I can say at the moment is the nhs has lost it's way.

Patients are being ignored or being given wrong medication.

Nackapan all I can do is sympathise with you and hope someone soon intervenes and shake the nhs up.

Nackapan profile image
Nackapan in reply to

Yes it's very very worrying.I worked in it for 36 years

Never I all the rounds if changes ect have I witnessed such a mess.

I really hope it is saved when we hopefully see an end to thee pandemic .

Acute services I thought were fairing well. ??

Sorry to hear if your partners bad health

in reply toNackapan

Thanks nackapan, after the third time of requestingFull blood test with b12 testing we have now been given an appointment. So fingers crossed will be able to find out if b12 results have had any bearing on his latest health.

I did notice a sign on our surgery door saying please do not ring for blood test results !

Sleepybunny profile image
Sleepybunny in reply to

Hi,

Sorry to read about your partner.

Has he been tested for PA and Coeliac disease?

UK guidelines indicate that people with B12 deficiency symptoms, should be treated even if their serum B12 is within range. See summary below.

Summary of BSH Cobalamin and Folate Guidelines

pernicious-anaemia-society....

I won't add much more as this is someone else's thread but suggest (if you have time) having a look threads below where I left detailed replies with lots of B12 info.

Some links may have details that could be upsetting.

healthunlocked.com/pasoc/po...

healthunlocked.com/pasoc/po...

healthunlocked.com/pasoc/po...

in reply toSleepybunny

Will start another thread

Janma123 profile image
Janma123

Hi Nackapan, that’s dreadful. Sending a big hug as I don’t know what to suggest. Jane x

Nackapan profile image
Nackapan in reply toJanma123

Perhsus it's all in my head ??It is ....literally 🤣

Janma123 profile image
Janma123

🤣😂

Vonnie-72 profile image
Vonnie-72

Sorry to hear this, you get your hopes up and actually think someone is going to help you at last but no just another waste of time. It’s so frustrating that no one listens or even tries to help at all, it makes you feel like a hypochondriac, but all this pain is real and the medical profession just don’t care that we live in pain every single day and make us feel like we’re making it up and it’s just in our heads! It’s just a mission to see any medical professionals let alone get them to listen to you and help you in any way. Sending hugs 🤗

Nackapan profile image
Nackapan in reply toVonnie-72

Very frustrating. Am explanation surely

Only so many things csn cause these symptoms. Like you say daily ongoing symptoms dismissed in 5 mins after months if waiting.

I can see why some 'cur

l ' in a ball and give up.

They say long covid has similar symptoms I hope sone light is thrown onto how to help people

Sleepybunny profile image
Sleepybunny in reply toVonnie-72

"it makes you feel like a hypochondriac"

I got diagnosed with hypochondria...

Nackapan profile image
Nackapan in reply toSleepybunny

Oh no !!

So sorry Nackapan it’s so frustrating for you,all you can do is go through the motions in the hope that you’ll find someone with a bit of compassion and an interest in trying to help you get well.best of luck x

ClareP5 profile image
ClareP5

Do you need to go back to EOD B12?

Nackapan profile image
Nackapan in reply toClareP5

I don't think so . Thanks for your thoughts

I'm injecting very frequently

ClareP5 profile image
ClareP5 in reply toNackapan

Good luck, it sounds ghastly

pitney profile image
pitney

so sorry to hear that once again you are having to put so much energy into trying to get answers, we all deserve better treatment than this. Hope you get some help from your GP eventualy 😱

Gen89 profile image
Gen89

Sorry to hear about your poor experience Nackapan. At the very least the doctor should have been interested and sympathetic.

Nackapan profile image
Nackapan in reply toGen89

Exactly

Christine48 profile image
Christine48

So sorry to hear this. Where is the empathy and care from doctors these days. Even being busy doesn’t excuse such an uncaring and hostile attitude to someone who is obviously suffering and desperate for help. I experienced very similar treatment but without the hostility here in N Wales. After ten months of getting nowhere following an urgent referral to ENT from my excellent GP I still had seen no one nine months later but was fobbed off during three phone calls. When I asked to go privately to actually see a consultant was told it would cost £250 and be a six to eight week wait. Horrified I went to Spain in Oct paid £80 to see a Norwegian ENT doc on my second day there she put a camera down my throat that day and arranged for me to have CT scan of the area of concern the next day which cost me £250. I had the result that afternoon. The reassurance from having had this was well worth the cost as I had breast cancer 7 yrs ago so my concern was it had returned. After ten months of terrible worry for my family as well as myself it was sorted in three days in Spain where I have never paid a Penny in contributions, and at a relatively small cost. Very good luck Nackapan and don t give up. Perhaps send an email to the head of your health board outlining the disgraceful response you are experiencing.

Nackapan profile image
Nackapan in reply toChristine48

Yescive paid for an MRI to be read to save the stress Also paid for ptsio

Also extensive eye exams and got some clout tinted glasses .

As you say worth every penny .

Not a bottomless put though.

Like you say we put 'in the pot'

Also I believe some of the best in thr NHS of yiu xsn get to see the right one!

I worked in it for 36 yesrs and csn truly say I've never seen it in such a mess.

Covid and brexiy a terrible mix fir akit if things.

No excuse for the total lack of care abd abrupt attitude .

I recognised the tone instantly .

One word

Symptoms

Is not a good opening 😕

How can help....overwhelming

Very difficult abd I think more face to face needed and examinations.

Gp will get th

e letter

I will see what that says

Christine48 profile image
Christine48 in reply toNackapan

Very good luck x

B12life profile image
B12life

keep trying different doctors, internal medicine, or family practitioners. find someone that listens.

waveylines profile image
waveylines

Oh Nackapan am so so sorry to hear about your dreadful treatment. Its just so unfair!!! There are a lot out there like that & then there are those gems, brilliant diamond cut gems who sparkle.....if you can find one. Lol..

The trouble is you are dealing with a brigade that operates on the basis of a fixed set of signs symptoms means this or that condition. If you don't fit any of these criteria then in the medics mind it doesn't exist & you are well! Its a nonsense & prevents enquiring minds exploring other possibilities which is what you need. Sending you the biggest of hugs........we care on this forum even if many medics don't! Lol.....

Nackapan profile image
Nackapan in reply towaveylines

Thank you. I'm over it .

Just feel like the referral was tickjbgva box.

Will await serjng the actual referral snd letter to Gp. No idea what that will say??

Mrsmr profile image
Mrsmr

Sorry to hear you were treated by a dismissive doctor. I think waveylines hit the nail on the head when she said " doctors operate on a fixed set of symptoms " if you don't fit 8nto a box they assume you are a hypochondriac. Very sad as most people would not go to the doctors if they felt well🤔🤔 take care.best wishes

Nackapan profile image
Nackapan in reply toMrsmr

Yes well-put

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