can't get an appointment...

[yvonneu]

..for three weeks. Tried ringing this morning to see if there was a cancellation. N o joy. Tried at lunchtime. Nothing. Just tried ringing now and the phone is just ringing continuously so I cant even speak to the nurse who did my blood test the other week.

My thinking is this: when I have my diabetic review on the 15th, I shall make an appointment with a GP for afterwards.

So...I was diagnosed with pernicious anaemia on the 26th January. Doc called to tell me over the phone when I was at work. Said my normally low B12 level was normal. Told me he would keep an eye on me and repeat my bloods in a year. No other treatment offered.

I didn't respond as I think I was too shocked.

I feel a bit as if I am in limbo at the moment. I have been with this practice nearly forty years so I trust that they know what they are doing and have my best interests at heart but....

[Lisahelen]

As far as im aware most surgeries operate a first turn up first availabe appt system on a daily basis- mine does. So you could try waiting before they open in the morning to see if you can get an appt.

[yvonneu in reply to Lisahelen]

my practice doesn't do that. I'm just ringing every day to see if there's a cancellation at any of their three surgeries !

Thank you for your reply

I'm from Leeds in the UK

[yvonneu]

do you live in UK ? Reading other posts it would seem that many of our friends from the US are receiving quicker treatment !

[yvonneu]

you are correct...it is not right that they are not choosing to treat me..either through ignorance or not financially beneficial or...?

[wedgewood]

If you have a diagnosis of P.A. You must receive treatment immediately . NO DELAY ! ASAP ! If you are a member of PAS , phone them and explain the situation . You will receive the best advice possible .

[yvonneu]

so how did you get round their ignorance ?

[greenbexy]

My surgery is the same. Make an appointment for next week, then phone every morning, for cancellations. Then if you get one you can cancel next weeks, but if you don't, you have one booked. My doctor ended up phoning ME asking why I hadn't made an appointment, errm.. tried, believe me I tried, but got one booked, for... errm next week! 25 minutes on the phone, then tell me 'you are number 16 in the queue'! Deeeep breaths!

[yvonneu in reply to greenbexy]

outrageous. Trouble is, many of us cant afford to go private so we just have to badger them instead until our voices are heard !

so..apart from feeling weak and sometimes breathless, I am getting hot flushes at any time of the day or night, yet I went through the menopause over five years ago ! lol.

Oh the joys !

[greenbexy in reply to yvonneu]

Thats not happened yet, not quite sure if I want to say 'thankfully'. Night sweats? Frequently! Im 42 and had my fibroids embolised, I've been told that 'any messing down there can bring it on'!

Tell you what though, feeling so much more empowered being on here! We can download documents that are so relevant to back up our case, its our life and our health that matters!

Think the receptionist knows me now, after not needing the doctor for years, all of us are there at the moment for one thing or another! -two teenagers and a husband mithering her.

[yvonneu in reply to greenbexy]

lol..thats no bad thing. Think our receptionist is fed up to the back teeth of hearing my name lol

[Sleepybunny]

Hi,

Like Wedgewood, I'd urge you to contact the PAS (Pernicious Anaemia Society). If you are a member they may be able to intervene by writing letters...easier for them if you have a confirmed diagnosis of PA. At the very least they will be able to suggest useful info you can look at.

pernicious-anaemia-society....

PAS tel no [phone]

Office open every day except Sundays and some holidays. Answerphone so messages can be left.

Link to stories on Martyn Hooper's blog about how PAS has helped people.

martynhooper.com/2016/09/23...

martynhooper.com/?s=Five+ca...

A long period without treatment could lead to permanent neurological damage.

Some people on the forum contemplate making formal complaints about inadequate or lack of treatment. I think this can be a difficult route to take, people can end up labelled as difficult patients.

citizensadvice.org.uk/healt...

Have you considered writing a letter to GP?

b12deficiency.info/b12-writ...

Your local CCG may be able to tell you the standard time period between a diagnosis of PA and treatment starting. Perhaps PAS may be able to?

nhs.uk/servicedirectories/p...