Fallen into a black hole?

[hall2]

Hi all I've been diagnosed with ET CALR-2. Had this for over 20 years and been on aspirin daily. I've been seeing haemostat privately as first I was covered by insurance but my ex has been paying for the last few years. Saw haemo about a month ago. Platelets have been gradually rising over the last couple of years now at 770. Haemo has been mentioning me going on pegasys and at last appointment he said there was no point in waiting any longer and due to the cost of Peg he would transfer me to the NHS. He told me that his secretary at the local hospital would be in contact within a week or so to arrange an appointment with him at the local NHS hospital. A month later I've heard nothing. Went to GP the other day to ask if they could kick start something. He was excellent and advised me to phone haemo dept then ask for his secretary and email a copy of the letter from haemo saying he wants me to go on Peg to her. Evidently if GP does a referral it will be seen as restarting and I may end up seeing someone else with a different course of treatment! So I've taken his advice and now waiting to hear! Though it was only two days ago I spoke to her and scanned and emailed the letter! When I spoke to her she took my NHS number and checked and said there was nothing in the system for me! Well it's the weekend now! How long should I wait before contacting her again? GP told me to go back to him if I don't get anywhere! Has anyone else had this kind of experience?

[EleanorPV]

Can you contact your haemo at his private clinic and explain to him?

[hall2 in reply to EleanorPV]

I have spoken to his secretary at the private clinic several times and she has said she would get a message to him but it has made no difference so far!

[socrates_8]

Hey Hall2...

All sounds a tad unsatisfactory to me... I think I would be seeking a referral from your GP to see another Haematologist ASAP!

Buggar waiting around... The only person who can really look after you is YOU!

Hence, w/ your platelets on the upward spiral best that you don't mess about with any of this, and contact your GP again pronto...

Best wishes and hope it all works out well for you...

Steven

(Sydney)

[hall2 in reply to socrates_8]

Thank you!

[Wyebird]

My advice would be to ask your GP to start the process whilst you wait. Also tell GP you will go any where in the country to see a haemo. I did that. Once you are in the system and you’ve see a haemo you can get transferred. ( this happened to me)

Meanwhile continue to pester your heamo’a secretary.

This way you’ve got a few irons in the fire.

Good luck

[hall2 in reply to Wyebird]

Good idea thanks for your reply.

[jointpain]

As you said it was like starting from scratch going onto the NHS system. Which gives them the allowable two weeks before a haematologist sees you for the first time. My wife had this last year after returning from France, the GP would only refer her to the hospital after seeing her, even though he knew of her diagnosis from France weeks before. As it was, the day of the appointment with the haematologist was 16 or 18 days after we returned. And as it happens she nearly bled to death that day of the appointment and ended up going into A&E instead. Wishing you all the best. Steve.

[hall2]

That sounds awful I hope your wife is ok now. I’m going give them a few days then chase up again! Thanks for your reply.