Unsure what to do, they cancelled my long awaited appointment!

[HereForAWhile]

Hey,

I posted here a while ago that I was being investigated why my red blood cell count has been up for a while now.

I had an appointment (REFERAL booked) and while nervous was looking forward to finally finding out why my counts are off.

Well I just got a call from kings college hospital saying that they had cancelled my appointment due to the consultant not triaging the REFERAL and they haven’t given me any other options just to go back my GP.

I’m so upset? I’m not sure what to do or what I can do as they didn’t even give me another appointment and all I want is answers

[hunter5582]

That is not acceptable. Make that very clear. Suggest the following.1. Establish whether the hematologist declined to see you after reviewing the case or never reviewed the case.

2. Go up the next level at the hospital once you know and file either file a review of disposition, appeal, or formal complaint.

3. If this hospital is not cooperative choose another.

4 Never give up. Never surrender (per Winston Churchill). Assertive patients receive higher quality care. Passive patients do not. Do not accept NO for an answer. Keep pushing until you get the quality of care you deserve.

[Tess74]

How frustrating and disappointing for you. Do contact your GP again and ask them to re-refer you pronto. You won't get answers straight away as it can take a while, at the 1st appointment you'll probably get questioned on your life style, diet, smoking habits etc then a fair amount of blood tests to rule out/look for the usual obvious mutations (jak2) then its over a months wait but from there hopeful you'll get some idea what's going on x

[Dovme]

Hi

How frustrating try this Patient Advisory Service at Kings College Hospital perhaps they can help

kch.nhs.uk/patientsvisitors...

[Hidden]

You might want to get your GP to refer you to the centre of excellence MPN clinic at Guys. They are excellent.

[HereForAWhile]

Hey everyone, thanks for your kindness and help as always!

I put my foot down and demanded that I get some answers! So should have some idea on what’s going on on Monday after 2pm as my GP surgery said it’s silly that I haven’t been given another date and no real reason as to why they’ve cancelled!

I’m still hoping that the high blood count is due to something other that PV but if it is I’m sure I can live until old age as I plan on doing this!

[hunter5582 in reply to HereForAWhile]

That sounds like a good plan on both counts. Do be sure to see a MPN Specialist and not just any hematologist. mpnforum.com/list-hem./

[IrishHiker]

That rots!

[Wyebird]

Oh how awful!! I do t know what to say except Go back to your GP explain what has happened and if you can’t get that appointment back say you will go anywhere in the country offering you an appointment. Once you attend that first appointment you can get transferred closer to home. Stay by on that appoints phone y t you get one.

That’s what I did.

Good luck.