to think that, if you've just been told it's life-threatening, then 16 weeks is a long time to wait for a diagnosis...

[BreastmilkDoesAFabLatte]

It'll be 2 weeks until the referral is processed. Then 6-8 weeks on the waiting list for the tests. Then 4-6 weeks until I get the results.

I do passionately believe in the NHS, but this is really a bit much.

I've tried to go private, but have been told by my cardiologist that there is nobody in the UK sufficiently skilled who will take a private referral. (They all obviously passionately believe in the NHS too, I suppose [hmmm]...) So really, the only option is to wait.

I've told everyone involved how anxious I am. But I'm sure everyone on the waiting list is anxious. But I suspect I'm the only one on the waiting list young enough to have a baby daughter.

AIBU to feel a bit sorry for myself.

No YANBU to feel like this but tbh if it was that much of a threat to you then your cardiologist would probably have rushed you through the process quicker.

I know how this feels, but try to stay calm and thank god (or whoever) that you aren't one of those people that need to be rushed through. That's what I try to do. Especially when I go to appointments and am kept waiting longer than my appointment time because I know that some of the other people in front of me who might be taking longer than they should may have something a lot more serious than me.

Of course YANBU. I have no idea whether the waiting is avoidable or not but it sounds a horribly long time.

no yanbu

waiting list and results is one thing but 2 weeks for the referral to be processed - what does that even mean???

My mum works in hospital admin booking in patients for tests which inludes potential cancer patients. From what I know of her job, you sound as though you've been put on one of the fastest "pathways" - you can try to phone the secretary of the consultant (if you know who you are waiting to see) or speak to your GP to determine exactly which "pathway" or priority list you're on, then nag, nag, nag until you get put on the fastest "pathway" if you're not already on it.

I know it won't make you feel any better, but the time frame they've given will be worst case scenario, so if they can get you seen and tested within a shorter space of time they will do, rather than disappoint and cause stress by promising what they may not be able to deliver.

As for your cardiologist's opinion that there isn't anyone sufficiently qualified working in the private sector, it is simply their opinion. Get a list of your NHS cardiologist's qualifications (and, if possible, number of years experience as a fully qualified cardiologist) then phone up a private healthcare provider and ask them for details of cardiologists who could see you, including a list of their qualificationa and experience. You'll then have the answer to whether or not it is possible to see someone suitably qualified in the private sector.

Hoping all goes well for you.

I don't like PITAs much but you are entitled to be a PITA in these circumstances. Phone your cardiologist's secretary and tell her how this is affecting you and that you insist on being seen quicker.

I did the same when I got a referral to the "Rapid Access" skin clinic for a suspect looking mole. My "rapid" appointment was for seven weeks time, when malignant melanoma can go from treatable to incurable in weeks. I kicked up a fuss and my appointment got brought forward to three weeks. Personally, I couldn't get on with day to day life with such a wait ahead, but then I am a professional worrier...

Hope everything is OK for you though.

I am really sorry for your situation but I suppose if the option isn't even to go private.. there must really be a shortage of doctors. SO the waiting list can't be helped :(

Thanks for being nice to me.

In terms of the risks of me dying whilst I'm waiting... it's all so rare that it's impossible to know.

In terms of the 2 week processing time... that's simply everyone being on holiday.

If it was more urgent, yes it could be done quicker and/or privately... but really, I agree with cardiology that it's probably best to be done properly and by the best possible person. This has all come about because someone who wasn't properly diagnosed has just died, so I know it's probably better to wait than to seek less reliable reassurance.

I just want to curl up and cry for the next 16 weeks. But that won't help either.

OMG that is a LONG time to wait.

If it was me I would do what QoP has suggested. There's no way I could wait 16 weeks in your situation and I don't believe that the NHS has all of the highly qualified cardiologists.

I don't blame you for wanting to curl up and cry :(

How is your Mum coping with the news now? Is she being 'needy' or supportive - or a bit of both? Has she had DD for a sleep over yet?

Huge Hug

(Sorry, I have to go out now, elderly relative waiting for a lift - will be back later on!)

No it won't help to curl up and cry but I understand how you feel :(

Mine was a pretty unusual case too, so only one consultant was properly qualified to deal with it and she was about to go on maternity so if she had given birth early...

So try to be reassured that you're going to see the best rather than see someone else that isn't as good but can see you quicker.

Be kind to yourself during this time, and take whatever time you need. xxx

Of course there is someone skilled in the UK - what a load of nonsense. Plus many NHS doctors work privately half of their time!

Sorry to hear this and no your are not unreasonable but its a numbers game sadly

If this is a very rare condition there will only be one or two cardiologists who have treated it UK wide. So that's why you have unfortunately got a bit of a long wait beacuse they will have to access the experts in treating it.

It would be the same in any country I suppose with very rare conditions, only a few will have the expertise.

Was going to make the same point as ShakesPear about private consultants working for the NHS too. As it turned out, I tried to go private with my suspected melanoma and I would have seen the same consultant if I'd gone privately as I eventually saw at the NHS hospital!

FWIW, my grandpa is currently in hospital with a range of problems including dementia, Parkinsons, ear infections... my dad is willing to pay for him to go private yet he feels he is being deterred by the doctors at the hospital. I'm not suggesting for one minute that the NHS have any agenda for deterring you from seeking private treatment but maybe you ought to look into it anyway?

I think the OP has a rare condition, which is why there is possibly no other convenient alternative at the moment (sorry if I got it wrong) so what Mowiol says is right.

Was the same with my rare condition - I was in the process of being diagnosed with one thing when actually it was something different which was only picked up because another radiologist that had seen both rare conditions happened to see my scans. It would have been correctly diagnosed anyway after they removed said problem and tested it.

Perhaps if you're still unsure go back to your gp for reassurance?

Just to clarify... yes, the condition is that rare. And in the past few years I've had sufficient experience of the NHS to know that, when things are serious, it's usually best to see the right person.

cupcakes I'm sorry about your grandpa. I hope he gets the treatment he needs. But genuinely, I don't think this is the case in my position... I believe it's simply a case of competency. I'm always inclined to trust doctors who are sufficiently confident to admit to what they don't know.

ChippingIn My mum has been fab! And (by fantastic and literally miraculous coincidence) DD is now sleeping through the night. So I'm now getting all the sleep I need, which helps a huge, huge amount...

I'm glad DD has taken to sleeping through the night!!

I know I harp on but I still think it's a good idea to get her used to having sleep-overs at Grandmas or somewhere else - just so that later on, if you need a break, there is somewhere she is happy to go :)

Is there any chance you can get away for a couple of weeks in the middle - something to look forward to and time always seems to go quicker when you are away. I know you probably don't feel like 'holidaying' as such, but maybe a change of scenery would be good.

Other than stressed about waiting, how are you actually feeling (now you're getting some sleep). Are you suffering any discomfort, pain, restriction etc or are you OK on a day to day basis?

I'm OK. Just tired. Very, very tired. Also having strong cravings for tuna sashimi... but I'm having a hard time convincing anyone that's a symptom which needs attention

And I do take your point about letting DD have some sleepovers. We've got holiday with family planned in about 6 weeks (I rang the secretary to make sure no appointments come through for then!) and that'll be great... I can always use DD as an excuse for a ridiculously early night!

Thanks for listening.

You take care of yourself. I don't know where you are but I'm sure if you need a hand and are tired, people will rally round.

It's nice to know you aren't in pain as well :)

Tuna sashimi cravings - you should be hospitalised for that alone

We've got holiday with family planned in about 6 weeks That's nice ....or not still, it will give you a little something else to think about and plan/organise.

Oh &%@^

I've just utterly lost my composure and dignity with the poor secretary and wailed incoherently down the phone line.

It isn't her fault, nor is she able to do anything about it.

But they're now telling me at least 6 weeks until I get an appointment letter :( :( :(

I just can't %#@&ing handle this any #^&%ing more. I know that I've no reason more than any other to jump the waiting list, but I'm really not coping...

Right.

You must 'phone her back and insist that you are seen sooner. Like I said before, I did it and I know of others who've done it.

If you were waiting for an appointment for a cold sore or a chipped nail then I'd tell you to stop whingeing nad wait your turn.

Sending a very un-Mumsnetty hug your way.

DH has phoned and asked to speak to the head of department. I think his calm persuasiveness will do far better than my frantic sobbing... I'm not really able to string a sentence together without tears just at the moment.

Someone is apparently about to call him back. We'll see.

Thanks. Really, I know I'm not being a wuss. There's real, diagnosed PTSD involved. But I'm still not able to explain that sufficiently clearly, and always end up coming across to people as a manipulative arsehole.

BDAFL, I've been a lurker on your previous thread... Am hoping it al gets sorted for you so that you can enjoy your holiday.

Hope DH can get things moving for you.

:(

Hi - how did the test go today?? Are you all ready for your holiday?