referred to Blackpool for a TAVI (Aortic Stenosis) not had confirmation is this normal?

[hilary77]

Hi everyone I have Aortic Stenosis severe and during my telephone consultation with the cardiologist who said “he was referring me to Blackpool for a TAVI & he was putting me on a waiting list which could be over a year” but I haven’t had confirmation that I have been referred or if I’m on a list, is this normal procedure? or should I be worried.

A little background I have Afib & was due to have a pacemaker & ablation at Liverpool earlier this year as part of the pre op I had to have an echocardiogram arranged at my local hospital which showed AS severe & a cardiologist rang as detailed above.

if anyone can reassure me I would be grateful.

Thank You!

Kind Regards

Hilary

[10gingercats]

You will have to do your own chasing up .in order to try and find out 'where you are in the queue'We cannot wait these days for the hospital to contact us .I have been to my local hospital at times to get answers as to dates and when I can expect to be seen. It can be hard work but increasingly this seems the way to go.

[hilary77 in reply to 10gingercats]

Hi thank you 10gingercats for replying,

I can’t chase up as I don’t even know if he has actuality referred me.

The cardiologist told me he was referring me on my phone consult but I haven’t even had confirmation that Blackpool has received the referral ?

I asked my GP if he could find out if I have been referred but they say they can’t help which I find astounding they gave me a phone number for booking enquiries which I rang but they only deal with booking appointments for morecambe bay hospital trust they in turn gave me the general number for Blackpool but I can’t get through.

I live in Morecambe & my local hospital is Lancaster Royal Infirmary.

I am under cardiology at Westmoreland for my atrial fibrillation & they can’t help as it’s a completely different heart problem.

Thank you x

[10gingercats in reply to hilary77]

This does sound very difficult but I do not know how it may be resolved other than by your own intervention. perhaps try the cardiologists secretary first? She presumeably will know how the cardio. organises his referals and should know if your referal has already been forwarded to Blackpool?

[hilary77 in reply to 10gingercats]

Hi again I don’t know the name of the cardiologist I just got a phone call after the echocardiogram to tell me I will need a TAVI & he will put me on the list for the operation at Blackpool.

I read another post on here for something else & someone mentioned PALS so I rang them & left my name & phone number. Think it stands for patient advisory & liaison service.

Thank You! so much for trying to help it’s much appreciated.

[10gingercats in reply to hilary77]

Yes. PALS can be helpful.Our local branch is varied ....sometimes helful and at othertimes not so...due I suspect due to individual staff and their attitude.

[10gingercats in reply to hilary77]

You may have to go to the hospital and go back to the echo. dept where if you ask for your records the echocardiologist who did your echocardiogram must be named.Another thing you might try is to telephone the British Heart Found. helpline and speak to one of their nurses for advice. I have always found them very helpful.

[PadThaiNoodles in reply to 10gingercats]

Going back to the echo dept. where you got it done is an excellent idea; that way you'll have a copy of the full report as well.

I got in the habit of this because my sister is a cardiac nurse practitioner in the States and she kept asking me what all my numbers were (which of course I had no idea). But I've found it really helpful on numerous other occasions.

[Lowerfield_no_more]

When you speak to someone in the appointments section at the hospital where you have been referred ask to be put on the cancellation list if you are able to take up an appointment at short notice due to a cancellation, although this may not be possible, as some hospitals apparently do not run this service. But if you don't ask you won't find out.

[10gingercats in reply to Lowerfield_no_more]

Most of my appoints. are sought this way...via cancellations .

[hilary77 in reply to Lowerfield_no_more]

Thanks for the brilliant advice Lowerfield I will ask to be put on the cancellation list.

Thank You!

[Skiffrower]

On the positive side this is why there are pre-ops so that they have a better chance of not coming up against a problem mid op. My heart issue was discovered in a pre- op for a foot !

If you are under Westmoreland for the AF , I presume they referred you for the echo. They should know when they then referred you and also could help with names.

[MoretonCross]

On a positive note, I'm off to my post op check up with the surgical team from Blackpool this afternoon in Preston. I had aortic stenosis and a couple of bypasses sorted out about eight weeks ago in Blackpool. The entire process was first class and I can't complain about any part of it. I had an eight month waiting list to survive and I just patiently waited to be contacted, which I was only to have the first date of operation cancelled owing to an emergency admission. So another three weeks to wait! Disappointing, but it happens. Other than that, well pleased with the Blackpool setup, accepted in the North West as being "the Gold Standard". I hope this helps a little, good luck with it 👍

[hilary77 in reply to MoretonCross]

Thank You! for replying do you have a phone number for Blackpool appointments? I just want to find out if the cardiologist that rang me did actually refer me to Blackpool, I don’t trust the NHS anymore sigh!

I know I will have to wait I just want to know I’m on a list.

so glad to hear you have a good experience at Blackpool.

Many Thanks!

[Alicant]

unfortunately poor communication and lack of joined up thinking ..must cost NHS £millions.As long as no one is accountable it will carry on…tail wagging the dog..sorry to say!

[Digger0]

Can you access your medical history on line from your surgery? If so. there should be a copy of the referral sent with date sent and to whom.

[Gooner1947]

I am also waiting for a TAVI with severe aortic stenosis.I probably had all same procedures in recent months. I eventually saw cardiologist in August who referred me for a Coronary Angiogram as part of procedure. I had that in October.

I hadn't heard anything for a few weeks so I rang the secretary of cardiologist. Two weeks ago I had a call from cardiologist confirming that I will need TAVI and my results of Coronary Angiogram are being sent to the "panel" that sort out the TAVI's. Unfortunately he could not give any timescales.

I live in South Wales. The TAVI will be carried out in Cardiff.

I was encouraged to get a call from Cardiologist as I felt I was definitely in the system.

[wilsond]

Ring the consultants secretary, they are usually very helpful