Frustrated!!!!!!

[MammaCass]

I feel as if I'm banging my head against a brick wall. My local hospital was great when I was first diagnosed with paf, had a monitor within a couple of weeks and saw a cardiologist within 6 weeks and although he was a general cardio and after speaking with my son admitted he knew very little about AF he referred me to the major heart hospital in my area within days of my appointment..... Fast forward 8 weeks, having heard nothing I call the EP dept to find out when my appointment was likely to be.... They tell me nothing has come through and asked who was the dr I was referred to, I explained was sent to the EP dept. they then said if there was no consultants name it would have been binned, so I've waited 2 months for an appointment for nothing. I went back to the local consultant and explained all this to him, he re sent the referral with a consultant name on it. That was 14 days ago so I phoned the EP dept again.... Yes we have it it's in my basket here she said, I' ll send it down to get an appointment arranged for you .... They'll write to you and ask you to call back to arrange an appointment.... So I asked how long before I get a letter seeing I had waited 10 weeks to get to this stage and I was told three to 4 weeks and there's a three month waiting list for appointments.... So having waited around 14 weeks to be given the opportunity to make an appointment with an EP I will have to wait another 12 weeks to actually see him. That's 6 months where I can't drive, not on warfarin, continuing to have minor paf attacks and at the end of my rope because I'm so tired with no hope of circumventing the system that people who do not understand what I'm going through have set up. Surely we shouldn't have to fight the system to be seen by an EP in this way!

[BobD Volunteer]

No Mamma You are right we shouldn't but sadly there is a great shortage of EPs in UK. My first worry would be the lack of warfarin so my suggestion would be to go on the main AFA website and look up the Chads2.or preferably Chads2vasc2 calculators and see if you are in fact at risk as you may be low risk all along. If it says you need anti coagulation then print off all the data and go see you GP show him the paperwork and demand to be put on warfarin. You can a;lso show him all the information about risk etc. from AFA website. He may not like it but you really sometimes need to take matters into your own hands.

The other question is why you can't drive?. DVLA rules say you can drive "unless the condition is distracting or causes incapacity" or something like that. You should ring DVLA and advise them that you have AF. They will send you a form to fill in and unless you have black outs or anything silly like that they will tell you you may drive.

Good luck and keep us posted..

Bob

[MammaCass]

Appointment made to see my GP I am a moderate risk, so the GP said he would take me through the protocols. I asked the cardio consultant about driving and he said he could not stop me driving but if the DVLA got in touch with him he would recommend I didn't because I feel lightheaded when I get an attack

[meadfoot]

Hi. Sorry to hear of your experience. Similar to my own. I was hospitalised for 5 days and told an EP app would be posted to me thereafter. I waited and waited, eventually I paid to see an EP for an initial consultation and that way chose the EP I wanted. Annoying but when it comes to health it was something I felt I needed to do. Now being sent for a whole host of NHS tests which I should have been given while I languished in a hospital bed for 5 days. If you have the money to pay it may be worth it to you as a one off. Cost me £190 and had a private appointment in a few days of making the call.

Hope you find a way through the overstretched NHS system. They try their best but EP's, amongst others, are in short supply for an ever increasing health issue. Make sure you have anticoagulation if you need it in the meantime.

Good luck

Dee.

[Dodie117]

I too waited a long time as gp and hospital lost stuff/made mistakes etc.. In the end I went to a&e whilst having an attack. I was "lucky" as it was a bad one, probably made worse by anxiety etc.. This is the only time I went to hospital and generally am against doing so. However, I was kept I n and left there at 3am with my warfarin and an appointment for the coagulation clinic 2 days later. Felt a lot better knowing the stroke risk was minimised.

[MammaCass]

Thank you for your replies, I'm not usually this down, The hospital binning my referral with out giving the referring consultant the heads up just blew me away, what if I wasn't as pushy and just sat waiting for the appointment to come through? it could have been months and then I'd have had to start the whole procedure over again. But its in hand now, my GP is going to write a letter pointing out the failings of the system and requesting they take the circumstances created into consideration and bring the appointment forward. Now, I just need to breath deeply and calm down!!!!!

[Hettyw]

Hi MammaCass

The waiting time for your appointment and binned referral is not good enough. I work in the NHS and suggest you ask to speak to the Patient Advice & Liaison Service known as PALS. Explain how long you've been waiting since your original referral to them emphasising that the referral was completely incorrectly through no fault of your own so was completely out of your control. Tell them that you have effectively lost 14 weeks of precious time. Ask if your name can be placed on a cancellation list and make sure they have both your landline number and mobile so that you are easily contactable. Mention that from your viewpoint your condition could be worsening which could present a risk to your health and wellbeing. Patients don't like to complain as we feel very vulnerable when totally in their hands but don't be concerned as PALS is not the formal complaints process but a service that deals with concerns and issues very quickly and is there to provide advice and support and help you navigate your way around the NHS system. Good luck

[MammaCass]

I was considering this as my son, a paramedic has given me some info. One of the things this hospital is in special measures for which has been highlighted by the Frances report is exactly what they have done to me. I was angry, frustrated and spitting feathers this morning, but I've calmed down now and I've starts to put a coherent letter together rather than the rant I produced this morning, I'll sleep on it and see how I feel in the morning. But thank you for your message

[poppystorey]

How frustrating this must be for you ,It has made me realise what a good cardiac centre i attend at Blackpool Victoria Hospital .I was diagnosed in May of this year ,and since then Ive had my 1st appt with a consultant .angiogram. angiograph. cardio version , this needs to be done again ,when i realised I had gone back into AF I rang the EP she saw me immediately that day ,with in one week I have appt for heart monitor ,and will see her again the following day .Do hope you will get some proper treatment soon ,in the mean time do try not to get to worked up it will wear you out do take care .I will pray for you .Poppeystorey

[dedeottie]

I have been diagnosed for 2 years. I was put on warfarin as had TIAs but no cardiology appointment made. I have since moved to south Wales from lancashire and my doctor has referred me to a cardiologist but the waiting list is 32 weeks for a "routine" appointment. Am considering going privately. If I do could I ask to be referred straight to an E.P. since I'm paying.? Anyone any thoughts on this? Like you Manassas I have had many many frustrating errors made along my journey mostly made by admin staff but I have absolutely had enough now and am in full fighting mode!

[mumknowsbest Volunteer]

Hi

Definitely a referal to an EP no detriment to cardiologists, but you want the specialist in the subject after all you wouldn't fo to a general surgeion for a broken bone would you?