"Cardiology Outpatients - Negative 1st experience"

Scared and anxious after being told over the phone by my GP I had a severely impaired heart, I waited 3 weeks for my first appointment with a heart specialist. 

To pass the time, I googled and learned what I could, writing questions to ask at my first appointment so it wasn't wasted, so I didn't come out afterwards thinking I should have asked this/that. 

I googled who my Consultant was going to be and was hopeful that they would treat me with sincere empathy since I was only in my early 40's diagnosed with heart failure.

I hoped to come out of the appointment with some new knowledge and feel reassured and feel confident that my new Consultant and my local cardiology service would have my back. Hoped that I would feel reassured that they were going to do their best to look after me and that I wasn't just a number. 

Not what happened! 

Start of the appointment was going ok where the Consultant was taking details of family history including all my siblings ages.  Then they asked about symptoms such as breathlessness to which I explained I have asthma and I'm always breathless so how would I know the difference? They just nodded and then looked at my last admission details for asthma. 

The appointment proceeded with them talking about changing medication and there are things that can be done all the while having frequent looks at the time.  They even at one stage made a muffled mention of time. They stated they would write out what bloods I'd to have done, check me over and let me be on my way. 

So I asked if I could ask some questions to which they replied "yes, shoot". But I felt under pressure as they were still clock watching and edgy on their seat. They gave me very brief and what I found to be flippant/dismissive answers and at one stage took my questions & prompts paper off me to start looking at them themself. I hadn't written them out for someone else to read!

That completely threw me and when I took my pages back I skimmed through and only asked another couple because I knew they wanted me out of the room. They even forgot to check me over although I'm guessing it was only to listen to my heart or something.  On the way out I even apologised and explained that they were the first heart person I had seen and considering they also said that they would refer me to the heart failure nurse specialists but there was a very long waiting list, the department was profoundly underfunded and there were not enough of the nurses for the population, they was the only person I would see for a long time.

So I did not come out feeling reassured or that they cared. I did not feel I had more knowledge or that my local cardiology service has my back. I am still scared and still anxious and a little confused. In one hand I've been told I have a severe impairment and have heart failure but it didn't seem to be treated as serious. It would of course be good if it wasn't serious but everything I have read states that it is.

I appreciate that underfunding can play a huge part but there were  still ways that my first appointment could have been improved: 

For instance when the appointment letter came out,  it could have come with information about what to expect at the first appointment and the approximate time allocated. This would have possibly helped me prepare and perhaps prioritise my questions and I would have been more aware of the time at the appointment too. 

A questionnaire could have been included about family history which would have saved easy 15 mins of the appointment. It could also have asked details about any symptoms. This then could have been posted or emailed to the Consultant's Secretary in advance (providing their bosses allowed time for them to read the responses). 

Lastly, the Consultant being aware of the waiting list for heart failure nurses and lack of support could have put together an information pack about my condition, advice on lifestyle changes, charities to contact such as NI Chest Heart and Stroke and also Cardiomyopathy UK. It could have contained details about medications and what they hope to achieve. It could have contained website addresses to look at such as BHF, Pumping Marvellous and the one that the Consultant did mention I look at, heart failure matters.org and importantly since there are lots of scary stories on the internet, the pack could contain a myth busting page to try to give some reassurance. It could have been a helpful little info pack to make me feel my local cardiology service cared enough about how I might be feeling.

Alas, I am left to find my own support ( I've contacted the charities), Google everything, take the meds and keep my fingers crossed that I respond. 

My local GP Practice Manager saw that I was upset 2 days later when I was there to collect my prescription, asked what happened, hugged me and tried to reassure me that my GP practice will have my back. They also suggested I write a letter of concern to the Trust. I'm struggling with this though as the Consultant I saw will be my Consultant that I see again. I feel bad that they were under time pressure and I may have made them run over in clinic but they could have also offered to bring me back another day to go through my questions.

Whomever makes time slots should allocate extra time for both the Consultant and patient for the very first appointment! 

Trying to decide if I should request a referral to a different Trust but they are all probably under pressure and under staffed. Still, I think there are better ways to manage.