"Information Vacuum"

About: Forth Valley Royal Hospital / Cardiology Forth Valley Royal Hospital Cardiology FK5 4WR General practices in Forth Valley General practices in Forth Valley

Posted by concerned granny (as the patient), 5 years ago

My first cardiac event took place this year when I suddenly became unconscious and suffered injury.
At my first appointment with a doctor at the cardiology department eight weeks later I was told I may have sick sinus syndrome. Not a promising thought.
Now, over four months since becoming ill I'm still on a waiting list for further investigations. In the meantime I have had a TIA and received speedy investigations, a consultation, change of medication and an information leaflet.
There has been no proactive information given to me by Cardiology or my GP. When I have phoned the GP they do not have up to date information.
I feel like the communication is shocking. Are we meant to sit at home unaware of:
What has been found out so far
What will happen next
What lifestyle choices should be made re exercise/rest etc.
What to be concerned about
Possible first aid if appropriate
I feel like direct contemporary information should be available at a minimum and waiting time for tests expedited when acute risks to health and life may be present.

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Responses

Catherine Labinjoh

Consultant Cardiologist & Clinical Lead for Cardiology, Cardiology,

NHS Forth Valley

Hospital doctor, specialising in Heart Disease

Submitted on 16/08/2018 at 18:48

Published on Care Opinion at 22:20

Dear Concerned Granny,
You must be finding your current situation very worrying. I am really sorry to hear about it. We take the care of all our patients very seriously but especially those patients who suffer loss of consciousness and we endeavour to provide a priority appointment in such cases. Unfortunately our waiting times in Cardiology are much longer than we would like despite a lot of effort to reduce them but I am pleased to hear that you have been seen in the clinic - though I appreciate a diagnosis like "sick sinus syndrome" is never welcome.
Loss of consciousness can be very difficult to assess as it can be caused by a wide range of conditions and tends to occur unpredictably. It sounds as though the team are trying to get to the bottom on things with more tests and I am very sorry you have had to wait a long time for these. I am also very sorry to hear that you have had a TIA in the meantime but I am pleased that you received such good care from that point of view. We would like to be able to offer a "blackouts" clinic working in the same way as a TIA clinic and offer much speedier access to investigation. While we have improved our service a good deal in recent years, we still have more work to do. We certainly should have explained things to you to your satisfaction and provided you with written information, as we have excellent booklets available in our outpatient department. I would like to look in to why our communication has fallen down so badly on this occasion and I would also like to be able to answer your questions and provide you with the information you require. If you would consider speaking with me on the phone, please contact my secretary Sharon (01324 566832) and I will make further enquiries and arrange to update you as soon as possible.
Thank you for taking the time to contact us.
With best wishes
Catherine

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Catherine Labinjoh

Consultant Cardiologist & Clinical Lead for Cardiology, Cardiology,

NHS Forth Valley

Hospital doctor, specialising in Heart Disease

Submitted on 21/08/2018 at 23:22

Published on Care Opinion on 22/08/2018 at 09:32

Thanks for getting in touch. It was a pleasure to speak with you and understand a bit more about your situation. I hope you found our conversation reassuring.
I'm posting on Care Opinion to let you and others know that we're planning a change in response to your feedback. We're going to look at how we can provide better information for patients who have suffered loss of consciousness and their families. We're also going to look at how we can improve our communication about results and waiting times for investigations. I will let you know how we get on! Thanks for helping us improve our services.
Catherine

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Update posted by concerned granny (the patient) 5 years ago

Thanks to the Care Opinion Website I have now had clear information.
The anxiety expressed in the initial care opinion statement was heightened by the lack of joined up recording of events during my illness. Since my initial cardiac event I had attended as emergencies, an “out of hours” consultation with no access to an ECG machine, an admission to A&E with different symptoms and an emergency attendance at the clinical assessment unit. An additional diagnosis was made at the latter emergency. If all these events had been recorded together then focussed care might have been initiated. This, coupled with lack of information and misinformation in relation to the GP service, exacerbated my anxiety.
Maybe this opinion might give managers food for thought about the patient’s journey and how links between departments in hospital, GPs and “out of hours” in the community, need to focus on the patient’s experience.
My care since posting my initial statement has been exemplary. The cardiology consultant telephoned and I had an extensive conversation/consultation and she gave me the understanding and empathy I needed.
Subsequent care has been excellent, the staff carrying it out kinder than you could imagine.
Maybe this Concerned Granny has a few more miles in her yet!
Grateful thanks to all.

Catherine Labinjoh

Consultant Cardiologist & Clinical Lead for Cardiology, Cardiology,

NHS Forth Valley

Hospital doctor, specialising in Heart Disease

Submitted on 30/07/2019 at 16:42

Published on Care Opinion on 31/07/2019 at 08:42

Dear Concerned Granny
An update on the changes we had planned, following your Care Opinion feedback.
We took what you said very seriously. Although we recognised we had a gap in our service we weren't sure how to address it. Your feedback gave us the insights and the impetus we needed.
We went on to develop a special blackout service which we have been piloting over recent months. It seems to be going very well and we have undertaken staff training and developed a service to improve the diagnosis of blackouts where a problem with the heart is suspected, and to reduce the waiting times for tests and communication of results. We've increased our use of the humble telephone which seems to be making things easier and quicker!
We are committed to continuing this service and developing it further based on feedback from our patients and our colleagues. Thanks again for your support in helping us improve.
Best wishes
Catherine

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