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hypertrophic cardiomyopathy

Posted By 2 box

"hypertrophic cardiomyopathy"

About: Queen Elizabeth University Hospital Glasgow / Cardiology (Heart Conditions) Wards 6c & 6d University Hospital Hairmyres / Cardiac Catherterisation University Hospital Hairmyres / Cardiology

(as the patient),

back in 2009 I was diagnosed with a  genetic heart condition seen all the specialist at my local hospital. In 2012 I had a implantable cardioverter_defibrillator implanted 2018 I had a trigger on my icd went in to hospital to get a check up and was keep in but as it was a genetic condition my 3 kids had to get checked unfortunately one of my kids has the genetic side of the condition so he is going to go thru everything I have had to but at least I know he is in good care if he needs the icd fitted as well and going to be look after my youngest child will get tested in 2 years time my middle kid has the all clear. I had a appointment at the cardio nurse 29 November at my local hospital and she is a miles frost nurse she told me the funding is going to stop next year so I think it would be a shame to the cut the funding as it might not be able to help other families in my situation 

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Responses

Response from Rachel Pyle, Patient Experience Project Manager, Patient Experience Team, NHSGGC 4 years ago
Rachel Pyle
Patient Experience Project Manager, Patient Experience Team,
NHSGGC

Submitted on 11/12/2019 at 15:27
Published on Care Opinion at 15:51

picture of Rachel Pyle

Hello 2 box,

Thank you for taking the time to share your story with us, it’s very much appreciated.

I’m sorry to hear about the funding for the Miles Frost Nurse but I’m pleased that you’ve had a good experience with our services and that you feel reassured that your children will be well looked after too.

I will make sure to pass on your kind words to Cardiology at the Queen Elizabeth University Hospital.

I hope all goes well with your youngest child’s tests. All the very best to you and your family.


Best wishes,
Rachel

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Update posted by 2 box (the patient)

Thank you for your reply and your thoughtful reply to my children I appreciate everything that the NHS has provided me with in the past and hope it carries on well into the future thanks again

Response from Angela Dixon, Service Manager for Medical Directorate, University Hospital Hairmyres, NHS Lanarkshire 4 years ago
Angela Dixon
Service Manager for Medical Directorate, University Hospital Hairmyres,
NHS Lanarkshire

Submitted on 11/12/2019 at 17:53
Published on Care Opinion at 17:53

picture of Angela Dixon

Hi 2 box

Thank you for taking the time to feedback to us on Care Opinion.

I am pleased to hear you have had a good experience with the Miles Frost Nurse at your local Hospital - the good news is that we are in the process of completing a business case to see if we can extend the funding for this post so that families like yours will continue to benefit from this service locally.

I hope you continue to benefit from the great services provided by the Cardiac team and that all goes well with the tests for your kids and any treatment any of you require in the future goes as well.

Many Thanks

Angela

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