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Care Opinion

Cardiac Sarcoidosis

Posted By trekaley

"Cardiac Sarcoidosis"

About: East Surrey Hospital / Accident and emergency East Surrey Hospital / General medicine South East Coast Ambulance Service NHS Foundation Trust / Emergency ambulance

(as the patient),

Was admitted to A & E Saturday before Xmas. Paramedics and A & E dept good.

Transferred to Acute Medical Unit as sodium levels very low and put on drip.

However, I have Cardiac & Pulmonary Sarcoidosis, which is rare and my case complex.

I am under the care or Royal Brompton Hospital - being a specialised heart & lung hospital.

A lot of my medication was stopped as my BP low - despite me telling them that the readings were usual for me.

I was given too much fluids as I then became breathless and sats dropped to below 80.

I felt I should have been transferred to a Cardiology ward, and didn't even see a cardiologist during the three days I was there.

Despite me asking, ESH refused to contact Brompton Hospital.

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Responses

Response from Maxine May, Communications Officer, Surrey and Sussex Healthcare NHS Trust 10 years ago
Maxine May
Communications Officer,
Surrey and Sussex Healthcare NHS Trust

Submitted on 13/01/2014 at 15:46
Published on Care Opinion at 15:56

Dear trekaley

I am sorry to hear about your experience whilst under the care of our Acute Medical Unit.

I would like to find out more about waht happened, so if you could email your details to me at Maxine.May@sash.nhs.uk I will ask someone on this team to look into this and get back to you as soon as possible.

Kind regards

Maxine May

Communications Officer

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Response from Ben Mearns, Chief of Medicine, Surrey and Sussex Healthcare NHS Trust 10 years ago
Ben Mearns
Chief of Medicine,
Surrey and Sussex Healthcare NHS Trust

Doctor

Submitted on 13/01/2014 at 16:05
Published on Care Opinion at 16:12

picture of Ben Mearns

Dear trekaley

I'm very sorry to hear that you didn't have a good experience when you were here before Christmas. I hope that you are well now and I would be very grateful if you could email me on ben.mearns@sash.nhs.uk with more details so that I can investigate what happened.

I can imagine your frustration if you were not listened to about your condition and I am surprised that the team did not follow your requests. I would expect them to do so or at the very least explain to you why they did not.

Sometimes it may be true that even with a cardiology condition a ward other than a cardiology ward may be the best dependent on your medical case, and if you are happy for me to look into your visit I will let you know what I think happened.

I do hope that you are well and please let me know if you need anything in the meantime.

Best wishes

Dr Ben Mearns

Clinical Lead for Acute & Elderly Medicine

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Response from Louise Hutchinson, Head of Patient Experience, South East Coast Ambulance Service NHS Foundation Trust 10 years ago
Louise Hutchinson
Head of Patient Experience,
South East Coast Ambulance Service NHS Foundation Trust

Submitted on 14/01/2014 at 15:13
Published on Care Opinion at 17:15

picture of Louise Hutchinson

Dear Trekaley

I am sorry you had cause to call South East Coast Ambulance Service on 21 December. I am pleased that you felt that the service provided was good, however, and I do hope you are now feeling much better.

With best wishes for your ongoing recovery, Louise Hutchinson

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Response from Ben Mearns, Chief of Medicine, Surrey and Sussex Healthcare NHS Trust 10 years ago
We are preparing to make a change
Ben Mearns
Chief of Medicine,
Surrey and Sussex Healthcare NHS Trust

Doctor

Submitted on 19/01/2014 at 16:07
Published on Care Opinion on 21/01/2014 at 09:32

picture of Ben Mearns

Dear trekaley

Thank you for making contact via email.

I will be in touch shortly via email with a detailed review and hope to make some positive changes that will improve our service.

Kindest regards

Dr Ben Mearns

Clinical Lead for Acute & Elderly Medicine

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Response from Ben Mearns, Chief of Medicine, Surrey and Sussex Healthcare NHS Trust 10 years ago
We have made a change
Ben Mearns
Chief of Medicine,
Surrey and Sussex Healthcare NHS Trust

Doctor

Submitted on 27/01/2014 at 15:54
Published on Care Opinion at 17:32

picture of Ben Mearns

Dear trekaley

I have now reviewed your case and it is clear that the doctors and nurses have not registered anywhere in the notes your request that they contact your regular doctor at the Brompton.

I am very sorry that they clearly did not listen as well as they should and that you were left feeling anxious as a result. They should have followed your instructions. Although contact may not have been possible over the weekend, they could have made contact during the weekdays.

They also do not appear to have communicated their decision to stop your blood pressure medication as they were holding it off in order to allow your salt level to improve rather than because of your blood pressure which they have noted is normal for you.

All in all not their finest hour and I apologize.

I have written guidance for the unit to make sure doctors and nurses do contact specialty teams if necessary and/or requested by the patient which will hopefully prevent this happening again.

Thank you for helping us to improve the service.

Kindest regards

Dr Ben Mearns

Clinical Lead for Acute & Elderly Medicine

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