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"My son's diagnosis"

About: Borders General Hospital / General Medicine

(as a service user),

My son was diagnosed with addisons 3 weeks ago at the borders general hospital, the gp got his bloods done, sent to bgh, then I was called to take him to hospital for more blood tests (all ok so far!)

I went that day with my son, was sent to a certain unit, they didn't explain anything, just said he was to get bloods taken, then an injection, then wait 30 mins then retake his blood (my son doesn't do well with needles), so far so good....

Still no explanations, was told the doctor would be in contact when test results come back.

Went home.

Got a call the next morning just after 9 am, saying they hadn't labeled his blood tests properly, so therefore he would have to come into the hospital again to repeat the tests... so went in again,  asked the nurse what the tests were for, they said they didn't know and the specialist would phone me...

Specialist phoned the next day saying they needed to take more bloods and they would like to see him when we got up there.

The specialist told my son he had Addison's disease, and that he wouldn't have to change anything about his life he just needed to take one tablet in the morning and a half one at tea time and go home and get on with it.

The leaflets given to my son, said the exact opposite, he would have to avoid certain foods and drinks due to them reacting to medicine, he wasn't told about adrenal crisis, he was told he wouldn't need an emergency injection kit, yet I'm not so sure.

He was told he didn't need to updose in any circumstances, just stick to the doses instructed (15mg a day)

Yet I have been speaking to others with Addisons and they say he should carry extra with him in case he needs it (but he hasn't been told to look out for any symptoms so wouldn't know when he would need extra anyway...) 

Very poor communication- I did phone the specialist and was basically told not to phone and I would see them when I take my son to his appointment when he gets one, in around 6 or 8 weeks.

My son is leaving home in 2 months to go to university and I am needing him to know what to look for and how to treat himself before he goes, but we have had no advice at all. Just take these tablets and we will see you when we see you...

Responses

Response from Elaine Dickson, NHS Borders last month
Elaine Dickson
NHS Borders
Submitted on 14/06/2021 at 15:15
Published on Care Opinion on 15/06/2021 at 09:25


Dear Weeksy279

First of all I would like to thank you for taking the time to post on care opinion, sharing your experience and apologise that our communication has left you with many unanswered questions.

I would like to discuss the issues further and invite you to contact me on 01896826709

  • {{helpful}} {{helpful == 1 ? "person thinks" : "people think"}} this response is helpful
Response from Susan Cowe, Quality Improvement Facilitator - Person Centred Care, NHS Borders last month
Susan Cowe
Quality Improvement Facilitator - Person Centred Care,
NHS Borders
Submitted on 14/06/2021 at 15:43
Published on Care Opinion at 15:43


Dear Weeksy279 I am concerned to read about you and your son's experience. We would like to look into what has happened and to allow us to do that it would be helpful if I could speak with you to get some more information. If you are happy to speak with me my telephone number is 01896 826714, alternatively if you would prefer you can email - patient.experience@borders.scot.nhs.uk.

Kind regards

Susan

  • {{helpful}} {{helpful == 1 ? "person thinks" : "people think"}} this response is helpful
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