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Care Opinion

Chronic Kidney Disease

Posted By Adamsdad

"Chronic Kidney Disease"

About: St John's Hospital / Nephrology

(as a service user),

I am at the stage now where my CKD affects me every day.

I have been unable to work for the best part of 2 years.  

I am effectively housebound due to what was eventually diagnosed as acidosis.  This causes me to become extremely breathless when I try to do anything.  

Since November, I have had blood tested 3 times.  All haven't been good.  And no action has been taken.  

I have been offered an out patient appointment at the end of April.  That is not good enough.  They are leaving me housebound - and I am sick of it.

The last blood test was now over a month ago - and no action has been taken.  My call to renal wasn't returned - as usual.  My GP has received no response.

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Responses

Update posted by Adamsdad (a service user)

I have been offered an appointment at the end of May. This is no use to me! Since my original post I have left the house twice - and both times, it was a nightmare. They have effectively made me housebound for another 6 weeks.

I have a family occasion in May - which I will now be unable to attend because renal do not pick up a phone. This feels like pure and utter nastiness.

Insisting that I go to clinic - when visiting to in-patients is restricted.

I can't take any more. I have nothing to live for. Nothing to get up for in the morning. In my experience renal are an absolute, utter disgrace.

Response from Louise Davies, Patient Experience Officer, Patient Experience Team, NHS Lothian 2 years ago
Louise Davies
Patient Experience Officer, Patient Experience Team,
NHS Lothian

Submitted on 07/04/2022 at 10:58
Published on Care Opinion at 10:58

picture of Louise Davies

Dear Adamsdad

I would like to sincerely apologise for the delay in responding to your feedback.

I am so sorry for what you are going through and that you have not received any treatment for this yet. I am also saddened to hear that you have not received any communication following your telephone calls. I appreciate that this must make an already distressing situation even worse. I would like to assure you that this feedback will be shared with the Clinical Management Team to review.

If you would like us to look into this further for you and ask the department to contact you, please contact the Patient Experience Team with your details and make reference to this Care Opinion post. The email address is feedback@nhslothian.scot.nhs.uk.

Kind regards

Louise

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Update posted by Adamsdad (a service user)

I have raised a complaint. And it wasn't even acknowledged.

I am not trying to "bring forward" an appointment -I am asking that my bloods be looked at and actioned.

My GP says they can't do anything unless there is a deterioration. Renal refuse to do anything because it hasn't come via my GP.

And, I am left housebound!

I am having yet more blood taken next week. It is like I now want a deterioration so that action may be taken. That is simply wrong! This will be my 4 blood test since November 2021 and thus far no action has been taken - even though I don't have a life that is really worth living.

Response from Jeannette Morrison, Head of Patient Experience, NHS Lothian 2 years ago
Jeannette Morrison
Head of Patient Experience,
NHS Lothian

Submitted on 12/04/2022 at 17:17
Published on Care Opinion at 17:19

Dear Adamsdad

Thank you for getting in touch with us and I am sorry to read what has been happening to you, I can appreciate how difficult this must be for you.

I would encourage you to keep in touch with your GP. It is good to read that you have an appointment next week to have your bloods checked and l am sure that your GP will take the appropriate action based on your results.

Unfortunately, since COVID-19 pandemic and the restrictions that we have all been living with, clinical teams are working hard to minimise any delays and to offer out-patient appointments as soon as available. I am pleased to read that you have an appointment for later next month and l am sorry that it is not possible to bring this appointment forward due to existing pressures within the renal team. I do hope that you attend this appointment.

I appreciate that my response may not be what you are hoping to read and l am sorry for any additional distress this may cause.

Yours sincerely

Jeannette

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