Care Opinion

Care of my nephrostomy site

Posted By Retrmn57

"Care of my nephrostomy site"

About: General practices in Tayside General Surgery / Urology Surgery (Ward 27) Ninewells Hospital / Urology St Andrews Community Hospital / Urology

(as the patient),

I have a nephrostomy to take the pressure off of my right kidney as part of my ongoing treatment plan.  My left kidney has shrunk.

I was quite apprehensive at first but I am in the swing of it.  It has been joint learning between myself and the practice nurse as the hospital consultant has asked for the nephrostomy to be ‘flushed’ twice a week and this was new to them.  When the practice nurse is on leave other nurses have to step in and they are quite apprehensive at first because it’s not a regular thing for them, but they are encouraged because I am able to reassure them due to the treatment plan the practice nurse has put in place for me.

I am finding myself to be the ‘key’ person in my care conveying information and questions between different doctors and nurses both in and out of hospital.

I’m quite surprised and shocked that care and treatment is not ‘joined-up’ between hospital and in the community but encouraged that I am playing a key role which all practitioners have expressed their appreciation for.

Telling my story and sharing my experience is another part of my health journey.

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Responses

Response from Victoria Sullivan, Project Manager, Elective Medicine, NHS Tayside 4 months ago
Victoria Sullivan
Project Manager, Elective Medicine,
NHS Tayside

Project manage and facilitate change programmes, transformation and service redesign across Elective Medicine services within NHS Tayside

Submitted on 19/06/2024 at 10:00
Published on Care Opinion at 10:00

picture of Victoria Sullivan

Dear Retrmn57

Thank you for taking the time to share your feedback about your treatment plan and how this straddles both primary and secondary care. It's encouraging to hear that the Practice Nurse at your GP practice is working closely with you to ensure activities take place when they need to and the joint learning you mention must be hugely beneficial to you and to the nursing staff who step in when required.

Feedback is very valuable to all areas of the NHS, and I'm sure the staff in your practice will be pleased to hear that your experience there has been positive. Unfortunately, GP practices are not part of Care Opinion at this time, as each practice is an independent business. So that they can see your feedback, we would recommend that you feedback your experience directly to the practice to allow this to be passed on to the staff. The Practice Manager can give you with details of how to provide this feedback to them, as per their Complaints and Feedback Policy.

Thank you again for telling your story and for sharing your experience as part of your health journey. Staff across both primary and secondary care will be pleased to hear your joined-up treatment is going well, and other patients who face similar challenges will be encouraged by reading your story.

With best wishes

Victoria Sullivan

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Response from Siobhan Mcilroy, Head Patient Experience, Corporate Services, NHS Fife 3 months ago
Siobhan Mcilroy
Head Patient Experience, Corporate Services,
NHS Fife

Submitted on 29/07/2024 at 12:17
Published on Care Opinion at 12:17

picture of Siobhan Mcilroy

Posted by Retrmn57 (as the patient), last month

My name is Siobhan McIlroy and I am the Head of Patient Experience. NHS Fife welcomes all feedback, so thank you for taking the time to post on Care Opinion. I am sorry for the delay in you receiving a response.

It sounds as though you have had a difficult time but it is wonderful to read that you have been receiving support. I am sorry there have been communication issues between Primary and Secondary care but great that you are aware of all aspects of your care and feel empowered to share this information.

Thank you again for sharing your story, best wishes and take care, Siobhan

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