"Waiting with no end in sight"

About: General practices in Ayrshire & Arran Glasgow Royal Infirmary / Respiratory Medicine Royal Infirmary of Edinburgh at Little France / Respiratory Medicine

(as the patient),

I have asthma & Bronchiectasis and had been receiving excellent service in NHS Lothian for these conditions. I was seen 3 monthly as my condition was unstable but this was moved to 6 monthly, just as I was leaving the area, as it was becoming controlled with use of a nebuliser and permanent antibiotics. 

My care was supposed to transfer over to NHS Greater Glasgow & Clyde however I have heard no word and have not been to a review in 16 months. I tried to call the Glasgow Lung Clinic who stated they did not have access to the computer system where the referral would sit and they asked me to check with the Edinburgh Lung Clinic that it was sent which I did and it was. With the Glasgow Lung Clinic not even able to tell me if they had a referral or if I was on a waiting list I went to my GP surgery in Saltcoats. The first doctor I went to did not want to get involved and just suggested I keep calling the clinic. The second GP I went to said they would send a letter. 

I have still not heard any word. I am in need of a review for both these conditions which is causing me great worry and stress. I don't even know if I am on a waiting list to be seen and I have no idea where to turn next. An added stress is the Coronavirus which will likely set all waiting times back in addition to my fears of my condition not being well controlled and catching this. 

My Bronchiectasis not being controlled can lead to serious long term repercussions on my health and quality of life however I feel ignored and forgotten about. Even if I knew I was on a waiting list I would feel like I had something in sight but I have had no communication. 


Responses

Response from Simon Dunn, Associate Nurse Director, Royal Infirmary Edinburgh, NHS Lothian 2 weeks ago
Simon Dunn
Associate Nurse Director, Royal Infirmary Edinburgh,
NHS Lothian

lead nurse of the site

Submitted on 24/03/2020 at 09:30
Published on Care Opinion at 09:30


picture of Simon Dunn

Dear T360,

I am sorry to hear about the problems you are experiencing. I appreciate that this is a worrying time without the added concern of when you will be seen for your asthma and bronchiectasis review.

We would like to look into this further to ensure that we've done everything we can at this end to get your care transferred. However, in order to do this we need some more information.

I would ask that you call the Patient Experience Team on 0131 536 3370 so that they can take the required details to have this looked into and I hope that this will be resolved quickly for you.

Best wishes,

Simon

  • T360 thinks this response is helpful
    {{helpful-1}} other {{helpful-1 == 1 ? "person thinks" : "people think"}} so too
Response from John Stuart, Chief Nurse, North Sector, NHS Greater Glasgow and Clyde 2 weeks ago
John Stuart
Chief Nurse, North Sector,
NHS Greater Glasgow and Clyde
Submitted on 24/03/2020 at 14:20
Published on Care Opinion at 14:20


Dear T360,

I was sorry to read of the problems you have experienced in transferring your respiratory care from NHS Lothian to the Glasgow Lung Clinic. I will raise your position with the respiratory management team and ask them to respond to you.


Your sincerely,

John Stuart

Chief Nurse

Glasgow Royal Infirmary.

  • T360 thinks this response is helpful
    {{helpful-1}} other {{helpful-1 == 1 ? "person thinks" : "people think"}} so too
Response from Jeannette Morrison, Head of Patient Experience, NHS Lothian 2 weeks ago
Jeannette Morrison
Head of Patient Experience,
NHS Lothian
Submitted on 24/03/2020 at 18:17
Published on Care Opinion at 18:17


Dear T360

Thank you for getting in touch and as Simon has suggested please feel free to get in touch with the Patient Experience Team. I wanted to let you know that given these difficult times the telephone line is staffed between 10 am - 2pm however it may be that the team from Glasgow will come back with further guidance.

With best wishes

Jeannette

  • T360 thinks this response is helpful
    {{helpful-1}} other {{helpful-1 == 1 ? "person thinks" : "people think"}} so too

Update posted by T360 (the patient)

Hi, I’d just like to say thank you for the helpful responses so far. I will try calling the number you have suggested.