"Not very impressed with service"

About: Northern General Hospital / Respiratory medicine

(as the patient),

I was diagnosed with COPD / emphysema in the last two years although I may have had this condition since the late 1990s. I am now taking oxygen as and when I need it but think this may be increased next time I go to the clinic.

Although one of the GPs at the surgery has told me to let the receptionist know that I have a serious condition so that I can see a doctor quickly the receptionists do not take this into account and I find it difficult to make an appointment when I am having breathing difficulties. Also the two lady doctors who I prefer to see are so much in demand that it is even more difficult – the other doctors don’t seem to want to know.

I’m not very impressed with the GP service, I have swollen feet and find it difficult to walk. I’ve been put on Furosemide to help reduce the swelling caused by water retention but they don’t seem to make any difference – the swelling if just the same. My legs sometimes feel so heavy I cannot get into or out of the bath or walk without difficulty. Unfortunately the tablets do make me want to go to the toilet more – so I have to struggle to get upstairs. These issues are not discussed when I see the doctor either at my surgery or at the hospital – what I mean is that they don’t seem to want to know about the impact the tablets have on my life day-to-day.

Don’t get me wrong, the staff at the hospital have been very helpful, the doctor did a spirometer test and then referred me to oxygen nurses, I’m expecting an appointment in the next three weeks. The difficulty is that I don’t know much about the conditions I have and want to know what to expect over time but there does not seem to be anyone I can ask. At the clinics there are so many other patients waiting to be seen I don’t feel I can take up too much of their time. It would be great if there was a specialist service for people with COPD, like McMillan nurses for cancer patients, someone who can come and see you at home and look at how the condition is affecting you, whether you are managing with the medication, let you know whether you can get help for example with carers to do your shopping or someone who is able to just listen to you.

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Responses

Response from Deborah Hopkinson, Patient Experience Co-ordinator, Sheffield Teaching Hospitals NHS Foundation Trust

I am very sorry to learn that you do not feel that you are being provided with support to help you with your condition within the community and also within the hospital setting.

We are unable to comment on GP matters however, I have escalated your comments about the suport within the Respiratory Medicine clinic and hope to come back to you shortly with further information about the role of our COPD nurses.

Kind regards.

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Response from Deborah Hopkinson, Patient Experience Co-ordinator, Sheffield Teaching Hospitals NHS Foundation Trust

Response from the Respiratory Service

The service has responded as follows:.

The Trust has a number of Respiratory Specialist Nurses working across the inpatient and community interface.

Your consultant or GP can access referral to the community COPD nurses should they feel this service would be of further benefit. If you feel that you need additional support please can you contact your GP or hospital specialist or mention this at your forthcoming appointment.

It is worth noting that COPD sufferers often need very low dose oxygen therapy. From your posting it would seem that it would be helpful to have a better understanding of your condition and the service would encourage you to raise this with your GP and hospital team.

Kind regards

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Update posted by Syphon966 (the patient)

I have, since my first posting and recent hospital appointments had some very good support from the Specialist team and also the COPD nurses regarding my oxygen supply which has now been adapted to my needs and I feel much better knowing that there are people out there who can help and advise me with my condition if the need arises. It was an emergency visit to A&E who found out from the tests I had, that I needed help with my condition and thus they referred me back to clinic where, as I pointed out above the support since then has been brilliant.

Response from Deborah Hopkinson, Patient Experience Co-ordinator, Sheffield Teaching Hospitals NHS Foundation Trust

So pleased to hear of your recent experience and that you are now receiving the support that you value so much.

Kind regards and thank you for posting your update for the Trust and others to read on Patient Opinion.

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