"Lymphoma diagnosis confirmed"

About: University Hospital Llandough / Clinical Haematology

(as the patient),

My low grade nhl was found after collapsing with pneumonia and sepsis, confirmed as follicular and b node grade 2? ? As well, I was then told that I would have 3 monthly comparison dye scans as there were a few more suspicious enlarged nodes. I was then referred to a haematologist at llandough hospital.

Since then, I have had a bone marrow test which came back okay, no further scans though I have pointed this out to consultant at each appointment, no information given about this illness, I had to find out about what little bit I know from lymphoma association and a macmillan handbook found in hospital foyer.

I have met with my haematologist consultant 5 times since being referred to him and he will not listen to my symptoms and has even suggested my sweats are the menopause, although I have told him each time we meet that I have had a total hysterectomy many many years ago at the young age of 28 and went through the menopause at 29! ! ! !

As I have had to fight with my now ex gp surgery for nearly 3 yrs for a diagnosis as I knew I was ill, the way I am now being ignored yet again by another medical professional is not only disgusting it is very disheartening.

Doctors Need to start listening more to patients! ! ! We know our bodies better than you no matter how qualified you are! ! !

Also we should go back to having cancer care under 1 roof such as Velindre hospital, because at least they listen to you there! ! ! !

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Response from Jane Rowlands-Mellor, Lead Nurse Patient Experience, Patient Experience, Cardiff and Vale University Health Board

Good afteroon,

I am sorry there had been a delay in posting this response.

Firstly can we apologise for your poor patient experience. As a department our aim is to ensure patients have a positive experience whilst in our care and regret that this wasn’t the situation for you.

Please be assured that we take any concern expressed by patients or relatives seriously. As a Directorate we have reviewed this concern and will put measures in place to ensure continuity in care which will allow patients to be more informed and educated around their disease and treatment.

We have also reviewed the case load of the Lymphoma Clinical Nurse Specialist (CNS) and she will now base herself on the Llandough site weekly whilst the Haematology clinics are running. This will allow face to face communication with patients and the CNS. The CNS will be a point of contact for patients allowing any anxieties or questions to be listened to and responded to by her.

Due to the increase in cancer and the availability of treatment, it is not possible for all the care to be under one roof, although the expansion of cancer services is high on the Welsh Governments priority list.

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