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Diagnosis for follicular lymphoma

Posted By Tiegan

"Diagnosis for follicular lymphoma"

About: Churchill Hospital / Clinical haematology Royal Berkshire Hospital / Clinical haematology

(as the patient),

Went to get one of my breasts checked which was absolutely fine, however, they noticed my lymph nodes were up so extensive investigation was done which I was grateful for.

When we went for the results, I guessed by the look on the doctor’s face it was very bad news. I was completely in shock made even worse by them saying the Macmillan Nurse would be along presently to talk to me. My initial reaction to the way this was all delivered was that I was likely to die. I didn’t at that point know what to think and to be honest really didn’t take much in. I did wake up in the middle of the night and went through to our spare bedroom to cry, it was just so alien.

However, under the wing of a marvellous haematology consultant I had my fears put to rest and things came back into perspective - it is slow growing non-hodgins and I am ‘watch and wait’. At some appointments, however, I felt I wasn’t getting answers to questions or they were being misinterpreted (only when I was seeing one specific doctor and felt there might be a bit of a language barrier but this happened a few times).

I did get transferred to the lymphoma clinic at the Churchill Hospital where I have seen several fantastic consultants and feel that I am very lucky to be getting the care I do.  One particular consultant that we’ve been very fortunate to see several times explained more in the first consultation with them than anyone else previously.

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Responses

Response from Catriona Gilmour Hamilton, Haematology Quality Manager: patient experience and engagement, Haematology, Oxford University Hospitals NHS Trust 4 years ago
Catriona Gilmour Hamilton
Haematology Quality Manager: patient experience and engagement, Haematology,
Oxford University Hospitals NHS Trust

Submitted on 25/03/2020 at 17:09
Published on Care Opinion on 26/03/2020 at 09:13

picture of Catriona Gilmour Hamilton

Dear Tiegan,

Thank you so much for taking the time to share your experience of your care.

I am so sorry to hear that the experience of getting your diagnosis was so distressing, and that communication in the clinic was difficult at times. However, it is good to know that the team at the Churchill have kept you well informed, and that you feel well looked after now. I will be sure to share your comments with my colleagues in Oxford so that they know what a good job they do. I don't think they realise just how much they are appreciated, so your comments will remind them of that fact. We have contacts in the team at the Royal Berkshire, so I will let them know about your story and hope that you hear from someone from that hospital too.

I realise that at the moment we are living through very difficult and frightening times, and that we have had to make changes to how we deliver our care in Oxford. I hope that it doesn't have too much impact on the quality of care that we have provided for you so far, but we'd like to know about it if it does. I do hope that you will keep in touch and share your thoughts about your experience again.

In the meantime, take good care of yourself and thanks again for your time.

With warmest regards,

Catriona

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Response from Royal Berkshire Hospital 4 years ago
Royal Berkshire Hospital

Submitted on 14/04/2020 at 15:10
Published on nhs.uk on 16/04/2020 at 14:00

Dear Tiegan

Thank you so much for sharing your feedback with us. We are so sorry that the initial delivery of the diagnosis caused you such distress, but we are pleased to hear that your fears were put to rest with subsequent appointments. We will share your feedback with the teams.

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