Care Opinion

I don't know what this means for me

Posted By caringcg47

"I don't know what this means for me"

About: Victoria Hospital / Neurology

(as the patient),

I recently had an MRI to try and determine why I had sensations and numbness in my hands, feet and legs. I received a letter just over 2 weeks later to say that the sensations seemed to be due to my Fibromyalgia. The letter went on to say that they had found a benign meningioma in the lining surrounding my brain. I was told I would receive a further MRI with contrast to determine the characteristics of the tumour. I am still waiting for the appointment.

Can you imagine how worried I am reading this in a letter and the questions I have but I am unable to ask them let alone get any answers. The letter then went onto to say that the results of the MRI with contrast would be sent to surgeons and radiologists in Edinburgh. This has raised my worries even further. This may all be formalities but finding this out from a letter is concerning and worrying. I don't know what this means for me, how long before I find out the results, what the treatment will be or the stage of the tumour.

I am so worried as you can imagine.

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Responses

Response from Siobhan Mcilroy, Head Patient Experience, Corporate Services, NHS Fife 2 months ago
Siobhan Mcilroy
Head Patient Experience, Corporate Services,
NHS Fife

Submitted on 08/10/2024 at 10:17
Published on Care Opinion at 10:17

picture of Siobhan Mcilroy

Dear caringcg47

Thank you for reaching out and sharing your experience with us. My name is Siobhan McIlroy and I am the Head of Patient Experience. I am sorry for the delay in you receiving a response.

I understand how distressing it can be to receive such information in a letter without the opportunity to discuss it directly. It’s completely normal to have many questions and concerns, especially regarding your health.

I want to assure you that your worries are heard and valid. I recommend reaching out to your healthcare provider for clarity on the next steps, including the timeline for your appointment and what the findings may mean for you. They can provide the support and information you need during this uncertain time or if you want to send me your detail I can support with that. You can email at fife.careopinionfife@nhs.scot and if you put "I don't know what this means for me" in the subject heading.

Please know that you are not alone, and we are here to help you through this process. If there’s anything else we can do to assist you, don’t hesitate to let us know. Take care of yourself, and I hope you receive the answers you need soon.

Best wishes, Siobhan.

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Update posted by caringcg47 (the patient)

I recently had my 2nd MRI. I did not have any follow up letter about my condition. I did not know anything about it, such as its location, any potential symptoms or a treatment plan going forward.

I recently received my letter with regards to my second MRI. Yet again I am not being given the chance to ask any questions about its location etc until I attend the clinic after the 12 months period.

I feel to be told in a letter with no follow up is not patient centred as I have not had the chance to ask any questions about what this means for me in the short and long term.

I was contacted by someone from NHS Fife asking if my email address could be shared with another professional so they could offer me some information. There was no follow up by this person.

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