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SIn the middle of an office it was not like I ever imagined I would be told I had a chronic health conditionsBut that’s where I was when I received the following message – original typo included:
“Dear Miss Thomas, Your recent ultrasound examination revealed that you have endometriosis (a condition where tissue similar to the uterus attaches to your uterus), which causes certain symptoms. Symptoms may include heavy painful periods, lower abdominal pain, fatigue. Sometimes it can also affect your bowel habits.
“For this reason I need to refer you to the gynecology team. The hospital will be in touch with you to inform you about the appointment.”
This is how I was told I have endometriosisThere was no further information, no option to call the GP, just a text and a referral letter.
As a national health journalist, I have covered the stories of women who went through Years of pain and gaslighting To get a diagnosis of endometriosis. I’m incredibly fortunate that I haven’t faced the same struggles.
Despite having the knowledge I gained from my work, being given a diagnosis like this, having no idea how bad the situation was, what it meant for me and what the next steps might be – and was it even definitive? – That was just cruel.
Whatever information I could find about this condition through research, or from friends and family who had it, did nothing to ease my anxiety, given that it was generalized rather than personal.
One in 10 women in the UK has endometriosis, yet my GP never discussed with me the possibility that my symptoms could be explained by that diagnosis – hence the shock.
In fairness, I’ve been taking hormonal contraceptives for over a decade and have never had the debilitating menstrual pain or bleeding associated with this condition. Other symptoms are those that have developed only in the last two years.
So here I am with an unexpected diagnosis and progressive symptoms — and no idea what it means for my health.
After the lesson, I went straight to my NHS app to find the results of my scan in the hope of more information, but there I found notes written in medical jargon that was probably the most similar Klingon I understood.
Is this the patient experience that the government hoped for when it told the public that we would now be able to Access our records through our phone,
Digitization, improving access and faster diagnosis are all important and will undoubtedly transform care in many ways. However, it is important to do this even when thinking about patient experience,
Besides the cruelty of receiving the news via poorly worded text message, I was shocked by the fact that medical information would be shared in such an unsafe manner.
Other people could have seen that message on my phone – and yes, I understand that, by writing this article, I am sharing my medical information with the world, but that’s a decision I want to make, rather than have it forced upon me.
National Waiting List for Gynecology Services currently stand at 582,016, with more than 18,000 people waiting for more than a year. The average wait time for gynecology is the worst for any speciality.
giving to patients Ability to choose hospital Access to the NHS app has been a prominent feature of the government’s recent policies.
I have been given a choice of three hospitals to contact about my diagnosis. As a health journalist, I have knowledge and resources that others may not have, but still, I didn’t know where to turn.
A quick browse of Government’s new league table, Its “segments, scores, and ranks” told me nothing about the quality of care for women with endometriosis, or gynecological services within those three hospitals. As think tanks have already suggested, these league tables are completely useless when it comes to patient choice.
While the government has promised to introduce the move to “analogue to digital” as one of its three transformations for the NHS, its use for patients will be limited unless they are given information in a way that can truly empower them.
As I re-read my doctor’s original message on my phone screen, I wondered: Was this what Wes Streeting meant when he Imagine your great NHS reform,
Endometriosis UK runs a free, confidential helpline for anyone who needs support or information about diagnosis and treatment options – 0808 808 2227