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Patient stories

Steve

I have been a Molecular Cell Biologist for over 20 years. I worked in several institutes including Cancer Genetics at the Weatherall Institute and Oxford with Prof Sir Walter Bodmer. I then became a Paramedic in 2014.

 

I had been trying to obtain a referral for respiratory symptoms for a couple of years, without success. 

 

In March 2020, I knew referral was required without delay. I was only allowed a telephone consultation and my GP refused to physically see or refer me.

 

I had multiple repeat telephone consultations over many months. He repeatedly stated he would not be seeing or referring patients for at least 6 months.

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He repeatedly failed to listen or take history. I attended accident and emergency, in desperation, to be referred back to my GP. He still refused.

 

On 4th May 2020, I emailed respiratory medicine at the regional hospital, stating the issue affected mid to upper left chest. There was no direct return contact and no change in the GP position.

 

I contacted several private clinics, however due to the Covid lockdown and since my concern was respiratory, they failed to respond.

 

I had to threaten legal action in November 2020 in order to obtain a reluctant referral and a telling off from my GP. 

 

He said he had been in practice over 40 years, that I knew only a little and he knew it was asthma and anxiety. He had only ever seen me once for 5 minutes and did not know who I was.

 

The referral for CT was routine, not urgent, so took another month.

 

Diagnosis was stage 4 lung cancer. Further tests revealed an ALK mutation. Location was mid to upper left lung, as I had stated in my email 6 months earlier.

 

It took a further 2 months from initial diagnosis to treatment, Christmas fell in this time.

 

I have now been taking Alectinib for 20 months. I only have a solitary 1cm lung mass remaining, and I am due for surgical removal soon. However, a recent, and first, MRI revealed 2 small brain metastases. I am having radiosurgery on Monday, hoping for resolution and no recurrence.

 

I reported the GP to the NHS and GMC, who found no fault. I did not see my GP for 8 months, and when I did, his first question was "have you finished your cancer treatment now?".

 

I was not impressed, I put my hand up and said, "I am leaving". I walked out of his room banging to door behind me. He then sent me an official letter warning me about threatening and abusive behaviour. Well, he had learned a lot and changed his ways. I know he will continue to do the same to others and I certainly know it is not only me or my GP - this is widespread!

 

So that is my tale to date, Prof Blackhall at Christies is now my main and most reliable lead clinician. She is the only person I really trust.

 

Every time I tell this tale I hope something will change and it will help somebody else.

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