Anxious wait

Hi Ned, I can completely understand why you are worried about this. I think now is the time to start shouting, phone everyone you can, your GP should be pushing this for you, your lung nurse, phone the consultant secretary. You shouldn’t have to do this but now is the time you must. Quote the NICE guidelines which in your case, have not been followed. 

The NICE guidelines which the NHS have to follow are that every  new “suspected” cancer patient is put on a pathway where there are targets of 62 days wait between the date cancer is suspected and referral sent, and the start of treatment.  There is also no more than 31 days from when treatment is discussed and treatment starting. 

You can also complain to PALS which is the hospital complaints department. If you search PALS on the internet you can find the contact details for your hospital. But sorry to say having just used this facility myself for my daughter, I know the backlog is very long. There is a telephone option so that may be quicker. 

Good luck x 

Thank you so much for taking time to reply, and for your helpful advice. I am one of life’s non-complainers who just gets on with things, but I’ve never been in a potentially life threatening situation before. My husband is going to call the lung clinic today and is likely to be a little more challenging than me. He’s so frustrated and frightened. 

What a hugely difficult time for you. I can only send my good wishes and hope you can get some answers very quickly. You have every right to feel very anxious and distressed. I can’t offer any concrete additional advice but just my hope that doggedly nagging for action may have some positive results for you.

I know my experience of trying to get a GP appointment to sort out my meds cannot compare with your difficulties but for all of us the anxiety and waiting on others is not easy, especially when they seem supremely indifferent to our individual circumstances.

Hoping something good will happen for you very soon. Xxx

Thank you Daisychain.

I spoke to the lung nurse again today; she rang me after my husband left an emotional voicemail message. They are bumping me to the to of the list for a repeat biopsy as a matter of urgency, so we’re keeping everything crossed it’ll be next week. Out of interest, does anyone know at what point the NICE guideline of 62 days kicks in? My GP referred me for a chest X-ray in Feb 22, I had the X-ray on 31 March and CT 3 days later. My first biopsy was on 12 May. Thanks x

Hi Ned, did your GP initially send a referral to the hospital on a 2 week suspected cancer referral? This will be the start date for the 62 day NICE guidelines. X 

I’m very pleased that finally they’ve moved you to the top of the list and hope the biopsy will be very soon. Finally someone has listened. It must be a relief for both of you. I hope you receive a confirmation of date very soon. Xxx

I’m guessing not as there were 6 weeks between the GP appointment and the X-ray. I’d assumed it was hay fever and when the X-ray showed multiple nodules and queried metastases, I naively put it down to Covid. The CT was arranged very quickly after that.

So it starts when cancer is first suspected, so it sounds like it will start from when you got the X-ray results and Ct was arranged. 

Im glad your husband managed to get hold of the lung nurse, and hopefully the biopsy will be next week xx