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NHS support & Timelines

Rushie15
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Recently my mother was diagnosed with Lung cancer, it all started 16 weeks ago where she collapsed at home, around end of may she was told it was lung cancer, from then we have had a pet scan & biopsy, however 3 weeks ago we were told the biopsy was inconclusive and need another however it seems impossible to get a date for it? 
 

I thought there was a timeline for all of this, it seems to be moving so slowly, I don't understand, also we are told people are on holidays and can't get answers. This seems obscene to me. How can I move this forward?
 

Any advice would be appreciated. 

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    Hello Rushue15, you're quite right there is a time line, my husband had lung cancer and  from the results of the biopsy, which determines what type of cancer they need to treat the Treatment is on an NHS time line.  Was Mum allocated a McMillan nurse when she was diagnosed?  If so then contact them, or telephone PALs whose number you can get from her hospital Trust they will help you and explain things to you.  I'm afraid sometimes we have to fight for our loved ones very hard, it's not right or fair but you have every right to query why things are so slow, even an explanation helps you to better understand the way it works.  My husband went into hospital on the 29th December last year and although seriously ill by then, he was not seen by a doctor for ten days, because of holidays, it's not good enough, fight her corner.  Good luck, Carol x 

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    Carol has given good advice. Can I add in that a lot of things have gone pear-shaped in respiratory world especially. Covid has an awful lot to answer for. You might want to call specialist lung helpline – think BritishLungFoundation may have teamed up with Asthma people so now Asthma and Lung UK?? (I just checked and special message saying helpline not available until tomorrow morning). There is also the Roy Castle Lung Foundation, which offers specialist info. I have been given so much specialist nurse advice and up-to-date info on protocols, which unfortunately seem to keep changing. It will help you pull together all the points you need to make and also flag up who best to approach in first instance. PALs are great for telling you how to complain, so Carol is correct to point you there. BritishLungFoundation (or whatever it is now) should be able to help with regard to what procedures are/aren't being done currently. Some stopped completely during the pandemic. It really was a horrible time for anyone with lung issues. Still is with another Covid wave taking over, I guess. I'd be really interested to know how you get on if you do call a specialist lung helpline and what they have to say about this. It will help others going through what you are going through now. I wish you luck and hope things speed up for you soon. xx

  • Hello and thanks for your post,

    I am sorry to hear about your mum's situation and I can understand that waiting for results can be extremely stressful.

    There are targets for diagnosing patient and waiting times after diagnosis which hospitals try their best to adhere to. You can see the information on our website here

    It is not uncommon to have a repeat biopsy and depending on the result it will reflect what treatment she is offered. 

    I can understand your frustration particularly as you haven't even got a date to aim for and you feel like you are being kept in the dark. I am not sure whether you have contacted the consultants secretary, or if you have heard about PALS (Patient Advice and Liaison Service) which you can read about here

    They may be able to at least look in to it for you.

    If you feel that you would like to make a complaint you could have a look at Health Watch which has some advice about how you can do this here

    I am not sure whether your mother has been able to discuss this with her GP and whether they are able to help move it forward. 

    If you did want to consider getting a biopsy done privately this may speed things up but unfortunately at a cost. Your mother would need to get a referral from her specialist or GP. If you put in her postcode and the procedure that needs to be done in to Private Health UK it can give you an indication of cost. Have a look here

    I can understand that this situation is not ideal but unfortunately we are regularly hearing from patients about the shortage of staff in the NHS and the struggle to make targets happen.

    I do hope that you know more soon.

    If you feel that it would be helpful to discuss any of this with the helpline nurses then do give us a ring. We are here Monday to Friday, 9am to 5pm, Freephone 0808 800 4040

    Best Wishes,

    Catherine

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