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IgG Kappa Free Light Chain High and still no urgent referral

J_A
Offline

Hi,

    I have peripheral neuropathy in both large toe, enlarged tongue and other problems for 5 years now.  Been going back to GP time and time again, said it was my back, slipped disc.  After finally getting a Neurologist Appointment after two year did MRI and not slipped disc.  Long wait saw face to face took bloods, long and short on the 15th of Feb had IgG raised  to 19.  Did Free Light Chains and 13.4 Kappa/Lambda Ratio, and looked up guidelines on referrals and should be 2 week urgent, still nothing.  Spoke to Neurologist and said she did not understand the results and has contacted a Immunologist., may hear back this week, should be a Hemotologist?  Been almost a month and no referral, GP said I should hear back in 2 to 3 weeks if not let them know.  Could be lots of things, Myloma, Waldenstrom Macroglobulinemia but most urgent is Amyloidosis.  IgM is wrong as well but did not say hi or low.  IgA is low as are Platlets.  Retired GP sort of friend says should have been in to Hemotologist by now for Bone Marrow, some Fat test to at least rule out Amyloidosis as delays can be fatal or life changing.  Help what can I do, do I chase the Consultant again, call the referral team at the hospital, so poor, kind of been years already. In Scotland.

Thanks

 

  • Hello J_A and thanks for your post

    I am very sorry to hear about the time it is taking for you to get answers whilst having some really debilitating symptoms. This of course must be frustrating for you and can appreciate you reaching out about what to do.

    Do speak with your GP if you can to find out if they can chase or find out the exact department they have referred you to. You could then also call the hospital to find out when you may be seen.

    As your GP friend has said there are a number of tests they need to do to find out more and in an ideal world the sooner the better.

    I'm sorry we can't be of more help but hope you know more very soon. Please of course do get back get back to us if you need any more information or support.  You may find it helpful to talk things through with one of the nurses on our helpline.  The number to call is Freephone 0808 800 4040 and the lines are open from 9am till 5pm Monday to Friday.

    Best wishes,

    Naomi

  • Offline in reply to CRUK Nurse Naomi

    Thanks Naomi,

                               I forgot to say the GP saying 2 to 3 weeks was yesterday.  I know the Hospital and have a consultant but she needs to refer me to a specialist.  I had a Cyst on my liver found 19 months ago and the GP told me it was fine.  I asked for it to be checked, so they said in 18 months, so I had a telephone appointment yesterday to ask for the re scan, she said that she would do it as non urgent 2 to 3 months, spleen as well.  She also had spoken to the Consultant and she knows I need to be referred, but they seem to be in no hurry.  I know it is meant to be a two week referral and it has been 4 weeks now, and with another 3 weeks, then a two week wait it will be over 2 months.  What can I do as they are not complying with NICE Guidlines or their own.  The only thing I think I can do in Scotland is call the hospital referral line, but what do I say, do they have to see me within two weeks for suspected Cancer?  If you can let me know my rights as I don't want to die of organ failure or heart failure just because my Consultant does not understand my results and the GP does not seem interested.  Thanks again 

  • in reply to J_A

    Hi J_A  and thanks for your further post

    As my colleague Naomi has said this sounds like a frustrating situation.

    In England an urgent referral used to mean that you were seen by a specialist within two weeks of the hospital receiving the referral from the GP, however, this was only the case for England and not for Scotland. Now England has recently introduced a faster diagnosis standard, which means that you do not wait more than 28 days from referral to find out if you have a cancer diagnosis. This is replacing the two-week wait timeframe. A GP will continue to refer a patient urgently if they suspect cancer. 

    In Scotland, it is different as they do not have a two-week wait referral pathway or faster diagnosis standard. 

    The cancer waiting targets in Scotland for people who are referred urgently with a suspicion of cancer are; that it is no more than 2 months (62 days) wait between the date the hospital receives an urgent suspected cancer referral and the start of treatment. There is no more than 31 days wait between the meeting at which you and your doctor agree on the treatment plan and the start of treatment.

    If you are concerned that your symptoms or recent blood results are not being dealt with urgently enough and promptly, it may be worth contacting your local Patient Advice and Support Service (PASS). They provide independent information and support to people in Scotland who are having dealings with the NHS and are having concerns about accessing treatment and the care they need. They may also be able to help explain what your rights might be.

    I do hope you are seen by the right specialist and have any concerns you have addressed soon. Please get back to us if you need any more information or support. 

    Take care,

    All the best

    Jemma

  • Offline in reply to CRUK Nurse Jemma

    Thanks Jemma, the PASS were great help.  Managed to get through to the consultant again after I quoted 31 days for a Caner Diagnosis, seems it does need to go to a Hematologist she is e-mailing them today, if we had not of called I don't know how long the wait would be?  She also said there are big delays for Bone Marrow tests, well maybe she should have booked it a month ago? Thanks again lets hope we get the diagnosis in time or better still the all clear and then monitoring.  Thanks again.

  • Offline in reply to CRUK Nurse Jemma

    Jemma just to update I have been put on an urgent priority 1 top of the list, 2 to 3 months, yes months.  They just don't have enough staff and can't refer us to another hospital in Scotland as it looks like they are all the same, shocking.  It took lots of chasing to get it referred wonder if they have been told not to referrer too early as it makes it look even worse, so 3 to 4 months from blood results for an urgent referral that is flagged at two weeks in England.  Maybe this is something Cancer Research could concentrate on? little point in the UK doing research if we can't do the basics well? costs more to NHS and worse outcome for patients if they make it at all.  Thanks for all the advice, PAS have been very good so far.

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