I have been on an ‘urgent’ list for haematology consultation since February 2023. I got a call from GP on June 20th to say CLL is confirmed - but I was still on the urgent referral list - which is taking 39 weeks! with this news I arranged a private appointment in London - my private provider would not cover this as it was ‘outside of Northern Ireland’! This consultant confirmed CLL - and that I would be on watch and wait. I have had nothing put in place with regards ‘watch and wait’ no plan no personnel - no contact. So I called local haematology - who advise I am almost at the top of the list - but due to a new system being installed they cannot tell me when clinics will be held! So My GP has agreed to do a FBC and I have agreed to pay for the results to be interpreted. I DO NOT KNOW HOW TO GET on NHS to be monitored!
Unsure: I have been on an ‘urgent’ list for... - CLL Support
Unsure
It shouldn’t be your responsibility to pursue a place on the haematology waiting list RKGM. It sounds like you’re already on the Consultant’s list in secondary care but demand and stretched resources are the issue. Unfortunately, as I know from experience in another specialism, the NHS don’t take any notice of private consultation outcomes.
Your own GP should be able to interpret your FBC. No idea why you’d have to pay to have it interpreted. That’s outrageous! Some early stage CLL’ers are actually monitored by their GP’s.
If you don’t get an appointment soon, here are some contact numbers to complain about the NHS in Northern Ireland.
How do I complain to NHS Northern Ireland?
Contacts
telephone: 028 9504 8000.
email: complaints@belfasttrust.hscni.net.
website: Compliments and complaints.
Good luck!
Newdawn
Thank you very much for your response- much appreciated
They might be using a system called Epic with MyChart. My hospital started this system on 5th October and it has been chaos. I have been waiting several weeks for a face to face appointment, but nothing has appeared yet. As this system has been running in other hospitals for many months I would have thought they would have overcome teething problems, but sadly not.
Hope you get an appointment soon but be aware a GP might not be totally able to interpret your results. One of mine panicked when my white count went up and sent me back to hospital where I was told it was a very minor increase and nothing to worry about.
Colette
Watch and wait is for CLL patients that don't have treatable symptoms. Your referral may have been urgent but now you may not be considered urgent. When you are urgent all waiting lists disappear and you are on an express train to treatment.
But even so I would have expected them to have seen you to explain W&W and tell you how likely you are to need treatment. 15-20% of CLL patients never need treatment.
W&W should be managed by your GP and monitored by regular blood tests. These are the ALERT SYMPTOMS that are being watched for and require referral back to specialist team.
• New lump
• Persistent new fatigue/anorexia/weight loss - a reduction of 10% of body weight in 6 months
• Progressive falling blood counts. E.g. Hb < 110 g/L, Platelets < 100X10^9/L
• Progressively increasing lymphocyte count
• Fever of unknown cause
• Recurrence of presenting symptoms
• New onset of persistent drenching night-sweats
I am so sorry about your situation.
Aged 70 I had a Well Woman test at my surgery. My GP picked up what she described as a minor abnormality with my blood, rang Haematology for their advice which was to monitor me three monthly. After a year she rang the hospital again and was told it was time they saw me. I went for an appointment and was diagnosed in September 2020, was regularly monitored and am now on treatment (since June this year)
I don't understand why you are having such problems. Mine was seamless. I think you should complain as Newdawn says.
RKGM17, getting answers to care has become so complicated. I hope you can receive a response soon. It's not as bad here in the United States, but it's not getting better. You call to make an appointment and can get one 6 weeks later! Urgent Care facilities are "popping" up all over. So if you desire quicker attention, that's where you go and usually are seen by a nurse practitioner, not the doctor. This system is good, but I prefer seeing MY doctor that I've built a doctor/patient relationship with. Times are changing.🙂 Sandra
Hello RKGM17. I'm sure you're feeling very distressed and frustrated by the long wait to see Haematologist I see you're from N Ireland. I live in Bangor North Down HMy I was diagnosed in Sept 2020 in A&E setting.I had been admitted for high blood pressure and it was incidentally discovered that I had marked lymphocytosis.CLL suspected.Referred to haem outpatients at The Ulster Hospital where diagnosis was confirmed.
I am on the watch n wait protocol and presently being monitored by six monthly visits with Consultant..
I was prob seen very quickly owing to presenting at A&E and seen within the 14 day window.I hope you'll be followed up very soon .You'll most likely be placed on watch n wait (watch n worry) protocol as there is often no urgency in treating our condition.However close monitoring is extremely important.
Which part of N Ireland are you from?
My advice would be to keep pestering.Im sure your delay not helped by post covid backlog, present financial restraints and staffing issues compounded by the fact that we have no functioning executive to take leadership of our public services .Good luck
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