Mail Online story - End the Delays to diagnosis

Did you see this story in the news? Does it resonate with you?

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There is also a story, also on Mail Online, about a young teacher who died days after being diagnosed with ALL because he thought his symptoms were due to stress

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These stories are so tragic and really get the message across that early diagnosis is so vital. The problem is unless you or your GP knows the symptoms of blood cancer they might not think of a blood cancer diagnosis early enough.

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Absolutely Erica, which is why we’re asking people to sign our petition here https://bloodwise.eaction.org.uk/endthedelays/ calling for more training and support for GP’s to help them spot signs of blood cancer sooner.

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These stories are so very sad and of course it is so true that early diagnosis is imperative, not only in blood disorders but every ailment. Quite frankly though, who would want to be a GP in this day and age with the ever increasing pressure to get it right from the get go? Is there an argument that GPs are under too much pressure and expected to know it all? With an aging and an expanding population with new and mutating disease and illness discovered constantly, are we expecting too much of the health service?
My GP had no idea that my list of complaints would lead to an Acute Lymphoblastic Leukaemia diagnosis and understandably so being that I didn’t really fit into the tick box. Her recommendation was to get blood tests done and once they were, the service I received was extremely quick… thankfully too as otherwise I wouldn’t be here now. That said, it took 6 weeks to get the blood tests organised! The strain on the health service and the impact that has on those who actually need it needs resolving but should some of that responsibility be put on the general public? Should we be incouraged and educated to self-help and understand our own health better? I’ve seen so much ‘time waisting’ during my journey and I really do feel for GPs and the NHS staff and the bad press they get when they are trying to help.

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Hi Sarah, welcome to our community forum I find it so supportive to know that I am not the only one and that our forum is a safe space to share my deep emotions, feelings and thoughts. I often find that my nearest and dearest cannot understand something they have not experienced. How are you now and what are your thoughts and feelings about your condition now?

I agree with your comments re stress on the NHS and more patient responsibility. I feel guilty as I went from someone who rarely went to the doctor to someone who has to have regular GP (and audiology and gynaecology) appts because of after effects of treatment.
I like the new symptom tracker as a patient can check for symptoms and wriite down any information they can take to the GP. Sometimes we might see the GP with one symptom, but not mention others, so not give the whole picture. Instead the GP is left putting together bits of a jigsaw. I hope your treatment is going well

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@Pisces56 and @SarahDealhoy you have both brought up some important issues and I have found that some GP surgeries say that a standard 10 minute appointment is to discuss one symptom so I have found I sometimes need to book a double appointment (for 2 symptoms?!!) and write down very clearly all my symptoms and how I might feel that they might all come together to make one diagnosis. I really feel so, so sorry for all NHS staff, they are under so much pressure and time constraints, in my experience everyone has been lovely, professional and so caring.

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Hi Sarah, welcome to our forum! Thank you for sharing your thoughts, it certainly is a challenge working in healthcare and GP’s, nurses & haematologists (as well as phlebotomists, healthcare assistants etc!) do a brilliant job. What our report highlights is that GP’s need more support to identify possible blood cancer symptoms and prompt them to do something about it - be that a blood test, or refer onto a specialist for further input. It’s absolutely not about expecting GP’s to diagnose blood cancer, but to consider it as a possibility.

Our report is here, which discusses this in more detail, and highlights we want GP’s to have more support around blood cancer and blood cancer diagnosis from NHS England to meet NHS targets and ultimately, ensure people aren’t going back and forth to their GP for years as many people tell us they did prior to a diagnosis.

https://bloodwise.org.uk/sites/default/files/documents/bloodwise-delayed-diagnosis-report.pdf

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This does resonate with me.
For 3 years I had sinus infections month after month, my gp said it was just bad luck.
I saw an ENT consultant privately several times who wrote to my gp suggesting that there was a problem with my immune system, which my gp ignored.
I asked for a full blood count.
Another gp at the practice telephoned me late on a Friday night, she had seen the results and told me I had a bone marrow problem.
When I saw my own gp the following Monday he dismissed her findings and said “ I’m not worried about your results and hate it when someone does my job”.
I went back to private ENT consultant who immediately referred me to an Haematologist, on private basis who took bloods on the Monday, a bone marrow biopsy on the Tuesday and told me to come back on the Friday for results.
On Friday I was informed that I had MDS RAEB2!!
This was October 28th 2014.
The same Haematologist started treating me with Azacitidine in January 2015 on the NHS.
On 20/10 I completed my 63 monthly cycle.
If I hadn’t questioned my own GPs incompetence I wouldn’t be alive today.
I spent most of my savings on private doctors which I don’t regret at all as my actions have prolonged my life.
It’s worth mentioning that I complained to the practice manager about the way I had been treated. My complaint was met with hostility and I was informed that a clinician would have to review my records.
The doctor who did the review was the one I was complaining about.
His findings were pure fiction!!
MDS Support had been trying to raise awareness amongst GPS and produced a fact sheet describing symptoms that could indicate blood cancer.
I got a quantity of these to give to the Practice Manager who wouldn’t see me so I left them with one of her assistants.
Although the fact sheet was in medical jargon persistent infections were mentioned and needed further investigation, that’s what I had and nothing was done about it!!
Anthony

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Morning Anthony. Pleased to see you here again, and I hope various problems you were having have eased a bit. I can understand your frustrations with your GP, and he sounds of the old school…pompous and does not like being challenged. That is an awful way to treat a colleague too. At our surgery everyone is part of a team and we are able to request any doctor, although a wait may be involved if we want someone in particular. Your practice manager seems little better. Thankfully doctors coming out of medical school do seem better able to work in partnership with their patients. Take care of yourself. Louise

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Hi Blackhat, spooky, I was just wondering how you were this week. Yes, you certainly have had so many frustrations, poor quality service and battles with your medical services and you highlight them so clearly. This is at a time when you cannot have felt well and up to battling emotionally and physically. Take care.

Thank you Louise and Erica.
The gp I mentioned has since retired, I’ve ditched the one who replaced him as well as every consultation with him was a confrontation. Any question I asked he took as criticism and he twice prescribed medication that I knew wasn’t suitable for me.
The gp I have now is far more amenable, although he did prescribe antibiotics for a sinus infection that I knew from past experience would not be effective.
I researched myself for an antibiotic which I knew would be effective and asked him to prescribe them, which he did and the infection cleared.
I also have a standby course of the same one as I’m prone to sinus infections as I have a degree of Neutropenia and need to start treatment as soon as another infection starts.
I’ve also got a different councillor who i get on very well with, not at all patronising like the last one.
All is well at the moment, apart from the stress and anxiety which is always present in my life.
Best wishes to you both
Anthony

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So pleased that you at last have a GP and counsellor that you can relate to and work with. One less battle to deal with! Best wishes, Louise

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Hi Erica
Thank you and thank you for asking! I’m doing really well after a year of intensive treatment I’ve now moved into maintenance and am in remission.
I have 2 young children and they give me all the reason to fight and be positive.
I’m so very grateful for the treatment I’ve received and to all who have helped with that. That’s not to say there haven’t been failures in the service and frustrating times!
I hope you’re well and again thanks for reaching out!
x

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Absolutely and I’m in full support!
Let us all do what we can to support the health service and raise awareness so people are more knowledgeable and get the diagnosis and treatment they need as quickly as possible!

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Where can I get fact sheets / posters from ? I could ask permission to put them in my GP’s surgery ? Then everyone waiting to be seen could check their symptoms

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You can get them from Bloodwise and also MDS Support.Org.
You would have to speak to the Practice Manager about putting material in the surgery.
Best wishes
Anthony

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Hello! If you’d like materials to do some awareness raising, please send me an email via support@bloodwise.org.uk and we can see what we can do!

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Hi Anthony you mentioned you have MDS I have recently just been diagnosed with this too but I won’t know treatment options till Jan 2020 either chemo or a stem cell transplant I’m only 28 btw which is very rare illness for my age also my hospital have took 4 years to diagnose me!! Sent me to gastroenterologist for non-cirrotic portal hypertension cuz my spleen is 20cm and has caused varices ect I have been telling my consultant for 4 years how ill I feel!! in 2015 was discharged from heam after 3 weeks cuz bmb was normal but I still had pancytopenia and MDS still can’t be ruled out even with normal bmb, Anthony I’m sorry to be so long winded but I know MDS is rare so talking with somebody else who has it is a relief, may I ask how old you are cuz MDS usually strikes older people and have you got splenomengaly too?? Thankyou Beckie

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