No contact from NHS

Hi Everyone,

Seeking advice / thoughts.

I was diagnosed with Chronic lymphocytic leukaemia (CLL) on 2nd March this year. Despite contacting the hospital department that diagnosed me and my GP, I have NO written confirmation of the diagnosis. My GP does not even have Chronic lymphocytic leukaemia (CLL) on my health record.

Surely this can’t be right to leave a person almost 3 months with no acknowledgement of the condition. Imagine I had an accident or medical emergency and my records were not clear and up to date.

Thankfully I have received help via a private consultant. Had I not had the private option I think I would be in a very distressed state now.

Not sure where to go from here. Anyone had a similar experience.

Marie xx


Dear @MarieJ1979
Thank you for posting and I am really sorry to hear that you have not heard from the Haematology team that diagnosed your Chronic lymphocytic leukaemia (CLL). May I ask whether the Haematologist you spoke to advised the frequency of your blood count monitoring?
As you mention in your post, it is important that you are aware who to escalate any signs and symptoms to and of course any other questions you may have. Was it your understanding that your GP would be your main contact regarding your monitoring or were there discussions around returning back to the Haematology team?
I also wanted to ask you whether you have been given any information regarding Chronic lymphocytic leukaemia (CLL)? I will add some resources to the end of this message just in case. This will include COVID information as you are entitled to further vaccinations and potential treatments, this is important to be aware of.
In terms of next steps, I would persist in calling the Haematology department regarding communication of your diagnosis to the GP. If you would like to message me privately I may be able to pass on some contacts if you let me know the hospital you attended?
We are also very happy to to talk to you here if that would be of help: Blood cancer information and support by phone and email | Blood Cancer UK
Do take care
Chronic lymphocytic leukaemia (CLL) - what is it, symptoms and treatment | Blood Cancer UK
Covid vaccine for people with blood cancer | Blood Cancer UK
Antibody and antiviral treatments for people with blood cancer | Blood Cancer UK


Hi @MarieJ1979 I expect it is so distressing for you still not having your diagnosis in writing.
Obviously your GP has not had a letter either.
Perhaps you might contact the NHS medical person who diagnosed you via a phone call or email asking for a letter of diagnosis, if that fails the hospitals PALS department (Patient Advice and Liaison Service) to see if they can assist you.
I have just seen that @GemmaBloodCancerUK has given you a far better response than me, but I wanted you to know that I cared.
Be kind to yourself perhaps you might still be in shock and it might all seem surreal, I would be.


Hi @MarieJ1979. No, it doesn’t sound right and understandably would be causing you a lot of stress. @GemmaBloodCancerUK has given good advice. Please do let us know how you get on X


A pet moan of mine :tired_face:.

As I’m a typical ‘more mature person’ with comorbidities my GP agreed that their science was often grey and desperate for patients whole health data. I have a great rapport and he understands that my presence at my consultations/treatment is the only guaranteed source of that data. That shouldn’t be the case! If I wasn’t of the self advocating nature I am how do Doctors present best practice?

He had an unconfirmed MGUS diagnosis? of Myloma. I break my femur, is Bone Lysis an issue? Osteoporosis? No follow up from the Hospital that treated the fracture even though I told them I was MGUS.

I’m later diagnosed with Waldenstroms Macroglobulinemia, a Lymphoma not a Myloma. GP has no knowledge of my treatment type or regimen. “Have you completed your Chemo?” he asked. " I’m not on Chemo. I’m on targeted therapy (Rituximab/Ibrutinib) of which one of the drugs is not NICE supported".

Treatment side effects include hypertension. Diabetic clinic is the only monitoring department at the Med Centre that picks this up with no knowledge of Haemotology’s regular monitoring. Ibrutinib raises the pressure but GP is expected to provide the counter treatment. ACE inhibitors are the stardard response but not a given (AF/Stroke risk) with Ibrutinib, that drug of which he had no knowledge I was taking daily.

I have OK to have C19 booster as arranged through my Med Centre at that Centre as high risk. On attending I get an inquest from the visiting vaccination crew “why are you here? You’re not 75!”. Obviously the NHS Covid database has no trustworthy link to Patient Records.

My broken leg ‘belongs’ to one hospital board, my blood cancer ‘belongs’ to another and my GP cannot ‘hack into’ their systems. Nor infact can they of his.

NHS were keen to let us know they were ditching fax machines and pagers but here in 2023 no dedicated Patient email/sms technology on ward to replace them. Shielding and Virtual Wards need such.

In my former world of safety risk management the C’s were/are essential to minimise a hazard from becoming a risk.
Clear Control, Competence with contemporaneous Cooperation, Coordination and COMMUNICATION!!!

The hazard is Blood Cancer. The potential increase of risk is to my health.

Google and Amazon know more about me than the NHS :face_with_head_bandage::face_vomiting::sneezing_face:.

If such failings of management resulted in injury at work the HSE or LA would prosecute and I might sue.
What’s the CQC doing about this incompetent ‘NHS siloed Patient information’ admin hazard?

Sorry :disappointed: for the lengthy ramblings but how many NHS communications failings are raised in Formal Inquiries, Coroner’s etc. and claims for compensation?

Enjoy the day and keep safe. Sunny here in the East Mids :sunglasses:


Oh goodness you’ve had a lot worse time than me by the sounds of it. The diseases are bad enough but the let downs in communication affects mental health too.

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Many thanks for your reply xx

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Many thanks for your reply. I’ll keep posting how it goes. Xx

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Many thanks. I’m going to contact PALS. Xx

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Hi Gemma, I was initially told my GP would be looking after me. But my GP knows nothing about it!! The hospital was Dewsbury West Yorkshire. Like I mentioned I saw someone privately and got him to write me a referral letter for my vaccines. Hopefully I will get those soon. Had I not been blessed with the opportunity to see a private Chronic lymphocytic leukaemia (CLL) specialist I feel I would have been hung out to dry.

I just don’t understand how I could be put on a 2ww cancer pathway back in February and it’s almost June and there has been no written confirmation of a cancer diagnosis. I know it’s a chronic condition but still…

Thanks for all the replies and kind words. On a positive note. The private consultant did a blood test and my lymphocyte count went from 28 down to 24. Other blood cells remain stable and within normal ranges. So I’m hoping my watch and wait continues…

Best regards


Dear @MarieJ1979
I am really glad to hear that your private Haematologist has supported you and that your lymphocyte count is stable.
You are right that the NHS team should have written to your GP and confirmed your diagnosis, they should also have provided you with contacts where you and your GP could escalate concerns.
I would suggest getting in contact with the Macmillan Cancer Support Centre | Mid Yorks as they could provide support for you and direct you to the Haematology Nurse Specialists that you could gain some support from. They also provide support and information for all cancer patients.
I also wanted to include the number and email for the local:

Patient Advice and Liaison Service (PALS)

PALS can be contacted via email: or via telephone [01924 542972](tel: 01924542972) to provide feedback or to make an enquiry.

You may find it useful to fill this form out to attach to an email:

PALS form [doc] 83KB

If you would rather leave your feedback via the telephone you can call our PALs team on [01924 542972](tel: 01924542972) from 8.30am until 4.30pm Monday to Friday.

Patient feedback

We are listening - express concern, comments or appreciation about our services.

Please know that we are very happy to support you so please do keep in touch. I would still persist in gaining the definitive diagnosis letter as your GP needs this for their records and to provide them with details of your condition and the signs & symptoms to be aware of.

Take care