GP hasn’t recorded my condition

[Fjdjdjdjd]

Hi everyone. I was diagnosed with ET nearly a year ago now and have generally been receiving a pretty bad service from both my GP and my consultant. I recently found out that my health condition isn’t even on my medical record which means I’m not being invited for covid jabs or flu jabs. I was told I had to make an appointment with my gp to get this recorded on my record, but they can’t give me an appointment. This is ludicrous right? How am I meant to be taken seriously if whenever I have an appointment I have to remind them I have cancer. Is this normal, is it a west Hertfordshire nuance or do I just have terrible care?

[hunter5582]

That actually sounds like plain terrible care. poor communication and lack of understanding of what ET is and why it is important. Perhaps a change of venue for your healthcare is in order. Others have reported needing to change their base hospital in order to ensure quality care.

Do note that many hematologists are not very experienced with MPNs due to how rare they are. That si why it is so important to consult with a MPN Specialist. This is the only way to ensure optimal MPN care. Here is a list.

mpnforum.com/list-hem./

All the best.

[Fjdjdjdjd in reply to hunter5582]

many thanks . I have emailed one of their secretaries. Fingers crossed!!! My numbers aren’t high at the moment so I’m not exactly an interesting test case for the pros.

[Fjdjdjdjd in reply to Fjdjdjdjd]

Many thanks Hunter, I've finally managed to get through and now that its confirmed i have some fibrosis I can be referred to an MPN specialist.

[Anag in reply to hunter5582]

Interesting. There are 5 MPN specialists in Austria and there is only the one in Vienna listed. I have written to the mpn forum about this but I guess they didn’t change the information.

[hunter5582 in reply to Anag]

Patients have to recommend a doc using this link.

mpnforum.com/good-doc/

Hopefully people who have seen these docs can make the referrence.

[Anag in reply to hunter5582]

thanks. I added my MPN specialist

[ciye]

It's appalling care and Haemotology definitely should have informed gp.. I can only echo what Hunter has already said.

[Conneryfan]

Yes it is terrible care. I'm so sorry that this is your experience. I can only echo what Hunter said and hope things improve for you.

[mark382]

I've had PV for 14 years and can't fault haematology department. However, when the covid vaccine role out started I saw others on here were being called. Checked with GP who said I've now coded you as Clinically Extremely Vulnerable and had letters to shield, nearly 12 months after I should have, and had call for vaccination. Again this year others were getting 4th vaccination and I heard nothing. Happened to go to GP with something else and took a copy of letter that Blood Cancer UK had written for GPs. Showed doctor who said they'd update records, within half an hour text appointment for 4th vaccination. So, yes I believe it is a lottery about coding and you have to chase everything yourself. How many others have been missed. Good luck with updating records, but keep at it. I generally email, rather than phone as then there is an evidential record of conversations.

[ainslie]

it’s bad care, your Haem is meant to write your GP regularly and definitely after diag, I would make official complaint to NHS , that level of incompetence can be dangerous ie if one hand doesn’t know what the other hand is doing

[Hopetohelp]

Sounds like you have been unlucky. My Haematologist informs my Gp of each consultation although I noticed sometimes it can take a few weeks. If no result with email try a hard copy in the post with a stamp the old fashioned way. I got a quick response with that method regarding a different complaint to my Gp. Unfortunately we have to shout sometimes, although it’s not right!

[KernowBlue]

I can understand your frustration, I’ve had the same issue with my GP surgery. I was hospitalised 12 months ago & it was because of the blood tests I had done for a completely unrelated issue that the doctors noticed my haemoglobin was far too high. On my discharge letter the consultant said I had Polycythaemia & my GP surgery added that to my medical record. Two weeks later it was confirmed I had PV & despite my consultant advising them of my diagnosis & PV being mentioned on every letter my consultant sends to my GP my medical record wasn’t amended. It took a couple of phone calls & a lot of explaining to the receptionists for them to understand there is a difference between Polycythaemia & Polycythaemia vera. As far as they were concerned “Polycythaemia is already on your record “.  I had to be very persistent to get them to change my record but it shouldn’t be like that. 

[Fjdjdjdjd in reply to KernowBlue]

I'm so sorry you experienced this. It's truly a kafkaesque environment sometimes. I finally found the right person at the GP and all of a sudden i'm booked to get all my jabs, have a brand new letter from my consultant and a phone call.

[KernowBlue in reply to Fjdjdjdjd]

I’m pleased you’ve managed to get this sorted at last!

[JOY2THEWORLD49]

Hi

I can sympathise with you as it happens to me.

A stroke, with aF Rapid and Persistent and 4th day in hospital diagnosed with Thyroid cancer, A shadow over my thyroid showed was detected during a carotid artery scan.

No follow up appointment for heart!

When i met a new Locum she said there is nothing on your record to say you have had thyroid cancer so I invited you to see me about your raised thyroxin.

When I am levelling my TSH down to 2.0 I need as much thyroxin as it takes to reduce my TSH level.

Now I write on my TSH and T4 Thyroidectomy due to cancer.

My locum said that I should carry around a folder which holds all recent uptodate diagnosis.

When I question where are the copies of my specialist letters they cant find them.

In NZ we have ManageMyHealth. I say they should be there.

I have a Specialist for Heart now. AF and Rate Control,, Stroke, Enlarged Heart, Systolic Heart Murmur and Meds.

A Specialist for Thyroidectomy and Cancer (removed so a scan every year whic I have to remind them). With guidance about forward TSH level and Meds.

Uro/Gynae Specialist for TVT Johnson & Johnson Kit removal now partially removed and damage repaired March 2022.

I remember meeting a new Dr and saying .. after he said "what can I do for you today" well you will see that I have had a stroke, have AF, had thyroidectomy for cancer. He said "well which one is it?"

I said you must treat me holestically!

So it happens in Z. The reception always allows a double appointment.

You will need to fight for your right.

If I have an emergency I drive in or telephone and demand to be seen. Like last week after 2 fillingscand 6 days later toth ache theobbing pain in tooth and gum. I was seen in 15 mins.

Take care. Be assertive. Its for your own good and health.

Surely yo can complain.

Cheri. JOY. 73. (NZ)

[Scaredy_cat]

If you don't get anywhere with existing medics, you are with striking distance of London and Oxford so asking for a second opinion with one of teh specialists listed by Hunter above should be really doable

[Wyebird]

hi, what a todo. Do you have a consultant? Surely there is a letter stating your diagnosis. Maybe go into your NHSapp.

If you are under 60 and in the uk. Because you have a blood cancer you are entitled to free prescriptions.Good luck.

[Fjdjdjdjd in reply to Wyebird]

Hi - my consultant is regularly a locum and can't communicate so that sadly is half the problem. I finally spoke to my consultant, 6 months after my biopsy and my diagnosis has changed to pre MF and i'm getting referred. So excruciatingly slow progress, but things are happening

[Wyebird in reply to Fjdjdjdjd]

Sorry to here you are now pre MF. if you have some sort of communication stating your condition you will be able to go to any covid vaccine centre. On showing documention they will give you a jab.

Good luck

[Plavers]

so sorry you’re not getting the care you need. This really needs to be reported and actioned. Make some noise about this. Can’t understand why your haematologist hasn’t passed this down and up the line of communication.

[jacquelineruth2000]

Hi I’ve also had similar issues with Gps not updating records after my haematologist has written to them . Recently my haematologist wrote requesting my aspirin be changed to enteric rather than soluble and I actually had to go to the surgery and show them the letter. I also never got told to shield during the pandemic and had to get a letter from the hospital to show I was eligible for the vaccinations. Really frustrating.

[Bobadog]

Hi

I am sorry to hear this,as it’s very stressful for you.

Hopefully you will get a referral to a named MPN specialist in London/Oxford?

As the other folk have implied,try and be assertive about the referral ,if necessary.

All the best

Chin up

Bobadog