Help with blood test results please

[nellietheelephamt]

I have obtained at least some of my blood test results from the bloods taken at the GP surgery. The hospital are less obliging.

Anyway from before 2011 (first record) to 2021 my Hgb was bouncing between 150 and 190 (lab normal 115-175) and haemocrit around 0.50 (.35 - 0.47). This is the only data recorded for this period. There was no haemotologist involvement as my haemo retired in 2012 and I was discharged when he retired (normal practice). My GP also retired and as there was no haemotologist at the local hospital I fell through the cracks so to speak.

In 2022 my Hgb plummeted to about 85. It has bounced around between 80 and 100 since then with higher numbers post transfusion.

A set of results (with lab normals on brackets) from April this year after my first transfusion:

Hb 100 (115-165) LO

WBC 3.5 (4-11) LO

PLT 308 (150-400)

MCV 70.6 (83-191) LO

RBC 4.36 (3.8-5.8)

Hct 0.308 (0.36-0.47) LO

MCH 22.9 (27-32) LO

MCHC 324 (320-360)

Neut 1.7 (2.0-7.5) LO

Lymp 1.26 (1-4.5)

Mono 0.4 (0.2-0.8)

Eos 0.08 (0-0.4)

Baso 0.0 (0-0.2)

There is also a note to say my ferritin was 1 and that the locum haemotologist had been informed.

There's also a note confirming my BMB scheduled for early September was cancelled as the locum haemotologist thought it would not provide any further information and she was referring me back to GI. Since then I have been discharged from GI with a referral back to haemotology. Haemotology have failed to respond to this except to note the re-referral was made but since I had recently been discharged by them no further action would be taken.

I see Dr Drummond privately in December. I'm trying to keep my expectations low as so far it's been head against a brick wall as I've been round in circles.

In 2022 I broke my ankle and A&E missed "the very nasty fracture" and I have used a wheelchair since then. My Dad died (he had dementia and I was his carer). I have also had multiple PEs (both lung fields) and DVT so take warfarin, the newer drugs not being suitable for coeliacs. I have a history of auto-immune disease.

I know there are knowledgeable contributors here but I am confused to say the least!!

I had COVID in 2021 and was hospitalised for that infection. I am not sure if that has any bearing.

Sorry this is so long.

[RoundTheWorld]

Hi Nellie. I don’t have any advice but I’m sorry you’ve had such a tough time. Hope you get answers when you see the Specialist.

[nellietheelephamt in reply to RoundTheWorld]

Thank you. I am trying not to get my hopes too high having been let down so often over the last 13 years. I am hoping that after 13 years with little treatment I haven't anything really nasty.

[lizzziep]

Have you contacted PALS? The patient liaison service, you could ask them to find out why haematology aren’t seeing you.

[nellietheelephamt in reply to lizzziep]

It's "Patient Experience" here and they have been contacted but no reply from them. My MSP (health being a devolved issue) has taken it up on my behalf and also has had no response.

[beetle]

I used to see Mark Drummond when I was in Scotland. I hope you get some good information from seeing him. It just seems so sad that you are having to resort to a private appointment. From what you are saying your care provision seems to be less than optimal to say the least. Keep us updated on the results of your visit

Best wishes. Jan

[Loubprv Volunteer]

good morning! If I were you I’d move to another hospital - I did when I was dissatisfied with the service.

Not sure where you live but there might be an Mpn soecialist near you. This is NOT good enough.

Having said that I don’t bother with sifting through my results. I look at my haematocrit and my platelets out of interest. I have a superb Mpn haemo who I trust implicitly.

After all, we don’t take our car for a service then drive it home, lift up the bonnet and check it all again.

All you have to do is contact another haematologist and then ask your gp to refer you.

Those of us who bang the table, and are more assertive, get the better attention.

Best wishes

Louise x

[nellietheelephamt in reply to Loubprv]

We don't have that option in Scotland which is why I have to go private.

The GP has to refer to the local hospital, there is no other option. The next nearest hospital in Scotland means 2 nights in an hotel due to distance and lack of transport links.

I am in the part of Scotland that gets forgotten, south of the central belt and just north of the English/Scottish border.

[Loubprv Volunteer]

crikey. We live in Cumbria. Not that far from you then. And you’re PAYING for this dreadful treatment?

[ainslie]

there is no question you are being treated dreadfully. I know Mark Drummond and he is very good, he has influence in Scotland so he can at least write to your local docs to tell them what they should be doing

[Hocus58 in reply to ainslie]

I totally agree with Ainslie. Really sorry you are having such a hard time getting the level of care you need. I live in Scotland, albeit central region, and have shared care with local haematology team and Dr Drummond who I see 3 times a year. He writes to both my doctor and heam team, copying me in and advises as appropriate. Sometimes there is no need for any advice to the team and he totally agrees with what is being done but I always come away more relaxed in the knowledge that he oversees my care. I see him at Spire in Edinburgh so it is quite a way from where you are I imagine.

I hope you get the proper care and information you need going forward.

[hunter5582]

The care you have received is truly appalling. It warrants a formal complaint(s) at the highest levels. This should never be tolerated.

Dr. Drummond has a very good reputation. He will be able to help you sort out your status. It would not be a surprise if he indicated that the BMB is needed at this point.

It is unfortunate that you have to wait so long to get the answers you need to your questions. Wishing you success in getting a proper diagnosis and treatment plan in place.

[nellietheelephamt in reply to hunter5582]

Yes, I think a BMB is the way to go. It would establish if there is an issue in the bone marrow or not. If there is I have a clear way forward. If not then further investigation is needed but what is not so clear.

One thing is for sure, any BMB will not be done at the local hospital. I have had at least one JAK2 blood test lost, possibly cancelled by the haemo but possibly just lost in the system. The sample was taken in April so results should have been back by now.

[hunter5582 in reply to nellietheelephamt]

My JAK2 tests are usually back in a week or so. I understand your suspicail that the hemo just did not bother doing the test. Seems more likely than the lab losing the results.

Wishing you success moving forward.

[nellietheelephamt]

Thank you everyone, for those who have replied on thread and those who have messaged me.

There is a formal complaint lodged at the moment but no reply as yet. If the reply is not received within the statutory limits I can escalate to the SPSO although that is a toothless tiger in so much as they can make recommendations for improvement but there are no checks nor penalties for non-compliance. The best thing from an SPSO adjudication is the bad publicity. If the SPSO do not "come through" then the only option is direct press involvement but that rarely ends well for anyone - and the press are only interested in stories that have major headline or click bait possibilities. My case is so normal at the local hospital it doesn't even raise an eyebrow. The problems there are acknowledged and widely known.

I have involved my MSP (health being devolved) who is keeping a watching brief but her only course of action is a formal complaint to the hospital which is already underway. The First Minister referred me to the minister for health who referred me to my MSP so I can't really go any higher at the moment. I have thought about going to Holyrood and sitting outside the parliament building with a placard but it's a bit cold to do that at the moment!

[saltmarsh]

What a sad commentary on the healthcare system in your area. At some point you may need to get to the right provider even if it involves a hotel stay. Very sorry you are having to deal with this. Good luck moving forward.

[nellietheelephamt]

After asking the hospital for my last 7 months of blood test results (should be available on a computer print out) I was sent a 10 page form to fill in and my signature had to be witnessed by a registered professional person who had to provide registration number of their professional body. Plus copies of two ID documents one from each of a different list. They can still refuse to supply if they say having this information is not in my best interest.There is no NHS app here where tests can be downloaded. I have also found that each hospital department has their own IT system which is closed to other departments. You couldn't make it up.

Being house bound finding the witness to my signature was difficult but an appeal meant someone local kindly popped round to do the necessary.

So that's back in the hands of the hospital.

I also had a response to my complaint which was just as expected so I have provided more documents which show the response as lies. Then finally a phone call saying I was being discharged from all services. Two because whatever is wrong is not GI or pulmonary and the haematologist has declined to become involved and referred back to GI.

Thank goodness only 4 weeks on Monday until I see someone out with the local hospital.

[hunter5582 in reply to nellietheelephamt]

That is truly appalling. Access to your own records is a fundamental patient right. It is your information, not the hospital's. The providers at the hospital need your permission to view it, not the other way around.

Getting bounced around by the different departments that do not collaborate and failing to address your medical needs appropriately reflects a level of ineptness and/or indifference that needs to be addressed.

Keep up your efforts to get the issues resolved. Never give up! Inadequate care can only continue when it is tolerated. Do not let the prodigious red tape entangle you. Cut through it however you need to.

[nellietheelephamt in reply to nellietheelephamt]

And today a haemo out-patient appointment at my local hospital - this is AFTER I have supposedly been discharged from all services there.

It's after my appointment with Dr D so perhaps there might be time for him to contact them and give some guidance.

[RoundTheWorld]

What the GMC says about patient access to their information in case you haven’t seen it already (highlighting isn’t mine and the paragraph before is relevant as well):

gmc-uk.org/professional-sta....

Sorry for the anxiety all this must be causing you. On the plus side in 4 weeks (or soon after) you should be getting some answers - the MPN Specialist will need blood results one way or another, even if only new ones taken now. Hope you soon get clarity and a plan.

[nellietheelephamt in reply to RoundTheWorld]

Thank you for that. Our local hospital just like to make things as difficult as possible for the patient. My GP has provided records that go back over 10 years in summary, and on detail over 12 months. It does make interesting reading as obvious (to me) that big changes were either missed or ignored.

[nellietheelephamt in reply to nellietheelephamt]

I have my blood test results from the hospital. All compiled and the trends are so very clear ..... if only I had had them previously I could have shown the premise my issues were GI related were way off skew and that it is almost certainly haemotology / bone marrow very possibly triggered by COVID infection.