Bone Marrow Biopsy Didn't Happen

[nellietheelephamt]

As it says in the title. I followed all the instructions, came off my warfarin and did the heparin injections, got to the hospital and no one had read my notes. There was no local anaesthetic available so no biopsy done.

Now I have to wait for a case conference for them to decide the next step. So I now have to stay home and wait for a phone call or a letter.

After 2 years of no progress I should be used to this but it still feels as if the bottom has dropped out of my world. To add to my unhappiness my ferritin level is now at 1. Yes, one. Less than 15 is classed as severe anaemia.

[RoundTheWorld]

How incredibly frustrating! Hope they get back to you quickly.

[nellietheelephamt in reply to RoundTheWorld]

Nothing today but it could be a month before the specialist is back in this area.

[hunter5582]

Sorry to hear about such a significant screw up. I find it hard to understand how a hospital would not have a local anesthetic on hand, particularly when they know they are going to be doing procedures like a BMB. That seems very irresponsible. Why is a case conference is needed? You were already scheduled for a BMB that they did not perform because of their mistake. This should just be a rescheduling issue.

I would file a formal complaint if I received poor care like this. Inadequate care can only continue when it is tolerated. This is a situation where intolerance is indicated as the appropriate response.

Wishing you success moving forward.

[nellietheelephamt in reply to hunter5582]

The technician doing the BMB came in from elsewhere and assumed the correct local would have been ordered. No-one had read my notes so the usual anaesthetic they have on hand for stitching minor wounds was assumed to be suitable but isn't. As we know assume buts an ass in front of u and me.

Complaint made and already closed down.

[Amethist]

That sounds all completely unacceptable and like you have been fed lies and excuses. Have you tried contacting PALS wth your complaint? They may be able to help. Following that contact local MP, health minister and local paper .

nhs.uk/nhs-services/hospita...

[nellietheelephamt in reply to Amethist]

It's not PALS but Patient Experience and they just referred to the clinical team who shrug and blame budgets and staffing issues. Being in Scotland it's a devolved matter so I contacted the MSP who also referred me to Patient Experience and the Health Secretary referred me to my MSP. I could write the script as it is always Westminster's fault for not providing enough money. The local paper are aware but decline to become involved.

Making complaints is thankless, frustrating and affects future care adversely. Last time I had a complaint upheld by the SPSO following which when attending clinic there was a loud comment of "that's the woman who made all the trouble" and I was kept waiting for 2 hours and then told the clinic had finished!!!! The staff have their own ways of getting revenge. My notes claim I did not attend and it took months to get that corrected via witness statements. Meanwhile I had been discharged and had to start the referral process from the start. Totally unprofessional but very little that an individual can do to change an underlying culture. Even if the SPSO finds in the complainant's favour all they can do is issue an improvement notice which is not binding on the care provider so can, and usually is, ignored.

[Amethist in reply to nellietheelephamt]

That is horrendous! What a messed up system. Poor you 😵‍💫

[jointpain]

Core blimey, how low is your Hgb? Without the correct building blocks your bone marrow can't make red cells! The cells my wife makes when her ferritin level is low (below 30) seems to be more platelets and neutrophils and less red. She often has a ferinject infusion.

[nellietheelephamt in reply to jointpain]

Hgb was 100 when checked 2 weeks ago. The results from last week's hospital tests were not disclosed except my ferritin was 1 (one).

[nellietheelephamt in reply to nellietheelephamt]

I had an allergic reaction to the iron infusion and they won't to a transfusions unless the Hgb falls to below 80.

[jointpain in reply to nellietheelephamt]

What reaction did you suffer from? My wife has had bad reactions from red cell transfusions and ferinject, but these days has a hydrocortisone infusion at the same time and a diuretic too which alleviates the bad reactions. It might be worth asking about these. The reactions from memory were high heart rate, low spo2, water in the lungs, and ascites and high temperature. Around a day after the blood transfusion, lasting up to a week.

[nellietheelephamt in reply to jointpain]

Rash, unstable blood pressure and erratic heartbeat, projectile vomiting and diarrhea. Itching so much my bones were burning. Histamine levels 24 hours after the infusion were 5x normal after anti-histamine and adrenaline given.

[nellietheelephamt in reply to jointpain]

Hgb now 92.

[jointpain in reply to nellietheelephamt]

Not really surprising that your Hgb has dropped to 92 with a ferritin level of 1! There are iron tablets available that may be suitable to take, you should really badger your doctor about what may be available.

[nellietheelephamt in reply to jointpain]

Over the last 2 years I have tried every tablet available plus had an infusion. At best they don't help, at worst they make me desperately ill. I ended up with paramedics being called 3 times after the infusion and a hospital admission. Also it had very marginal and short term benefit in increasing Hgb etc.

[Amethist]

have you tried “citizens advice “ ? Maybe they can point you in another direction for legal advice.

What is your gp doing about all this, as surely they can’t be happy either? There must be other places they can refer you to.

Also you could perhaps make a complaint through GMC ? Sounds to me that you would have a good case.

[nellietheelephamt in reply to Amethist]

My GP has just left the practice and I meet with my new GP on Wednesday. It was my previous GP who pushed for the haemo appt after the hospital lost 2 referrals. Being in such a rural area and because I use a wheelchair there isn't a lot of choice. Only the one hospital and because of budget overspends people are not being referred out of area - a blanket ban on such referrals. The SPSO said this is a matter for health board governance and out of their remit. Guidance is just guidelines and doesn't have to be followed.

I can't find the hospital consultant on the GMC website so not sure what to do about that. EDIT: found the consultant but they are not on the specialist register and subject to re-evaluation whatever that means.

Citizens Advice is 54 miles away so not really an option and they can't do any more than I have done as they told me on the phone.

[Bluetop]

Oh how disappointing when you geared up for it!

[jointpain]

Just read your answers again, I'd move to England

[nellietheelephamt in reply to jointpain]

I've thought about that but finding a rental which is wheelchair adapted made it impossible

[nellietheelephamt]

Just had a consultation with my new GP who is amazing.

She has had a letter from the hospital that says I had the BMB on 11 Sept. Obviously I didn't. I broke down in tears.

I have asked for a private referral to the specialist recommend here.

[nellietheelephamt in reply to nellietheelephamt]

And I have been discharged from haematology with no reason given.