A pet moan of mine .
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 .
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 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