NRAS has joined an alliance of patients, professionals, industry and other charities to campaign for action around earlier diagnosis. The new entity is called the Early Diagnosis Alliance and is calling for:
1. Secured ring-fenced funding for early diagnosis implementation for which NHS trusts will be held accountable
2. The National Institute for Health and Clinical Excellence (NICE) to develop a Quality Standard for early diagnosis across all disease areas
3. The Health Select Committee to investigate the barriers and possible solutions to implementing a system-wide early diagnosis approach
4. A discussion in Parliament on the issue of poor implementation of good practice in early diagnosis
5. Reduction in the length of time from when a patient first presents to the GP/hospital to when a formal diagnosis is made.
My husband died with NO DIAGNOSIS as a result of 'a series of small mistakes' (the nurse said to me on day after he was admitted to hospital, 10 days before he died) - in the month prior to his death: refusal to take blood on more than one occasion, refusal to admit when he could no longer walk (keeping in mind 10 weeks before he was riding his motorcycle), administration of a drug which can be lethal in rare cases and was not followed up or considered a possibility until 5 days before his death, prescription of iron 8 days before colonoscopy, death in 31 days after giving omeprazole, death with no diagnosis, lying in the GP surgery which was admitted in Coroner's court, final diagnosis - ideopathic bone marrow failure - in other words, nothing wrong but the failure for no apparent reason.
Since then, although I had symptoms of Rheumatoid Arthritis in 2010, I was mis-diagnosed because a simple blood test was not done by the consultant in Basingstoke - CCP Antibody. It took 18 months for correct diagnosis and start of treatment, almost 2 years from first major symptoms.
I have copies of my medical records - they have incorrect things in them, ranging from levels of drugs (or not) that I am supposedly taking, euphemisms for my symptoms (e.g., cognitive dysfunction instead of confusion, occasional loss of balance, minor auto accident, cognitive dysfunction), and inaccuracies in the history taking which would impact on further treatment and on insurance company view of my history.
Let's start holding physicians accountable, and let's stop having them hide behind the massive money power of the NHS. Let's involve physicians from across the EU in review of medical records, for a start.
signed it and posted link on facebook
unlike Alice, my GP picked up on RA on first visit and I saw consultant within 6 weeks of diagnosis.
I'm about to sign it but I did just want to say that it's one thing to get an early diagnosis - but the problem for me has been with not getting any follow up reviews or care. If sticking someone on a DMARD and forgetting about them is all this achieves it won't be much use? So early diagnosis followed by swift and continued action is the thing really. And yes I agree 100% about physicians being held accountable Alice Diana.
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