I would also like to know this I sent away my complaint last Monday to the health board regarding my dad not heard back yet x

If you Google NHS Cancer Registry this will give a plethora of sites with information including www.cancerresearchuk.org/.../what-is-cancer-registration

Best wishes

Dave

From memory, they have 28 days to respond. This is to give them time to investigate your complaint properly. 

Thank you, there's a lot of detail about cancer registration here and there is a complaint procedure -that's not quite what I was looking for.   As far as I can see there doesn't seem to be a vehicle to collect the mis/late diagnosis information to inform future action.  I've emailed them and asked about this.  Will come back on this. 

Thanks again

Thanks - as in reply to Dave I'm looking for something different.  Wish you well with your complaint.  We went down the route of an independent medical report and a meeting with operations directo which has been useful - though we were not trying to sue has helped to get more co-operation from the Health Trust.

Sorry, I misunderstood your query. As well as a cancer patient, I used to work for the NHS and have seen the complaints process from both sides having pushed through a formal complaint about my own son’s inadequate care. 

All cancer information is collected nationally and is used to inform national cancer plans and NICE guidance.

Local arrangements vary but where I worked there were always internal clinical case reviews where there had been an unexpected outcome to identify any lessons learned. Complaints and instructions from the Coroner’s Court went through both that internal process and more formal investigations. In the worst cases I helped investigate, staff were dismissed and/or referred to the appropriate professional body  and where appropriate struck off. We never had any cases which led to prosecutions, but it has happened elsewhere.

It might be worth contacting your local Clinical Commissioning Group asking what local arrangements are in place and what assurances they can give you that lessons will be learned and applied. The CCG and your local authority share oversight of all local NHS services and hold local NHS Trusts to account.

I hope this helps.

Best wishes

Dave

Hi Dave

Yes - that's really helpful - I appreciate your experience.  I'm seeking something which records non, mis, or late diagnosis which would be separate from a formal complaints process.  It's likely that there are many grey areas where a formal complaint would not be appropriate but there are lessons to be learnt.  The issue is that if you leave the reporting to clinicians there's huge disincentives to record any errors of judgement or areas where the process could be improved.  I believe that the patients and their relatives have experiences which should be recorded pre-diagnosis - so I'm trying to find an opportunity to do this.  Ideally it would be a national/international database that could be analysed by qualified practitioners. 

Wishing you and your son the best

Hi yog and DaveK, a friend of mine found this thread, perhaps a lttle late on, but I lost my wife to bowel cancer, late diagnosed in January 2015. I'm attempting to start a charity (obviously nowhere near as big as this one), to try and help earlier diagnosis of all kinds of illnesses, both physical and mental. Once you have a structure in place it's then just a matter of effort. Huh, Just! My charity is to be called BerylsBequest and if you can't work that out I've failed already. It's early days yet so just watch out for that title, please.

Hi R Foster

Sorry to hear about your wife - good to hear that you are doing such a constructive thing - will look out for Berylsbequest