SAR

No, I haven't but I can access all correspondence and test results on both my treating hospital's patient hub and also at my GP.  The only time I have seen scans is when one oncologist showed me on the screen how they compare side-by-side.

I'd be interested to know if your doctor has copies of your scans, I don't think mine has.

Irene xx

Hi Irene

Well my SAR is incredibly basic and my local hospital doesn't share anything other than appointment summaries so I'm having to submit another SAR to them and also one to the treating hospital thats in a different trust ..... and they send letters to my gp by post! My hospital also does not use the Patient knows best to its full advantage either!! I have one blood test on there from October and gyne letters from four years ago and nothing else!! My thoughts are as a primary carer the GP should hold everything as if we need to be referred to another department/specialist then any referral made would contain any relevant information attached. I think this is incredibly important for us as for late effects etc ... for example if I am sent to a Bone Specialist because of my dexa results then surely my planning scan (from another hospital trust) would be relevant because this would contain information of the radiation area ..... that would then take the pressure off the bone specialist having to rebook another appointment because he doesnt have all the 'paperwork' to hand ..... joining the dots and relieving pressure on the system by not being tangled up in unnecessary admin tasks. 

I have signed up to be a patient rep for our local cancer care alliance who's aim is to make the cancer pathway easier for the patient. I am going to fiercely advocate for an easier smoother pathway for us. Personally i want a nice neat little file with everything in then if i need to go private or I emigrate lol then I'm not having to start again. I think it is utter madness that surgeries and hospitals use different systems ... the nhs has made as rod for their own backs!!

Becky xx

This is interesting Beckym16798147d , I agree, I think it’s really important that information is shared, if we’re visiting our GP, especially once you’re through your 5 years surveillance it would be good if all of the information regarding your cancer diagnosis through treatment & recovery was at their fingertips. 

Please keep us updated on how you get on.

Nicola 

I will do. I’ll be attending the rep meeting next week so I’ll let you know what the plan is for our area. Plus keep you posted on how the SAR.saga has played out too lol! I guess we just assume that the gp holds everything!  

Hi Becky,

It’s interesting to hear about your experience with medical records and information sharing.

 I can really identify with this and share your concerns. I was treated for anal cancer and finished treatment in November 24. I was then diagnosed with bilateral breast cancer in January 26. 

Neither oncologist seemed to have any idea of the ‘other’ cancer as were using different systems despite being in the same trust.  I had to explain everything to both.  When I saw the pain Consultant for back pain following radiotherapy, he was using yet another system and only knew about the cancer from GP referral letter.

No scan results are uploaded onto the patients know best system so like you have submitted a SAC to see the reports.

It does seem worrying that with so much technology, there seems to be no consistency in the sharing of all medical records between all professionals. I had assumed prior to recent experience that this was a given.

I am truly sorry to hear of the results of your dexa scan while so young and hope that you can access some preventative treatment. 

It’s brilliant that you’ve signed up as a rep to take these very real issues forward- huge well done to you for doing this.

Xx

I’m so sorry to hear that you’ve experienced this it’s ridiculous that such a large organisation like the nhs can’t get it together to have the same systems for seamless and flawless communication! I will be banging the drum for all of us! I find it disheartening that whilst we are suffering from this awful disease we are constantly having to repeat and revisit the same trauma over and over! It’s not on! 

Becky xx 

Just a quick update … after a call with my gp today she’s agreed to refer me to a bone specialist in a larger Hospital near me ️ she said my case was too complex not to  need to chase my oncology hospital up to supply the planning scan now so as not to waste time! 

Great news Becky, keep us posted on how things go.

Nicola 

 Beckym16798147d 

That is wonderful that your GP is being proactive - let's hope you don't have too long to wait!

Irene xx