Maggie’s confidentiality

Hi lorrainem and welcome to the Macmillan community.

Maggie’s centres are there to support anyone with cancer, or those supporting others with cancer, and it doesn’t matter whether  you are undergoing nhs or private treatment-the support is still the same for everyone.

They do collect information about people which helps give you the best type of support you need, but it’s important to remember that they have very strict rules on how this information can be used and shared. Confidentiality is a critical aspect of their work.

Their website gives you further details about how they use information they collect, and I’ll link to their website  here

Maggies

Please don’t worry that you will be “caught out” for not being completely honest. The main thing is to feel you can continue to access support. However, if you feel able to, you could explain that you panicked and said you are being treated under the nhs because you thought that would be better. They will, I’m sure, understand, and will be able to reassure you that this is not an issue for them. Recording your details is something they do to help you, not penalise you. 

You haven’t said what type of cancer you have, but our community here is divided into specific cancer support groups and you may wish to join one of those to connect directly with others going through the same thing.

This is a list of our cancer specific support groups which you can have a look through. I’d recommended joining whichever applies to you, and I’m sure you’ll find lots of support there as you go through treatment. It can help hugely to chat with others. 

Cancer Types

I hope you might feel reassured now, and pleased don’t feel embarrassed that you are having private treatment-no-one would ever judge you for that, and many members here use private treatment-it’s nothing to be embarrassed about! 

I hope you’ll find the Macmillan community to be a friendly and supportive place to be, and wish you well with your treatment.

Sarah xx

Hi lorrainem  Maggie’s….. like Macmillan are an independent cancer charity and are not connected to the NHS system or records….. so do not have access to medical records….. although a CNS in a hospital will have access to records but these are still private and not to be shared in any way.

I have been dealing with Maggie’s for over 20 years…. My Heamatology CNS personal introduced me to the centre 20 years back…. I have now been diagnosed with Prostate Cancer so Urology did ask if I wanted them to send a referral to Maggie’s but as I was in their system it was not required.

I often sit in our local Maggie’s and talk with folks like who have had private treatment…… when it comes to cancer this is not a barrier….. cancer is cancer wherever you get your treatment.

Maggie’s is there for everyone who navigates a cancer journey….. and just because they are all positioned near or in the grounds of major hospitals does not limit who gets support.

((hugs))

Thank you so much. This is so helpful. So I don’t ever have to tell them that I panicked and gave the NHS consultant name instead of the private oncologist I’m now under? They wont ever communicate with them or look it up?

I had pancreatic cancer so will look into the specifics forums too! Farah you so much for signposting me and reassuring me! Xx

You don’t have to tell them anything you don’t want to. Consultants often work between the private sector and the NHS, but Maggie’s cannot access your records in either of these.You only need to share information that you’re comfortable sharing, and this is kept confidential.

Sarah xx

Thank you! I’d rather just leave it and not “own up” to it. As long as I know they won’t ever get in touch with the NHS pancreatic team without my knowledge then I just want to keep the two separate. And I don’t want to admit to not telling the truth in case they see me in a different light and I so need their support after a stage four diagnosis! Thank you again and I hope you’re doing as well as can be xxx

Please try not to worry about this. I’m so sorry to read of your diagnosis and it’s completely understandable that you need the support Maggie’s can give you. While it’s very likely that the same specialists will be treating patients in the private sector and the NHS-lots of them do-including the consultants I’ve dealt with myself, this is not relevant to the support you need from Maggie’s.

You can simply choose not to tell Maggie’s the details, and they will not contact the NHS to check whether or not you were being entirely truthful.

And thank you-yes, I am currently doing well.

Sarah xx

Thank you. I’m not going to tell them. It does mean they have the wrong oncologist name on file for me but it’s the right department (just I’m private and not NHS) so it’ll be absolutely fine? I’m scared to go back in now but it sounds like it was just for their admin so they give the right support as I’m there often? I’m so glad to hear that! Xx

Please keep going back-it’s really important for you to have this type of support so don’t be scared to return. 

It doesn’t matter to Maggie’s who your specific oncologist is, just like it doesn’t matter to them whether your treatment is private or nhs. You don’t have to tell them anything more than you already have done. They can’t phone up the nhs and ask any questions about you, and as Mike has said, they cannot access NHS records. 

You’re fine to continue to visit Maggie’s as often as you wish-It’s such an excellent resource for so many people.

Sarah xx

Thank you! This is so helpful. So they will not check up that the NHS oncologist I said I was seeing is correct. Is it standard for them to want to know the name of your oncologist and that you have a CNS if you’re going in regularly for support? Thank yiu again!! 

Hi lorrainem 

Maggie’s as an independent charity with no affiliation to the NHS and can not access information and even if they did try….. under GDPR (General Data Protection Regulation) Maggie’s and indeed the NHS would be breaking the law looking for or providing any private information……. which is a rather serious offence.

I have 3 different types of cancer so 3 different departments and Maggie’s have never asked me anything about my Clinical team be it Consultants, CNS etc…

Yes I have given Maggie’s some contact details for myself to be kept informed of what is going on in the centre….. but again this is all voluntary.

All they are interested in is you….. so make good use of the centre as they are amazing.