Thanks for your reply grantus.

Missing an SCC is obviously not good, but doing so is very rarely going to be fatal. You can miss them and still get away with it- they’ll continue to grow, patients come back, and the cancers don’t do much in the interim as a rule. They are sometimes tricky to diagnose too. “In a dying woman” – that’d make me think of something else, in fact I’d probably ignore what I thought might be a SCC “in a dying woman” as I wouldn’t have thought an SCC would make someone that unwell. I’d be more concerned about picking up stuff like endocarditis in an immunocompromised person.

Missing a malignant melanoma really is a completely different ball game, as SCCs are nowhere near as nasty as MMs. MMs are, as you’re all too aware, horrific things.

I don’t know what the renal consultant was thinking, perhaps that it was an abscess? Who knows. Sticking a needle in a lump is not necessarily a bad thing, not doing anything about it when nothing comes out probably is.

There’s a big move in healthcare to bring in checklists (see Atul Gawande’s book The Checklist Manifesto) and to my mind that’s what you need – for transplant patients at risk, skin cancer education needs to be a point on the list. Education for health professionals? I’m very surprised your partner’s unit didn’t know of the increased risk.

It’s clearly your decision whether or not to sue grantus and that those you mention have failed you is awful. I hate insurers (I fill in the forms and watch them wriggle), the govt is sometimes there but often not when you’d expect it to be, and the banks, well…

My point was only that suing won’t help you achieve the outcome you stated you want – the focus will shift from accepting fault and making changes to defending a negligence claim. To prove a negligence claim you’ve got to prove 1. duty of care (easy), 2. breach of duty of care (not so easy), 3. breach of duty of care led to harm (hard).

They did know of the higher risk. Their actions show me they have no idea of the extent of the risk. What was perhaps consoling me and driving me a bit with this campaign up to yesterday was that it was endemic in the NHS but over the past 24 hours it is obvious that this is not the case and many other authorities/trusts are well and truly on the ball with this issue (although i’ve also had many messages from people who are, or know, transplant patients and who let me know they also had no idea. Other people on immuno suppressant meds for other conditions have also said they had no idea of a cancer risk with taking the medication long term. Equally, one or two have said their doctors have drummed into them just how careful they need to be in the sun while on the medication. It’s a complete lottery. Sharon got shit numbers)

Personally, I was convinced she had blood poisoning – that’s how ill she was but it is hard to convey how quickly she deteriorated. I am not a medical professional and my diagnosis was wrong however out of the three doctors that week it seems I was the only one who thought she looked seriously ill. It is apparent as well that the renal doc thought it was an abscess which is what depresses me.

The whole thing is a complete and utter nightmare. What makes it so difficult is late last night when I heard about the person who is treated in Edinburgh and who gets regular skin checks

thanks mate – I don’t want to sue but I feel like complaining – if that makes sense?

I know all these doctors as I met them on many occasions and they are really genuine and they cared 100% about what happened to Sharon so part of me feels bad for what they will be feeling because they will know inside even if they don’t want to admit it that they let her down badly but at least they can still go home and see their kids at the end of the day.

I’m rambling now. Will go to bed I think. Thanks mate

It does make sense.

I’m very sorry for your, and your children’s loss.

EDIT: this paper might help your cause, and though it’s 11 years old it does highlight the problems you’ve identified about regional variation. There’s a more recent follow up to the original too, which suggests that things are getting better but still aren’t there yet. It might be worth emailing the author of the paper (email at top of page) for any suggestions they might have?

In reply to Bonjve, yeah that’s why I mentioned “kind of appropriate”. I was just highlighting how you can in rare cases get atypical cancers, the kinds that you read about in published clinical case studies.

I’d also agree that suing probably isn’t the way forward, however I understand that the OP is angry. I think that he probably needs a few more answers – from my experience some health professionals have been very good at blocking the answers that patients or families have needed to move on. Lawyers seem to give them a kick up the arse.

Your posts have been excellent by the way Bonjve, I’m learning new things everyday. It’s great to see people giving the best help they can to those in these situations. I’m trawling through BMJ and NCBI at the moment trying to find something that might be useful.

Just to clear things up was this ear lesion an SCC or a Melanoma, you guys are talking about it being an SCC – Pathology are saying it’s a Melanoma. Someone is wrong.

Pathology say.melanoma.

It did not.look like any melanoma i.can see on google images.
She did not have a.mole where it.formed
when i googles.scc on friday i.sent the.closest.pic to the infections consultant who treated her and hisemail repky was.”wow! The similarities are incredible. It took me a.few.moments to realisethat was.not sharon’sear i was looking at”.

Thank you to everyone not only forhe sincerity ine replies but also bwaarp and bonjye for the layman’s explanations of some of this scientific.information. I am very grateful.

As someone who has a reduced immune system because of medication the advice you give is invaluable. Thank you.
On a personal note I have the utmost admiration and respect for yourself for posting.
Sincere condolonces for your loss.

thanks matey. equally, you’ve probably no idea how much comments like yours help not just me but the rest of the family as i’m relaying all this to Sharon’s dad as well.

Take care.

Grantus, thanks for posting the info.
As I said on your other thread, I’ve gone through (sort of) similar recently and I just want to say I hope you are holding up okay and I have been thinking about you a fair bit since your original thread.

I can’t believe DWP are denying you the bereavement benefits – did you at least qualify for the one off payment? I can’t get the regular payment as its means tested, but I still qualified for the one off sum.
Also, are you aware you may be able to get a reduction in your council tax and your power suppliers may be able to give you a better tariff if you ring them and just ask ( I did with my electricity but not the gas)
And if you ever want to just chat do please feel free to email me though, as I also found, there is so much support here and always someone to give you a bit of a prop up just when you need it.

Just to resurrect this old thread and give you an update.

I went with my partner’s Dad to the Scottish Parliament yesterday to give evidence to the Public Petitions Committee after I started a petition and it was lodged with around 900 online signatures. We also got around 3000 more signatures the old-fashioned way.

I was a bit under-prepared however we got the message across and the petitions committee agreed unanimously to take up the petition and move it forward, writing to all Health Boards, the BMA and the Melanoma Society for their initial responses. I will then get the opportunity to respond to their responses in around 8 weeks time.

The link below shows a recording of proceedings. Coincidentally, the first petitioners on the day were the Editor and Health Correspondent of the Glasgow Evening Times newspaper who had lodged a petition regarding organ donation registration.

My presentation comes in around 45 minutes on the link below.

Thanks again for the advice and support from three months ago. The papers bonjye linked to have been particularly helpful

http://www.scottish.parliament.uk/newsandmediacentre/41430.aspx

Horrible, sorry for your loss and good on you for having the guts to share this with others. This will, im sure help people in the future.