My absence and lack of recent blog post has purely been a positive distraction. I have this great new job where I can connect the dots – where before I could never mention “Cancer” at work, where none of my colleagues knew I have “Melanoma”, and going back to a previous job I would have to take holiday days just to attend hospital appointments – now it isn’t like that & I have been really enjoying the new challenge ahead.

So much so I even had a major milestone hospital appointment that I didn’t really shout from the rooftops.

I think it was partly because due to various holiday / staff juggle issues at Oxford my appointment was moved not just once but 3 times…so this appointment happened later than originally planned. Not that I minded…it was effectively the 3 year sign off.

3 years from the point when I moved my care to Oxford…3 years from the point when the words Clinical Trial & Sentinel Lymph Node Surgery entered my world. Miraculously….3 years on & I remain NED – I am healthy – I couldn’t be luckier. I come across so many other patients who’s rollercoasters also started in 2013, and some of them have processed to stage 4 and have serious battles to fight.

One of the things I love about my care at Oxford is that there is a closeness to it…I don’t just feel like yet another patient. I was seen once again by the wonderful lady I think of as an angel – Dr Valentine Macauly – who was the first face I saw at Oxford & the lady who pushed to get me transferred & into the running for a clinical trial.

Patients like seeing familiar faces – people who remember us from one appointment to another without having to obviously consult the notes whilst we are in the room. Yes, we know the oncologists see so many patients that they can’t possibly be expected to remember us all…but we remember every tiny moment of every single appointment & it gives us reassurance to not feel like virtual stalkers!

Valentine hadn’t been able to attend the conference but had heard all about it so we talked all things Melanoma Patient Conference for a while.

We talked about the tough morning at the Churchill hospital that day with newly diagnosed patients that were MUCH younger than me & how they are seeing so many more sub-25 year old patients now.

We then talked about my little people. You see…moles in my family are genetic….but then so potentially is the Braf+ mutation that is present in both my Melanoma & the colon issues. I see tiny dots…freckles…maybe even baby moles appear on the little people’s skin & my anxiety levels surge through the roof. I know that just because I have Melanoma doesn’t mean they will…but it is a worry & I don’t want anything to get missed.

The papers this week have been covering the shocking & disgusting fact that GP’s are failing to refer patients with signs of Skin Cancer and as a result early diagnosis (which is the only potential cure) is being failed for 1 in 3 patients. NICE have addressed this as a concern. Their  report says that less than 30% of Melanoma’s were identified at GP level and almost 60% were diagnosed when the patient was already in the system after referral for suspected cancer.

But here is the issue. If a GP suddenly refer’s every patient with an odd looking mole the failings in effective care simply move further up the chain…there aren’t enough dermatologists to suddenly start seeing twice as many patients. Waiting times would get longer. You can’t pass the buck & expect it all to get fixed by magic.

I wasn’t failed by my GP’s (well not initially)….in my case they did refer me to the local hospital dermatology unit…where over the next 10 – 11 months I was seen by 4 different dermatologists including the head of the department. None spotted my Melanoma & none of them said…”tell you what it looks suspicious enough that we will take it off anyway as a precaution”.

There simply wasn’t adequate training on identifying Melanoma. More concerning is that there were budget decisions made based upon the surgical removal of 1 mole…which since became a much more expensive issue to fix.

Nobody ever wants to take responsibility. There are brilliant GP’s out there – just as there are brilliant Dermatologists. This shouldn’t be an exercise in point the finger. This isn’t a witch hunt – at least it shouldn’t be, but perhaps a few of newspaper stories are more interested in selling a paper than reporting facts & dealing with how this situation can actually be resolved.

When I organised the conference I tried to get a senior GP to attend, someone from the college of GP’s, a GP trainer…someone from the start of the patient journey. None would come. The GP who did attend was the Irish GP Dr Ciara Kelly, who I had come across from a brilliant article she had written in the Independent on skin cancer rates in Ireland. She spoke (watch her talk) about GP’s needing to create a two-way relationship, a mutual contract in honest, open provision of care.

The key is training & learning. For GPs & Dermatologists & for patients too.

Put money in at the bottom of the chain & the rollercoaster run’s smoother, there are less bumps along the way, less failings & in the end as a result the cost to the NHS would be significantly less too.

If the NHS ran frequent GP & Dermatology training sessions – refresher courses – then the key things that they need to look out for would be fresh in their minds.

If the NHS spent more on national Melanoma & Skin Cancer awareness campaigns, then the public too would be more aware of the risks & the consequences of sun damage and importance of getting Moles checked quickly.

No system is perfect – but there are things that can be improved on.

At the conference patients were asked to write down wish lists of things they wanted to see change for Melanoma & Skin Cancer in the UK. National skin cancer awareness campaign & “or my GP / doctor to take me seriously with concerns about Moles” were on the list more than once. All it would take would be a skin cancer poster in every GP’s surgery in the country…not too much to ask for surely!?

I can remember standing in the GP’s office 11 months after first pointing out my mole to them & then the subsequent dermatologists that looked at it & pleading “take this off”. I would rather a scar that a lifetime of worry…or no life at all.

My children will be looked after. My focus on Melanoma remains key in my heart. What happened to me should NOT happen to other’s. Instead of shouting loudly at someone who didn’t do their job properly…let’s say how it could be done better & give them to tools to do it right in the first place.