Blog Post For The Eve Appeal

The Eve Appeal asked me to write a piece on HPV and cervical cancer for cervical cancer prevention week. They published it today. Have a read. It’s pretty good!

https://eveappeal.org.uk/blog/realities-hpv-links-cervical-cancer/

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Cervical Cancer Prevention Week 2018

Hello Folks,

It’s that time of year again. The time when the everyone is encouraged to go for their smear test. As a long term non attender (look where that got me!) I am especially passionate about spreading the message in whatever small way I can.

I made contact with another local survivor late last week and had the pleasure of meeting her today at Musgrove Hospital, Taunton, where oncology staff  had taken the initiative and set up an information stall next to their onsite M&S store. The highlight of the day for me was the teaching manikin! I performed my first smear test! Didn’t think today when I woke up I would be asking strangers ‘Would you like to come and have a go at doing a smear test?’ Unfortunately technology malfunction means the video of my attempt is not available so you’ll have to have a picture of a bagel and a  washing up brush instead.

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I’ve done these kinds of info stands before. You always meet at least one woman who is overdue. No one can force anyone to go of course, but explaining how not going got me in a whole heap of trouble, certainly makes them have a rethink. The reasons for non attendance are complex, varied and individual but reasons are heard over and over again. Sexual abuse, previous bad experience at a smear test, traumatic birth experiences, poor body image, difficulty in making appointments, not wanting it done by ‘their’ GP. I get the reasons. I get them all. Maybe that is what makes me good at talking to these ladies. At least 3 women today said they would go and book their smears. Not a bad lunchtimes work.

I spoke to a group of midwives. They do not receive any training about cervical cancer. The majority of them said they would not feel confident in identifying it. That’s bonkers. Midwives get up close and personal with cervixes more than most! Time for that to change surely.

So you know what to do. I ask you every year. Ask your loved ones ‘Are you up to date with your smear?’ It could just save their life.

 

 

 

Public Health England Press Release.

It’s January, this means that it’s Cervical cancer month with prevention week running from 22nd-28th January.

A few weeks ago I was asked to contribute my route to diagnosis story to Public Health England. The route in which someone is diagnosed with cancer can have a wide reaching impact on their long term survival prospects. Someone presenting at A and E with acute symptoms will have a far worse prognosis statistically than someone whose cancer has been picked up by screening.

The earlier a cancer is diagnosed the better the outcome but also the cheaper the treatment. It is imperative that more people are diagnosed earlier. One of the best ways to do this is to educate the general population on symptoms. The ‘Be clear on Cancer’ adverts are an example of this.

Some cancers however can be found by screening. Bowel, breast and cervical all have a screening programme to detect cancer or early abnormalities that may progress to cancer. You all know the drill by now. Just do it.

Below is the link to the Public Health England press release. I like the fact my name is in the same piece as Dr Jem Rashbass Cancer lead at PHE, Health Minister Steve Brine, and CRUK CEO Sir Harpal Kumar. Maybe I’ll write to all three and ask for funding to go and spread the word!

https://www.gov.uk/government/news/world-leading-cancer-dataset-shows-improvements-in-diagnosis

 

 

 

4th Cancerversary

Exactly what it says on the tin.

An update from my visit to Bath last week. The bottom line is that it’s not cancer that is causing me to bleed. They don’t know why I am, they say I shouldn’t be, but it’s not ‘sinister’ Didn’t leave with a spring in my step. In fact left with the feeling that if I ever bleed again I probably wouldn’t bother letting them know. I cried, I hate crying. It showed me there are plenty of tears still in me. I wonder when they will all come out.

There’s nothing like someone examining you to really drill home how much your body has changed.  I think it hit home quite hard. The advantage of not being faced every day in the mirror with what has been taken away has the disadvantage of generally being allowed to live in denial to a certain extent of exactly what has happened.

Certainly a ‘challenging’ appointment, mentally at least. I apologise to the ‘mothering’  nurse who tried to distract me with questions about the weather. I think my general demeanour  and monosyllabic replies communicated that I did not give a shit whether it had snowed at the weekend or not.

So yet again I’m supposed to be relieved, happy, overjoyed with the news. I’m not. I’m processing the physical and mental outcome of a hideous intimate examination with no clear answers.

Like I say, next time it happens, if indeed it does, I think I’ll keep it to myself.

 

 

 

 

Cancer Strategy

Yesterday I attended the All Party Parliamentary Group on Cancer’s Conference in London.

Very interesting day and great to hear HPV and Cervical cancer mentioned in both Jon Ashworth’s and Jeremy Hunt’s speeches. Of course both are political at the moment as the govt decides if it will roll out HPV vaccination for boys and just how much it can cut back on cervical screening services post vax. As always its all about the money.

Various speakers reinforced the idea that symptom awareness is the key to earlier diagnosis. Earlier diagnosis results in better outcomes and cheaper treatment pathways. Who better to educate about symptoms than survivors?

I sat through a talk which sold itself on being about building alliances with patients (Patient still seemed to be the ‘poor relation’) I sat through another talk about Big Data. Lots of acronyms of different places people could find data on all sorts of things. SO much duplication. I listened to the head of NHE, the body in charge of making sure that the NHS has enough skilled staff to future proof itself. She was due to present a report of the state of staffing  and skills a year ago, then extended to this December. Guess what? No report. Just how much money is being wasted by writing reports. studies, attending and putting on conferences??? If the NHS was in a really healthy financial position it would be ok. But it’s not. It’s on it’s knees. WILL YOU PLEASE ALL STOP WASTING MY MONEY.

There is 200 million available to NHS trusts to transform cancer care. Its a big amount of money but not huge when you compare it to CRUK’s annual donations. Here’s the rub though. Only trusts currently achieving their 62 day wait target can unlock their money. The 62 day wait is the time from urgent GP referral to treatment starting. That sounds like a long time, but you’ve got to have your initial hospital appointment, scans, biopsies, treatment plans etc before you start treatment. If they don’t reach their target no money is released.

Jeremy wants to see far more earlier diagnosis. Don’t we all. He was incredibly proud of the ‘scanners in the supermarket’  pilot where people can be screened for lung cancer at their supermarket car park. But can you see the problem here? All these patients end up not being dealt with by the alliances, the networks. the dashboards, the data sets, the conference speakers, the charity CEO’s, the politicians, the strategic transformation plan managers, the studies, the researchers. They get dealt with by the NHS frontline. That is underfunded, overworked, underpaid, overstretched and full of unfilled vacancies.

It’s like trying to increase the productivity of a bakery by planning for the wheat, strategising on the flour, advising on the yeast, collecting data on the crust and forgetting to buy some more ovens.

How, just how, do these people get to be in these positions. Put the Doctors, nurses and patients in charge. Forget the charities who have also fallen into this trap of conferencing, strategising, reporting, spending, duplicating. Take all that ‘Cancer Money’ and put it where is matters, run by people who know what is needed and care.

I am a cancer patient. I know how the system works. I know what I need. I know what I don’t.

Last night I had a very unexpected bleed. (Yep my annual Christmas fuck up) Right now I don’t need reports, studies, politicians, charities. I need my nurse. Thank god she is still there, getting paid less than 90% of the people there yesterday I bet.

 

 

 

 

 

 

 

 

Fair ?

When I used to supply teach I’d write ‘Miss Tugwell-Firm but fair’ on the whiteboard to greet the class when they got in.

It usually kick-started a conversation on how we could reach an agreed version of what we thought constituted  firm and fair.

I’ve just attended my first meeting with the Gynae Clinical Studies group. I think I was firm and fair when I stated that one gynae cancer getting 26x the funding of another was certainly not fair.