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

 

 

 

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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.

 

 

 

Morph

I’m aware this blog has morphed, expanded and developed into far more than my experiences of cancer. I don’t think its a bad thing. But here is still where I come back to record my news.

Anyway, while at conference I received, somewhat ironically, a phone call from the hospital to book me in for my EUA (examination under anaesthetic) I was beginning to wonder when I would be offered a date. Its been a very long time coming, and even though I attended a pre op at least a month ago I’ve not heard anything.

They have offered me 7th December. I’ve told them that I don’t want that. I can’t face another Christmas being overshadowed by hospitals and waiting for results. I think that’s fair enough. I will remain on the waiting list and they will offer me an appointment in the new year. ‘My’ GP (I’ve never met them before) wants to see me for a med review in a couple of weeks and I think I’ll have a good chat with him (or possibly her I have no idea) about it then.

There is an increased risk that I will develop anal cancer. Equally there is more chance statistically that I won’t. It’s hard to spot and both precancerous and cancerous conditions are hard to treat. The side effects of treatment are pretty grim. I think I’ll just bumble along with the rest of the general population who don’t get their arse checked and lumps bitten out of it on a regular basis. Especially not weeks before Christmas.

 

 

Liverpool Illustrated.

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I’m sat here on the sofa, with a million thoughts buzzing round my head, emails to answer and to write, calls to make, washing to do! Its the first time I’ve had the space, after a tedious journey from Liverpool, a day’s work followed by a mercy dash last night to Surrey and back. Dog needs a walk, I need a bath, but I need to empty my head a bit.

The last day of conference was a little frustrating. The morning session was jam packed with things I would of liked to have gone to, it was a tricky choice to make. But I went to a session on PROMs that all important measure of the outcomes of cancer treatment on patients. Cancer treatment for anyone is rarely a walk in the park. Physically or mentally.

We need to get the focus put firmly on research into how we can make the PROMs more positive. Before that, we need for patients to have access to accurate, relevant and accesible outcomes for the treatment they are about to receive. I’m not keen on the word consumer but I’ll use it to say that this is all about consumer choice. If you are 80 do you want to go through gruelling treatment which will possibly render your last days a misery or do you want to know what palliative care is available to you. I’ve seen 3 close people die of cancer. There comes a time when ‘the drugs don’t work’ and there should be more information available to make that choice.

Lots of contacts made around this issue and lots of things to follow up on.

The  NCRI consumer forum made it into the Daily Mail. Look I know, not my first choice of rag but you take publicity where you can.

http://www.dailymail.co.uk/news/article-5064405/Pot-luck-sees-patients-miss-cancer-trials.html

Cervical cancer and HPV vaccination made Radio 2 headline news today…

http://www.bbc.co.uk/news/health-41929267

The best bits of conference for me were the intangible meetings and conversations from the bloke manning the escalators, the cab drivers, to the shared umbrella 3 minute conversation with an expert in cancer metabolism. Or the conversation with the devastatingly handsome bowel surgeon from Greece on a walk back from ‘town’.

What a highly skilled, intelligent, passionate group of people posses between them is phenomenal. The question for me lies in where do we focus our energy and most importantly our funds. It’s our money after all.

Watch this space.