Here we go again

So following my bleed on Tuesday night I’m back in Bath on Wednesday for a ‘look see’.

You really couldn’t make it up.

So over this nonsense now.

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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.

 

 

 

 

 

 

 

 

NCRI2017 Liverpool 7.11.17

Here are today’s key points.

Proton beam therapy is AMAZING. Here’s a quick layman’s guide. 50% of all cancers, are treated by surgery 40% by radio therapy, and 20 % by chemo. That adds up to more than 100% because some are used in combination. This means that radiotherapy is a real work horse in cancer treatment. The trouble with radiotherapy is that it is rather like a cannon ball. It, hopefully, obliterates the tumour but damages healthy tissue on the way in, on the way out, and around the tumour. This is why so many cervical cancer patients who have received RT have ongoing bowel and bladder problems, and sexual functioning problems due to scar tissue in their vaginas. When brain tumours are blasted it doesn’t take a huge amount of imagination to realise that serious damage can be done along with potential curative benefit.

Proton beam therapy isn’t thought to be any more effective at blasted the tumour, but it is FAR more accurate. The beam can go in causing minimum damage, blasts when it hits the tumour, then leave the body again with minimal damage. More like a bullet that only explodes when it hits it target; the tumour.

One massive problem. The machines are hugely expensive. Similar in price to a fighter jet. Choices, choices!

The next session was about lifestyle. Smoking and being fat are bad for you apparently. I smoke and I’m fat. That session made me want to have a cigarette and eat cake. I don’t think that would of been her desired intention.

Last session of the day was about Patient reported outcomes. What patients report as symptoms and outcomes of their treatment. However the clinicians decide what subjects the patients should report on! I was on top form, said some slightly contentious things, which led to a few rounds of applause, and an invite from the Professor to join him for some upcoming work in the West country. Bingo!

The evening found us at the Maritime Museum for a drinks reception (my idea of hell) and then a FANTASTIC and I mean FANTASTIC production by teenage and young adults about their experiences of cancer. One of the experiences recounted was of a cervical cancer patient. Nearly lost it. Didn’t.

‘There is a light: BRIGHTLIGHT theatre performance during the evening. An original performance inspired by the findings of BRIGHTLIGHT, the first major study of its kind, There is a Light presents young patients’ perspectives on specialist cancer care in England. Directed by award-winning artist Adura Onashile the show is developed in collaboration with Brian Lobel, BRIGHTLIGHT’s researchers, youth board and young people with personal experience of cancer.’

So many conversations with so many interesting people, so much information, so many ideas and plans to formulate!

 

 

 

NCRI2017 Liverpool 6.11.17

You can’t help how you feel and I’m feeling frustrated. I was frustrated before I came here about numerous things. I feel this post may turn into bit of a rant so if you only want hearts and flowers don’t read on.

A few months ago I was asked, on the back of the training I delivered, to speak to school nurses about HPV at one of their training events. I was very up for doing this. It would of involved a 150 mile round trip, a missed day of paid work, plus extra time to plan and prepare what I would deliver. I didn’t want paying, I didn’t want reimbursement for lost pay, I just wanted travel expenses so I wasn’t further out of pocket. I contacted two very relevant charities, both of whom I had done work for before, and neither could pay me the, top estimate, £50 mileage allowance. So keen was I to deliver the training I agreed to go for free, out of my own pocket. Unfortunately I didn’t go in the end as it clashed with a job interview.

Also a few months ago I was interviewed by another charity, in depth, over the phone. I told my story, which as you know is fairly intimate, with the intention of it being used to raise awareness during Gynae cancer awareness month. I was told that I would be contacted with a copy of the story and that it would be used for awareness purposes. I did not hear from that charity again except for a general mass email a couple of days ago about a fundraising event. I’ve put them straight.

More recently it was announced that a charity had asked another charity to produce lesson plans for secondary age pupils around HPV. I spoke to the head of education at the charity that had produced the lesson plans offering my services, for free, to go into schools and deliver them. Apparently they aren’t going to be delivered, they are going to be available to schools in a pack. Any teacher knows that 99.9% of lesson plans produced by organisations and never delivered and sit in dusty files on a shelf in the staff room.

Today I’ve heard of yet more clever stuff being researched, by experts flown in from all over the world. I’ve sat with people who like myself have had their accommodation, travel and conference attendance paid for by cancer charities and research institutes. I hope we are all offering value for money. I reckon my £50 petrol money to talk to the school nurses would have yielded a better return pound for pound.

I spoke to the Director of the CRUK Institute in Manchester. I really will talk to anyone! I told him that vast sums of money being spent on research I’d heard about earlier that adds a month to someones life might not be the best use of funds, maybe more funds should be spent on mental health services for survivors, support for primary care to deal with post treatment side effects, for more patient involvement. Real patient involvement not ‘tick box’ tokenism. I do say it how I see it.

Should cancer research funds be all about finding a cure, or with more and more people surviving cancer should there be more money spent on how to support people living beyond cancer and into education into how to prevent it. Should the site specific cancer charities be asking patients what WE want their funds to be spent on? Or should they make the decisions for us?