Couldn’t make it up.

https://phescreening.blog.gov.uk/2018/05/14/help-us-spend-less-on-leaflets/

 

This just popped in to my inbox as I subscribe to the PHE screening blog.

What an absolute farce.

I’m seething. You should be too.

I’ve left a comment on their blog post. Under moderation. Let’s see.

Dear PHE,

How about stopping sending cervical screening invites to the women who have had cervical cancer. It’s a very common moan in survivor circles that these leaflets/invites are upsetting. Many of us have given up trying to get our names taken off the list. Believe us we have tried repeatedly. Do women who have had mastectomies receive the same upsetting mammogram invites?

In fact how about radically overhauling the way in which invites to screening are managed full stop. How much are Capita being paid to manage this? Do you think cutting back on a bit of printing and postage is going to solve the problem?

You may find my latest blog post rather blunt, but it’s very true. It’s damning, but if you read back through you will see that I do have at least some idea of what is going on. I’m happy to help.

https://helloverajuice.wordpress.com/2018/05/28/am-i-deluded/

I’m not sure what data set you and Jo’s are working on but fingertips gives good basic data on screening uptake rates at Primary care level. A representative from Jo’s at a recent meeting was unaware that Primary care could access their own screening data. I’ve sat through presentations at Britain against cancer from PHE data people. So much duplication, I despaired. I think reigning back on a few paper leaflets while the whole screening service is in utter disarray is akin to deckchairs and the Titanic.

I look forward to hearing what great ideas you’ve come up with in Manchester. Maybe you’d like to hear some of mine.

Yours
Julia Tugwell – Yes the same one quoted in your routes to diagnosis press release.

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Am I deluded?

Please read this with the knowledge that I am on a two week wait to see if my throat is ‘sinister’. This makes me slightly more devil may care and gobby than usual. I am in a ‘fuck it’ kind of mood.

This week saw the publication of the screening inequalities strategy.

https://phescreening.blog.gov.uk/2018/05/24/mind-the-gap-phe-screenings-inequalities-strategy-launches-today/
Again I hear ‘we are working in partnership’ ‘We are doing everything we can’

It’s all total bollocks. They aren’t.

I’ve had conversations with Anne Mackie face to face and Jo’s Trust about the , very cost effective, work I do to reduce screening inequalities. Are they interested? No. Is that because I’m deluded and what I do is crap, or is it because it’s a little bit threatening to have someone get off their arse, and be able to influence 50 GP surgeries in one go for the princely sum of £50. £200 for the whole of Devon. I reckon that’s probably half a days salary for them. What do you achieve in half a day? I recently applied for a role at Jo’s. I didn’t really want it. The role looked great but way too much travelling and based in London. I really wanted to see how they responded. They didn’t, at all, well not until I’d sent a DM via twitter to the CEO, then magically a thanks/no thanks email arrived within half an hour. Very poor, very poor indeed. I’m either deluded or crap. One or the other.

The top reason listed for screening inequalities? Poverty. Watch the video.

So how do  people who are on hefty salaries get a handle on that?

‘We have created leaflets’ Because we all know leaflets are REALLY useful and influential. Do they know the rate of illiteracy in the UK?

‘This builds on our work from 2015’ So in 3 years you’ve now just produced the strategy document. 2,700 women have died from cervical cancer since then. How many more will die before the ‘strategy’ filters through?

Just how much in meetings, time and energy did the strategy cost to create. Yet, when I asked for £50 travel expenses when I was invited to speak at a School Nurses training session (they are the ones who deliver the HPV vaccine) I was told no. £50. Just say that again £50. And if you are wondering why I couldn’t stump up my own £50; two words cancer poverty.

Funding isn’t always so hard to come by. I’ve just had travel, accommodation and conference fees paid for the PHE conference in Manchester. (Security, security, we have Julia entering the building)  Way. way more than £50 but hey I guess that money will tick a box to say ‘Patient engagement’ though it will not directly increase screening rates AT ALL. I will no doubt sit through presentation after presentation with highly paid ‘experts’ (Have they ever been diagnosed with cancer due to missing screening appointments?)  telling us how they are doing ‘everything’ How they are ‘working in partnership’ How we ‘work with patients’ How we have data that will inform planning of the strategy to inform the meeting of the action plan that will report on its findings which will create a direction for ‘work’ in 2099.

Ah, that’s better.

 

 

 

 

Quinsy V Cancer

On Monday night I was admitted to hospital with Quinsy. I’d never heard of it before. Very, very painful. A night of IV antibiotics, steroids and fluids and I was sent home on Tuesday morning, feeling like a new woman!

Here’s the rub.

Quinsy is rare in my age group, usually affecting adolescents and young adults. Especially rare in people who do not have a history of tonsil issues (I don’t)

Quinsy is essentially an abscess. They were unable to drain any pus from two needle aspiration attempts.

A differential diagnosis to quinsy is cancer. That is that some head and neck cancers present the same as quinsy.

Head and neck cancers are often caused by HPV.

So guess where my heads at.

Originally given a follow up appointment for 15th June. Rang consultants secretary today and she offered me an appointment for 6th June, my poor long suffering son’s birthday. I told her I couldn’t do that and went for the 13th of June. We’ve discussed it tonight and my son says I need to go on the 6th. So hopefully they will still have a space when I call tomorrow.

We are so fucking done with this nonsense.

 

 

Symptoms

Below is a link to my blog post for Eve Appeal – an updated/amended/extended version of my previous post here called ‘It’s Killing us’

I added my symptoms to the piece as it was going to be used to help raise awareness of cervical cancer symptoms. It struck me that I had never written about them before. Strange.

Stinky discharge, odd periods, and post coital bleeding aren’t the most acceptable conversation topics but talking about them may save your life. I spoke to two people about my symptoms prior to diagnosis. One was my best friend and one was my Mum. Neither knew the symptoms of cervical cancer then, nor did I.  They colluded with my normalisation of them. If they had known the symptoms I’m sure they would of had me in front of a GP quicker than you can say ‘manky fanny’

https://eveappeal.org.uk/blog/gynae-cancers-taboos-killing-us/

 

 

Living with and beyond cancer

50% of people diagnosed with cancer will now survive for 5 years or more. That means that there are a lot of people living with the after effects of a cancer diagnosis and treatment. This is very expensive for the NHS and unsustainable in it’s current model.

Yesterday I was at a meeting in London working on the almost final stage of a process to  get over 3,500 questions submitted by patients, carers and health professionals down to a top 10 that will be open for cancer charity funders to hopefully take on and try and answer.

The questions were varied, obviously, but many had a common theme which was around mental health aspects rather than physical health. The mental aspects of cancer can never be underestimated. I still hang out on some online support groups and the fear, anxiety, stress and hopelessness of the newly diagnosed is often shared. I can empathise totally because I’ve been there. Scared, totally shit scared, that I was going to die. It’s a peculiar place to be. Now with the benefit of hindsight, time and a little detachment I can offer some support to those living in that dark place, the darkest place usually being straight after diagnosis before a treatment plan has been decided. Another key point where mental health can take a nose dive is when active treatment stops and you are cast away from the care of your medical team to ‘go and get on with your life’. These feelings are common over all cancer types. Questions around follow up, ongoing care, rehabilitation were other common themes.

What struck me yesterday is that however much support charities offer, and there were reps from two of the ‘big boys’ there yesterday, most support is offered peer to peer, online, on instant forums such as Facebook. The big and not so big boys offer online forum support but this is, in my experience, like waiting at a rural bus stop, rather than waiting for a train at Waterloo. They have many rules, of what you can and can’t post, you have to log in with passwords and create accounts, therefore if you are not actually there looking for support you are unlikely to pop in to be able to offer it.

So who runs these Facebook groups? In my experience they are run by unpaid, highly knowledgeable survivors who probably know more about their specific cancers than any non medically trained charity worker. They are the unsung heroes of the support world.

You know who you are.

Wouldn’t it be amazing if the big boys of cancer support paid these people? Gave them grants to do the work that they know to be needed? Rather than creating yet ANOTHER expensive report or booklet that doesn’t filter through to clinicians let alone patients. Many of the questions from the original survey had already been answered, at huge cost, yet many patients and clinicians were still asking them. Something is going wrong somewhere.

There were 5 patient reps at the meeting yesterday, along with big boy charity reps, NHSEngland, and clinicians. We left the meeting pleading with them to make sure that if answers to the final questions are found could they PLEASE be in a format that creates actual change and action. Or give us the cash and we’ll get on with it ourselves!

 

 

 

Work?

DcWC2TlWsAA8m53Since this time last week I’ve worked 25 hours at National Minimum Wage as a barmaid and a shop assistant. I’ve found myself using Makaton for please and a ‘teacher look’  to a rude customer. Manners maketh the man and all that.

I’ve dealt with government agencies  who are incapable of acting on information the first, second or third time they receive it.

I’ve also attended and contributed to a major launch campaign in London and a workshop to help shape patient information around Proton Beam Therapy in Manchester. I’ve networked and followed up on opportunities that these events uncovered.

I’ve had a drink with a friend. I’ve parented and daughtered. I’ve dog walked, gardened. taxied, allotmented, cooked, cleaned, laundered and tidied (a bit!)

I’ve spent a lot of time working on reports for various PPI (Public and Patient Involvement) related activities, filling in expenses forms, reading reports, replying to emails and organising upcoming events.

I’ve received a call from the hospital asking me to, finally, come in for an EUA on my arse. I need to make a GP appointment to discuss this.

I’ve supported newly diagnosed women on line.

My son asked me, while I was sat at the laptop, what I was doing. I replied ‘Work’

His reply was spot on.

‘Well it won’t pay the rent’