Response to peptition

[Rachael47]

I'm sure many of us signed to petition to Parliament asking for money for the diagnosis and treatment of OC. I received the response below. Not sure it will do me any good and it will doubtless not be 'new' money, The word 'stakeholders' is alarming, pt probably means we will be in the hands of Branson - who can't even make the trains run on time!

petition.parliament.uk/peti...

[Yoshbosh]

That is a totally disappointing, generic and lame-assed response to a very specific and clear petition 😡 I’m not surprised, but I am disgusted. I could pick the response apart line by line, but I’d be wasting my time. Thanks for flagging it, Rachael - the response was in my ‘junk’ mail folder, so I hadn’t seen it yet.

Vicki x

[Katmal-UK in reply to Yoshbosh]

Totally agree Vicki, read it twice this morning and it's the usual political waffle....

[koffeekat99]

Hi

I read the DoH response. Perhaps I’ve read too many public sector statements but I didnt think this one was too bad.

They have actually made a few comments specific to OC. They have said they’re looking at feasibility of the OC data audit. It may not commit to the audit and it may have a disappointing timeframe but it is probably in line with their procedures.

There will be lots of petitions hitting 10k signatures that need a response, particularly given the increased use of online petitions. So the response could be a lot worse.

The use of the term ‘stakeholders’ in the public sector is not necessarily as sinister as it sounds. It’s anyone with a ‘stake’ in the issue. So it can include patients, health providers, CCGs, researchers, etc. Technically the taxpayer is a stakeholder so you could include anyone who has ever paid tax in the definition!

I’m not saying that they’re not looking at private providers for this work, just that the use of the term ‘stakeholder’ does not in itself suggest a private company.

It does sound like it’s being considered along with other possible data audits. Therefore I’d say it’s a case of keeping this one in the limelight. So getting some support from other angles, e.g. the ‘stakeholders’ who will get a say, getting MPs interested, etc.

The response given is certainly no worse than expected. The DoH will be lobbied from all angles for a whole range of issues so they won’t commit too much to anyone at this point.

[Yoshbosh in reply to koffeekat99]

I hear you, Katfish. There are a few references specifically to OC, but the majority of the response is about “cancer” of which there are more than 200 different types of disease. It wouldn’t have been too hard to make the response more tailored to OC, whilst still still giving us the same brush off message.

We also hadn’t hit the 6 month September deadline, and I hadn’t finished campaigning for signatures!! I wanted to drum up a few more hundred, and I know other ladies were doing the same in their areas - more stakeholder buy-in!

Anyway, absolutely not a dig at your reply here, and I thank you for putting over a different perspective. I’m just frustrated by a wishy-washy response, at what is a highly emotive topic for me, for all of us.

Xxx

[koffeekat99 in reply to Yoshbosh]

Hi Yoshbosh

Yes I was just offering a different interpretation. I do understand why the response is frustrating though and similarly was not aiming to dismiss anyone’s response to the statement.

The petition is still open and now gives a target of 100k signatures. So though there is a response (because it hit 10k) there is still reason to continue the petition part of the campaign.

Hopefully the stakeholders would include organisations like Ovacome who would get contact with decision makers to progress discussions.

I have seen government responses to other petitions that hit 10k which were a couple of generic sentences that could have been about anything. The mention of ‘ovarian cancer’ at any point in their response here is comparatively remarkable. I think perhaps I have such very low expectations of gov depts communicating that I’m easily appeased!!!

[Flamingobeef18 in reply to koffeekat99]

Thank you for your response Katfish. I understand very much where Yoshbosh is coming from but it is very interesting to read your take on it. It really puts it into context. Good to think it is better than I initially thought.

[Hidden in reply to Flamingobeef18]

Yes, I too thought it was slightly better than some of the fobbing off replies I've seen to others ones.

[Howick01]

At least they responded but how are we going to get 100,000 signatures?

[Yoshbosh in reply to Howick01]

If you saw how many times I’ve shared it, and how many different ways of pitching it I have tried, you’d understand why I’m so disappointed. I get that it’s not a cause that resonates with everyone, but it’s not asking for millions to be spent, just the clinical audit to understand why we have low survival rates compared to most of Europe and many developing countries.

In my local constituency, 55 people have signed...I have more that 55 Facebook friends who live in the same constituency as me, so not even all my “friends” have signed it, and that’s despite knowing someone who has the disease. It’s a bit of a battle!

[Howick01 in reply to Yoshbosh]

I know how you feel as I felt I was flogging a dead horse while trying to raise awareness!

[BeeWild]

Thank you for flagging this up! I agree with Vicki what a vague, generic and non specific response and what waffle about data comparison collection techniques skewing the OC survival results for the U.K. !!! This has made me angry 😡

They need to sit up and smell the coffee and improve things especially diagnosis and access to initial investigations!! There is no wriggling out of the fact that we have the worse record in Europe as far as OC is concerned!

And I know the NHS purse is not a never ending pot of money but government need to pressure the drug companies into putting patients before profits so some of the treatments which can help at any stage are available at a reasonable cost to the nhs and women like Lily-Anne don’t need to fundraise themselves to get drugs like avastin!

Sorry rant over xx