Our Trip to Westminster

Hi to all,
Well here goes. We traveled to London on Tuesday as it takes hours to get anywhere from Cornwall. As I used to work for Whitbreads I have a discount card so we stayed in the Premier Inn at County Hall for 2 nights. Spent Wednesday day walking and shopping hubby treated me to some lovely gifts I had my very expensive Jan Jansen shoes on but my feet were killing me so hubby had to buy me some flip flops!
We spent Wednesday evening at Trafalgar Theatre watching a play - Fat Pig which was really funny and well recommended, bit sad though.

Thursday. After a full English we set off for Westminster. I had my shoes in a bag as I had a massive blister on my foot so I was wearing my FLIP FLOPS. I had a red dress and scarf on head tied Hilda Ogden style. Hubby looked immaculate in suit and posh brogues, ah well!

It was really strange - only four weeks ago we were tourists taking a photos of my daughter and her hubby just outside the gates of Parliament. Never did we think we would be back here and walking through them.

It is a very grand building inside as well as out. After all the checks we were running a few minutes late and they had already started so we sat just inside the door. The chief executive of Cancer Research UK was chairing the meeting and number of MPs and Peers were present. We were told that this was not a political debate and no decision would be made so we could express ourselves freely. There were about 50 or so people. First to speak were the MPs, some were for and some were against co-payment and all made very valid points. Then it was the turn of someone from Unison and the head of Social Services then Halliwells’ solicitor Melissa Worth, and the director of Doctors for Reform. I could feel my hands getting sweaty and then I recognised a voice a bit shaky but yes it was it was mine! I felt just like I did when I was in my first school production.

It went something like this.
"Hi I am Debbie Hirst cancer patient and I would like you all to understand none of us wake up one day and suddenly think co-payment yes thats what we want to do.
It follows several years of treatment for a condition that cannot be cured but if we are lucky it can be managed. When all the drugs that are available have been used we then have to think outside the box and look at new drugs that are coming through. Sadly these are often very expensive and the Trust will not fund them. If however we can raise the money to cover such drugs, the oncologist would supply then. This was an offer made to me last year. Then the offer could not be honoured as the rules changed and I would have to fund all treatment making it totally unaffordable”

I explained my situation and included some of the points made by other forum members here. Then the representative of Doctors for Reform and another cancer patient’s husband spoke. Then someone chirps up “This is all rather right wing” huge sighs all round and the whole mood in the room changed. I found myself on my feet again in response “We were told at the opening of this forum that it was not political and the last speaker’s tone was very offensive and insulting to many of us here. The Powers That Be have their hands tied when making decisions and they should be let loose. I think that NICE is the wrong name and it should be NASTY and I also think the lady should loosen her knicker elastic” with that I sat down.

My husband Ian stood up and made several valid points the main one being that in no way was he right wing and we were all under the impression that this was NOT a political debate I was so proud. Everyone that spoke made valid points and there was a lot of concern about creating a two tier system. The point was made that we already have a multi-tier system. How unfair it would be if these drugs were only given to those who could pay. Which of course that is not what any of us would want. Concern was expressed by some (me included) that NICE may go even slower. The clock was ticking and it was time for the chairman to bring the proceedings to a close and thank us all.

The man who was sat next to me asked which drug I was referring to and I said Avastin. He told me that was his drug - he was from Roche. Would you believe it I had been sat next to him for nearly 3 hours.Each time NICE had been referred to he had tutted and mumbled under his breath, plus had tried to show me what he was writing but I did not have my specs on so couldn’t see.

People started to come up to Ian and me shaking our hands and saying how moving our story was and how well we spoke and they were sure the co-payment campaign would be successful. The “right wing” comment lady came over and shook my hand said she was sorry for her remark it had been taken out of context and she had been misrepresented. I said “ you said it we all heard you” Unbelievable. She was the most political person there!

One of the people who introduced themselves and shook my hand was Linda O’Boyle’s husband. He said Linda would have been proud of the way I put my point of view across, the way we felt was the way they had felt. It was very emotional.

John Baron MP came over and asked would we like to have a drink with him on THE TERRACE! Well I am sorry to say I got carried away by the moment and said “ oh my God yes of course “ Off we trotted with some VIPs and I forgot to collar the guy from Roche. We then walked through several great halls with the most amazing original oil paintings Prime Minsters past and present I was blown away. We had a drink and a chat I was congratulated for the work I was doing and told to keep up the pressure I explained about this forum and all the lovely ladies with this truly horrid cruel disease and how our situations change daily and how unpredictable our lives were, how young a lot of the ladies are, and the new ones seem to be getting younger on a weekly basis. John Baron told me if I thought he could help us, just to give him a ring at their chambers. I promised him I would.

One of Prof Richards’s assistants came over and thanked me and said I had brought up issues they were not even aware of and if we thought of anything else to please contact them by email.

They want to hear from anyone who has a view or experience of co-payment so please take this opportunity and contact them. This man could change government policy!
His email is
<script type=“text/javascript”>eval(unescape(‘%64%6f%63%75%6d%65%6e%74%2e%77%72%69%74%65%28%27%3c%61%20%68%72%65%66%3d%22%6d%61%69%6c%74%6f%3a%61%64%64%69%74%69%6f%6e%61%6c%64%72%75%67%73%72%65%76%69%65%77%40%64%68%2e%67%73%63%2e%67%6f%76%2e%75%6b%22%3e%61%64%64%69%74%69%6f%6e%61%6c%64%72%75%67%73%72%65%76%69%65%77%40%64%68%2e%67%73%63%2e%67%6f%76%2e%75%6b%3c%2f%61%3e%27%29%3b’))</script>

The web page that explains his remit
dh.gov.uk/en/Aboutus/MinistersandDepartmentLeaders/Nationalclinicaldirectors/DH_086040

John Baron MP is bring up the issue in Parliament again but needs as many MPs as possible to sign what is called an Early Day Motion. So please contact your local MP and let them know you want them to sign Early Day Motion 1818

Sorry this has been a really long post hope I have not bored or offended any of you.

Love Debsxxx

Debs - it sounds as you and you hubby did absolutely BRILLIANTLY!

‘loosen her knicker elastic’ - knockout!

Sounds like a visit from people, such as yourselves, from the real world was long overdue…

X

S

Debs - sounds like you did everyone proud. Well done - you and your OH did a fantastic job.

I will write to my MP and ask him to sign EDM 1818 - writetothem.com is a really easy way to e-mail your MP.

Did you get the name of the Roche chap? If you did it might be worth making contact through the company.

Hope the blisters are better!

Geraldine

Debs, What a wonderful, fearless spokeswoman you are. Congratulations.
I knew nothing about this situation until I came on this site. Since learning about it I have told several people who have been genuinely horrified. I will certainly respond and contact my MP.
Thank yoiu
Margaret

Good on you Debs…

Pleased the woman from unison apologised to you…but I have to say this is a political issue…of course its a political issue. I’d support a woman from Unison over a man from Roche any day.

I will definitely e-mail Mike Richards…though as you know though I support co payments I am more concerend about people who can’t afford to pay having the right of access to drugs which may help them.

Hope blisters are better Debs.

best wishes

Jane

Nice one Debs (and hubby too)!

This disturbs me…

‘One of Prof Richards’s assistants came over and thanked me and said I had brought up issues they were not even aware of and if we thought of anything else to please contact them by email.’

This allways seems to be the case in all manner of situations, if only the un-informed would use a little of their time to actually talk to people actually experiencing the problem or situation rather than assume they know all there is to know because of who they are, their possition or what they have been taught things could be so different.

davef

Hi Debs.

Wow. I can just picture you giving it your all. Well done. Shame you coudn’t have been sipping your drink on the terrace under more happier circumstances.

I’m not really sure from what angle the Unison rep was coming from. Never really sure what poeple’s agenda’s are.

If anyone contacts the man from Roche a question to him might be why the drugs are so expensive in the first place. I know they have to fund research etc but Avastin is much more expensive than other drugs.

May be as well to add extra post regarding emailing mp for the EDM 1818 so as to get as many poeple contacting them as possible.

I wonder what issues the Prof wasn’t aware of?

well done again

Maddison xx
Well done

And when is Roche going to get together the evidence that NICE needs on avastin?

Jane

Hi Jane
sorry I cant answer that but what I will say is …
before I knew who he was or rather where he was from when other people were speaking he kept muttering and when NICE was mentioned he said and I heard clearly 'that is very true they will not cooperate." A few points were made he was making notes and turned his pad to me but I didnt have my specs on so couldnt see.
I will try and find out who he is and try and contact him. It was so frustrating because I would have loved to have had a chat with him he held back but a few other people were in front of him talking to us and we were ushered out of the door and on our way. I could kick myself.

Love Debsxxx

Well done Debs, it must have been so never racking, but when something got to be done it’s got to be done and boy you did it well. Here’s hoping they listen and get this through.

Debs are you aware of the date that it will be decided on in the House of Commons, it’s just that I have a lady coming from the local paper today and it would really stir up the Scottish people/media if I was able to comment on your trip and the fothcoming vote. Can you give me some info so I may use it today the lady is coming about 11am.

Thanks Debs

Diane

Good on ya Debs! What a girl! Wish i could have been there to see you. Love Sue x

Hi Diane,
sorry this may be too late for your local reporter. It is a review asked for by Alan Johnson Prof Richards has to report back in October so it may take months yet. I have put an e mail address in my very long post I know you are in Scotland but I feel very strongly that this should involve all the UK . Good luck with your media frenzy we all need to keep up the pressure, my friends are calling me Emily as in Panchurst.

Thanks Sue, glad you are still around.

Love Debsxxx

Had to edit my post a tiny bit due to Chatham House Rule Dont want to be dragged to the Tower…help!!!

Love Debsxxxx

I’m doing a bit of reading into how EDM’s actually work and thought this may be of help to you all:

edmi.parliament.uk/EDMi/EDMDetails.aspx?EDMID=36122

I know we’re not supposed to post links but I’m hoping the moderators will leave this in place because it’s an official parliamentary page and lists the MP’s that have already added their signatures to the list. Mine hasn’t so I will be using writetothem.com to asking him to in a moment.

My job involves websites related to democracy and civic good you see so I’m supposed to know where these things are :slight_smile:

Hi vertangie

Links to official sites such as this are fine on our forums.

Best wishes

Ann

debs

great post, I thought it was really interesting, and felt like I was there!!

Thanks for the information on the early day motion, I will be writing again to my MP on this.

take care,
Cathy

great stuff debs, really gave me a fillip! I e mailed my MP about the edm 1818 and he has signed.

all the very best to you all,

barnowl

Hi to everyone
thank you so much for your words of encouragement.

The man from Roche rang he said he wanted to speak to us but so many people were gathered around us he couldnt get to us. He said it was the best forum he had been to so far and the quality of discussion was very high. He asked about my condition and siad I lokked really well I said I believed it was down to avastin I asked how long it was extending peoples lives and was it true Roche are not co operating with NICE. I gave him my email he is not able to answer alot of my questions I need to join a patients charity group. So thats my task for today. Dont want to break any rules just want help get avastin out there to all that need it. I told him about a few of the ladies on the forum and he was very sympathetic.

Love Debsxxx

Well done Debs - I think with many things it’s probably best to fight this battle on many fronts. If I can help in anyway let me know.

Geraldine

Hi everyone

I am the User Involvement Facilitator here at Breast Cancer Care. I have been reading this thread with great interest, and noticed the comments from someone that they would like to join a patients group. We do have Breast Cancer Voices here at Breast Cancer Care which may be of interest to you - please go to www.breastcancercare.org.uk/breastcancervoices or email me at <script type=“text/javascript”>eval(unescape(‘%64%6f%63%75%6d%65%6e%74%2e%77%72%69%74%65%28%27%3c%61%20%68%72%65%66%3d%22%6d%61%69%6c%74%6f%3a%76%69%63%6b%79%6c%61%40%62%72%65%61%73%74%63%61%6e%63%65%72%63%61%72%65%2e%6f%72%67%2e%75%6b%22%3e%76%69%63%6b%79%6c%61%40%62%72%65%61%73%74%63%61%6e%63%65%72%63%61%72%65%2e%6f%72%67%2e%75%6b%3c%2f%61%3e%27%29%3b’))</script> The group does have a focus on shaping an influencing internal work here at BCC but external opportunities and campaigning work is also advertised through our monthly Breast Cancer Voices Bulletin which goes out on the 1st of every month. If you are looking for something directly related to the NHS it might also be worthwhile checking out your local LINks network (Local Involvement Network) which relates to the hospital and PCT Trusts in your area.

Best wishes

Vicky