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
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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
