I was in London on the 22nd March 2017, the day that the tragic incident happened on Westminster Bridge. I was actually invited by Gerard Dugdill of the Pink Ribbon Magazine to join him at the APPGBC meeting in parliament at 1.30pm. I was travelling from Manchester as I was speaking the next day at the conference Gerard had organized about Data and Statistics for secondary breast cancer. I had told him I couldn’t attend the APPGBC due to the train times and didn’t think I could change the booking. I had also arranged to meet Julia from BCCWW on London Bridge on the 22nd…. Both didn’t happen and I am certainly glad I didn’t rearrange my train time. Poor Gerard was caught up in all the trauma and he didn’t get out of Parliament until around 7pm. I met him for a coffee when he was able to leave. It had been quite a traumatic time. So sad to hear of the people who were killed and hurt in the incident. Thoughts are with everyone affected that day.
The conference the next day was excellent and I met some great contacts whom I am now in discussion with. I am able to provide information (wish list) to them to improve what they do and help what is currently being discussed with Breast Cancer Care regarding data collection. Looks like I will be able to take the information to the Greater Manchester Breast Pathway Board.
If you aren’t aware, I attended Parliament in January 2016 (see my blog We Did Them Proud) – to highlight the issues around data and statistics after seeing the campaign with Breast Cancer Care and also knowing that this information is so very, very important to patients, the NHS, research and science. Aswell as it being important to help with research, the one big problem is around pricing with pharma and NICE and how collecting this data can help with this issue.
Dr Rachael Brock from Public Health England who is the National Head of Cancer Registration attended the March 2017 conference and has been very helpful listening and giving me further contacts. One key contact she had put me in touch with rang me and I could feel the passion for the subjects via the phone, as she very excitedly told me about what was now being done. She had seen the parliamentary questions back in 2016 (see my blog We Did Them Proud) and from this and these questions she actually wrote her PDR (Personal Development Review) around them. Even though I haven’t seen the data yet, she says all the information I’m asking for is definitely being collected and once we are able to meet she can actually show me what is being done. WOW! What fantastic news! Yet still some hosptials are not collecting the necessary data. She is part of the team of data analysts that go around to the NHS and collect the data from them then send it back to them in a more user friendly format. She will be making sure that they are providing this. I also know there are some upgrades to the system this year and early 2018 but then it should be providing full data. Also, I am told they have started collecting data from research scientist’s aswell so this should resolve the many issues we have with clinical trial data.
Gerard decided to hold the conference due to our discussions back in 2016. My enthusiasm and continued push for this information and the huge problem was made clear at the Data and Statistics conference. The following two slides highlight what has just been reported in the press about the CDF – Cancer Drugs Fund. The first one showing how many drugs had been REJECTED by NICE.
The next slide was shocking but of course I knew that this wasn’t happening that NO DATA was collected via the CDF
This report came out the other day “Criticisms of the CDF (Cancer Drugs Fund) – No Data Collected”
It beggars belief that we have new drugs (worth £ Billions that have cost billions to develop in clinical trials) available via a system where they don’t actually know how effective these drugs have been with patients. So how do they challenge pharma to say that new drugs, like say Kadcyla, is being much more effective? How do we have leverage and data to help reduce the cost?
They basically have the NHS by the balls.
Lets hope that this is about to change.
