I will be putting this blog post in as many places as possible in terms of social media, and I also ask, if you agree with what I say to send it to anyone and everyone who may be interested. I rarely, if ever, ask for my blog posts to be re-tweeted/shared etc, but today, I ask that you do.
Not all you may know this. I am in fact a cancer patient and have been for just over a quarter of my life. I was diagnosed with a chronic form of leukaemia (Chronic Myeloid Leukaemia) on the 19th January 2007 whilst studying at Edinburgh. Not what I was expecting after a trip to the doctors and a subsequent blood test. I have, since moving to London in January 2009 and discovering and getting involved with the Teenage Cancer Trust, become a very active patient voice. I speak for Macmillan, blog for and generally get involved with Leukaemia & Lymphoma Research and also London Cancer. Since coming into Contact with London Cancer I have sat as a patient voice on an expert chemotherapy reference group as well as a variety of other focus groups, and I am on the steering and scientific committee for a research trial that will hopefully start at the beginning of 2015 involving University College London Hospital, The Royal London Hospital For Integrated Medicine and Macmillan. I have also been to parliament to talk to MPs about cancer care in the NHS and both blog with the written word and videos. I’m not going to lie, some of this I do for me, but a lot I do for others.
Living in the NHS for so long and experiencing both how patient should never be treated as well as (now) having excellent care means I can talk about the good and the bad. I have experienced what many never have at my age for example making decisions about my fertility at 22. I live with old man’s cancer, an invisible disease that I carry around with no signs as I have always been treated with a pill form of chemotherapy that I take daily, so have always had my hair etc. However, this is not about me and my story, you can access that in elsewhere. This is about something that I woke up to this morning.
A few years ago I was invited by the Teenage Cancer Trust to train as a Peer Reviewer, and agreed immediately. I am very proud to be a Peer Reviewer as it means that I have a direct impact in how others are treated. I specifically Peer Review Teenage and Young Adult (TYA) cancer wards set up by the Teenage Cancer Trust because of my experience of being a TYA. This means that I read through documentation prior to the visit and when there, alongside other peer reviewers such as a nurse, oncologist etc. we would check that what the hospital we were reviewing said was the truth. I also cannot Peer Review any hospital that is a part of my hospitals trust where I am treated so there is no conflict of interest. This is what is so brilliant about Peer Review. Trained patients as well as medical staff who understand how hospitals are run and the jobs they are meant to be done go in who have NO affiliation with the hospital under review at all. This means the review is true. After going through the documents sent prior to the review and checking against the documentation in the hospital, the staff on the ward come in and we would then go through the points and clear up any queries. I then ask questions to make sure that care is appropriate and how they deal with potential issues such as patients who lived a long way from the Teenage Cancer Trust ward and how they would get access. (This is so important to me as I didn’t have access to a Teenage Cancer Trust ward and my experience was horrific). This means that problems could be spotted before anything happened and if needs be, the hospital/ward put onto special measures until the problem was sorted. THIS SAVES LIVES AND KEEPS PATIENTS SAFE.
I received an email this morning to say that the 2015 Cancer Peer Review has been suspended. I do not know if NHS England is going to replace it with something else. All I know is that without it there will possibly be no review of the hospitals that were meant to have it this coming year, or if they do it will be by people who may have a biased opinion which is problematic. This is the point of Peer Review it is people with no bias who CARE about reviewing cancer services. I was at a meeting recently and NHS England have stated that there will be an 8% rise in cancer patients going through hospital clinics, I believe starting next year. An 8% rise. Will there be an 8% rise in nursing staff and consultants? This 8% rise is going to cause a lot of strain and the fall out will no doubt be on the patient. Peer Review is one way to try and prevent it. I also feel that my right to protect and ensure correct care has been taken away. The patient voice is so strong and so willing to make things better for others. Especially for the Lost Tribe, the 16-24 year olds that ALWAYS have a rare cancer as it’s rare in this age range. It’s never expected so often there is misdiagnosis of months or even years. It is this age group that I am passionate about and want to be able to help and protect. Peer Review gave me that and it was a joy to do it.
I don’t know if writing this will do anything. I just hope that the more who read it and realise the value and importance of Peer Review in cancer services might mean that someone somewhere will listen. Don’t let another hospital disaster happen because we weren’t able to go in and check the paperwork, speak to the staff and make sure all was ok. Don’t let cancer services be reviewed by other departments in the same hospitals – the review will never be 100% honest. Don’t let NHS England take away this tool that can save lives.
Here is a link to a petition which links Peer Review and breast cancer. Please sign it.
So with a heavy heart, and it truly is, I thank you for reading this.
With hope for without it there is nothing, Katie