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
http://action.breastcancercampaign.org/ea-action/action?ea.client.id=1777&ea.campaign.id=32111&ea.tracking.id=sianblog
Here is a link to a petition which links Peer Review and breast cancer
http://action.breastcancercampaign.org/ea-action/action?ea.client.id=1777&ea.campaign.id=32111&ea.tracking.id=sianblog
So with a heavy heart, and it truly is, I thank you for
reading this.
With hope for without it there is nothing,
Katie
This is awful, thank you for writing it. It's really important that we reverse this decision. Are you going to create a petition on change.org or anything? xx
ReplyDeleteThanks for writing and sharing.
ReplyDeleteWhen I have fears that I may cease to be
ReplyDeleteBefore my pen has glean'd my teeming brain,
Before high-piled books, in charactery,
Hold like rich garners the full ripen'd grain;
When I behold, upon the night's starr'd face,
Huge cloudy symbols of a high romance,
And think that I may never live to trace
Their shadows, with the magic hand of chance;
And when I feel, fair creature of an hour,
That I shall never look upon thee more,
Never have relish in the faery power
Of unreflecting love;--then on the shore
Of the wide world I stand alone, and think
Till love and fame to nothingness do sink.
John Keats: When I Have Fears... x.
Very helpfull post,thank you..
ReplyDeleteThe best astrological services contact. Best Indian Astrologer in Ontario
Nice Post!!
ReplyDeletePlease look here at Astrologer in Canada