Hello my name is Donna and I am a Cure Leukaemia Nurse. I was hoping to give you a brief overview of my unique role which is solely funded by donations to Cure Leukaemia.
I am normally introduced to patients at a pretty desperate time in their lives. It is usually when they have exhausted all other treatment options on the NHS. Their disease has often relapsed after multiple lines of therapy and it is at this point they are told there are no approved drugs available on the NHS which sadly means palliative care is their only option. As you can imagine, at this point patients are almost at crisis point and it is heart-breaking. They are often unwell, anxious, confused and completely stunned at the news that has been given.
This is where I can step in with the offer of a clinical trial. All drugs that are approved on the NHS have to go through a rigorous testing system to make such it is a) safe b) works c) not too toxic. This is where research comes into play. There are vast amounts of new; exciting drugs that are being developed that can be accessed via clinical trials.
My job is basically to bridge the gap between research and the patient seeing these new drugs. At the beginning, my role is to talk through the trial option in detail so they can fully understand what is on offer. I explain the logistics, side effects of the new drugs, screening tests involved and can answer any queries they may have. During this process, patients and their families often need a lot of support so it is important I can dedicate a lot of time to them.
If they decide they would like enter a trial, the patient firstly needs to give written consent. We then need to undertake vigorous screening tests to make sure they meet the entry criteria of the trial. Screening investigations are basically in place to protect the patient to ensure we are not doing any harm to the patient whist undertaking research. My job is to co-ordinate these tests. All trials are different but generally we need to do bone marrow biopsies, scans, blood tests, a trace of their heart and basic observations such as blood pressure, pulse and temperature. Once we have confirmed the patient is safe to enter, treatment can begin.
Treatment varies depending on the trial but it mainly includes chemotherapy, antibodies or targeted therapy. It is normally given as an infusion into the vein, an oral tablet, an injection under the skin or a combination of these. I am responsible for administering these drugs safely as per the trial recommendations. Since these are usually novel therapies, the risk of drug reactions are high. It is therefore really important that I have the skills to deal with reactions quickly and safely. I am there with the patient every step of the way and I think it really helps them to know that the same person will be delivering their treatment week in, week out.
Side effects of treatment can be gruelling and it is my job to make sure the patient has a good quality of life during the trial. If the patient is suffering with sickness, I help to co-ordinate their anti-sickness medication. If the patient’s blood counts are low, I will arrange blood or platelet transfusions. Basically, my job is to try and make the patient feel better. I think it is really reassuring for patients to know that I am their single point of access during this process. I always make myself readily available to help allay any fears or anxieties. I think it helps them to know that I am always around or at the end of the phone.
Submitting data to the trial is also a big part of my role. In order to prove that a drug is working, the trial staff need evidence. At almost every visit, I have to complete paperwork to the trial which gives an overview of the patient’s condition. This is probably one of my least favourite part of my job since I much prefer direct patient contact. However, I realise it is a really important since without evidence, new drugs will never become available and future patients will never be able to access these exciting new drugs.
Sample collection is also another important aspect to my role. Patients need to have blood and bone marrow samples taken at certain time points during their treatment. This is important so the science can be analysed. I co-ordinate the samples to ensure the trial laboratories have the appropriate samples they need in order to determine whether the new drugs are having an effect on a cellular level.
A huge part of my job is to offer emotional support to patients and their families. They are going through the most difficult time in their lives and they deserve time, dedication and empathy. As you can imagine, the amount of time I spend with them means I build up an unbelievable rapport. When treatment works it is so rewarding, it almost feels that I am receiving the good news too! Equally, when bad news is given it is truly heart-breaking.
Sadly, not all patients go into remission on clinical trials. Sometimes all we can do is prolong life, even if it is only for a short period. As sad is this sounds this can sometimes be just as rewarding. Some patients want to reach a certain milestone. Helping a man to walk his daughter down the aisle or surviving long enough to meet his grandchild is priceless.
I am very proud to call myself a Cure Leukaemia Nurse. I am truly fortunate that I adore my job. I get to offer hope when there is none. I get to give care and support to people in their darkest days. My job would not exist without the charitable donations given to Cure Leukaemia.
At the moment, access to clinical trials is a post code lottery. Not all trials are open in all centres. Sadly this means if you are born in the wrong postcode, this could mean the difference between life and death.
Cure Leukaemia are trying to address this bias by funding research nurses in different locations but they cannot do this without your support. Please keep giving…..
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