This month, the charity formerly known as Leukaemia & Lymphoma Research have changed their name to Bloodwise. To coincide, they have launched a huge media awareness campaign in the UK.
I think that the name change and media awareness campaign is a brilliant idea.
Bloodwise tells us that –
There are 137 types of blood cancer and related disorders.
When Leah was initially diagnosed, we did not know where to turn. Nobody seemed to have heard of myelodysplasia with monosomy 7. We felt so isolated and alone. Any of the well known blood cancer charities just seemed to talk about leukaemia and lymphoma, so I thought that there was no point in contacting them for help and advice.
The name Bloodwise seems way more inclusive. I visited their new web-site, clicked on the menu tab in the top left hand corner, selected Information and Support, which caused another menu to pop up. Here I clicked on Information and Support, causing a new page to open. When I scroll down this page I see a sentence “I am looking for information on All blood cancers” and clicking the down arrow at the end of this, gives a drop down box where I see lists of various types of leukaemia, lymphoma and Other blood cancers which is where Myelodysplasia/Myelodysplastic syndromes are mentioned.
When you visit their web-page, these headings are all ‘hyperlinks’, so if you click on any of them, you get more information about that particular diagnosis. So, for example, if I click on Myelodysplastic Syndromes, this page opens.
Two weeks after Leah received her diagnosis at Belfast City Hospital I contacted a member of staff at the Sperrin Unit looking for help and support. The Sperrin Unit at Altnagelvin Hospital is our local Haematology/Oncology Unit where Leah had been having investigations for four months prior to her diagnosis. The staff there referred us to the N.I. Cancer Fund for Children, who continue to provide us with very valuable support.
The following week, while attending an appointment at the Regional Fertility Clinic at ‘The Royal’ in Belfast, Leah suggested that we visit the Macmillan Information Service in the main hospital. The Macmillan Information Service Manager there referred Leah to a Clic Sargent Social Worker and a TYA Clinical Nurse Specialist, both based at Belfast City Hospital, where Leah had many of her appointments post diagnosis.
It was such a huge relief to us to have support at last and to be able to talk to people who understood. Finally we had found people who could answer some of our questions and who could help us start making sense of everything that was happening.
It wasn’t just our friends and family who hadn’t heard of Leah’s diagnosis before, on several occasions in N. Ireland I encountered nurses and doctors who hadn’t heard of it either.
On one occasion, when Leah was an inpatient, a young doctor held up Leah’s notes and said to me “Do I have to read through all of this or can you explain everything to me?” I very much appreciated his honesty and I happily explained everything to him.
To be honest, I found the attitude of this young doctor far more respectful, than the attitude of the young consultant who, when Leah was dying, said to me, “I’m glad that your niece is here, because she’s a nurse and she can explain the medical terminology to you.” Leah had been two and a half weeks in that unit at this stage – did I really come across as not knowing what they were talking about?
I never advertised the fact that I’m a nurse (dual qualified – general adult and mental health) as I just wanted to be treated as “Leah’s Mummy”.
However, in my experience, most parents of children and young people with chronic/life limiting illnesses very quickly become experts in their child’s condition and want to be treated as partners in their child’s care by healthcare professionals.
Furthermore, if this doctor had thought that I didn’t understand what he was saying, then he should have used simpler terminology or explained himself better. My daughter was D-Y-I-N-G, we were arranging her end of life care, within twenty four hours she was gone.
As a healthcare professional myself, I consider that it’s my responsibility to ensure that service users can understand me, taking into account their cultural and ethnic background, standard of education and any disability that may impact on communication.
Dr Kate Granger is spot on in her most recent blog post when she talks about the importance of communication and compassion. The many healthcare staff who exemplified those two qualities while caring for Leah and I, certainly made our difficult journey that little bit easier and will always be fondly remembered by me.
In closing, I want to raise awareness that many people with a blood cancer will require a bone marrow or stem cell transplant.
Unfortunately this didn’t save Leah’s life, although it may have given us some extra, precious, time.
Nevertheless, a bone marrow/stem cell transplant has saved the lives of many other adults and children.
Here are some facts, taken from the website Team Margot, which is run by the parents of a gorgeous little girl called Margot Martini, who sadly also lost her life to blood cancer: