The Queen Elizabeth Hospital are responsible for my primary care to ensure I receive my blood transfusion regularly as well as manage any infections I may pick up.
Addenbrooke’s Hospital is where the Oncology and Hematology specialists are based, this is where any decision regarding my long term care is made.
The Royal Brompton is home to the only T2* MRI scanner in the country. T2* MRI give an accurate measure of the amount of Iron stored within your Heart and Liver. Anyone on regular blood transfusions should be scanned at least once a year.
Oxford John Radcliffe is where very clever Doctors look at my Bone Marrow to investigate the cause behind my rare and unexplained Anaemia.
NHS Blood and Transplant are responsible for making and taking appointments to allow extremely brave volunteers to give blood. The blood you donate is given to not only patients like myself but to major trauma patients as well.
Charities who have helped me..
The Kings Lynn Hospital Charity fund provided CME Medical the funds we needed to purchase a new battery operated Syringe Driver. This replaced a mains power Syringe Driver, which was very big and bulky and very often failed during the night.
Addenbrooke’s Charitable Trust funded for me to have my own blood testing machine at home. This gives me the ability to test my blood as and when I’m feeling unwell. This helps to determine whether or not I may be due a blood transfusion, sooner than expected without the need to travel to Hospital to have blood tests.
This Charity provided us with a link to another patient with the same blood disorder.
The Diamond Blackfan Anaemia UK Charity very kindly invited me into their group, despite knowing that the blood disorder I have is very different from DBA. I was invited to a PGL weekend along with many other DBA patients and had a fantastic weekend. During the weekend me and my parents learnt lots from patients and their parents as well as leading specialists, developing medical technologies to learn more about the blood disorders we inherit.
This charity is based in King’s Lynn, Norfolk and was founded by two very special parents who wanted to help raise awareness of their children’s medical condition and to provide support to others in the very same way as this website. During the Christmas holiday in 2012, I spent the whole of Christmas week isolated in hospital due to a viral infection, following a blood transfusion. Reach for a Star very kindly donated a Telescope amongst several patients throughout that week, which helped bring a smile during difficult periods of darkness.
Medical Equipment supplied by..
This is where the Addenbrooke’s Charity Trust sourced our HemoCue blood testing machine for home use.
The Kings Lynn Charity Trust sourced my Mckinley T34 syringe Driver from CME Medical. Prior to the McKinley T34 I had a really old syringe driver which was very big and very often failed during the night.
The Beads of Courage program gives me the ability to be able to tell my story, explore my journey with whoever I want to. Every time I visit Clinic, and depending on why i’m visiting hos[ital I receive a bead. I’ve listed some of the beads below as an example;
Bone Marrow Aspirate | Biopsy * Beige
Clinic Visit | Infusion * Blue
Transfusions | Blood Products * Red
Isolation | Fever * Lime
Surgery * Star