Monday, 28 November 2016

Bloodwise Charity

www.writingrambling.co.uk
Image source: Day Donaldson via Flickr
38,000 people are diagnosed with blood cancer every year – that's one person every 14 minutes.’
Did you know that more people lose their lives to blood cancer than breast or prostate cancer? Specifically, 38 people die from blood cancer every day in the UK. Where any one life is lost, hundreds are affected. It could be your friend who you lose, your mum or maybe your child. All of you need support and that’s blood cancer charity Bloodwise’s mission.

How does Bloodwise help?

Bloodwise works to provide in-depth information on all the 137 blood cancer types, from well-known forms like myeloma through to less common ones like monoclonal gammopathy of undetermined significant (MGUS). They cover the signs and symptoms of the diseases through to life after you or your loved one has had treatment, and they run events which people can take part in to raise money. This money is then invested in research, raising awareness, and providing support through their website, support line and community hosted on their site.

How do they decide what will help patients the most?

The thought that goes into where the money is invested is an important and exhaustive process that involves significant research. In 2015, Bloodwise undertook a large UK ‘patient need’ study to determine what patients really need. This involved:
  • 19 focus groups across multiple UK locations
  • Interviews with over 20 medical professionals
  • 7 extremely thorough interviews with people currently being treated for blood cancer
  • 2 surveys – 1 for people who have bene affected by blood cancer and 1 for the public to determine the current status of blood cancer awareness in the UK
  • Analysis of the ‘National Cancer Patient Experience Survey’ (NCPES) data
The benefit of this undertaking is that Bloodwise can understand all the relevant peoples’ perspectives – not just what the doctors prescribe, and not just how patients feel. As we all know, people can have very different viewpoints on the same situation or topic. Whilst the views on the patient’s welfare probably don’t differ that much, people notice different things A boyfriend, for example, may notice that his girlfriend is vomiting more frequently and can convey this information to her doctors. Often close relatives or partners are better placed to keep track of these developments, given the gruelling nature of treatment.
All of these viewpoints create a clear picture of the patient’s day-to-day life and what they need and when. Finding out what the general public knows about blood cancer allows them to understand how much work they need to put into raising further awareness so they can ensure people see the signs before they become a patient, or before it’s too late. This helps them know what the patient needs before, during and after their diagnosis.

What is Bloodwise doing right now?

This information has led to 24 key patient needs being determined, 6 of which Bloodwise has prioritised as urgent:
  1. Focusing on the biggest killers – myeloma, diffuse large B-cell lymphoma (DLBCL), acute myeloid leukaemia (AML), myelodsyplastic syndromes (MDS), and chronic lymphocytic leukaemia (CLL)
  2. Understanding pre-malignant conditions to ensure health professionals can potentially prevent them from progressing
  3. Understanding what causes early deaths so patients at a higher risk can be identified and helped ahead of time
  4. Ensuring people have more awareness of blood cancer and its symptoms
  5. Increasing awareness of the differences between blood cancer and other cancers
  6. Ensuring patients can easily find information and know where to look for it
These are the patient goals Bloodwise is focusing on at the moment – these are the issues which once addressed, can make the biggest difference to patients’ lives and to the lives of those who we hope won’t need to become patients.
Just like my post on Baking For A Change: #STOPbowelcancer!, it’s hard to hear that in today’s world, 38 people are dying from blood cancer every day. Take the time to understand the signs and symptoms so you can look after yourself and your loved ones. Bloodwise Twitter | Website

Thanks for reading.

Sarah xoxoxoxoxox

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