Help us improve access to support through direct referral to charity services
Many people with blood cancer experience financial burdens, isolation, and don’t fully understand their diagnosis. We're working with healthcare professionals and the blood cancer community to improve access to support after diagnosis.
Project Background
Our survey of people with blood cancer indicates that 58% of those with blood cancer are not aware of any support potentially available to them when diagnosed, and that this disproportionately impacts those from marginalised communities.
This project involves working with healthcare professionals to test a referral service to improve access to emotional and practical support from the point of diagnosis.
Insight from people with blood cancer shows that:
- 58% were not aware of any support potentially available to them.
- 25% were aware of help with health costs (such as free prescriptions).
- Only 15% knew they were entitled to larger financial benefits (such as PIP, ESA or Carers Allowance).
- A blood cancer diagnosis can impact people financially, yet only 9% knew that their blood cancer diagnosis made them eligible for one-off grants and loans.
- Only 12% knew they have legal protections under the Equality Act which could help many people with their employment.
- 47% do not feel part of any community, yet 70% say this is important to them. For those from Asian, Black, or mixed ethnicity backgrounds, finding a supportive community is even more important (75% vs 63% ). With the proportion of these people saying it was extremely or very important to them being almost double that compared to people from a white background (49% vs 29%).
Read the report behind these numbers.
- To provide additional emotional and practical support to people newly diagnosed with blood cancer.
- To understand if a digital referral works for healthcare professionals, people newly diagnosed with blood cancer and/or their carers.
- To help reach and better support people from marginalised communities.
At the diagnosis appointment or soon after, healthcare professionals will ask their patients (and/or carers) if they'd like additional information and support from Blood Cancer UK.
If the patient/caregiver would like further support, the healthcare professional will complete a quick online referral form.
The patient or carer will immediately get an email confirming their referral. They will then proceed to get weekly support emails from us, covering topics like diagnosis, treatment, connecting with others affected by blood cancer and practical support. The emails are tailored to whether a patient or a carer has been referred.
If the patient/carer doesn't have access to an email address, we will contact them by phone within 5 working days of the referral. We will tell them about the support services available to them.
What our community thinks of this offer
I didn’t know what it was or who to talk to. I wouldn’t have felt comfortable contacting Blood Cancer UK myself, more comfortable if they reached out to me.
I think the scheme is marvellous. I only wish it was available in March 2022, when [my loved one] was diagnosed with AML. It would have saved us a lot of heartache and anxiety.
Working with hospitals
We're working with hospitals to ensure that we build a product that is inclusive and accessible for all healthcare professionals and people affected by blood cancer across the UK.
The referral service has been live at our first pilot site, University Hospitals of North Midlands, since March 2024. It is now also live at Northumbria Healthcare NHS Trust with healthcare professionals actively referring patients and carers to Blood Cancer UK for post-diagnosis support.
Opportunity to become a pilot hospital
Over the next year, we’ll grow our partnerships with hospitals and aim to reach up to 10 hospital pilot sites by the end of September 2024.
Do you want to join the pilot programme?
If you're interested in joining this service improvement initiative please get in touch with our Clinical Engagement team: [email protected]
Help improve support services for minority ethnic groups
Some types of blood cancer are more common in Asian and Black communities. Yet many people from these communities aren't accessing support. Through this project, we want to design a support offer with people affected by blood cancer from an Asian or Black background.
Please download and print this poster to help us reach more people from Asian or Black communities to support this project.
Acknowledgements
Blood Cancer UK launched this project in 2023. The initial work was funded by Blood Cancer UK, however we have received financial support for this work in 2024 from the following pharmaceutical companies and charitable trusts and foundations: AbbVie, Gilead, GSK, Roche, Servier and Osmer Charitable Trust. These organisations provided funding but had no further input.
