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Involvement Network terms of reference

We work with people affected by blood cancer to ensure their experiences are at the heart of everything we do. On this page, you'll find information about how we work with the community and, the roles and responsibilities of the network.

Our commitment to involvement

  • We will aim to involve people affected by blood cancer across our work at different levels of engagement, i.e. from business planning, strategy and policy to service design, development, and delivery. 
  • Our involvement activities will be underpinned by our values and a desire to improve the lives of people affected by blood cancer. All our activities will aim to better support our community’s evolving needs. 
  • We will aim to involve people affected by blood cancer from across the UK in line with our diversity, inclusion, and equality strategy. 
  • We are committed to involving people in every stage of our work from planning and design of activities and services, the implementation of those, through to evaluation and review.
  • We will build products and services with people affected by blood cancer, so that we ensure that those products and services best meet their needs.
  • We are committed to providing a safe, secure and friendly environment in which those we involve feel confident expressing their views.
  • We will listen to the feedback and insights we gain from engaging with people affected by blood cancer. 
  • We will share our work and feedback with those involved in our work, the wider blood cancer community and other relevant stakeholders. 
  • We will evaluate the outcomes and impact of our involvement activities through robust processes and planning. 

Main responsibilities

  • To respect others’ views and opinions, even if they differ to your own. 
  • To respect others privacy and confidentiality 
  • To actively participate, contribute and engage with the work you are involved with 
  • To always let your Blood Cancer UK point of contact know first if you have any problems.  
  • To familiarise yourself with, and respect our Code of Conduct, organisational values and Terms and Conditions.


We will contact you with involvement opportunities that we are internally conducting. These opportunities may come from a specific team within Blood Cancer UK – how often we get in touch and the types of opportunities will vary. You are under no obligation to accept the opportunity, and while we will endeavour to deliver opportunities that are relevant to our entire network, they may not always be suitable for your experience or circumstance. You do not need to have any previous experience of involvement work to sign up.

We might also get in touch with opportunities from external organisations who are working to improve the lives of people affected by blood cancer, such as the NHS or NIHR. We will never pass on any contact details without your permission.  

If you have questions or know or want to speak to someone about the network, please get in touch by emailing [email protected]

How we use your information

We will keep any data collected and personal information in line with our GDPR and data privacy policy.  You can read more about this in our Terms and conditions.

Time commitment

Signing up to our involvement network means you will receive opportunities on an ad hoc basis. The relevant time commitment for each opportunity will vary, and it is up to each individual as to whether they get involved or not. 


We may email you about sensitive or confidential information that relates to our work. Agreeing to being involved in this community, we expect you to respect the privacy of the organisation, as well as any sensitive information shared. 

Payment and expenses

We may offer compensation for reasonable out of pocket expenses including travel, sustenance, and accommodation. All expenses will follow Blood Cancer UKs expenses policy and will be agreed upon beforehand with relevant Blood Cancer UK contact. Proof of receipt will be required.

Payment for involvement

There may be occasions where you are offered compensation for your involvement, or you are put in touch with an external organisation who may pay for your involvement. I.e. in the case of a pharmaceutical company paying for your time in a focus group or workshop etc. External payment or compensation for time in these cases will be a private arrangement between the organiser and the individual rather than via Blood Cancer UK. There may be cases where we offer internal compensation or incentivisation, this will depend on the project and be explicitly stated in any recruitment.

Equality, Diversity, and Inclusion

Blood Cancer UK values equal opportunities and diversity and expects everyone to reflect this in the way they work. Everyone is entitled to fair treatment by others, and to be treated with respect and dignity. In return, they are expected to treat others in this way. Full details are contained within our Equal Opportunities and Diversity Policy and Equality, Diversity and Inclusion Strategy.


Monitoring and evaluation are important to how Blood Cancer UK meaningfully involves our community. Being involved with us may require regular feedback and evaluation on the piece of work we are doing. We welcome additional comments and questions at any stage of involvement.