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The work we are doing

The power of patient voice is integral to the success of our work. Keep up to date with some recent projects where we’ve been working to bring patient voice to the centre.

Please note these are not inclusive of every piece of involvement we are doing.

Sign up to our Involvement Network to hear about these opportunities regularly.

Service Transformation Project

There are 40 000 people diagnosed each year with blood cancer, and we know we need to do a better job of reaching those people. We are looking to improve the way we support people by meeting their greatest needs and ensuring anyone with a diagnosis has access to support and information.

We are bringing healthcare professionals and a wide range of people affected by blood cancer together to help identify challenges, test our thinking and co design a service. We aim to complete this project by April 2023. If you’d like to share your experience accessing support – please fill out this survey.

Co-creating our health information

We recently published a series of new web pages about side effects like hair loss, nerve damage, brain fog and sleep problems. We worked with people from our community to hear their experiences, find out what helped them manage side effects and co-design this information.

We have also been working with people affected by acute myeloid leukaemia (AML) and myeloma to update and improve our online and printed information on these conditions.

Current projects include information about myelodysplastic syndromes (MDS), essential thrombocythaemia (ET), polycythaemia vera (PV) and myelofibrosis (MF).

If you would like to help with our MDS information, please contact Grace: [email protected].

To get involved with our information about ET, PV or MF, contact Rachel: [email protected]

Patient Voice Grant Advisory Network

The core aim of group is to highlight relevant considerations for Blood Cancer UK research, the researchers we fund and research funding processes, so that this best meets the needs of people affected by blood cancer. This is achieved by scoring and providing feedback on grant applications submitted to us by researchers.

The creation of a new post, Research Programme Manager – Patient Voice and Research Partnerships, will ensure this group expands meaningfully in the coming years to ensure that the patient voice is embedded fully in our entire research programme. You can read more about how we involve people in our research here.

COVID-19 Public Inquiries

We are responding to the UK and Scottish COVID-19 Public Inquiries and have hosted a series of workshops and interviews of the past few weeks with members of our community to better understand their experience. We will be using this information to build a report evaluating Westminster’s and NHS England’s response to COVID-19, using case studies as evidence and making policy recommendations for the current situation and future pandemics. This report will be completed in 2023.

Wales and Northern Ireland haven’t called for Public Inquiries on this topic, but people living in Wales and Northern Ireland can contribute to the UK Public Inquiry via their ‘Listening Project’, which will be launched later this year.

As soon as the Listening Project is launched, we’ll update this page and reach out with more information and various ways to get involved either directly with the Inquiry, or via our report. In the meantime, if you have any questions please contact Victoria, our Policy Officer, at [email protected].

Recruitment of our Blood Cancer UK Action Plan Programme Manager

In a recent recruitment we had an Ambassador sit as a member of our hiring panel. This involved forming the questions we asked the candidates, sitting on our panel, delivering questions and discussing suitability. We are delighted to have appointed a candidate who will start in November.

Peer Support Volunteers

Peer support can be an amazing tool for people diagnosed with a blood cancer and their family members. Our community often tells us how much they benefit from speaking to someone in a similar situation to them. Our Online Community Forum provides a place to connect for some individuals, however we know we could do more to offer peer support in our community.

We have brought people affected by blood cancer together through a working group and in several workshops to help codesign what this volunteer role looks like and how we can deliver it effectively to improve the lives of people affected by blood cancer. We hope to launch this new, exciting role in January 2023.

Website development

Over the past few months, we have been doing some important work on improving our website. We have begun to explore how people affected by blood cancer use our website, to allow us to make our information as easy to access and user friendly as possible. To do so, we have been asking people to undertake series of tasks and feedback their thoughts.

If you are interested in shaping the future of our website, please contact Ben Sykes at [email protected]

Our new strategy

“It was great to be part of the project team looking at the Research Strategy, I really felt included and able to share the views of myself and other blood cancer patients as we considered the research focus areas, prioritisation of research funding, research partnerships and how to influence the overall spend on UK blood cancer research. I am really looking forward to seeing the results that the strategy will produce for our community” Carole, Patient Voice Representative

Read about how we involved people affected by blood cancer in our strategy work.