Leukaemia and L...
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Q&A with our new Director of Patient Experience

Leukaemia and L...
Posted by
06 Aug 2015


Hi Diana, can you introduce yourself and tell us a bit about your role?

Firstly I’d like to say just how delighted I am to be here, so thank you! 

I’ve joined the charity at a time of enormous change, all of it exciting and all of it clearly putting patients at the heart of all we do. It’s the busiest of times, getting ready for September’s launch of a new name, new website and of course blood cancer awareness month. I’ve been visiting other charities and meeting and listening to clinical experts, patients and carers – to get a sense of the breadth and complexity of blood cancer.

We’ve recently recruited two new members of staff to the team to work with us in answering the very broad range of calls, emails and social media enquiries; and we’re all working on the beginnings of developing our services in response to the Patient Need research which was completed earlier this year.

Tell us a bit about the Patient Need research and how it’s informed our work

Our Patient Need research programme began back in 2013. It’s the biggest blood cancer study of its kind: we spoke to 2,000 people, many of whom were blood cancer patients, as well as many carers and family members and a whole range of clinicians, policy makers and researchers.

It's an ongoing project but the research so far has identified gaps in care, provision and awareness that even leading experts weren’t aware of. 

Can you tell us more about the research findings?

The research highlighted 24 key issues faced by patients that need more support, work and dedicated resources from us and other charities, researchers and clinicians.

The issues range from initial awareness of blood cancer right through to treatment and living with blood cancer and for some to the end of life care. Initially we’re focusing on six priority areas. The first three are increasingly directing our research agenda – understanding the five biggest killers; increasing further understanding of pre-malignant conditions; and understanding early deaths.

The other three priorities are all about the lack of awareness both among the general public and possibly also with GPs; a perceived lack of provision; and need for signposting for patients - as many patients and carers aren't finding the support and information that they need. Finally, we need to address the sense that blood cancers are different – blood cancer patients are seen in the haematology unit, separately from other cancer patients seen within oncology. Many people feel there’s less support offered for blood cancer patients, and that the experience can sometimes be quite isolating. 

How do we plan to address those issues?

As well as investing more into research into the three priority areas, the first thing we’re doing is changing our name to Bloodwise and launching the UKs biggest blood cancer awareness campaign this September. Our new name will help tell everyone that we're here for all blood cancer patients and our awareness campaign will help to tell the world that blood cancer exists and is important.

We’re also re-launching our website, which will have our own patient information, personal blogs and patient videos right at the heart.

The Patient Experience team are working closely with our Creative & Digital Team to build a digital signposting service – Blood Cancer Connect. This service aims to increase access and awareness of the services, information and support that are available to anyone affected by blood cancer.

We want Blood Cancer Connect to offer a supportive, safe and collaborative space that meets the needs of patients, carers and health care professionals looking for information, local support or the latest news. It’s a really exciting project that will be launched later in the year. The team is currently out and about talking with our partner charities and working with patients, carers and clinicians to build the site to meet as many needs as possible.

Can you tell us a bit more about how we're developing patient information?

A huge part of the work the team is focusing on is getting our patient Information ready for the new website, for Blood Cancer Connect and also for print to distribute directly to patients and to clinics.

We've recently completed a full review and revision of some of our patient information, with more on the way. Although this is an area in which Bloodwwise is well respected, there was a clear need for us to re-evaluate our offering to make sure it was helping as many patients as possible – to produce quality, accessible content that is completely medically accurate. We set up new processes and review procedures, calling on the expertise and experiences of health professionals, patients and their families to provide insight and help guide and support the production.

We organised a full design review, working closely with the Creative Services and Insight teams. The layout, styel and content was informed by patient focus groups and the opinions of nurse specialists and clinicians. 

We’ll replace stock gradually as they run out with the new Bloodwise look and feel, so you may see a mixture of old branded publications with new ones over the next year. Recently we had the fantastic news that our chronic myeloid leukaemia booklet was highly commended for the 2015 BMA Patient Information Awards!

Over the last year, we've produced a suite of patient experience and clinician videos on blood cancer. We’ve interviewed over thirty patients about their personal experience of living with blood cancer, as well as eight clinicians who give their expert opinions on what to expect throughout the treatment journey for a range of conditions. Our questions were informed by the most common queries asked by blood cancer patients. This suite of videos will sit alongside our written patient information on our new website.

What does this all mean for blood cancer patients?

Firstly, our campaign aims to get the message across nationwide that we’re here for blood cancer patients and there’s lots of support and a community of people that exists for every single type.

When someone is diagnosed and being treated for blood cancer, Blood Cancer Connect will offer one place to go online to find the information and support needed.  

From Blood Cancer Connect patients can find out about services and support offered throughout the country, it’s a space to talk to others and share information they’ve found useful. Blood Cancer Connect will hopefully make life a little easier for anyone trying to understand their diagnosis and manage their condition.

Our information and videos should answer a lot of the many questions a patient will likely have after diagnosis and offer the invaluable perspective of someone who’s been or is going through something similar.

What else is coming up ?

At the minute we're also exploring what the needs are around 'watch and wait' and some further specific information needs of young adults with blood cancer. It’s a very busy and exciting time for the charity, all our research investments and plans for patient experience, so watch this space!