Jon Hoggard
Posted by

Patient Services highlights of 2014

Jon Hoggard
Posted by
19 Dec 2014

A look back on a very busy, exciting first year for Leukaemia & Lymphoma Research's Patient Services team.

It has been a very busy first year for the Patient Services team! We’ve achieved a lot and have much to look forward to in 2015 too, as we continue to develop ways to support patients, their friends and family.

So, what has 2014 been like for Patient Services? Here’s a rundown of our highlights, in no particular order!

1. Engaging – getting out and about, meeting people and strengthening awareness

Building relationships across the UK with clinicians, clinical nurse specialists, research nurses, counsellors, therapists and many other professionals who work directly with patients, we have been able to learn huge amounts from sharing experience and knowledge, and we have established and developed our presence among patient communities, increasing our reach and reputation.

2. Recruiting our Medical Advisory Panel

A new venture in 2014 was the creation of a group called the Medical Advisory Panel (or MAP), who are an engaged group of the UK’s leading blood cancer clinicians. They’re ready and happy to be consulted by Leukaemia & Lymphoma Research on a range of matters, from patient queries to advice and insight on various projects, and are also fact checking and re-writing our patient information. This reliable and robust group offers invaluable support across the charity, and have already proven to be a key resource for Leukaemia & Lymphoma Research.

3. Supporting patients – patient queries

Alongside our brilliant Supporter Care and Digital teams, we have given advice, support and information to thousands of patients, their family and friends. Through questions and comments on social media, phone calls and emails, we have received hundreds of queries across a range of topics important to patients.

4. Lights, camera, action!

We have been busy producing a suite of videos illustrating various experiences of people with different types of blood cancer. These disease-specific videos will highlight some of the things people have found and felt along their cancer journey.

We have also been filming a suite of videos featuring our MAP, giving an overview of each type of blood cancer. Each clinician speaks about their own area of expertise, which allows us to showcase some of the leading clinicians in their field on our website alongside our information.

Due for release in Spring 2015, we hope all these videos will be a very helpful resource to anyone affected by blood cancer.

5. Patient Information Update and review

We have been working on a complete revision of our information about blood cancer. Although patient information is an area in which Leukaemia & Lymphoma Research 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. With that aim in mind, we set up brand 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 of our patient information.

We also organised a full design review working closely with the Creative Services and Insight teams. This included patient focus groups and canvassing the opinions of nurse specialists and clinicians. These, along with the results of PPN work, have led to a complete revamp of our patient information.

6. Supporting our Prioritising Patient Need programme

The Insight team have been working incredibly hard to develop the PPN programme this year: a landmark programme which has undertaken research and gathered evidence to identify and prioritise the needs of blood cancer patients. Whilst PPN is an ongoing programme, a huge amount of work has been done so far and evidence gained that will help us deliver patient benefit. The Patient Services team has worked hard alongside Insight to support the organisation and delivery of patient focus groups and interviews with blood cancer health professionals all across the UK.

7. Our first Patient Engagement event was an afternoon tea party success!

We held our first Patient Engagement event at a lovely central London hotel. Afternoon Tea was the order of the day – fancy cakes and dainty finger sandwiches were enjoyed, friendships forged and stories shared. For more about this event, check out our short blog here:

8. Representing Leukaemia & Lymphoma Research at national and regional events

We have attended and participated in a number of nurse study days, other charity patient events, patient groups, support groups and more, to raise awareness of who we are, and how we are supporting patients. We also learnt a lot from being involved in such a wide range of educational and social events, and we thank everyone who invited us to be a part, and who made us feel so welcome.

9. Sharing, sign-posting and working together

We are hugely excited about expanding, developing and delivering new areas of work to improve the quality of life for blood cancer patients. We are determined to do all that we can to keep the patient truly at the heart of everything we do. We recognise that there are other organisations charities and services already offering some excellent opportunities for information and support to patients. We are keen to embrace what’s already working well. We won’t waste resources in duplicating unnecessarily, and wherever we can identify an opportunity to support patients outside of Leukaemia & Lymphoma Research, we will ensure that patients have a pathway to connect them to other help. By working collaboratively and respectfully with other organisations, we can only strengthen the support that collectively we can offer blood cancer patients. We are excited to share, sign post and work alongside others wherever reasonable to do so.

10. A few quick facts and figures about our Patient Services activity in 2014

• 26 hospital visits to meet blood cancer teams, share our work, and find out more about how to support patients

• Over 500 patient queries answered, received across a range of mediums

• 750+ patients engaged with at various events, both Leukaemia & Lymphoma Research and external.

• 50,000+ Patient Information booklets sent to hospitals

• 2000+ Patient Information booklets sent directly to individuals

• 28 patients interviewed so far for our new videos

And looking to the future now…

We’ll have a couple of mince pies over the festive season to get back to full steam again, and then we intend very much to hit the ground running in the New Year, with an exciting and ambitious range of new projects to prepare, services to structure, and existing support to develop.

As ever, we will put the patient at the heart of all that we do, and we simply couldn’t do this without the support from people like you. The biggest part of the journey of Patient Services in 2014 has been patients, and their family and their friends. Thank you for reading this blog, and thank you for all that you do for Leukaemia & Lymphoma Research, in whatever way you are involved. It makes a massive difference.

Thanks again, and seasons greetings, from Reta, Jon, Victoria, Kate and Rebecca.



Great blog Jon!

We really did pack a lot in to 2014 and that can only be of benefit for patients going forwards. Keep up the good work!

P.S. I'm looking forward to seeing the final patient videos.

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