Hello, fancy seeing you here! April has been another action packed, exciting and interesting month for patient engagement, and across LLR as a whole charity. It’s given us an amazing, inspiring and informative Impact Day. We’ve had some really fantastic fundraising achievements and support, and we have been both sad to bid farewell to team members who have left for pastures new, and happy to welcome new faces into the fold :)
As Patient Engagement Manager, it is my job to make sure that patients are able to...well…engage with us! And that means building meaningful, valuable relationships right across the blood cancer journey. Clinicians, researchers, nurses and other professionals such as social workers, psychologists and fellow organisations, as well as of course patients themselves, and their friends, family and carers. Along with the wonderful team at LLR, I’ve been working to increase our reach across the patient population – to listen and learn from those supporting patients on a daily, weekly, monthly basis and beyond. And, as they say, the proof will be in the pudding: as we develop our support, review our Patient Information, and continue to understand patient need through our Prioritising Patient Need program, we will connect with more patients, and be available in relevant, meaningful ways in addition to what we are offering and how we are accessible now.
Earlier this month I was privileged enough to attend the preview tour of the new Palatine Unit at The Christie hospital in Manchester. A £12m new unit opening to patients in June, the centre is amazingly impressive and exciting and intends to transform treatment and care for teenage and young adult cancer patients and haematology and transplant inpatients. Whilst at The Christie, I met with Prof John Radford, as well as some of the excellent Clinical Nurse Specialists and Research Nurses. We spoke at length about patient need, and their input directly contributes to our exciting Prioritising Patient Need program, which will create a solid evidence base from which we can learn how to develop ourselves as an organisation for direct patient benefit.
I then sat on a ridiculously tiny train that seemed to take an eternity to reach my next destination: Cardiff. Here, I met with the brilliantly supportive Prof Chris Pepper. Prof Pepper’s work around chronic lymphocytic leukaemia is extraordinary, his dedication and passion for research and progress is amazing. He is a keen LLR supporter as well and spoke recently at our Impact Day. I interviewed him as part of our PPN program, and his feedback will be extremely valuable to us as we develop and move forward. My mini tour along the country’s (seemingly!) longest train journey also brought me to meet several patients along the way, with whom I spoke about LLR, and learnt a great deal from their experiences and time. An exhausting, but thoroughly worthwhile time promoting LLR, learning from experts (both professional and patients) and seeing some fantastic hospitals and their teams.
Everyone at LLR is working with the patient at the very centre of all we do. We are all working to achieve positive impact and benefit for patients around the UK and beyond, and we do this in many different ways that all complement each other. My way, at the moment, is getting out and about, meeting, talking, learning and growing the Patient Services team reach and reputation, along with the whole of the LLR reach and reputation. So, you may be seeing some more of me out and about. I am just off home now to pack my bags for Serbia, where I will be attending the CML Horizons conference alongside some truly amazing and inspirational international organisations and patients. Then, I’ll be back on UK soil whizzing about again on the great British rail network, visiting Colchester, Maidstone, Oxford and more. Check out where LLR are visiting in the coming weeks as part of our PPN program, to connect with patients and their families, and learn from everyone’s experience of blood cancer. Get involved, join a focus group, or just drop me a line and say hello. I am looking forward to meeting you!
Ways to get involved:
- For information about our exciting Prioritising Patient Need program, and to join a focus group, visit: http://leukaemialymphomaresearch.org.uk/research/prioritisation-patient-need/get-involved
- To join our growing online community of patients, friends and carers, and to access a range of quality Patient Information, visit: http://leukaemialymphomaresearch.org.uk/patient-support
- Drop the Patient Services team an email to say hello! You can reach me and the whole of the Patient Services team via email@example.com
Patient Engagement Manager