BRIGHTLIGHT Team reflections on 2017 05/02/2018

We’ve been reflecting on 2017, which was an incredibly busy year for us but our conclusion is 2017 was AWESOME!

As a team we have reached a new depth of working, which has led us to developing a wider breadth of collaboration across the UK TYA teams, as well as forging new collaborations with healthcare professionals and patients in the sarcoma world. Thank you all for working with us and we look forward to building on this in 2018.

So looking back on the last 12 months; most of these events are reported in detail in earlier blogs so we will just provide our brief reflections (and a few photo highlights!)

 

From top left moving clockwise: The whole team at the joint BRIGHTLIGHT-TYAC Conference in July; some of the team at the AYA Conference in December; members of the Contact Youth Company performing ‘There is a Light’; and the stage being set for the performance of ‘There is a Light’ at the NCRI Conference in November. 

 

January onwards: the work we did with Brian Lobel, Contact Youth Company and team in creating ‘There is a Light’ has to be one of the most impacting experience for all of us; not just the research team but we know the cast became emotionally attached to the performance as well. The evaluation of the performance is currently being drafted but in summary from March to November 2017 there were 11 performances in Manchester, Brighton, London, Oxford, Liverpool, Edinburgh and Birmingham. ‘There is a Light’ played to over 1,200 people including delegates of the Royal College of Nursing (RCN) International Research Conference and National Cancer Research Institute (NCRI) Annual Conference, and young people with cancer attending ‘Find Your Sense of Tumour’ (FYSOT). We want to thank the Wellcome Trust for funding the development of the performance, RCN, NCRI and Teenage Cancer Trust for allowing us to perform at their conferences, and a special thanks to Wendy McInally, Napier University and Macmillan Cancer Support Scotland for enabling Contact Young Company to go to Edinburgh so we could spread the BRIGHTLIGHT message north of the border.

There is a Light was filmed by a team at Salford University who made a documentary, ‘Finding the Light’: click here to view the documentary.

In May we were nominated for the Excellence in Cancer Research by the RCNi. We didn’t win, that honour went to Julie Hoole from Calderdale and Huddersfield NHS Foundation Trust. Being nominated was fantastic and it was a good excuse for us to have an excellent team night out.

In June we collaborated with TYAC for their annual education day. Over 2 days BRIGHTLIGHT made afternoon presentations from each of the BRIGHTLIGHT studies (to view a blog of this conference please click here). While we weren’t able to present the definitive answer everyone was looking for, we were able to give everyone a taster of what was to come, and get valuable feedback of things to think about this year.

BRIGHTLIGHT aside, we’ve had lots of activity on our other associated projects. Our Teenage Cancer Trust funded work evaluating FYSOT and exploring the online needs of young people with cancer has come to an end so we’ve been busy completing analysis, writing reports and getting ready to share the results with you (although we have presented some parts of this at the NCRI and AYA Global Congress: listed in our resources section of our website).

We have also started the development of sarcoma-specific patient reported outcome measure: the Sarcoma Assessment Measure (SAM). The first stage of this has been to understand patient’s experiences of being diagnosed and living with cancer. Thanks to Sarcoma UK, Bone Cancer Research Trust and the 12 NHS Trusts who recruited to the study. We had an amazing response to this first stage, with 121 people taking part in interviews/focus groups. Development of SAM based on these interviews is underway, with recruitment starting at the end of February (please contact us if you would like to be involved). In the meantime, Ana is immersing herself in the interview transcripts so we can fully represent patient’s experiences of living with sarcoma. There is more information to come about the SAM project and other affiliated studies on our website soon. 

The year ended on a high, we had tour 2 of There is a Light accompanied by invitations at two international conferences. Jeremy hosted a session on “Delivering high quality care for young people with cancer” at the NCRI where Rachel presented key findings about the cohort. The team also had five poster presentations at the conference. The year ended with the 2nd AYA Global Cancer Congress in Atlanta, Georgia. The AYA Congress has become the highlight of our year attracting over 300 healthcare professionals from around the work who are interested in TYA cancer care. Jeremy and Rachel presented “BRIGHTLIGHT: AYA Programmes Adding Value” and the team had nine posters presenting various aspects of our work. The program was so busy we didn’t get to meet all the people we wanted to meet or see all the posters we wanted to view; so we hope they will be made available online.

Looking ahead, this is going to be one of the most important years for TYA cancer care. The James Lind Alliance (JLA) priority setting results were released in January – if you would like to read more about the JLA and view the top 10 priorities, head to their website via  this link. In addition to this, commissioning plans for TYA services will be revealed in April; and at the end of the year we will be able to answer the all-important question: Do specialist cancer services for TYA add value?

2017 ended on a high and we want to thank everyone we have worked with, and open our doors in 2018 to those who would like to collaborate with us.

©2020 This website presents independent research funded by the National Institute for Health Research (NIHR) under its Programme Grants for Applied Research Programme (Grant Reference Number RP-PG-1209-10013). The views expressed are those of the author(s) and not necessarily those of the NHS, the NIHR or the Department of Health.
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