One of the important areas is research with children and young people.
Lizzie and I caught up with Krys Castro to ask her about her work in this area.
I work with the NIHR Clinical Research Network as the senior research nurse for the Division 3 in the West Midlands. Paediatric health research is one of the specialties that we cover. I manage and lead a team of research nurses supporting research involving children across the West Midlands. I have always been passionate about Palliative Care, I think this stems from when I was in Oncology as a chemotherapy charge nurse and it’s always been my dream to do research in children’s hospices and palliative care.
Children and young people in the children’s hospices should have the same opportunity of being involved in research as adult and young people patients in NHS services. Even if eventually they decide not to be involved, the opportunity is there. Benefits include improved and continuous quality of care as well as professional development of staff.
Some of the challenges are that research feels new or still developing. Whilst many hospices are actively involved there are other issues such as training and education, availability of researchers able to undertake research plus funding and recruitment to studies. Ethical issues such as carrying out research with life-limited children and their families is also reported.
To address some of these issues I have been doing lots of networking and talking to people who are experts in the field. I have also delivered ‘Introduction to Good Clinical Practice’ to local hospices and paediatric registrars. We have also visited Acorn’s Hospice, Donna Louise Hospice and Hope House Hospice. I am developing a questionnaire that I will send out to the local children’s hospices to ask about their individual training needs and also other relevant questions to help them to be ‘research-ready’. I am hoping that the result of the survey will enable me to set a training package, with the help of the WM workforce development lead, Hannah Reay, tailored to the needs of the hospices.
When we have this conversation again in ten years time, what would you like to see having been achieved?
There will be studies that we can talk about, looking at the benefits that the hospices had gained from the work we have done in last 10 years. Maybe palliative care as one of the recognised specialties or randomised controlled trials being done in children’s hospices?
If not now, when?
The NIHR Clinical Research Network: West Midlands helps to increase the opportunities for patients to take part in clinical research, ensures that studies are carried out efficiently, and supports the Government’s Strategy for UK Life Sciences by improving the environment for commercial contract clinical research in the NHS in the West Midlands. We are passionate about the contribution that clinical research can make to patient care, and work collaboratively with other NHS providers to translate that passion into the effective delivery of studies in the area. We make sure that clinical research occupies the place it deserves to in the day-to-day work of the NHS across the West Midlands locality. This includes Trusts, primary care organisations and any other qualified providers of NHS services.
To find out more visit: https://www.crn.nihr.ac.uk/west-midlands/
Hospice UK is national voice of hospice care in the UK, working closely with our members to support their work and to advocate and raise awareness of hospice care. We believe that everyone matters all the way through their life until the moment they die, and that no one should die in avoidable pain, suffering or emotional distress. We want to make sure that everyone with a life-limiting or terminal condition gets the very best care, and we believe hospices are critical to achieving this.
To find out more visit: https://www.hospiceuk.org/
Together for Short Lives is Together for Short Lives is the UK charity that, together with our members, speaks out for children and young people who are expected to have short lives. Together with everyone who provides care and support to these children and families, we are here to help them have as fulfilling lives as possible and the very best care at the end of life. We can’t change the diagnosis, but we can help children and families make the most of their time together.
To find out more visit: http://www.togetherforshortlives.org.uk/
Sarah Russell: Head of Research and Clinical Innovation, Hospice UK @learnhospice @researchospice
Krys Castro: NIHR CRN Senior Research Nurse, West Midlands @krystin2311
Lizzie Chambers: Development Director, Together for Short Lives