While we wait for a cure, we need to focus on how patients are supported beyond the hospital grounds

by Tina Mitchell Skinner Founder and CEO, Brain Tumour Support

At a recent meeting of the European Association of Neuro-Oncology (EANO) in Stockholm, Sweden, it struck me that within our community, in the midst of our desperation to find a cure for patients who are diagnosed with malignant brain tumours, we can often overlook the other important factors which arise as a result of a diagnosis.

Each time this community of clinicians, nurses, scientists, patient advocacy groups and other professions meets, we find that there is nothing new that we can report upon. More monies have been allocated to research and, as we wait for these outcomes, in the meantime what is happening to the patient?

This is the question which has been at the forefront of my mind since my own husband’s diagnosis.  As a charity, we focus on what is important to the patient and their family now. While we are waiting for a cure to happen, as a community we should be concentrating on how these patients are treated, how they are cared for, and what support is available beyond the hospital grounds.

The good news is that it was noticeable during this EANO meeting, which spanned over four days, that our community is finally getting it.

The programme dedicated a whole day to our wonderful Clinical Nurse Specialists who deliver such a fantastic service with limited resources and time. There were sessions focusing on better decision making, where families are at the centre of what is happening with their loved one. Moreover, we are also looking more into palliative care and seeking ways to optimise the correct delivery of such an important part of the service.

The mix of people being given the opportunity to present publicly at such a prestigious meeting is in itself an encouraging message for all to see. I was invited to speak as part of the Nurses Educational Day - thank you to Ingela Oberg for organising and to The Brain Tumour Charity for funding the day. It was a privilege to be given the opportunity to talk to others about the support services that the charity provides and the tailor-made Patient and Family Weekend that we organise.

Thank you EANO18, it was an inspirational meeting. I hope next year there will be even more of a focus on supporting patients.

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