MIND the Gap Updates
1 The ESMO annual event is attended by clinicians, researchers, patient advocates, journalists and the pharmaceutical industry from all over the world to get together, learn about the latest advances in oncology and translate science into better cancer patient care.
Kym Winter (NPF’s Psychotherapist) presented data on the impact of living with Neuroendocrine Cancer. Compassionate & Honest Care. Getting it right from the start will set the climate for the patients care pathway.Click here to read the poster
2 MIND the Gap Survey – We’d like to find out more about your emotional wellbeing at the time of your diagnosis and afterwards.
Please take 5 minutes to complete this short survey.Click here to complete
This year we launched our new campaign, MIND the Gap ©, as we understand that the ongoing emotional burden of living with Neuroendocrine Cancer over time can go unrecognised and unsupported. Patients often feel isolated, exhausted, misunderstood and anxious. These psychological challenges can be compounded by the unpredictability of the conditions and its symptoms.
“I’ve had enough of going from pillar to post, and feeling exhausted. I keep thinking maybe it would be better if I was dead.”
MIND the Gap is focussed on helping Neuroendocrine Cancer patients carry not only the physical, but the psychological burden of disease. We are aiming to:
- Raise awareness of, and ‘fill the gap’ between hospital care and home
- Help patients accept the unpredictability of symptoms day-to-day and to live with the uncertainty, loss and tolerate the unknown
- Set up ‘Living with Neuroendocrine Cancer’ training sessions in the community, as many exist for general cancer survivors, but there is nothing specific for the Neuroendocrine Cancer community
- Provide helpful tools and written information for anyone affected by Neuroendocrine Cancer
- Publish data and recommendations on the particular issues affecting Neuroendocrine Cancer patients, to support the whole healthcare community
- Promote the need for ongoing wellbeing and quality of life evaluations from diagnosis and beyond
- Ensure patients have the right tools to help share emotional issues with their care team
- Undertake further research on the effects of psychotherapy support on physical symptoms in the Neuroendocrine Cancer community (67% of patients reported either improved emotional tolerance of difficult physical symptoms, or a decline in intensity of them over the course of NET Patient Foundation counselling sessions)
- Advocate for a truly collaborative, interdisciplinary approach between hospitals and community care
- Raise funds to keep providing specialist, flexible psychotherapy services via our charity for all who need it.
How you can help
In 2017, we launched our dedicated counselling service as it had become apparent that patients were often living with a significant degree of emotional distress as a result of their diagnosis and in living with an uncommon cancer. Many patients also reportedly experienced a range of difficulties in attempting to access more traditional sources of psychological support. We are working with our counsellors and other healthcare professional to address many of these issues but we need your help to support one of our ten MIND the Gap aims.
“I had been on a waiting list for counselling through local services for nearly a year. I live alone and was feeling at the end of my tether, so to be able to make contact and speak with you within a couple of days was a lifeline”.
We need to raise at least £25,000 to continue providing our one-to-one emotional support through our counselling service, which is why we need your help.
Supporting our MIND the Gap campaign is really simple. You can hold a fundraising event and let us know that you’d like the money you raise to go towards MIND the Gap or you could simply make a donation by following this link (just make sure you write ‘MIND the Gap’ in the personalised message box so that your donation goes directly towards the campaign).
Your fundraising could help change someones life so please get involved and help us to be there for more patients at their time of need.
“I never realised how much I needed to talk to someone or how much it would help. I would recommend counselling to anyone now, he has made me so much calmer and I feel so happy and at peace with having Neuroendocrine Cancer and going to have it forever but I know that I will cope now in a much better way and have lost the anger I felt about it. So I just wanted to say thank you for offering this amazing service and providing such great counsellor/s, it is really an invaluable service.”
Thank you so much for your support.