MIND the Gap
For many NETs patients it is not only the physical symptoms of Neuroendocrine Cancer that can take their toll but also the emotional effects of diagnosis that can be stressful and exhausting. When confronted with the spectrum of challenges a cancer diagnosis brings many people find the treatments and support they receive may primarily address those physical symptoms – but leaves a gap when it comes to ongoing emotional support.
The Ann Edgar Charitable Trust (TAECT) is delighted to now join with our partner organisation – Neuroendocrine Cancer UK (NCUK) – to offer extended support to help Neuroendocrine Cancer Patients carry not only the physical, but also the psychological burden of disease.
The MIND the Gap project has been run for the past 2 years by NCUK and aims 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 uncertainty and loss
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 provide specialist, flexible counselling services for all who will benefit.
A key component of MIND the Gap is the offer of a free counselling and support service to those in need. Speaking with a specialist counsellor, trained to provide support and assistance to those coping with a NET diagnosis, can help to ease anxiety. The service is available to NETs patients, their carers, family and friends, affected by a NET diagnosis. In Scotland the service has been historically funded by NCUK, but now will be funded by TAECT, and by NCUK throughout the rest of the UK.
Perhaps you may not previously considered counselling as an option, perhaps being unsure of how it might be of help to you following diagnosis? Or perhaps you are a family member or carer, also bearing the burden of strain and anxiety that a cancer diagnosis of a loved one can bring? There are many sources of information on the benefits counselling can provide, and you can find further information on NCUK’s MIND the Gap web page, where you will also find instructions on how to make contact with the NCUK counselling service and apply for counselling assistance.
Full details of how the service operates can be found here... We hope you will find the service helpful.
Links to other useful resources can be found on this page....
Corona Virus covid-19
Currently, we all are experiencing a most serious threat from the Covid-19 virus. As a result, the Trust, in common with all other charities, has had no chice but to suspend meetings and other operations until such time as the authorities indicate it is safe to resume. It is a time for level heads and for following directions intended to protect our safety.
National news and media will continue to report on the development of the crisis. At this time we are not aware of any special extra measures that NETs patients need to be aware of. We list below some web links where relevant information may be found.
19 Dec 2020
We have all been heartened to learn of the development in recent weeks of several vaccines for Covid-19. The Trust has not learned of any concerns about the vaccines that NETs patients especially need to consider and we would encourage all patients to accept the vaccine when offered.