NET Patient Foundation has 5 key pillars of activity focused on improving the lives of those affected by Neuroendocrine Cancer : Support, Education, Information, Advocacy and Research.
As advocates we help raise the voice of patients, families and carers on healthcare issues related to Neuroendocrine Cancer – and the effect of diagnosis, treatment and care has for all involved on everyday life.
Advocacy activities include supporting patient rights, confidentiality / informed consent, patient representation, awareness building, support and education of patients, families and carers.
So we . . .
- listen – to what matters to you – your wishes, issues, questions and concerns
We can :
- support – help you explore your options, rights – your support and informational needs
- inform – help you to access information as you need it / updating when and where it is available
- provide – information to help you explore options and make informed decisions
- signpost & co-ordinate – help you to contact relevant people, or may contact them on your behalf
- give you a voice – may write letters and/or speak on your behalf, ask your questions, raise your concerns (especially in situations where you don’t feel able to speak for yourself or don’t feel heard) E.g. PIP application / appeal, health/social grant applications, housing, special days, etc . . .
- raise awareness – through campaigns, projects and educational events
- represent – your experiences, views and concerns regarding treatments (e.g. AWMSG, NICE & SMC)
- challenge inequality – in health and social care provision and policy
- and can, in certain situations, accompany you and support you in meetings or appointments.
We will :
- not make assumptions
- not be judgemental or disapproving of your decisions
- not argue with or coerce you into changing your decisions
- not make decisions on your behalf – we are here to support you in making your own decisions.
Neuroendocrine Cancer Community Advocacy Example : PRRT (Lutetium) 2015-2018
PRRT (Lutetium) was removed from the Cancer Drugs Fund (NHS access) in November 2015 – pending NICE review.
We engaged with NICE – providing testimonials, publications and your experiences as evidence of both the scientific and personal impact of living with Neuroendocrine Cancer – and the real-life difference this treatment makes.
We could only do this – on your behalf : for you and with you.
The outcome : after 2 and a half years PRRT (Lutetium) was approved (within marketing authorisation restrictions)
Neuroendocrine Cancer Individual Example :
PIP appeal :
PIP tribunals involve a face to face meeting with an independent panel – consisting of a doctor, judge and disability rights representative. Though relatively informal it can be a very stressful and emotional experience.
To make a decision, the panel go through your application and reasons for appealing : you are asked questions about areas of your life you may feel awkward, inhibited or anxious about disclosing – eg toileting habits.
However, this discussion is NOT to ‘catch you out’ but for the panel to better understand diagnosis and how it affects your day-to-day life – physically and mentally.
An advocate in this situation, can sit alongside you as ‘moral support’, and / or speak for you if you are having difficulty in getting your words out or across. But they must be your words, experiences & concerns.
Jane approached us for help with her PIP appeal – we provided information letters of support – and when the time came, a member of our nurse team was able to attend her tribunal meeting.
Jane spoke eloquently, a little tearful at times, but was honest, and somewhat embarrassed at, revealing aspects of her life she wouldn’t normally talk about.
The panel were sympathetic, kind and honest in return – about what they could or could not include / support in their recommendation.
Our nurse sat alongside Jane, but didn’t have to speak for her – just held her hand as she spoke and told them all she wanted to : the key points she felt she needed to be heard. Our nurse only needed to confirm our concern and support.
On leaving the room Jane burst into tears – she’d felt humiliated and was exhausted by the experience but also somewhat amazed to have got through it.
Within 48 hours Jane was informed that her appeal had succeeded and she would receive PIP – “Thank you so so much . . .I couldn’t have done it without you . . .and your support”