You’re tired of being asked questions about what it’s like living with a brain tumour and not seeing any real change or improvement afterwards. We call this ‘weighing the pig’; it keeps being weighed. Now it’s time for change.
After years of listening to you, the people that need us, and reviewing the journey that you face following a diagnosis, we’ve been able to pinpoint changes that need to be made during your care. Changes that will improve your quality of life.
You’ve told us that lack of information and support during recovery, for instance, is a real issue. So we’ve focused on improving the delivery of neuro-rehabilitation in order to address this. Our recent publication Quality of life: what the brain cancer community needs outlines the current gaps in neuro-rehabilitation and proposes changes that will ensure you’re better informed about the progression of the disease and about what rehabilitation options are available/what their purpose is.
Asking you to share your experiences has been a vital process. The interaction within the community that we’ve built together has not only helped us identify the specific problems that need changing, it has also helped you have greater understanding of the challenges that you face.
The helpful and supportive sharing within the community is essential, but we know it’s not enough.
You need specific resources that will enable you to be more resilient when faced with challenges of recovery and personality change and it’s time you had them.
You’ve helped us to identify what’s needed and we’re, as always, working on meeting your needs. You’ve told us for example that fatigue is a big challenge. You’ve told us that you want to be more informed about personality change. And you’ve told us that you want to have better conversations with your healthcare team. We’re developing and delivering additional resources that address these challenges, alongside the ones that have always helped you feel less alone and less affraid on this journey. The resources will include helpful information which will enable you to cope with the specific day to day challenges such as fatigue and personality change, workshops that build resilience and put you back in control. We’re working with leading clinicians to implement guidelines at a strategic level. And on a one to one basis, brainstrust will continue to support its community to build resilience through coaching.
We know that you’re desperate for more information about what to expect when living with a brain tumour. We also know that you need more understanding about what could happen in the time ahead, so that you can be proactive and not reactive. And, we know too that the current lack of information is having devastating effects upon your quality of life.
Remember, we’re always here.
It is important that we work together to fill in the current gaps in treatment. If you’re encountering a problem following diagnosis then please share it immediately and be specific about what you need.
Ask yourself this question- ‘what is it that I am struggling with the most?’ Once you have an answer, you’ll find it easy to define what is needed.
Now, be proactive- You’ve identified the problem, don’t try and fix it yourself. Share it with us and share it with a health care professional; together we can help fix it.
Start to take control of your situation. More control equals better outcomes.
And remember, we’re here to help 24/7. firstname.lastname@example.org
Visit ‘Quality of Life’ and ‘Clinical Research’– new sections of our campaigning page that we launched today in order to understand why our commitment to putting the needs of patients first is so important. Together we’re putting the world right, the right way.
To download our new report, click HERE.