In Brain News, Brain Tumour Data, Press Releases, Research News

The Neurological Alliance’s third survey into the experiences of people across the spectrum of neurological conditions

This year’s survey received over 10,000 responses from people affected by a neurological condition, and highlights the gaps that exist for people living with a brain tumour.

We know from our daily interactions with our community that improving life at home, or in the community for people with a brain tumour and their families is vital. Good neurorehabilitation and psychological care improves quality of life and prognosis for people with a brain tumour; a better quality of life often means a better outcome.

But we know that this care is hard to get right. Despite generally having had excellent treatment, people remain feeling lost, confused and isolated. This is reinforced by this survey:

  • 70% of people have experienced problems or delays in accessing the services they need to help them manage their condition
  • Over 61% of people have had their contract of employment terminated because of their condition
  • Only one third have been asked about their mental well-being by a healthcare professional. And that less than half feel fully involved in making choices about your care.

The key findings of the survey are available here.

So what does this mean for us?

We will continue to focus on improving the transition point to community care after acute treatment and keep working hard to ensure that everyone who is diagnosed with a brain tumour knows about the range and quality of our support. Everything we do, from the one to one coaching we offer to the resources we produce, is designed to empower you to make decisions about your care, and live the life you want to following diagnosis. And we’ll be fighting to make sure your voice is heard at every level of brain tumour care.
What’s frustrating is that some of these are quick wins – clinicians and healthcare professionals just need to take 10 seconds to ask “what do you need to have an improved experience?’.  And you need to know what to say. Talk with brainstrust – we can help you articulate it.