Improving care for those affected by a brain tumour is a No Brainer!
We explain why a National Brain Tumour Strategy is needed to ensure that everybody diagnosed with a brain tumour is connected to the support they need across their whole pathway.
Receiving a brain tumour diagnosis can be life-changing event for an entire family. Being connected with the right support at the right time can help people diagnosed with a brain tumour – and their loved ones – navigate the challenges associated with this disease.
We know how much of a difference holistic support can make, hearing from what the brain tumour community tells us about when they have felt supported.
When Christine’s husband Ian was diagnosed with a glioblastoma, she said the support she received was invaluable. Christine praised the support she received – particularly as Ian’s needs developed – from district nurses, the palliative care team and especially their Clinical Nurse Specialist (CNS).
“Our CNS was such a massive source of comfort. Nothing was ever a stupid question and we could talk in confidence about whatever was on my mind. He really was amazing – I couldn’t fault him. We had a great rapport and he was incredibly supportive and understanding of just what a brain tumour diagnosis means. Ian the CNS knew we couldn’t predict what was going to happen and he always kept that in mind.”
But unfortunately, we know that not everyone receives the support they need. In fact, 85% of respondents to our Improving Brain Tumour Care surveys said they had unmet needs.
Making sure everyone who’s diagnosed with a brain tumour – and their family – receives the care and support they need is a No Brainer! If you agree, sign our open letter calling for a National Brain Tumour Strategy.
Not everyone receives the support they need
Patients and their families tell us that more can be done to provide better care and support in getting their diagnosis, to understand their treatment and care plans, and provide them with advice and better holistic support during after care and palliative care where needed.
Both the NHS Long Term Plan and the interim Major Conditions Strategy commit to ensuring care and treatment are better coordinated and integrated with the life individuals want to lead. They also commit to providing all cancer patients access to expertise and support through a dedicated Clinical Nurse Specialist (CNS) and a Holistic Needs Assessment (HNA).
But we know that for our community (patients with both high and low grade tumours), their needs often go unmet and care is not personalised.
When Niamh was diagnosed with a brain tumour, she felt that more should have been done to signpost support services to her.
“I wish support services, such as those offered by The Brain Tumour Charity, had been flagged up when I was diagnosed and when I really needed them. It would have made a massive difference to my life.”
Making sure that people like Niamh receive the support they need to live longer, better lives is a No Brainer! If you think so too, sign our open letter calling for a National Brain Tumour Strategy.
What else do we want to see in a National Brain Tumour Strategy?
Increased pioneering research into brain tumours
We need more money, more staff, more capacity and more incentives to attract diverse funders. Together we can make research breakthroughs a reality.
Faster, more efficient diagnosis
Faster diagnosis can prevent lasting harm. Let’s fix our broken system and help save lives through faster, more efficient diagnosis. Together, we can make it happen.
Access to new and better treatments
By ensuring people have access to new treatments and trials, we can offer hope. Let’s ensure that everyone has a fair chance at better treatments and brighter futures.