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Finding a better way? Improving the quality of life for people affected by brain tumours

Report of a survey of people affected by brain tumours and their carers

Being diagnosed with a brain tumour is a life-changing event, and it’s one that affects families and friends as well as the person living with the disease.

Dealing with the impact of diagnosis, and the subsequent management of the cancer, is a difficult process and one that can adversely affect the health and wellbeing of the person with the tumour and those caring for them. Making sure that everyone has the best possible quality of life before and after diagnosis must therefore be the primary aim of healthcare professionals.

The Brain Tumour Charity works to make sure that the voices of people living with brain tumours are heard, and that the issues and problems they face are addressed. That’s why we have commissioned this wide-ranging survey of people living with the disease and their carers to find out what their experiences of diagnosis and care have been. Their responses sometimes make for difficult reading and, using their replies as an evidence base, we have developed four ‘calls for action’ with several recommendations for improvement.

Some of our key findings include:

  • 38% of people living with a brain tumour visited their GP more than FIVE times before being diagnosed. An early diagnosis can have a huge impact on the effectiveness of treatment.
  • Communications between healthcare professionals and people living with a brain tumour and their carers must be improved, including developing a more sensitive approach when making diagnoses, making sure questions are not left unanswered and signposting support services.
  • More than 60% of those living with the disease reported being given no information about care plans, counselling or financial advice. There need to be improvements in the availability of these services and the supply of information which people use to make informed decisions about their treatment and care, to make sure people’s quality of life can improve.
  • Carers and those they care for have different perceptions of how the symptoms of a brain tumour, and the side-effects of treatment, can affect their quality of life. This has clear implications for how healthcare professionals should discuss treatment and care with all parties, placing greater weight on how the tumour can affect quality of life beyond clinical outcomes.

More than 80% of carers said that caring for someone with a brain tumour had a negative effect onheir emotional wellbeing and more than half said that their duties had affected their jobs, hobbies and relationships with friends and the person they care for. Support for carers is often overlookedand healthcare professional should address this by taking a holistic view of support, making sure that carers are included in care plans.

The Brain Tumour Charity will use the findings of this report to take the next steps toward improving the quality of life for those who have the disease and — importantly — for their carers. We believe that our policies and campaigns on behalf of people living with a brain tumour must be evidence-based and be in accordance with the desired outcomes of the people that we represent.

That is why we are proud to present their views in ‘Finding a Better Way? Improving the Quality of Life for People Affected by Brain Tumours’ and why we will use the recommendations for improvement detailed in the following four ‘calls for action’ sections to drive our campaign to improve the quality of life experienced before, during and after diagnosis.