糖心Vlog

Patients suffering from the 鈥渕ost horrible鈥� rare brain tumour are falling through the cracks of NHS mental health provision, 糖心Vlog researchers have found.

A recent study which interviewed patients and clinicians has discovered that survivors struggle to access therapy available for other serious illnesses, such as cancer, and there was a lack of specialised support.

For the first time, the mental health of rare brain tumour patients was examined by psychologists and now researchers are calling for urgent changes to the health service.

Dr Katie Daughters hopes her findings 鈥�  - will lead to an expansion of mental health services to brain tumour patients, for doctors to receive vital training and for more specialised services to be created.

Dr Daughters鈥� work focussed on the impact of adult-onset craniopharyngioma 鈥� which typically affects 50-74-year-old鈥檚, although anyone older than 18 can be diagnosed with the tumour.

Craniopharyngiomas grow near the pituitary gland, a vital centre for hormone production, and the optic nerve, which is why patients often experience visual disturbances, weight increases and personality changes.

Fortunately, surgical removal of the tumour has a high survival rate, but the intrusive treatment can be just the beginning of a very long road.

Dr Daughters discovered that after physical treatment patients struggled to receive therapy or counselling 鈥� despite the illness causing widespread psychological difficulties.

Dr Daughters said: 鈥淢ost people have never heard of craniopharyngiomas, however, for those that have, they know how awful these tumours can be.

鈥淎n experienced neurosurgeon who took part in the study described these tumours as 鈥榓bout the most horrible condition I look after鈥�, while patients reported that they 鈥榙on't feel like I'm the same person I was before the diagnosis鈥�.

鈥淲e understand that patients suffer a poorer quality of life, but until now, we haven鈥檛 actually asked patients, and the people who treat them, how the tumour has impacted their lives outside of hospital.

鈥淲hat we learned is that the impact can be devastating and, importantly, this study shows they鈥檙e not receiving the psychological support they need.鈥�

As part of the study, Dr Daughters interviewed patients and doctors at the frontline of the rare condition.

Dr Daughters discovered depression and anxiety were extremely common among patients with many struggling to control their emotions, sometimes crying 鈥渁t the drop of a hat鈥� or angry for no reason.

While many patients had physical symptoms 鈥� like fatigue and weight gain- it was the impact of these on their social lives and ultimately their mental health that really concerned them.

Doctors and patients all said more needed to be done to help understand the psychological impact of adult-onset craniopharyngioma, and that simply hearing other patients鈥� experiences would 鈥渕ake me feel less of a freak鈥�.

With clinicians calling for more specialised mental health services in the long term, and to let craniopharyngioma patients access existing services currently available for cancer patients in the short term.

Dr Daughters added: 鈥淣ow we have a clear picture of the kinds of strengths and difficulties adult-onset craniopharyngioma patients experience in their day-to-day lives, we can design further studies to examine these processes and ultimately design new interventions to improve the social lives of these patients.鈥�