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Written on 23rd August 2023 by Susan Brown

Recently published patient survey results by The Brain Tumour Charity and the NHS National Cancer Patient Experience Survey (CPES) have highlighted patients’ concerns about gaps and delays in their brain tumour care.

The surveys asked patients with brain cancer and brain tumours about their diagnosis and treatment experiences during 2022 and identified that many lacked information, coordination and specialist support, and experienced delays in obtaining referrals and diagnosis. When diagnosis was reached, patients often felt it was communicated insensitively and they were left without the support that they needed to meet their medical, emotional and financial needs.

How are gaps and delays in brain cancer care affecting patients with brain tumours?

The Brain Tumour Charity reported their survey findings from the care of 825 adult patients who were diagnosed or treated for brain tumours throughout 2021 and 2022.


The results showed that 78% of brain tumour patients were diagnosed within three months of first seeing a healthcare professional, but for 10% (1 in 10) it took more than a year to be diagnosed. 42% of those who sought help for their symptoms from their GP had to visit the GP three or more times to help them get a diagnosis. Nearly three quarters (74%) went to A&E about their symptoms whilst trying to get a diagnosis.

46% of those who responded had first been told about their brain tumour diagnosis by an A&E doctor who was not specialised in brain tumours. 17% were first told of their diagnosis by telephone or letter. 30% did not have a loved one with them when they were told, and 23% felt that they were not told the diagnosis sensitively.

Lack of information and support

Lack of information and support was a common theme, with 59% feeling that they needed more help to understand their brain tumour and what to expect. 46% needed more help understanding their treatment and 27% said their prognosis (expected outcome) was not explained in a way that they understood. Around a third of patients did not receive written information about their type of tumour (36%) or about their treatment (32%). Many could not easily access a clinical nurse specialist or key worker (43%), were not signposted to a charity team (39%) or needed more help to cope emotionally (58%). A very large proportion (84%) of brain tumour patients did not have all the support they needed. Nearly a third (32%) needed more financial help to be able to continue to live comfortably.

Nearly half (49%) of brain tumour patients needed more help accessing the right treatment and support, and more than half (57%) needed more help with managing their side effects and symptoms. 70% didn’t have a holistic assessment of their needs and an effective plan. Patients often considered and needed more help to explore different (45%) or alternative (43%) treatment options from those prescribed by their doctors. 37% of brain tumour patients said they had biomarker testing of their tumour for specific genetic information. 53% of patients participated in research, such as by donating tissue or genetic information. 12% took part in clinical trials.

Only 55% of brain patients strongly recommended their treatment team

Overall, The Brain Tumour Charity’s survey found that only 55% of patients who had been through a brain tumour diagnosis or treatment would strongly recommend their treatment team. A quarter of patients (25%) could not recommend their team. Patients’ experience ratings for specific aspects of their care were highest for radiotherapy and chemotherapy (67% positive, and 18% negative) and worst for diagnosis with fewer than half (48%) giving their diagnosis care a positive rating.   

The charity noted that brain cancer patients’ concerns about their treatment were reflected in the results of the NHS National Cancer Patient Experience Survey (CPES) for 2022, which was published in July 2023. The CPES is national survey which allows cancer patients to give feedback to the NHS on their treatment and care, with the aim of helping to improve cancer services across England. The CPES 2022 responses from patients with brain or central nervous system (including spinal) tumours gave brain cancer care the lowest rating of care across all cancer types. On a positive note, the CPES results showed some improvements in the proportion of brain tumour patients who felt involved in decisions about their care and treatment whilst in hospital (70.4% in 2022, compared to 58.9% in 2021) and those who felt they understood the possible long-term effects that their treatment could have on them before they started the treatment (60.6% in 2022 compared to 51.1% in 2021).

The charity noted that brain tumour patients are disproportionately under-represented by the CPES results, with only 211 responses in this year’s survey. They question whether this may be explained by the CPES survey’s exclusion of cancer patients with low-grade (benign) tumours or by the sad fact that many brain cancer patients may not live long enough after treatment to be able to respond within the timescales for the survey.

Hitting the target but missing the point

More recently, waiting time data for early 2023 suggests that faster diagnosis standards have largely been met. Figures released in June suggest that three quarters (75%) of patients who were seen with worrying symptoms received a brain tumour diagnosis or had the condition ruled out within 28 days of their GP’s referral. The charity remains concerned that, despite officially meeting national NHS targets, in June 249 people were left waiting more than a month to receive a brain tumour diagnosis or the ‘all clear’. Many people with brain tumour symptoms experienced difficulties in getting a GP referral (before the referral-to-diagnosis target clock started ticking), with many patients having to make multiple visits to their GP about their symptoms before getting a referral or diagnosis. This is a cause for concern, particularly for patients with fast-growing brain cancers whose survival and longer-term condition depends on timely diagnosis and treatment.

New standards for cancer diagnosis and treatment times

The government has recently confirmed that new standards for diagnosis and treatment of cancer will be introduced from October. The NHS’s existing 10 current targets for cancer will be consolidated into three key standards.

  • The 28-day faster diagnosis standard will require suspected cancer patients who are referred for urgent cancer checks from a GP, screening programme or other route to have a diagnosis or have cancer ruled out within 28 days.

  • The 62-day ‘referral to treatment’ standard will require patients who have been referred with suspected cancer and received a cancer diagnosis to start treatment within 62 days of their referral.

  • The 31-day ‘decision-to-treat to treatment’ standard will require patients who have had a cancer diagnosis and a decision made about their first or subsequent treatment to start that treatment within 31 days.

The new standards mean that GPs will continue to refer people with suspected cancer in the same way, but the targeted standard focusses on achieving the diagnosis or ‘all clear’ within 28 days, instead of simply getting a first appointment. It is hoped that the new faster diagnosis standard will enable the NHS to make greater use of technology and innovations to diagnose and treat cancer patients, including testing methods which do not necessarily need all suspected cancer patients to attend an appointment first.

Brain tumours and brain cancer

Brain tumours can originate in the brain or start somewhere else and spread to the brain as secondary tumours. Brain tumours which originate in the brain are often named after the type of cell from which they have developed. They are often described as low-grade or high-grade, depending on how abnormal the cells look when examined under a microscope.

High-grade brain tumours are malignant (cancer) and grow faster than low-grade tumours. They can cause problems by spreading into and damaging nearby areas of the brain, and the spinal cord.  Low-grade brain tumours are benign (not cancerous) and usually grow slowly, which means they may not cause symptoms for a long time. Some low-grade brain tumours need active monitoring to check their growth rather than immediate treatment particularly if they are not causing symptoms. Low-grade or benign tumours are not cancerous but can still cause injury to the brain when they grow by pressing on other parts of the brain and increasing the pressure within the skull (intracranial pressure). Low-grade tumours may not come back after treatment or can reappear or change and become high-grade (malignant) over time.

Brain tumours are graded from 1 to 4. Grade 1 tumours are low-grade, benign tumours which grow slowly and are unlikely to come back after treatment. Grade 2 tumours are also slow-growing, low-grade, benign tumours but may be more likely to come back after treatment or become malignant (high-grade) over time. Grades 3 and 4 brain tumours are fast-growing, high-grade, malignant tumours (brain cancer).

Which are the most common types of brain tumour?

  • More than half of brain tumours are gliomas, which can be slow-growing (low-grade) or fast-growing (high-grade). Astrocytomas are the most common type of glioma and can affect people of any age but are more common in older people.

  • Nearly a quarter (25%) of all brain tumours are meningiomas, which start in the meninges (the protective tissue covering the brain and spinal cord). Meningiomas are more common in women and people over the age of 35. Meningiomas are usually low-grade, slow-growing tumours, but a small number are faster growing. As this type of tumour grows slowly, often without obvious symptoms, they are often found during tests for something else, and when diagnosed may need active monitoring rather than treatment.

  • Lymphoma is a rare but fast-growing cancer of the lymphatic system, which is part of the body’s immune system and helps fight infection.

  • Haemangioblastoma is a rare, slow-growing (benign) tumour that develops from the cells lining the blood vessels in the brain.

  • Medulloblastoma is a high-grade (cancerous) tumour that develops in the cerebellum. Medulloblastoma is rare in adults but is one of the most common brain tumours in children.

  • Craniopharyngioma tumours affect an area above the pituitary gland and near the cranial nerve from the eyes to the brain. They are rare and usually slow-growing, but if diagnosis is delayed they can still result in permanent injury.

  • Other types of brain tumours affect the pineal gland in the centre of the brain, or the pituitary gland, such as adenomas.

Delays and mistakes in brain tumour diagnosis and treatment

Depending on the type of brain tumour, diagnosis of the condition may involve one or more investigations, such as MRI or CT brain scans, surgery and/or biopsy, biomarker testing (from biopsy), blood tests, eye checks, and other neurological examinations. Treatment options for brain cancer and brain tumours depend on the results of these diagnostic tests and can involve surgery, angiogram, radiotherapy and chemotherapy, active monitoring, or treatment of symptoms, such as anticonvulsants to prevent seizures or fits, or steroid medications to reduce swelling around the tumour. Post-treatment, brain cancer and brain tumour patients should be followed up regularly and their condition monitored with tests and scans.

Negligent delays, misreporting or misdiagnosis, or treatment errors can lead to permanent additional harm, from brain injury, blindness, or extravasation injury to premature death. Where the negligence results in a significant worsening of the patient’s disability or function, or the avoidable loss of their life, they or their bereaved family may be entitled to claim compensation.

If you have suffered severe injury as a result of medical negligence or have been contacted by HSIB/HSSIB/MNSI/CQC or NHS Resolution, you can talk to a solicitor, free and confidentially, for advice about how to respond or make a claim by contacting us.