Copies of the 2019/20 world edition of our “Brain Tumour” magazine have been landing in the letterboxes of subscribers in over 111 countries across the globe, free of charge.
[10 January 2019] The IBTA is delighted to announce that the next International Brain Tumour Awareness Week will be taking place from Saturday, 26 October to Saturday, 2 November 2019 inclusive. Now in its thirteenth year…
The All.Can initiative has presented the first findings of its UK patient survey at a UK Parliamentary event. They showed that 36% of people considered the cancer diagnosis stage as the biggest cause of inefficiency in their care. Two in five people with cancer had been initially misdiagnosed with something else – sometimes on multiple occasions – and one in five had to wait more than six months for a cancer diagnosis.
The findings were presented at the Britain Against Cancer conference, hosted by the All-Party Parliamentary Group on Cancer. The event took place on 4 December at the UK Parliament in London. The UK national initiative is the first of nine countries to release findings from the All.Can patient survey, which sought patients’ and carers’ perspectives on inefficiencies in cancer care.
All.Can is an international multi-stakeholder policy initiative that is focused on improving efficiency in cancer care, in which the IBTA is one of the stakeholder organisations. The UK national initiative is the first of nine countries to release findings from the All.Can patient survey. A report of the findings from all countries is due to be published in early 2019. Read more.
An Award that honours projects that help to tackle some of Europe’s most pressing health challenges has been presented to the European Cancer Concord (ECC), a pan-European collaboration of which the IBTA is a partner. IBTA Chair Kathy Oliver sits on the ECC’s Executive Committee. The European Health Award was established in 2007 to promote cross-border cooperation, multi-country working and the development of transferable initiatives which address current challenges with Europe such as disparities in health status, access to services and the provision of treatment.
The 2018 award-winning project, entitled ‘The European Cancer Patient’s Bill of Rights: A Catalyst for Change and an empowerment tool for cancer patients across Europe’ involves an equal partnership between cancer patients, healthcare professionals and cancer researchers.
Working in close partnership with European patient organisations and professional societies has been a key part of the initiative.
One of the key outputs from the research has been the development of a 70:35 Vision: 70 per cent long term survival for all cancer patients across Europe by 2035. Professor Peter Selby, President of ECC and Professor of Cancer Medicine at the University of Leeds said: “Our 70:35 Vision is built upon the pillars of cross-border and interdisciplinary cooperation, sharing best practice and ensuring that research and innovation gets translated for the benefit of patients.
“This is a superb example of how cooperative European activities that involve sharing best practice between countries can result in top class prize-winning initiatives.”
Following news of the announcement, Margaret Grayson, cancer survivor and Chairperson of the Northern Ireland Cancer Research Consumer Forum, said: “The news that the European Cancer Patient's Bill of Rights has received a top European award is wonderful. This collaborative initiative has patients absolutely at its centre.”
The IBTA is delighted that the ECC has been recognised and honoured with this prestigious award.
The European Cancer Concord (ECC) is an equal partnership:
- Professor Peter Selby, University of Leeds, UK and President European Cancer Concord
- Professor Mark Lawler, Queen’s University Belfast, UK and Vice President European Cancer Concord
- Professor Ian Banks, Chair European Cancer Organisation (ECCO) Patient Advocate Committee, Brussels, Belgium and Vice President European Cancer Concord
- Professor Thierry Le Chevalier, Chair, European Cancer Concord Executive Committee, Institut Gustav Roussy, Paris, France
- Professor Francoise Meunier, Director of Special Projects, European Organisation for Research and Treatment of Cancer (EORTC)
- Kate Law, Director, Lister Institute for Preventative Medicine, London, UK
- Peter Kapitein, President, Inspire2Live, Amsterdam, the Netherlands
- Dr Tit Albreht, Coordinator of the Joint Action iPAAC, National Institute of Public Health of Slovenia,
- Dr Sakari.Karjalainen, President of the Association of European Cancer Leagues, Helsinki, Finland
- Kathy Oliver, Chair and Co-Director of the International Brain Tumour Alliance, London, UK
- Dr Sarper Diler, President Myeloma Patients Europe, Istanbul, Turkey
- Professor Carlo LaVecchia, Professor of Cancer Epidemiology, Università degli Studi di Milano, Milan, Italy
- Professor Christoph Zielinski, President of the Central European Cooperative Oncology Group, Vienna, Austria.
In the third in our series about the first formal meeting of the newly-formed Society for Neuro-Oncology Sub-Saharan Africa (SNOSSA), held in Abuja, Nigeria on 22-23 July, 2018, Ngong Jasino Tabali J, a public health specialist and brain tumour patient advocate with Jacob’s Hope Foundation (Cameroon) gives his reflections on the event:
The inaugural SNOSSA meeting saw the coming together of healthcare professionals in the field of neuro-oncology together with patients, patient advocates, caregivers and others. At this first gathering, in Abuja, Nigeria, we witnessed the bridging of the gap between care providers and caregivers and advocates – all brought together to the same platform to share experiences and best practices.
The problems discussed were wide-ranging and included those of a clinical nature, as well as issues surrounding advocacy, the caregiver’s perspective and public health policy as it relates to brain tumour management. Observing and learning about the issues faced in different sub-Saharan Africa countries showed that common topics were:
- challenges of brain tumour and spinal surgeries
- lack of baseline data on brain tumours
- the ratio of patient to neurosurgeons/neuro-oncologists
- missed diagnoses and the low rates of second opinion referral
- under-availability of specialists (e.g. neuropathologists) in the diagnosis process
- poor identification of a country’s needs by ministries of public health
- misappropriation of funds
- inadequate communication strategies and platforms
- lack of necessary technical support for the maintenance of equipment such as radiotherapy machines and MRI
- behavioural patterns of care providers and the relation to quality brain tumour care
- the sharing of data on successes and failures in brain tumour care
Issues affecting brain tumour care, especially paediatric glioma, were the focus of much of the discussion, with different neurosurgeons sharing their experiences and explaining advanced techniques and technology that can improve care for brain tumour patients. Best practices were also shared from a variety of specialists from different countries.
It was recognised that multidisciplinary teams are very important in the fight against brain tumours, much like they are for other diseases affecting sub-Saharan Africa. Patient advocacy is neglected in brain tumour care, as it is in other public health problems.
Networking between all stakeholders is one of SNOSSA’s strengths. Different parties sharing their point of view is the catalyst for the provision of best care.
Multidisciplinary teamwork results in better communication, especially regarding the needs of patients. This could be done through:
- sensitisation to brain tumour issues and provision of adequate information, with improved links to care, second opinion and referrals
- providing information on therapeutic options (whether locally available or not) which allows patients and families to be fully informed and seek alternative therapeutic options
- challenging the stigma and discrimination associated with brain tumours in the African context, which causes communication difficulties
- building connections between other patient advocate groups in Nigeria and across sub-Saharan Africa and sharing best practice on how to confront common bottlenecks in relation to stigma.
The SNOSSA meeting delegates found that there is a need for change in behavioural patterns among brain tumour care providers in sub-Saharan Africa – towards one another and towards patients – to overcome major roadblocks in providing quality care. Additionally, certain care providers don’t share information and are slow to refer. A theme emerged at the conference that there can be an attitude for care providers to appear as ‘demigods’ in front of their patients and they are not always open to refer for a second opinion on diagnosis and therapy. These behaviours lead to a breakdown in communication and vital information is lost. Delegates highlighted that some patients die early as a result of these failings.
From a caregiver’s perspective, it was felt that once the diagnosis of a brain tumour is made, healthcare professionals, patients and caregivers should together discuss all of the treatment options thoroughly. For example, no information is often given on the risks involved with and without surgery.
Delegates also said that information is not the same as knowledge: the source of knowledge is experience, and this experience is better fortified and valued when shared. There is also a need for brain tumour care to be patient-centred. A change of attitude to reflect this improves quality of care, referral, use of available and affordable therapeutic options and optimisation of time for better decision making.
Communication between all stakeholders on different platforms and media channels was felt to be very important. Communications through scientific journals, which is where most information on brain tumours is found, are not accessible to everyone: some articles must be purchased, and the scientific language could be very difficult to understand for the layperson. There is, therefore, a great need to freely share information in understandable language that is available at easily accessible sites, thus offering a great benefit to those who are most in need.
I feel that SNOSSA is adopting the best way forward: getting everyone involved at different levels of brain tumour care for the benefit of patients and caregivers in terms of their quality of life, and for scientific advancement.
In the second in our series about the first formal meeting of the newly-formed Society for Neuro-Oncology Sub-Saharan Africa (SNOSSA), held in Abuja, Nigeria on 22-23 July, 2018, nurse and brain tumour patient advocate Derick Agbor gives his reflections on the event:
The first SNOSSA meeting was an event that brought great minds together to ponder on the achievements made so far and the way forward for brain tumour care. Improving the quality of care while equally advocating for people suffering from brain tumours/cancer was a key note of this meeting.
The first day of the SNOSSA conference was marked by presentations of different diagnostic and therapeutic procedures of gliomas. A high rate of success in diagnosing and treating these conditions was demonstrated by all the speakers, thanks to advanced techniques they employ. Notwithstanding, numerous situations still exist that make it difficult for patients to be diagnosed early and to access care.
Time and energy were focused on deliberating the challenges faced by brain tumour and cancer patients in various countries of Sub-Saharan Africa, whose cases often go unnoticed or are misdiagnosed. So many reasons were put forward by delegates, amongst which is the lack of knowledge about brain tumours and different types of cancer in sub-Saharan Africa communities
Poor health policies in some countries are making it difficult for people to access care, due to monopolies and bottlenecks. Moreover, in some countries there are very few publications that address brain tumours/cancers, which are a means by which individuals can enrich their knowledge on brain tumours. To some extent, advanced technology for the handling of cases is absent in many countries and even when it is available, paying for equipment maintenance is an ongoing issue. Financial difficulties are a key reason for these problems and very few citizens can afford this advanced care. This is a major reason why referred patients always can end up not going to treatment centers to receive care.
It was felt that individuals’ belief systems are equally a barrier to care, since many people will prefer traditional therapy or visit ‘men of God’ because they believe that brain tumours have a spiritual origin. Most importantly, there is always the tendency in the majority of cases for health care providers at the peripheral level to misinterpret the diagnosis of a brain tumour. This is seen in the numerous patients who visit many health facilities with their brain tumour going undiagnosed.
Deliberations continued into the second day, which explored bridging the gap that keeps people away from care. Some major conclusions were made. These included making efforts to intensify communication in the community through social media and all avenues necessary. Getting stakeholders in brain tumour care to be part of this sensitisation movement may go a long way to bring an end to the bottlenecks that exist. It was felt that learning from brain tumour advocacy strategies practiced in other countries would make it easier to develop a model that will work across the region. Furthermore, it was highlighted that a multidisciplinary strategy is very important in the future fight against brain tumours and other cancers.
With the current challenges faced today in brain tumour care in Africa, this meeting was ideal ground for fruitful deliberation on the way forward.