Bridging the gaps: how strategic charity partnerships are transforming head and neck cancer care

In this opinion piece, Danni Heath, director of the Get A-Head Charitable Trust, examines the current treatment landscape for head and neck cancer and outlines how collaborative funding models are addressing critical care gaps.

The statistics are stark and getting worse. With 17,000 people diagnosed with head and neck cancer annually in the UK, and patient numbers increasing by 30% per decade, we are facing a growing crisis that demands urgent, coordinated action. Yet despite these alarming trends, head and neck cancer consistently ranks at the bottom of treatment waiting time league tables, with just over 50% of patients receiving treatment within the recommended 65-day target, according to recent analysis by Cancer Research UK.

As director of the Get A-Head Charitable Trust, I have witnessed first-hand how the current healthcare landscape is failing our most vulnerable patients. After three decades of supporting people with head and neck conditions, our charity has raised more than £10 million, but the challenges we face today are more complex than ever before.

The treatment landscape: a system under strain

The current state of head and neck cancer treatment across the UK reveals significant systemic challenges. Unlike many other cancer types, head and neck cancers present unique complexities that extend far beyond clinical management. Patients face visible scarring, loss of speech, difficulties with eating and drinking, and profound psychological trauma – yet there is currently no widescale audit or clear picture of how these conditions are diagnosed and treated nationally, as our recent feasibility study funding has identified.

This absence of systematic monitoring has created a postcode lottery of care. In Tower Hamlets (an inner London borough), for example, the age-standardized rate for oral cancer is 21.5 per 100,000 population, compared to 13.5 for London and 13.2 for England as a whole, according to research by Oracle Head and Neck Cancer UK. These aren’t just statistics – they represent real people facing a 63% higher likelihood of developing oral cancer simply because of where they live.

Treatment delays compound these inequalities. Recent data shows that head and neck cancer has some of the longest waiting times of all cancer types in England, with dangerous delays that directly impact survival outcomes.

Critical gaps in current care provision

Through our work at Get A-Head, we have identified several critical gaps that charitable partnerships are uniquely positioned to address:

Research and innovation deficits: Despite advances in treatment technology, there remains insufficient research into rapid diagnostic techniques.

Take anaplastic thyroid carcinoma – a rare but highly aggressive cancer that comprises only 1–2% of thyroid cancer cases but contributes to 50% of thyroid cancer deaths, with an average survival of just 6 months, according to research by Hannah Nieto at the University of Birmingham (UK). There is currently no rapid genetic sequencing available to help clinicians target the most effective treatments quickly.

Support network inadequacies: The NHS simply cannot provide the comprehensive psychological and social support that head and neck cancer patients require. With Swallows Head and Neck Cancer Charity supporting more than 2,500 patients annually, the gap between clinical care and holistic patient wellbeing is vast.

Healthcare professional education: Surgical techniques continue to evolve, but funding for advanced training and research dissemination remains limited. Skull base surgery, for instance, carries significant risks, yet research into new techniques that could reduce complications often lacks adequate support for proper academic validation and distribution.

Data collection and analysis: Perhaps most critically, we lack comprehensive data on treatment outcomes, variations in care quality, and patient experiences across different regions and demographic groups.

How Get A-Head’s strategic partnerships are addressing these gaps

The traditional model of individual charities working in isolation is no longer sustainable or effective. At Get A-Head, we have fundamentally shifted our approach towards strategic partnerships that amplify impact.

Our collaboration with the Head and Neck Cancer UK Coalition CIC exemplifies this new model. By joining this influential group of 15 organizations as a director in April 2024, we are helping create “one strong voice for all those affected by head and neck cancers in the UK.” This isn’t just about pooling resources – it’s about coordinated advocacy that can influence policy and drive lasting change.

Targeted research funding with measurable impact

Our recent £40,000 contribution towards a £270,000 UK-wide audit feasibility study represents exactly the kind of strategic investment needed. Led by Professor Thomas Cowling at the London School of Hygiene and Tropical Medicine (UK), this research will use existing National Cancer Registration Dataset information to identify variations in care and outcomes. Once completed, it will provide comprehensive data showing differences in patient experiences based on location, NHS trust, treatment combinations and demographic factors.

This data-driven approach extends to our support for innovative diagnostic research. Our £24,089 grant to Hannah Nieto at the University of Birmingham is funding development of rapid genetic sequencing for anaplastic thyroid cancer using the revolutionary Oxford MinION nanopore technology. This portable DNA sequencer could transform how quickly patients access targeted treatments, potentially improving survival rates for one of the most fatal cancers.

Addressing inequality through community engagement

Our £29,700 partnership with Oracle Head and Neck Cancer UK tackles inequality head-on. Their research in Tower Hamlets, conducted with Queen Mary University of London (UK), uses Patient Public Involvement networks to work directly with community groups. According to Tamara Kahn, chief executive of Oracle Head and Neck Cancer UK, “The incidence of oral cancers in Tower Hamlets has increased by a third over the last decade“. This culturally sensitive approach recognizes that addressing health inequalities requires understanding the lived experiences of affected communities, not just clinical data.

Expanding patient support networks

Our progressive funding of Swallows Head and Neck Cancer Charity demonstrates how strategic partnerships can scale impact efficiently. Starting with £24,000 in grants in 2024 and increasing to £37,000 in 2025, we are supporting the appointment of a dedicated support group coordinator and the establishment of new groups across the UK which are critical to providing emotional wellbeing and support post treatment.

The future of collaborative care

The traditional model of fragmented charity work is insufficient for the challenges we face. Head and neck cancer patients deserve coordinated, evidence-based support that addresses not just their clinical needs but the full spectrum of physical, psychological and social challenges they encounter.

Through strategic partnerships, targeted research funding, and collaborative advocacy, we are building a more effective response to this growing crisis. The question is not whether we can afford to work collaboratively – it’s whether we can afford not to.

Author profile: Danni Heath joined Get A-Head as Director in February 2023. She has over 20 years of experience in helping organizations meet their goals and driving impact for stakeholders and beneficiaries. She is deeply committed to Get A-Head’s vision of seeing reduced rates of head and neck cancer, earlier diagnosis, effective rapid treatment, and the best possible quality of life following treatment for all those affected by head and neck conditions.

The opinions expressed in this article are those of the author and do not necessarily reflect the views of Oncology Central or Taylor & Francis Group.

No potential competing interest was reported by the contributor to this feature.