Due to the complexity of these cancers, the lack of collaboration amongst the different organisations working in this space and lack of funding available there is little to no awareness within the general public of Head and Neck cancers and their symptoms.  Patients and Healthcare specialists are frustrated and concerned by the lack of knowledge and awareness of these cancers amongst Primary Health Practitioners, who often misdiagnose the early signs of Head and Neck Cancers, leaving symptoms unaddressed until later stage.  On top of this there is a severe lack of NHS dental appointments in the UK, which further widens health inequalities and access to diagnosis.

We also don’t have enough data on who is getting these cancers, which treatments are working and why certain communities and population groups seem to be affected by these cancers and/or being diagnosed later stage.  This is partly because there is no Head and Neck Cancer national audit and this results in lack of data. Most other top 10 cancers (and Head and Neck Cancer is a top 10 cancer) have annual audits funded by the NHS in England, Scotland, Northern Ireland and Wales.

The lack of an audit on treatment approaches also means we don’t have the information needed to tackle the postcode lottery that exists with regards to access to fast track diagnosis (the 2 week wait referral), best treatment options and full post treatment support.  The area of post treatment support has been identified by patients and healthcare professionals alike as one of the top areas of unmet need.  There are differences between one neighbouring postcode and the next with regards to what equipment you receive and the offer of other support is unavailable or just insufficient (eg. physiotherapy support, dietician support, speech and language therapy, mental health support, carer support etc.)

There are a number of charities, clinician associations and individuals who are working in Head and Neck Cancers to try and address some of these issues but there isn’t cohesion of activities or voice. Oracle Head & Neck Cancer UK is currently the largest charity operating in this space so we have an opportunity to lead by example and make some real impact.  We also recognise that we cannot do this alone and we shouldn’t.  Each voice is important and by working with others we will have wider inputs, better perspectives and more resources to make a difference.  It is also very important that we stay close to the patients and listen to their needs.  We want to ensure that we listen to all types of patients, communities and groups so we hear experiences and perspectives across the diversity of patients. We also want to hear from across the multidisciplinary healthcare professionals who devote their lives to the care, treatment and research of Head and Neck cancers.  And we want to work with other charities, organisations and associations who are also trying to make a positive impact on the patient experience.   Oracle is a leading member and current Chair of the Head and Neck Cancer Coalition which was set up in 2022 with the aim of creating a more unified voice and more collaboration amongst key stakeholders in this space.

We work with and promote collaboration amongst the entire Head and Neck Cancer community so that we share best practice and work together vs. against or unknown to each other.  We can make sure that we all have a stronger and more united voice in calling out for the policy changes that will make a real difference in patients’ lives.  We can make sure that the messages are louder, more regular and more clear around the signs and symptoms of these cancers and where and how to get the support you need when you need it. We can make sure that we listen to the patients, to their carers and families, and to the healthcare professionals on the ground about how we can improve the patient experience so that their treatment journey and quality of life outcomes are as positive as possible.  We can make a real, positive difference to those affected by Head and Neck cancers.