Supporting patients at every stage of living with head and neck cancers

Wendy Robson

Wendy Robson, lead head and neck clinical nurse specialist at University Hospitals of North Midlands NHS Trust, shares her perspective on how her role supports the multidisciplinary team to care for patients living with head and neck cancers

Before, during and after treatment for head and neck cancers, the care pathway is complex and often overwhelming for patients. Without support, patients often have anxieties around cancer care and concerns related to employment and finances.

The Beyond Clinical Outcomes: UK patient experience in head and neck cancers survey report of patients living with head and neck cancers focused on how these cancers affect people and what they valued from cancer care. The report was funded by Bristol-Myers Squibb (BMS) and co-developed via a three-way partnership between BMS, The Swallows Head and Neck Cancer Patient Support Group and the Mouth Cancer Foundation – two charities that provide support and advice to patients living with head and neck cancers.1

It identified a need for an engaged multidisciplinary team to be involved throughout the patient pathway. Wendy Robson, head and neck clinical  nurse specialist at University Hospitals of North Midlands (UHNM) agrees, stating that “we provide holistic support from day one regarding treatment and every other aspect of a patient’s life that is affected by a cancer diagnosis”.

Ms Robson and the team at UHNM are driving best practice care for head and neck cancer patients that aligns to national guidelines, offers support throughout the care pathway and helps patients return to their day-to-day lives at their own pace. Ms Robson’s responsibilities are usually split between meetings with the multidisciplinary team, oncology clinics and wards.

The team is formed of a range of specialists who work collaboratively and are engaged at each stage of head and neck cancer care.

  • Consultant oncologists;
  • Ear, nose and throat surgeons;
  • Clinical nurse specialists (CNSs);
  • Lymphoedema nurse specialists;
  • Oral and maxillofacial surgeons;
  • Restorative dentists;
  • Clinical psychologists;
  • Radiologists;
  • Speech and language therapists;
  • Dieticians;
  • Histopathologists;
  • Physiotherapists.

Continuity of care

With the CNS team helping to coordinate the multidisciplinary team and ensuring all members continually communicate with each other, they help enable the whole team to provide joined up care for patients from diagnosis to post-treatment care.

The CNSs lead an allied health professional clinic, managing patients who are new to the clinic and those on the ward. Key members of the multidisciplinary team are present at the clinics, which ensures patients receive specialist support in a prompt and timely manner. The team prepares patients for care before and after diagnosis and treatment – this can include surgery, radiotherapy, or chemotherapy.

The report found that 32% of patients surveyed self-reported difficulties eating a balanced diet and 37% experienced communication challenges, highlighting the need for support when dealing with functional changes and physical disfigurement caused by treatment and surgery.1

Therefore, the CNS provides patients with a resource pack and coordinates pre-treatment care in collaboration with dieticians and speech and language therapists to ensure appointments are in place to support:

  • The patient’s current standard of nutrition and whether tube feeding may be required;
  • Challenges with verbal communication and functional changes patients may experience following treatment, such as issues with swallowing;
  • The social concerns a patient may have, by referring them to the appropriate services for financial support and advice on how to return to work after receiving treatment.

After a patient has received treatment for their cancer, they return to the clinic to discuss potential concerns when returning home. These can be clinical or non-clinical, demonstrating how central the CNS is to providing continuity of care for patients.

The CNS coordinates post-treatment care by referring patients to the in-hospital Macmillan Cancer Support Centre and community-based care services to help patients return to their everyday life. The ongoing post-treatment care provided by UHNM is vital, as the potential side-effects, primarily resulting from radiotherapy and chemotherapy, can be challenging and may take years to manifest and affect a patient’s quality of life.

Going one step further, Ms Robson explained that currently at UHNM, patients usually attend the follow up clinic for up to five years. “We support them from their first day in the clinic and we constantly communicate as a multidisciplinary team to ensure we can provide continued care through each stage of cancer.”

The CNS orchestrates additional support services for patients living with head and neck cancers that go beyond standard care, demonstrating commitment to patients.

The buddy system

At UHNM, patients are buddied with volunteer patients who have been through the clinic and experienced similar care. This support system is split between head and neck cancer, laryngectomy and thyroid specialties, with buddies participating in a Macmillan training course to be able to provide an additional level of support for patients whenever it’s needed.

Caring for carers

Carers are often a group that can feel less supported in the care of loved ones. The recent report showed only 7% of patients surveyed received any type of domestic carer support.1 Carers form a key part of the support network for patients with head and neck cancers and Ms Robson invests in building relationships with them to make them feel supported. The CNS team support carers in between consultations with the multidisciplinary team by hosting social events at UHNM, that focus on the health and well-being of patients.

Psychological support at UHNM

Another finding from the report showed less than half of patients (46%) reported that they were offered services for emotional and psychological support.1 UHNM provides additional psychological support for patients dealing with head and neck cancers. CNSs undergo advanced communication skills and level 2 psychological support training to be equipped with the vital skills to have difficult conversations, such as communicating a diagnosis or a change of treatment plan, as well as helping patients to overcome the physical disfigurement that can result from treatment or surgery. If a patient requires further support, clinical psychologists are available to help patients living with head and neck cancers throughout the care pathway. It’s a great example of how important an engaged multidisciplinary team is in the care of patients.

Putting the patient at the centre of decision making

Of the patients surveyed, 16% did not feel very involved in decisions made by the lead health professional, and this is something UHNM meets head on.1

Putting patients at the centre of a treatment decision is made more complex by the multitude of factors affecting a patient who has undergone, or is undergoing, treatment for head and neck cancer. As the survey demonstrates, there are a number of unique psychological and physical factors to consider alongside new therapeutic advances that have been introduced to
the treatment landscape. From surgery through to post-treatment care, CNSs help to build a care pathway that is right for each patient given their everyday challenges. By providing rationale and advice for each treatment option, the patient is included in the decision-making process and feels engaged in their care.

The CNS not only plays a key role in coordinating the multidisciplinary team, they also ensure that services support patients so they can carry on living their lives, “from managing referrals to speech therapists, dieticians and dentists, to providing support for carers and buddying patients up with other patients, we play a part in patient survivorship, as well as improving the patient experience of living with head and neck cancer, and beyond,” said Ms Robson.


1Bristol-Myers Squibb (2019) Beyond Clinical Outcomes: UK Patient Experience in Head and Neck

Declaration of interest: This article has been developed and funded by Bristol-Myers Squibb Pharmaceuticals Limited (BMS). BMS has had full editorial control over the content.

Originally published 11 November 2019:

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