Support and care for the individual with cancer is a fundamental part of head and neck cancer treatment, delivered by many members of the team. Multidisciplinary teams are specially trained to support all elements of diagnosis and recovery, recognising the complex issues that head and neck cancer causes. A summary of this support is detailed, dividing the patient treatment journey into diagnosis and preparation for treatment, support during treatment, and support after treatment, the latter of which includes rehabilitation, survivorship and, when required, palliative care.

The roles of multidisciplinary team members Clinical nurse specialist

National guidelines recommend that all patients should have access to a clinical nurse specialist in head and neck cancer from the point of diagnosis onwards. The clinical nurse specialist performs a pivotal role in co-ordinating the patient's care, to ensure a seamless journey. They may also be referred to as a key worker.

A clinical nurse specialist will have the relevant knowledge and expertise about head and neck cancers, treatments, and problems that patients may experience and their likely support needs.

A ‘holistic needs assessment’ at the point of diagnosis will help identify and detail what the patient's requirements are, helping the team to create a personalised care plan of support and relevant services; for example, referral to financial benefits advisors, nutritional support, lifestyle changes and psychological support.

The role of the clinical nurse specialist within MDT meetings includes advocating for the patient during discussions about treatment, to ensure that the patient's needs are met holistically.

A diagnosis of head and neck cancer can cause a significant amount of distress, which can affect patients’ psychological, physical and social well-being. It is widely known that all treatments can have a lifelong impact, because of changes in the ability to swallow, being able to speak, and changes to the individual's face and neck. Sometimes this can lead to isolation from both family and social circles.

The clinical nurse specialist can support, signpost and help navigate the patient through the complex pathway of their diagnosis, treatment and subsequent follow up. Co-ordination of the patient's pathway, in particular, across different hospitals, is key to ensuring the patient is not overwhelmed and that they are informed of the key members of the MDT.

In recognising the needs of the carers, as they may take on a nurse role for their loved ones, the clinical nurse specialist can ensure that they also receive support. The impact of getting the patient to treatment visits, ensuring medication is taken appropriately, managing front of neck airways (after laryngectomy or tracheostomy) and managing feeding tubes, for example, can have a physical and emotional impact both on patients and their carers.

A clinical nurse specialist will often remain a key person for the patient to contact throughout their clinical follow up, right the way through to their discharge at five years.

Speech and language therapist

The speech and language therapist is the professional who will assess and help manage any problems an individual may have with swallowing, communication or voice. The speech and language therapist is a core member of the team, and will be alongside the individual and their family from the point of diagnosis.

Many people with head and neck cancer experience swallow and voice problems. This can be because of the cancer's location within the mouth, throat or voice box, and/or because of the treatment required to remove the cancer. Food and drink normally pass from the mouth to the throat and into the gullet (oesophagus). Head and neck cancers can change the way a person can swallow, sometimes causing food and drink to pass into the breathing tube (trachea), causing coughing and feeling like something has ‘gone the wrong way’. This can be called ‘aspiration’. ‘Dysphagia’ is the word used to describe problems with swallowing.

Swallowing and voice are of key importance when planning and undergoing head and neck cancer treatment. A poor swallow can result in malnutrition and dehydration, and in some cases a life-threatening chest infection due to food and drink going into the lungs. This needs to be carefully assessed and managed, to help prevent deterioration and to optimise the way swallow works. Sometimes, the speech and language therapist and dietitian may suggest tube feeding into the stomach before treatment. This may be through nasogastric tubes (through the nostril), or through gastrostomy tubes placed under local anaesthesia via an endoscope (camera) in the mouth inserted into the stomach or under X-ray control. These are known as percutaneous gastrostomy feeding tubes (called radiologically inserted gastrostomy, or percutaneous endoscopic gastrostomy known as PEG). This is to make sure the right amount of food and fluid is provided to the individual if they are unable to swallow it well enough via mouth. These tubes can be removed after treatment as and when they are no longer needed. The insertion of a tube does not necessarily mean the individual cannot eat and drink anything, but it ensures they receive enough calories and fluid if swallowing is hard or not working well enough.

The speech and language therapist will provide exercises, suggest the best positions to improve swallow, suggest changes to the texture of food making it softer to swallow, deliver voice or speech therapy, and offer hands-on support, before during and after treatment. They will also lead the rehabilitation required for people who need their voice boxes removed and who will have surgical voice restoration, where a small valve is placed in the trachea.

During both surgical and non-surgical treatment, patients may struggle with swallowing; hence, close monitoring is needed by speech and language therapists, so that interventions can be initiated as soon as possible.

Dietician

Optimisation of nutrition plays an important role in preparing patients for treatment. Malnutrition, partly because of the effects of the cancer, is common in patients with head and neck cancer, and can be further affected by treatment. Dietitians have an important role in assessing and treating malnutrition. Malnutrition is an important risk factor for a higher chance of complications arising from treatment and for survival. To a certain extent, it is modifiable, hence the importance of dietetics and nutrition. Dietitians should play a part in patients’ initial assessment, so that patients who are malnourished or are at risk of malnutrition are identified at an early stage. If necessary, this can be mitigated through intervention, with alteration of oral diet, and with dietary changes and/or supplements. When malnourishment has occurred through the inability to swallow, close assessment with speech and language therapists is essential, so that patients may be given tube feeding into the stomach, initiated prior to treatment (see above).

During both surgical and non-surgical treatment, patients may become malnourished, and close monitoring by dietitians is essential so that interventions can be initiated as soon as possible.

Restorative dentistry

Consultants in restorative dentistry are core MDT members, who are often involved throughout the patient's cancer journey. Surgery to treat head and neck cancer may involve removal of part of the upper or lower jaws and associated loss of teeth, sometimes creating a communication between the nose and mouth. A significant proportion of patients with head and neck cancer have subsequent dental issues, either as a result of the cancer or its treatment. Radiotherapy often forms part of the treatment for head and neck cancer, and it can have long-lasting effects on the teeth and mouth. This includes a dry mouth, which significantly increases the risk of tooth decay, and may lead to changes in the bone that can prevent healing after surgery, such as a tooth extraction. In addition to diagnosing and managing dental issues, consultants in restorative dentistry are experts in maxillofacial prosthodontics, which involves planning and restoring orofacial defects resulting from cancer surgery, with prostheses often retained by implants.

The initial role of restorative dentistry consultants in the patient's journey involves an assessment of the teeth and mouth. It is important that significantly diseased teeth are removed before RT, to ensure treatment is not delayed or interrupted, and to prevent the teeth causing issues later on. Tooth extraction occurs at least 10 days before primary RT or can be performed at the time of surgery where applicable.

Surgery may involve removal of teeth, and/or alteration of the anatomy of the jaws and palate. In some circumstances, a communication may be created between the mouth and nose. The consultants in restorative dentistry will lead on planning and executing the dental rehabilitation, and work closely with the head and neck surgeons providing the reconstruction. This may involve the planning and placement of dental implants, to help retain an intra-oral prosthesis. Similarly, for defects involving the loss of facial structures such as a nose or an eye, implants may be used to help retain a facial prosthesis. Again, the consultants in restorative dentistry are often involved in the planning and placement of such implants. Contemporary methods frequently use digital surgical planning, utilising a ‘tooth down’ approach to ensure that any reconstruction can provide the optimum functional outcome when surgical reconstruction of the upper or lower jaws forms part of the intended surgery. In most cases, implants are placed at the time of primary surgery, although in certain cases it is better to delay this as a second operation. Consultants in restorative dentistry may also be involved in the management of patients who have trismus (an inability to open their mouth) after RT or surgery, using devices such as a TheraBite® device and providing dental rehabilitation.

For patients undergoing RT, the reduction of dental disease caused by the effects of RT is paramount. This can be achieved with dietary advice to limit sugar intake, the prescription of high fluoride dental products and regular dental examinations. Patients must have close and regular contact with a primary care dental practitioner, who provides high-quality preventative advice and closely monitors a patient's dentition. The consultants in restorative dentistry can liaise with primary care dentists to advise them how best to manage such patients.

Physiotherapy

Physiotherapy services tend to be delivered as part of general physiotherapy rather than specific services for head and neck cancer. Physiotherapy may be given when patients are in hospital during treatment and at home, often by community-based physiotherapy services.

Nonetheless, physiotherapy has an important role in the support of patients, particularly through and after treatment, both surgical and non-surgical.

There may be shoulder or upper arm disfunction after head and neck cancer treatment, particularly after neck dissection surgery. Early physiotherapy input to help patients with exercise and rehabilitation is important. Ideally, in a surgical setting, it should begin before discharge from hospital and be continued thereafter for as long as is necessary. In addition, both surgical and non-surgical treatment can cause neck stiffness and fibrosis, limiting the range of movement of the neck. Again, early and, where necessary, continued physiotherapy input should be provided for patients affected in this way.

Physiotherapists have an important role, particularly in surgical patients, in early mobilisation and, where needed, chest physiotherapy to improve lung function and reduce the chance of and severity of chest infections post-operatively.

Physiotherapy and exercise prescription forms an important component of prehabilitation, discussed separately below. Patients who are likely to experience effects of treatment on, for example, shoulder and neck function, should ideally be given education and, preferably, exercises to mitigate these effects pre-operatively.

Other specific circumstances in which physiotherapy is vital for patients include specialised facial muscle physiotherapy and rehabilitation for patients who have facial paralysis or weakness as a result of the tumour or due to surgery.

Prehabilitation

Prehabilitation is an overarching term for the optimisation and comprehensive preparation and support for patients before cancer treatment.

Evidence shows that actively improving physical and mental health can help speed up recovery after cancer treatment, and reduce side effects or complications from treatment. Even in the typical two-to-three-week interval from assessment for treatment in an MDT clinic to starting treatment, it has been shown that even a small number of prehabilitation sessions can make a difference.

The essential elements of it are:

• Exercise (both ‘cardio’ and strength)

• Nutritional support and optimisation

• Psychological support

• Smoking and alcohol cessation

Many of the elements have been described in the roles of clinical nurse specialist, speech and language therapist, and dietetic support above. A formal prehabilitation programme aims to ensure all these elements of service are provided for patients in a co-ordinated fashion, with the addition of an exercise programme.

Palliative care

Palliative care refers to the care for patients who have incurable disease; it is centred on improving the quality of life of patients and their carers when faced with a life-limiting illness. It is centred on the early identification, correct assessment, and treatment of pain and other problems, whether physical, psychosocial or spiritual.

Patients with head and neck cancer, including those who cannot be given curative treatment, have a high rate of complex palliative care needs and symptom burden.

All of the MDT healthcare professionals deliver elements of palliative care, particularly clinical nurse specialists in close liaison with local or community-based services from, for example, Macmillan nurses. Head and neck cancer MDTs should be linked to specialist palliative care teams for when additional help is required. This may be for pain control, helping with discharging neck wounds, bleeding either from the skin where there is skin involvement with an advanced tumour or internally, and helping with problems breathing.

Palliative care, for patients with head and neck cancer that cannot be cured, and their carers, is centred on making patients as comfortable as possible, by managing pain and other distressing symptoms. It also involves psychological, social and spiritual support.

Patients with incurable head and neck cancer often have numerous and complex palliative care needs, and a high degree of symptom burden. Issues that may arise for patients in this situation include:

• Common physical symptoms for those with incurable cancer (e.g. pain, nausea, distress)

• Management of secretions

• Bleeding and wound management

• Airway (breathing) problems

• Eating and drinking

• Advance care planning, including resuscitation and care for a dying patient

Every MDT healthcare professional has a role and responsiilmbility towards providing palliative care. Co-ordination is very important between the MDT and local services (e.g. general practitioner, community Macmillan nurses), and, when needed, specialist palliative care teams and hospices. Specialist palliative care teams should be involved, when required, at an early stage.

Summary – support through the patient journey

The members and different components of the MDT collaborate to support patients through their journey, with significant areas of overlap. The key elements of support are summarised in Table 4.

Table 4. Key elements of support through the patient journey

At diagnosis and before treatment

A lot takes place in this phase of a patient's journey, in a comparatively short space of time. Typically, a patient may be given a diagnosis of cancer, and, within two weeks, attend an MDT clinic with the treating team for guidance and decisions on possible treatments. Treatment may begin within two to four weeks of that date, leaving a short space of time to prepare for it.

During treatment

During a surgical admission, the clinical nurse specialist, and depending on a patient's needs, speech and language therapist and dietitian, will review patients and co-ordinate care with medical staff. As well as continuing to support patients generally and continue to advocate for them, they will often assist and advise ward nursing staff with issues relating to, for example, tracheostomy or laryngectomy care. This may include addressing issues with swallowing post-operatively and with nutrition. The speech and language therapists will provide hands-on rehabilitation post-surgery. Physiotherapists are frequently required to help with mobilisation, and chest or shoulder physiotherapy. A number of patients will have complex hospital discharge needs. This may include managing a tracheostomy or laryngectomy stoma, gastrostomy feeding tubes, wound management, and so on. The team will teach patients and their carers how to manage these, as well as ensure that patients are discharged with all relevant equipment and with ongoing supplies of relevant consumable items.

When patients are treated with RT or chemoradiotherapy, that treatment is mainly as an out-patient. The same holistic support is required, with expertise to assess and help patients manage the expected reactions to RT, especially regarding inflammation of the lining of the mouth and throat. Swallowing may be affected by treatment, and input from speech and language therapists and dietitians may be required.

After treatment – rehabilitation and survivorship

The same sort of support described above continues. The clinical nurse specialist acts a patient's point of contact, and provides holistic assessment and support. Patients may need help with managing side effects of treatment, including swallowing and nutritional problems. For patients recovering swallowing function, continued swallow assessments may guide to the eventual safe removal of a gastrostomy tube.

For patients requiring significant care after treatment, co-ordination and communication between the MDT team and either or both of similar teams from the patient's local hospital or community-based services is essential.

Some patients require psychological support. Patients recovering from treatment that appears to be successful still require help with survivorship. Hospitals and/or local patient groups or charities may organise health and well-being events to assist with this.