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Key workers make a huge difference to patients’ experience

Jane Cox, Macmillan Clinical Nurse Specialist (CNS) for head and neck oncology at Royal Gwent Hospital in Newport explains the emotional and practical benefits of the CNS role.

The impact of a head and neck cancer diagnosis is devastating, overwhelming and frightening. Often there are many appointments and investigations undertaken before treatment is planned and started. This can be a very confusing time and patients and their families can feel lost and isolated.

Patients need someone who can guide them through all the complicated information and appointments. A friendly familiar face to hold their hand, give them a hug and listen to the concerns that are important to them. The clinical nurse specialist (CNS) is well placed to support patients and families at this difficult time.

The CNS is a point of contact, is present at clinic appointments, undertakes holistic assessment, provides information and refers to other support agencies. Macmillan knows that a CNS can make a huge difference to patients’ experience of cancer care. They are able to respond to patient need and support patients to manage their side effects often averting hospital admission (NCAT 2010).

In 2010 the Welsh health minister felt that a key issue for cancer patients was the lack of ongoing contact with specialists (Hart 2010) and proposed that by end of March 2011 local health boards should ensure all cancer patients had a keyworker allocated at diagnosis, who should be the most appropriate health or social care worker for the patient. In principle the key worker can change at points along the treatment pathway (WAG 2011). In practice many tumour sites allocate the key worker role at diagnosis to the clinical nurse specialist.

RS12695__C2A4174-hprSadly not every cancer patient in Wales has the support of a clinical nurse specialist. The evidence shows how vital the CNS service is, there should not be a patient who does not have access to the positive benefit the support of a CNS can have for both patient and their families.

In the 2014 Wales cancer patient experience survey only 66% of patients acknowledged having a key worker. Those with a CNS or key worker were more positive about their care (WCPES 2014).

All patients diagnosed with head and neck cancer are cared for by a multidisciplinary team.  Clinical nurse specialists are seen as a core member of the team and are involved with patient care from diagnosis, through treatment and continue to support patients in survivorship.

Head and neck cancer can be treated surgically or with chemotherapy and radiotherapy, sometimes a combination of treatment is used. The treatment and side effects  can have a profound effect on physical function such as swallow and speech, they may change appearance, cause psychological distress, financial strain and be life changing, for both patients and family.

The CNS should be acknowledged as the most suitable member of the multidisciplinary team to be allocated as the named key worker. They are already working in this role supporting patients to cope and manage during treatment; and are well placed to continue that work, helping patients recovering from treatment and adapting to their survivorship.