Quality statement 6: Key workers

Quality statement

People with sarcoma are supported by an allocated key worker with specialist knowledge of sarcomas and their treatment.

Rationale

Because sarcoma is such a rare cancer, specialist knowledge of the condition and its treatment is not widespread. It is important that people with sarcoma are able to contact a key worker who can provide specialist guidance and support at all stages of their care and treatment, including during follow‑up. Key workers can also act as a link to local support groups. In addition, care for people with sarcoma may encompass services outside a sarcoma treatment centre, such as rehabilitation, prosthetics, psychological support and palliative care. A key worker is integral in ensuring that people with sarcoma are aware of and able to access such services, and in providing necessary clinical information to these services.

Quality measures

Structure

Evidence of local arrangements to provide a designated key worker with specialist knowledge of sarcomas and their treatment for all people with sarcoma.

Data source: Local data collection. National Cancer Peer Review Manual for cancer services: sarcoma measures, measure 14‑2L–115.

Process

Proportion of people with sarcoma who have an allocated key worker with specialist knowledge of sarcomas and their treatment.

Numerator – the number in the denominator who are allocated a key worker with specialist knowledge of sarcomas and their treatment.

Denominator – the number of people with sarcoma.

Data source: Local data collection.

Outcome

a) Coordination of care.

Data source: Local data collection.

b) Patient satisfaction and availability of key worker.

Data source: Local data collection. National Cancer Intelligence Network National cancer patient experience survey.

What the quality statement means for service providers, healthcare professionals and commissioners

Service providers (such as sarcoma specialist centres and hospitals) ensure that sufficient key workers with specialist knowledge of sarcomas and their treatment are available to support people with sarcoma, and that cover is available for illness or annual leave.

Healthcare professionals ensure that people with sarcoma are allocated a key worker with specialist knowledge of sarcomas and their treatment.

Commissioners (NHS England Sarcoma Clinical Reference Group) may wish to consider including in national service specifications that people with sarcoma are allocated a key worker with specialist knowledge of sarcomas and their treatment.

What the quality statement means for patients, service users and carers

People with sarcoma (a rare type of cancer that develops in a bone or in soft tissue such as muscle or fat) are supported by a 'key worker', who is a healthcare professional with specialist knowledge of sarcoma. People with sarcoma should be able to contact their key worker for information and support throughout their care.

Source guidance

  • Sarcoma (2006) NICE cancer service guidance, Section 8: Supportive and palliative care (page 82)

Definitions of terms used in this quality statement

Key workers with specialist knowledge of sarcomas

Key workers are usually specialist nurses or allied health professionals who have an in‑depth or specialist knowledge of sarcomas and their treatment. They can act as advocates for the patient, helping to coordinate the diagnostic and treatment pathway, providing continuity and ensuring the patient knows how to access information and advice.

[Sarcoma (NICE cancer service guidance)]