Summary

The project aims to address and eliminate inequality in access to thyroid cancer information and thyroid cancer-specific cancer nurse specialist (CNS) support, regardless of postcode. It provides access to accurate, up to date information as well as support from the time of diagnosis and throughout a patient’s cancer journey. Funding from Macmillan Cancer Support has allowed the creation of two innovative specialist thyroid cancer nurse positions: a clinical nurse specialist and a thyroid cancer information nurse specialist based on the Macmillan Support Line. The two roles work collaboratively to develop services and resources for professionals, patients and carers across the UK.

Challenge

Thyroid cancer is relatively rare and due to financial constraints within the NHS, many Trusts are unable to offer a disease-specific clinical nurse specialist (CNS). As a result, significant numbers of patients across the UK do not have optimal support and there is gross inequity of service provision. 

Objectives

To increase access to thyroid cancer specific information and support for patients and families across the UK.

Solution

Funding from Macmillan Cancer Support has allowed the creation of two innovative specialist thyroid cancer nurse positions: a clinical nurse specialist and a thyroid cancer information nurse specialist based on the Macmillan Support Line. The aim is to secure long- term funding for both posts. The National Thyroid Cancer CNS has a clinical caseload based at Velindre Cancer Centre, Cardiff, which covers a population of 1.5 million. Referrals also received directly from consultant thyroid surgeons in the 5 district general hospitals serving four Local Health Boards, for newly-diagnosed patients. Contact has been established with three pilot centres in Glasgow, Norwich and Oxford. Multidisciplinary meetings are attended at each site via videolink and referrals are made directly or in writing. The dedicated National Thyroid Cancer Information Nurse Specialist is available via the Macmillan Support Line, Monday to Friday, 9am-5pm, as well as via the Macmillan Online community. She responds to questions posted online and provides links to validated sources of information. When online service users require more in-depth support, they are invited to call for one-to-one support. Thyroid cancer patient charities also signpost patients and their families to the service. Thyroid Cancer Forum-UK, a network of 250 consultant thyroid cancer clinicians, has been used to raise awareness. 

Results

Feedback from Thyroid Cancer Support Group Wales, Butterfly Thyroid Cancer Trust and British Thyroid Foundation has been positive. On average, 183 enquiries, calls and emails have been managed per quarter. Thyroid cancer calls to the national Macmillan helpline have increased by 90% since the role launched. A 2015 user survey demonstrated 25% of patients would have contacted no one with their concerns if the information nurse specialist was not available while another 25% were unsure who they would contact; 13% were undergoing investigations, 12% were carers and 75% had thyroid cancer. A range of communication modalities have been successfully utilised including Skype, text messaging, email, Facebook, Macmillan online community and telephone. As referrals are now being made to the National Thyroid Cancer CNS from surgical consultants at the time of diagnosis, an immediate benefit has been observed in patients when they first attend the cancer centre to discuss their further management as they are generally more relaxed and better informed. A CNS lead telephone follow-up clinic has been established for low risk long-term follow-up patients which has allowed more clinic time to be devoted to higher risk patients with complex needs. For the first time a CNS has been involved in national clinical trial development discussions at the NCRI Thyroid Cancer Subgroup. Thyroid Cancer Forum–UK has been utilised to contact the nurse and AHP online community to share information and good practice, promote educational events and establish a multi-professional group to tackle standardisation of patient information resources.

Learnings

Evaluation

The innovative nature and national remit of the project makes evaluation a challenge and means we have no precedent and no specific evaluation tool to utilise. We are undertaking patient surveys and have included comparable questions from the National Cancer Patient Experience Survey so that national comparisons can be made for these parameters in due course. Patient experience surveys are underway at Velindre Cancer Centre and each pilot centre. It has taken time to resolve IT and governance issues arising from the cross-border and multi-institution nature of the work. Networking with colleagues on a UK-wide basis is ongoing. Referrals are increasing over time.