The National Cancer Strategy promises “services which patients and the public want” – but what do they want?
The Butterfly Thyroid Cancer Trust led an anonymous survey of thyroid cancer patients via their website, membership email, affiliated patient support organisations and cancer clinics. 322 patients responded over the 24 month survey period. We learned that:
- Patients value hospital-based services which are multidisciplinary and multi-professional.
- They are in favour of Clinical Nurse Specialist support, with the continuity and point of contact that provides.
- They want to receive Thyrogen as part of their care.
- They want to carry a TSH Suppression Card.
- They understand the differences between thyroid disease and other head and neck cancers and want independence from that.
- They are willing to travel long distances for those services.
The survey results in full:
Question 1: Following thyroid surgery changes to thyroxine and in some cases, vitamin D and calcium medication are required. Sometimes this can be difficult to manage and input from an Endocrinologist is needed to help. In your opinion do you think having an endocrinologist in the same clinic at follow up would be beneficial to the patient?
Question 2: Do you feel thyroid cancer patients should be followed up in a combined or ‘joint’ clinic with a surgeon, endocrinologist and oncologist (for radio-iodine input or to discuss other issues)?
Question 3: Would you be happy for thyroid cancer patients to be followed up in a clinic with patients suffering from head and neck cancer?
Question 4: Would you be happy for thyroid cancer patients to be followed up in a general clinic along side patients with non-thyroid related problems ie all types of surgery?
Question 5: Would you be happy for thyroid cancer patients to be followed up in a general thyroid only clinic alongside patients with other thyroid disease as well as a potential cancer diagnosis ie benign or non malignant disease?
Question 6: When you were diagnosed with thyroid cancer would direct access to a Clinical Nurse Specialist trained in thyroid cancer care have been helpful?
Question 7: After having completed your thyroid cancer treatment would continual access to a Clinical Nurse Specialist be helpful?
Question 8: To order to receive better quality medical care would you have been happy to travel beyond your local hospital to get the best care?
Question 9: If you agreed or strongly agreed to the question above, how far would you be prepared to travel to undergo surgery?
Question 10: Would you be prepared to travel to receive Radio-Iodine treatment (usually a two night stay in hospital on one or two occasions)?
Question 11: Would you be prepared to travel to access Thyrogen if your centre could not provide this for you?
Question 12: Occasionally some patients need to have radiotherapy. Should you need it, would you be prepared to travel to receive Radiotherapy? This is usually six weeks treatment Monday to Friday (five days each week).
Question 13: The majority of low risk cancer patients require a yearly blood test to monitor Thyroglobulin. The British Thyroid association recommend follow up for life. Do you think these yearly blood tests should be left solely to the GP?
Question 14: Would you prefer your yearly blood test and follow up to be done by the hospital team that treated you?
Question 15: If the blood test could be done by the GP but the result fed back to the hospital would this be your preferred option? An abnormal result could be acted upon but avoids the patient visiting the hospital for their annual follow up appointment.
Question 16: Have you had problems with the GP changing your Thyroxine medication without reference to the hospital for the hospital team then to change it back again to the original dose they prescribed?
Question 17: Do you think that carrying a ‘credit card’ (pocket information card) to alert your GP to prevent this from happening would be a good idea?
Question 18: Do you think a Clinical Nurse Specialist might be useful in acting as an intermediary to avoid this occurring?
Question 19: Were you happy with the overall quality of care received from the Thyroid team that looked after you?
Question 20: If your surgeon has the required expertise, experience and performs thyroid cancer surgery regularly do you agree that it does not matter whether they are an endocrine surgeon, ENT surgeon, maxillofacial surgeon or from any other speciality?