Network News 18 September, 2017

Responding to patients' post treatment concerns

As I recover from my own surgery, I read the Facebook discussions of our members. One topic that continues to arise, and where patients, carers, and family express dissatisfaction, is the period of time where patients are post treatment. Concerns expressed cover issues of psychological support, dental care and rehabilitation, surveillance of ongoing health and well being, access to services, and clinicians, and the role of general practitioners in post treatment. 

The national Standards of Service Provision for Head and Neck Cancer details the services patients will receive throughout their cancer journey. Standard Nine details the services for follow up and surveillance. There are two parts to the standard:

        9.1 Patients with head and neck cancer have access to a care coordinator and to a range of experienced rehabilitation professionals throughout the course of their cancer journey, in conjunction with their GP. 

The rationale for the standard states:

Patients with head and neck cancer are a heterogenous group likely to present with complex or long-term needs. Early access to rehabilitation services is associated with better outcomes and can prevent secondary disability. 

       9.2 Follow-up plans include clinical review by appropriate members of the Multi Disciplinary Team (MDT), working in conjunction with the patient, the family/whanau and their GP.

This rationale states:

Patients with head and neck cancer are at risk of: persistence of disease after treatment, local and regional recurrence, new disease. Persistent recurrent or new disease may present to any member of the MDT as symptoms or functional deterioration.  Early detection of and intervention for new problems lead to better outcomes. 

Each patient needs to be able to contact, and communicate with their care coordinator on a regular basis to ensure they access the rehabilitation support. You should have a copy of your follow up plan which details when you will be followed up and how your cancer will be monitored.

Do you have the name and contact details of your care coordinator?

Do you have a follow up plan? 

For each region we have created a group with details of the care coordinators and their contact details.

 If we have missed anyone, please let us know and we will update the information. It is critical that every patient, carer, and family/whanau member has access to this information. 

Ask for a copy of your follow-up plan. If your MDT does not have a model available, you can download and print one here, and give to your clinician.

Network News

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New Members

We welcome to our community, Jay Maxwell, Rochester, MN, Heather Jean Anderson, Timaru, Janet Brill, New Plymouth, Emma Wilkins, Staffordshire, Sharon Agger, Rotorua, Jane Gregory, Hamilton, Mere Manning, Napier and Ian Sell, Auckland.

As you know, you can click on the names to send a message to each of these people, and welcome them to our Network. 

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Ka kite ano,

Diana Ayling


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Diana Ayling

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  •  From Denise VeyVoda,MA,DDS,FAAMP
    Maxillofacial Prosthodontist, New York.
    I am happy to see you are making a sheet that Drs will fill out as the follow up plan for patients. I wish you would include the oncologic Dentist so that all Head and Neck patients are screened prior to Radiation and/or Chemo and placed on the neutral Fluoride protocol for life. this would prevent the radiation induced caries that leads to extraction and possibly osteo radio necrosis. This is a very large problem in this patient community and it is very often overlooked. Please add it to your sheet and not as “Other professional” It is a key member of the team.
    Thank you,
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