Support & information
Support and information Preview our brand new guide for the newly diagnosed Understanding sarcoma – a new patient’s guide Last year, The National Cancer Patient Experience Survey (NCPES) published a report to drive improvement for cancer patients. 2451 sarcoma cancer patients responded. We learnt that the explanation of sarcoma is one thing, written information and support is another. The survey showed that only 50% of sarcoma patients were given written, easy understandable information about their diagnosis; this was the lowest of all the other cancer groups. In 2010, we also carried out our own ‘Information and Support’ survey, to gain feedback from sarcoma patients, carers, partners and family members. From the 107 people who took part; two thirds felt that their support needs had not been fully met. As the main charity in the UK dealing with all types of sarcoma, we have responded to these research findings, focusing on our Information and Support. Our brand new Understanding sarcoma – a new patient’s guide (page 13) is the core booklet to help patients gain knowledge of this rare cancer and introduce them to the medical team who “Only 50% will look after them. of sarcoma patients It explains what sarcoma is, how it were given written, is diagnosed and easily understandable the treatment information options available. It clearly signposts about their where you can go diagnosis.” for support and has space available to keep your own personal diagnosis information and details of your hospital appointments.
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The booklet will be approved by our Information Review Panel, made Connect
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up of both sarcoma specialist nurses and patients nationally. We will also apply for the Information Standard Accreditation (ISA) quality mark. The guide will be available early March 2013. You can pre-order your free copy on 020 7250 8271 or info@sarcoma.org.uk.
Lack of specialist support in Cornwall The Royal Cornwall Hospital hosted a focus group on Friday 16th November to discuss the limited access to support that people diagnosed with sarcoma are facing in the area. The meeting, organised by Liz Ridgway, Sarcoma Clinical Nurse Specialist, was attended by newly diagnosed patients, carers and family members from the local areas. There were presentations by Mr Morris, Lead Sarcoma Surgeon at Derriford Hospital, Plymouth, who gave an introduction to sarcoma, and our own
Claire Kelleher, Head of Information and Support, who gave an update on the charity’s current activities and highlighted the information and support initiatives that can help patients living in Cornwall. The meeting highlighted the lack of support patients have in the area. Local patients are currently limited to having access to a sarcoma nurse upon diagnosis and at follow up appointments. Patients who have been discharged miss out on this support. Liz Ridgway, Sarcoma Nurse Specialist, said: “Patients undergoing chemotherapy and radiotherapy do not have local access to a sarcoma nurse and may often feel isolated. Support should be available for the Cornish sarcoma patients at all stages of their pathway.” The support of a sarcoma nurse is vital to patients; they provide useful information and offer emotional and practical support that can be a lifeline to patients.
We’re here, so you can be there Join the new online support group for sarcoma patients and carers. A new sarcoma account is available on GroupSpaces.com. This is an online community which gives members an opportunity to communicate with anyone affected by sarcoma. You can speak to others in a similar situation and offer vital comfort to others at difficult times.
Log on to www.groupspaces.com/sarcoma and join the sarcoma community! www.sarcoma.org.uk