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Sarcoma is a rare form of cancer accounting for around 1% of all new cancer diagnoses each year. It affects all age groups, and depending on the type of sarcoma, the treatment can include surgery, radiotherapy, chemotherapy or a combination of the three.
In 2005, the Nuffield Orthopaedic Centre| in Oxford became 1 of 5 nationally commissioned centres for the care of people with sarcomas.
One of the measures for the sarcoma service included the need for a clinical nurse specialist and I came into post with experience of caring for people with sarcomas on the inpatient ward. Prior to my appointment, people treated in Oxford had no constant specialist nurse support and only had contact with professionals at outpatient appointments or when receiving treatment.
It was difficult at the beginning to show how my post would benefit patients, their families and other colleagues. However, over the last five years I’ve been able to make changes to the service which benefit patients and ensure their cancer experience is as smooth as possible.
One of the major changes to the service was employing a Macmillan cancer support nurse. This was driven by the patients who said that they had nobody to contact when I was on leave or teaching. The support nurse, Pippa, has now been in post for 18 months and has really allowed the service to make significant changes.
We were having a few problems getting the patients through a pre-operative assessment because the short time in which to treat them. I now undertake a nurse-led pre-operative assessment, which all patients scheduled for sarcoma surgery attend. I have also started a nurse-led follow-up clinic for people who are two years post-treatment.
This clinic allows us to focus on more social aspects of care, such as giving advice about work, benefits, relationships and long-term effects. The patients also have their routine x-rays and scans undertaken as protocol, but it means their appointments aren’t rushed and they have time to discuss any issues.
Patients have found the clinic helpful, with one saying: ‘I was very pleased with the nurse-led follow-up clinic and consider it beneficial at this point.’ I found that the number of people who are seen in the sarcoma clinic who didn’t know they were being referred to a cancer clinic staggering. Even in the 2010 patient satisfaction survey, 50% said they hadn’t been told they were being referred to a cancer clinic.
We now have a process where all patients being referred to the clinic are contacted by either myself or Pippa to ensure they have received their appointment letter; to explain to them why they have been referred to us; and what may happen during their appointment.
We undertake patient satisfaction surveys annually and use the feedback to make improvements.
Macmillan has information about different types of sarcoma, such as soft tissue sarcoma| and osteosarcoma|. We can send you booklets and fact sheets about different types of sarcoma. You can order these at be.macmillan.org.uk| or by phoning 0800 500 800.
Email Helen|, Macmillan Musculoskeletal Cancer Nurse Specialist.
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