Sarcoma Clinical Nurse Specialist and Support Team

Who are we? 

The Sarcoma Clinical Nurse Specialist (CNS) is a registered nurse with specialist education and experience in sarcoma. We are your key worker, which means we are your main point of contact. We can answer questions, provide support during and after your care, and act as a patient representative in the sarcoma multi-disciplinary team (MDT) meetings.

What support and information will be offered? 

• Support during your investigations and at diagnosis.
• Verbal and written information on diagnosis and treatment options.
• Answers to any questions about diagnosis, treatment, and end of treatment plan.
• Directing you to other support such as a physiotherapist, dietician, finance and welfare services, and cancer information and support services.

Cancer Support Worker (CSW) 

The Cancer Support Worker is a non-clinical member of the sarcoma support team. They have received training to provide support and information about physical, emotional, and practical concerns to help you self-manage your recovery and return to as healthy a lifestyle as possible. 

Personalised Care and Support Planning (PCSP) 

Being diagnosed with sarcoma can be a frightening and unsettling time. It can affect many areas of your life.

The sarcoma service offers each patient a PCSP at diagnosis and after finishing treatment. This involves completing a simple questionnaire that allows you to highlight your concerns and to prioritise what matters most to you.

We offer you this assessment to ensure that wherever possible, your concerns and needs are being addressed. We can discuss additional support to help you manage your diagnosis, treatment, and beyond.

Our Sarcoma Cancer Support Worker, Hannah, will contact you two weeks after your diagnosis.

Areas covered by the PCSP may include:

• Physical concerns: tiredness or fatigue, weight change, sleep, appetite.
• Practical concerns: finances, transport or parking, housing.
• Emotional concerns: uncertainty, sadness or depression, worries about the future, feeling a lack of control.
• Family or relationship concerns: partner, children, person you care for.
• Spiritual concerns: faith and spirituality.
• General information and support: exercise and activity, diet and nutrition, health and welling.

This is personal to you, it might be that now is not the right time. The option to create a care and support plan is available to you at any stage of your diagnosis and treatment pathway. We encourage you to ask for one at any time you feel you need one. 

The Sarcoma Multi-Disciplinary Team 

The MDT is a team of specialists with experience in the diagnosis and management of sarcoma. The MDT is made up of: 

• Clinical Nurse Specialists (CNS).
• Plastic surgeons.
• Oncologists.
• Radiologists.
• Histopathologists.
• Thoracic surgeons.
• Retroperitoneal surgeons.
• The MDT coordinator.
• Patient Pathway Coordinators.
• Sarcoma Cancer Support Worker (CSW).

Making decisions about your healthcare

At NBT we encourage shared decision making. This is when patients work with healthcare professionals to make decisions about their healthcare plan and treatment. This makes sure you are supported to make decisions that are right for you. This means supporting you to choose tests and treatments base on medical evidence, as well as your individual preferences, beliefs, and values.

It can be helpful to write down questions you have for your healthcare team. You should bring these, and a pen and paper to make any notes when you have appointments. You are always welcome to bring someone with you such as a family member or friend to your appointments.

Some questions that might be helpful to ask:

• What are my options?
• What are the possible benefits and risks of those options?
• What support and information is available to help me make my decisions?

Shared decision-making matters to us. Tell us what matters you you. 

If you would like a PCSP or a supportive conversation sooner, please contact Hannah on 0117 414 7417.

The Sarcoma Clinical Nurse Specialist can be contacted on 0117 414 7453.

NGS Macmillan Wellbeing Centre 

We offer help and information about different kinds of cancers and treatments. We also talk about money, benefits you might get, what to eat, and exercises to do. If you have concerns or just want to talk with one of the team, we have time to listen and help you.

The centre offers ‘drop-ins’ for coffee and a chat or appointments for specific needs.

Opening times: Monday to Friday, 08:30 - 16:15
Phone: 0117 414 7051 

Cancer Information Session

As part of your routine care you may be invited to a group education and support session at, or soon after the time of a cancer diagnosis.

The session provides:

• Information about cancer and related topics that help you participate in your care and recovery.
• The opportunity to meet other people with similar experiences.
• Help to enable you to make choices best suited to you.

Venue: NGS Macmillan Wellbeing Centre, Southmead Hospital.

Days and times: Mondays 13:30 - 14:30, Thursdays 10:00 - 11:00

Further useful information

© North Bristol NHS Trust. This edition published October 2024. Review due October 2027. NBT003719