Moving forward

Patient-initiated follow-up is a new model of follow-up care for patients who have received treatment for endometrial cancer. It may also be known as 'supported self-management'. Follow-up is a necessary precaution, as a small number of people can relapse. It is a way to pick up problems early and act quickly enough to be able to treat them.

In the past, it has been traditional for patients to have regular follow-up appointments with their surgeon. clinical nurse specialist or oncologist. Although some patients find these appointments useful and reassuring, many find them a source of anxiety that may slow down the process of moving on after their treatment.

Supported self-management puts you in control of your care. Instead of your routine follow-up clinic appointments, you will be able to contact the specialist team directly to discuss any concerns or symptoms and arrange an appointment if you feel that you need to be seen, with the reassurance that we will monitor all tests that you need as part of your surveillance.

The programme allows you to take an active and leading role in your recovery, with the reassurance of a specialist cancer team. The main aim of patient-initiated follow-up is to enable you to develop the skills, knowledge and expertise to:

• make positive choices about your health
• manage the physical and emotional impact of cancer and its treatment
• make long-term positive changes to maintain a healthy lifestyle (eg staying active, eating healthily).
  This booklet aims to explain what the patient-initiated follow-up programme is and how it works. It contains all the information you need to contact the team and arrange to be seen if you are worried. It also contains information on what investigations and tests you will need in the future - your surveillance plan. This booklet may also be used by a nurse specialist during a 'moving forward interview' or 'patient review'.

More and more hospitals across the country are changing the way patients are followed up after endometrial cancer. The introduction of personalised care or the 'recovery package' will better support and improve the quality of life of people living with and beyond cancer. It has five main interventions – personalised care and support planning, the overall treatment summary, patient-initiated follow-up, cancer care review and health and wellbeing events.

The benefits of this programme include:

• You should receive an improved experience of care, having the advantage of a specialist helpline if you have any concerns or symptoms plus all your follow-up tests arranged for you.
• Support from a dedicated cancer nurse specialist.
• Supportive health and wellbeing information.
• You will not have to make unnecessary trips to the hospital at times when you are symptom-free and moving forward in life.
• You no longer need to take time off from work or have to pay travelling or parking charges for outpatient appointments that you do not need.
• You can phone or email the helpline with any concerns or symptoms relating to your cancer and receive a call back (we aim to respond within two working days).

Personalised care and support planning via a holistic needs assessment (HNA) is available throughout your cancer treatment. This is a simple questionnaire designed to support people living with and beyond cancer. The assessment ensures that your physical, practical, emotional, spiritual and social needs are met. A nurse can discuss the assessment with you and create a personalised care plan, which may include signposting you to community support groups or referring you to further specialist teams.

If you have completed an assessment previously, the nurse specialist may discuss this with you at the end of your treatment to ensure any outstanding concerns are addressed.

If you would like to complete an assessment, please let your nurse specialist know at your three-to-six-month follow-up appointment after surgery.

Located in Great Shelford conveniently next to Scotsdales. They welcome you at any point on your journey. No appointment is required. They offer the Macmillan HOPE course, mindfulness classes and various group sessions you may be interested in. They are open Monday to Wednesday, 10:00 (10am) to 16:00 (4pm); you can call them on 01223 840105. Please ask for more information at your Moving Forward appointment. You can also call and ask for further details on the number provided above.

An important part of our patient-initiated follow-up programme is ensuring you feel supported, reassured and have the skills to make positive decisions about your health and care. You will be invited to a 'moving forward' appointment with a specialist nurse either in person or over the telephone.

If you are invited for a 'moving forward' appointment, please take this booklet along to your appointment. The nurse specialist will discuss this with you. The back page can be used to make notes for the future.

During the Moving Forward Interview, the nurse specialist may discuss:

• Your diagnosis and treatment
• Introduction to self-management and the patient-initiated follow-up programme.
• Endometrial cancer treatment and the side effects or late effects of the treatment
• Your planned surveillance tests and any other ongoing care you may require.
• Health and Wellbeing information and support available.
• Balanced and healthy lifestyle; keeping active.
• Signs and symptoms to look out for
• Refer you to further specialist teams if required (eg a dietitian or physiotherapist)
• What surveillance tests you may have, including where to have blood tests taken if needed.
• How to re-access the service if required and our contact details.
• Discuss any concerns or questions you may have about the programme.

You will be provided with a copy of your 'overall treatment summary'. This document details important information relating to your diagnosis and the treatment you have received. It details any ongoing care you may require and your follow-up tests. A copy will also be shared with your GP.

For most patients, there are no regular tests during your follow-up programme. If you require follow-up tests (eg blood test), your nurse specialist will discuss this with you at your ‘Moving Forward’ appointment, usually three to six months after surgery.

If you are under 60 years old, you will no longer require a smear test unless told otherwise by your nurse specialist.

At your follow-up appointment, the nurse specialist will discuss your health needs assessment. It is a way of us identifying any concerns or problems to help signpost you to appropriate support where necessary.

It is important you contact us as soon as possible if you experience any changes that cause you concern, so we can arrange to see you.

You can contact the nurse specialist at any time during your follow-up period. The team can provide you with advice, organise additional tests or arrange an appointment within the gynaecology team in response to your concerns.

You will be asked to leave a message on the helpline. Please ensure you leave a message detailing your concern along with your name, hospital number and a contact number. We will aim to return your call within two working days (see cover for contact details).

The risk of endometrial cancer returning is different for every patient. Your doctor or nurse will have discussed this with you at your initial appointment. Like hospital follow-up, regular scans have not been shown to improve survival in most cancers.

Symptoms to be aware of include:

• vaginal bleeding or unusual vaginal discharge
• persistent abdominal pain, discomfort
• increasing or persistent pain in the back
• unintentional weight loss or change in appetite
• significant lethargy, fatigue, or lack of energy

If you are concerned about any new symptoms, please contact the helpline as soon as possible.

If your symptoms are particularly worrying, especially in the case of sudden heavy bleeding or severe and persistent abdominal pain, you should contact your GP immediately or go straight to the hospital emergency department.

Macmillan Cancer Support (opens in a new tab)

Macmillan Cancer Support provide confidential advice for people with cancer, their families, carers, and wider support. They provide information to help understand diagnosis, treatment, side effects and life after cancer treatment. They can provide emotional and practical support via their confidential helpline: 0808 808 0000.

Cancer Research UK (opens in a new tab)

CRUK funds scientists, doctors, and nurses to carry out research to help beat cancer. They offer advice and information on all types of cancer.

Cancer related queries to the nursing team: 0808 800 4040.

The Eve Appeal (opens in a new tab)

The Eve Appeal is the leading UK national charity funding research. They run a nurse led information service. 0808 802 0019.

Peaches (opens in a new tab)

Peaches is the first gynae charity with a sole focus on research for womb cancer. They provide advice and education.

Email the Peaches Trust