Living with and beyond cancer

Personalised care and support is a set of four interventions designed and offered across your cancer pathway to ensure your concerns and needs are identified.  By listening to ‘what matters to you’ the most, we are better able to provide care and support in partnership with you. 

Personalised Care and Support Planning helps you to take an active and empowered role in the way your care is planned and delivered. It also supports Supported Self-Management and Personalised Stratified Follow-Up, including Remote Monitoring.

Firstly, you will be offered a Lifestyle and Wellbeing Questionnaire looking at your physical, practical, emotional, social and spiritual needs: 

This usually has three parts: -

1. A concerns checklist where you are able to tick the things that are concerning you or matter to you the most.
2. Your Clinical Nurse Specialist (CNS) or Cancer Support Worker (CSW) will arrange a time to chat through your concerns and potential solutions
3. Together we will write a Personalised Care and Support Plan to help manage your concerns, including signposting to services outside of the hospital such as contact details for The FORCE cancer centre (Exeter), The FERN cancer centre (Barnstaple), Macmillan Cancer Support and Cancer Research UK.

A Personalised Care and Support Plan will help you to:

a. keep a record of conversations, decisions and agreed outcomes

b. understand available support for you, your family and friends

c. know what is required to make the plan achievable and effective

Next you will either be invited to attend a Health & Wellbeing Information and Support clinic or fair, or be given written information and support on managing life after a cancer diagnosis, including physical activity and healthy lifestyle choices.

Providing you with information at the beginning, during and at the end of your treatment is really important for people living with cancer. We know having the right information gives you a better understanding of your cancer type, helps you manage side effects and supports you to make decisions and give informed consent for treatments. You will get a chance to get information about:

• Cancer treatments and its potential side effects
• Healthcare professionals in your cancer team
• Benefits and other financial support
• Getting back to work and education
• Healthy lifestyle advice around moving more and eating well
• Managing the emotional effects that cancer and its treatment may have
• Local and national support services – including the FORCE cancer centre (Exeter), ELF, The FERN cancer centre (Barnstaple), Macmillan Cancer Support and Cancer Research UK.

 It is also useful for your friends and family so they are better able to support you.

Next you will receive an End of Treatment Summary. This is a letter/document completed by your hospital team providing a clear summary of your treatment to help you understand what has happened and what to expect next. It will describe your treatment, including dates, possible side effects and signs and symptoms of recurrence and who to contact. It will also include your last Personalised Care and Support Plan and your planned follow-up, including remote monitoring. It will be sent to you and shared with your General Practitioner (GP). Please keep in a safe place and take with you to any appointments where you think it will help you.

Finally, a Cancer Care Review, with your GP or practice nurse, usually within 3 months of your cancer diagnosis. It provides you with a chance to talk about;

• your cancer experience and how you are feeling
• further concerns or worries and get relevant information and support

If you already have a Personalised Care and Support Plan or End of Treatment Summary it is worth bringing these to the appointment

Early diagnosis campaigns, new treatments options and availability of clinical trials have led to increasingly more people living with and beyond a cancer diagnosis.

At the same time, it is important to recognise that the emotional and physical effects of cancer do not stop because you have completed your treatment.  Simply put, this means from the point of diagnosis, we will provide you with information such as; - what additional support is available, contact details for your team, side effects of treatment, and how-to re-access the acute service if you have concerns or symptoms of recurrence. We call this personalised care and support.

What is Supported Self-Management?

Self-Management means taking a more active role in your healthcare and decision making. Your healthcare team will support you to achieve this. It can include:

• Getting to know your cancer team and letting them know how you feel, including your Clinical Nurse Specialist (CNS) and Cancer Support worker (sometimes called key workers) and details of how to contact them
• Knowing when you need support and information by raising concerns and worries
• Knowing more about your cancer, symptoms and side effects of treatments
• Preparing for your appointments by writing questions down and bringing someone with you
• Getting help and support from your cancer team, family and friends
• Exploring options on keeping such as eating well and keeping active
• Setting goals and feeling more in control of what is happening to you                   

After a cancer diagnosis, many people find that following a healthy, balanced diet and staying active helps give them back a sense of control.

Macmillan has some handy guidance for eating well and staying active including useful videos, top tips and leaflets. Find out more

Quick links

• Get help with stress | The NHS website
• Stress - Every Mind Matters | The NHS website
• Sleep and tiredness | The NHS website
• Eat well | The NHS website
• A healthy, balanced diet | British Nutrition Foundation
• Benefits of exercise | The NHS website
• Find your local Stop Smoking Service - Better Health | The NHS website
• Tips on cutting down alcohol | The NHS website
• How to cut down on alcohol at home | Drinkaware
• Physiotherapy | The NHS website
• NHS One YOU – provides tips, tools, support and encouragement every step of the way, to help improve your health right away.
• Drinkaware

Videos

Eat well online support group

Free group sessions with an oncologist dietician covering how you can eat well during cancer and tailored advice on what you can eat to help you with some of the side-effects you might be experiencing. You will also receive a digital pack of resources to take away. For more information on how to join visit the World Cancer Research Fund website

Free remote exercise service

SafeFit is a free remote service for anyone in the UK with suspicion of or confirmed cancer diagnosis of cancer. It is a collaboration of many agencies, including Macmillan and the NHS, and more information can be found by clicking on the link to the Macmillan website. 

Mindfulness

Many people find practising mindfulness helps them manage their day-to-day wellbeing, but it doesn’t always work for everyone. For further information on how mindfulness can help you and ways to practice it please visit mind.org.uk

Sun safety

For more information please visit NHS Choices to find out about SPF and star ratings on suncreams.

Keep an eye out for changes to your skin. Changes to check for include:

• A new mole,growth or lump
• Any moles, freckles or patches of skin that change in size, shape or colour

Report these to your doctor as soon as possible. Skin cancer is much easier to treat if it is found early.

This is a letter/document completed by your hospital team providing a clear summary of your treatment to help you understand what has happened and what to expect next. It will describe your treatment, including dates, possible side effects and signs and symptoms of recurrence and who to contact. It will also include your last Personalised Care and Support Plan and your planned follow-up, including remote monitoring. It will be sent to you and shared with your General Practitioner (GP). Please keep in a safe place and take with you to any appointments where you think it will help you.

Cancercaremap.org is an online directory that helps people find cancer care and support services in their local area. People with cancer, their friends and family can either search for a service or can browse the types of services available.

https://www.cancercaremap.org/

Find out more on the Macmillian website:

Personalised Care

Holistic Needs Assessment

End of Care summary