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The web Directory of Information Materials for People Affected by Cancer is regularly updated and currently has details of over 1,900 booklets, leaflets, books and audiovisual materials for people affected by cancer. Most have been published in the last five years but we have included some older ones that are still useful.

Results: 187

Cover image of 'How to get a carer’s assessment'

How to get a carer’s assessment (March 2020)

Brainstrust

This factsheet will explain what extra support may be available to you as a caregiver in the form of a carer’s assessment. It will go through what the assessment is and how to apply for it, and it will also signpost some useful organisations that may be able to support you.

Cover image of 'How to have a voice as caregiver'

How to have a voice as caregiver (March 2020)

Brainstrust

Being a caregiver is a daunting role – you need compassion, fortitude and fierce resilience. And more often than not, you are living these values on behalf of your close person, but never for yourself. This factsheet will help you find your voice as a caregiver of someone with a brain tumour.

Cover image of 'Glossary'

Glossary (January 2019)

Brainstrust

A glossary of some of the words that patients may come across during treatment. 

Cover image of 'Proton beam therapy clinical research. The current state of clinical research'

Proton beam therapy clinical research. The current state of clinical research (January 2019)

Brainstrust

This leaflet looks at research into proton beam therapy. It considers the current state of research, why research is needed, and how do we bulild the evidence.

Cover image of 'Understanding the pathway. When does proton beam therapy happen?'

Understanding the pathway. When does proton beam therapy happen? (January 2019)

Brainstrust

This leaflet describes when proton beam therapy is given, preparation for treatment, and what happens afterwards.

Cover image of 'How it works. What is proton beam therapy?'

How it works. What is proton beam therapy? (January 2019)

Brainstrust

This leaflet describes what proton beam therapy is and how it is different from conventional external-beam radiotherapy. It also explains the potential benefits and drawbacks of proton beam therapy.

Cover image of 'Proton beam therapy myths. Myths that need busting'

Proton beam therapy myths. Myths that need busting (January 2019)

Brainstrust

This leaflet looks at some of the myths around proton beam therapy: protons can treat any cancer; proton beam therapy is more effective than conventional radiotherapy; protons can cure cancer that other treatments can’t; having proton beam therapy through a private provider is better than through the NHS; decisions to be treated with proton beam therapy are based on money; other countries use proton beam therapy in most cases; most people should be treated with proton beam therapy.

Cover image of 'Driving'

Driving (June 2019)

Brainstrust

This factsheet provides information on the law around driving with a medical condition, the process when involving the DVLA and your medical team, and organisations that may be able to help.

Cover image of 'Where should I have proton beam therapy? NHS or private?'

Where should I have proton beam therapy? NHS or private? (January 2019)

Brainstrust

This leaflet outlines the advantages of having proton beam therapy in an NHS setting, rather than privately.

Cover image of 'Should I have proton beam therapy? How do I make the right decision?'

Should I have proton beam therapy? How do I make the right decision? (January 2019)

Brainstrust

This leaflet is not about whether someone should or should not have proton beam therapy. Rather, it explores the approaches that can be taken to help people make a decision.

Cover image of 'Understanding primary brain tumours'

Understanding primary brain tumours (September 2019)

Macmillan Cancer Support

This booklet is about primary brain tumours. It is for anyone who has been diagnosed with a primary brain tumour. There is also information for carers, family members and friends. The booklet explains the signs and symptoms of a primary brain tumour, and how it is diagnosed and treated. It also has information about emotional, practical and financial issues. 

Cover image of 'What to expect. What is it like to be treated with proton beam therapy?'

What to expect. What is it like to be treated with proton beam therapy? (January 2019)

Brainstrust

This leaflet describes what happens when proton beam therapy is given, and the possible side effects. 

Cover image of 'Understanding the decision process. Who is proton beam therapy suitable for?'

Understanding the decision process. Who is proton beam therapy suitable for? (January 2019)

Brainstrust

This leaflet explains who proton beam therapy is suitable for and how the decision is made. Includes Care Pathway and Clinical Dependencies Referral and Care Pathway 1 (NHS and overseas) and Pathway 2 (NHS only).

Cover image of 'Proton beam therapy and brain tumours'

Proton beam therapy and brain tumours (October 2019)

The Brain Tumour Charity

Proton Beam Therapy (PBT) is a highly specialised form of radiotherapy that is more targeted than conventional radiotherapy. This means it causes less damage to the healthy tissue of the brain and so causes fewer side-effects. However, PBT is only suitable for a few types of brain tumour and, in most cases, does not lead to better outcomes than conventional radiotherapy. This factsheet describes PBT and how does it compare to conventional radiotherapy, who can have it, what it involves and side-effects, and answers some commonly asked questions.

Cover image of 'How do I know if information on the web is reliable?'

How do I know if information on the web is reliable? (July 2019)

Brainstrust

Access to the internet at the tips of our fingers has made getting hold of information quicker and easier than ever, but how can you know what sources to trust? Misinformation spreads fast online, and is sometimes shared by people with a large following. This factsheet will help you to understand what reliable websites look like, establish fact from fiction online and stop feeling overwhelmed by the volume of information available.

Cover image of 'Driving and brain tumours'

Driving and brain tumours (July 2019)

The Brain Tumour Charity

This leaflet outlines some key facts in relation to driving for people who have a brain tumour.

Cover image of 'How to deal with the overwhelm'

How to deal with the overwhelm (January 2019)

Brainstrust

If you are a patient living with a brain tumour, the change in your situation may be difficult to deal with and there may also be changes in your ability to function as you used to. This factsheet has tips to help you cope.

Cover image of 'Cannabinoids – information for patients and carers'

Cannabinoids – information for patients and carers (January 2019)

Brainstrust

This factsheet explains the difference between Cannabidiol (CBD) and cannabis oil, the evidence to date, and the current legal status.

Cover image of 'Immunotherapy: DCVax® - information for patients and carers'

Immunotherapy: DCVax® - information for patients and carers (January 2019)

Brainstrust

Brain tumour immunotherapy, particularly DCVax®, is gaining an increasing amount of media coverage and interest. This Know How explains what immunotherapy is, what DCVax® is, and the current state of research and evidence to date. 

Cover image of 'How to get a second opinion'

How to get a second opinion (January 2019)

Brainstrust

This factsheet describes the pros and cons of a second opinion, clarifies the options, and explains how to seek another opinion.

Cover image of 'How to handle conflict'

How to handle conflict (January 2019)

Brainstrust

Living with a brain tumour can cause stress and this can cause emotions to run high. This factsheet has tips to help solve conflict.

Cover image of 'Finances and benefits'

Finances and benefits (November 2019)

Brainstrust

No longer being able to work, new and expensive mobility requirements, having to travel long distances to get to hospital – whatever the reasons for you, having a brain tumour can be a huge financial strain. This factsheet finances and benefits that could support you and your family.

Cover image of 'Returning to work'

Returning to work (January 2019)

Brainstrust

Guidance on returning to work after treatment, or when your caring role has ended.

Cover image of 'Brain tumour biomarkers. What you need to know'

Brain tumour biomarkers. What you need to know (July 2019)

The Brain Tumour Charity

This leaflet explains what biomarkers are and how they may be used in the management of brain tumours.

Cover image of 'Going home after brain tumour surgery. A discharge guide for people with a brain tumour'

Going home after brain tumour surgery. A discharge guide for people with a brain tumour (July 2019)

The Brain Tumour Charity

Going home after brain tumour surgery can feel quite overwhelming. We know there can be a lot of information to process and you may find that you have more questions, or need additional information or support. This leaflet provides information and answers to questions often asked by people after brain tumour surgery.

Cover image of 'Diet and nutrition'

Diet and nutrition (December 2019)

The Brain Tumour Charity

This leaflet is for anyone receiving treatment or who has recently completed their treatment.There’s no specific food or type of diet that can control or treat brain tumours, but controlling your diet may help to improve your quality of life and manage the side-effects of treatment, such as dry mouth, nausea, poor appetite, and weight loss.

Cover image of 'Coping with thinking difficulties (cognitive impairment)'

Coping with thinking difficulties (cognitive impairment) (September 2019)

The Brain Tumour Charity

This leaflet explains what is meant by cognitive impairment and has suggestions to help people cope.

Cover image of 'Speech and language difficulties'

Speech and language difficulties (September 2019)

The Brain Tumour Charity

This leaflet explains how brain tumours can affect communication. It describes the communication difficulties that someone with a brain tumour may experience, and the emotional difficulties that this may cause for them and their family and friends.

Cover image of 'Personality changes'

Personality changes (September 2019)

The Brain Tumour Charity

This leaflet describes personality changes that may occur in brain tumour patients and the reasons behind these changes. It has advice on coping with personality changes and sources of support.

Cover image of 'Thinking difficulties (cognitive impairment)'

Thinking difficulties (cognitive impairment) (September 2019)

The Brain Tumour Charity

Many people diagnosed with a brain tumour will have some form of cognitive impairment (difficulties with their thinking abilities), due to the presence of the tumour and the pressure it puts on the brain. This leaflet describes the types of impairment that might develop and how they are affected by the location of the tumour, treatment and drugs, and by emotional and psychological factors.

Cover image of 'Coping with depression and low mood'

Coping with depression and low mood (October 2019)

The Brain Tumour Charity

This leaflet has suggestions to help you cope with low mood and depression.

Cover image of 'Coping with speech and language difficulties'

Coping with speech and language difficulties (August 2019)

The Brain Tumour Charity

This leaflet has tips for dealing with speech and language difficulties from people affected by a brain tumour and from healthcare professionals specialised in treating brain tumours. 

Cover image of 'Ependymoma (in children). What you need to know'

Ependymoma (in children). What you need to know (July 2019)

The Brain Tumour Charity

This leaflet gives an overview of ependymoma in children and answers questions you may have about this type of tumour.

Cover image of 'Depression and low mood'

Depression and low mood (October 2019)

The Brain Tumour Charity

This leaflet explains what depression is and describes the signs and symptoms and possible causes.

Cover image of 'Being a carer'

Being a carer (July 2019)

The Brain Tumour Charity

This leaflet has suggestions to help carers manage their role, such as having a break, and getting practical and emotional support.

Cover image of 'Symptoms diary'

Symptoms diary (2019)

Headsmart

Brain tumours are relatively rare, but early diagnosis can save lives, which is why keeping track of any potential symptoms can help to make the most out of a doctor’s appointment and may lead to a quicker referral or better reassurance. You can use the diary at your appointment to describe the symptoms and explain your concerns.

Cover image of 'Returning to school. A teacher's guide for pupils with a brain tumour, during and after treatment'

Returning to school. A teacher's guide for pupils with a brain tumour, during and after treatment (2019)

The Royal Marsden NHS Foundation Trust|Cerebra

This publication aims to guide teachers and schools faced with the task of supporting a pupil with a brain or spinal tumour who may be absent for some time, or who may have sporadic attendance with a very serious illness and potentially devastating long term effects. It explains what the pupil may be going through both medically and psychologically. It offers practical strategies for ensuring supportive re-integration back to school. Suggestions are given for how teachers, assistants and SENCOs can provide sustained and targeted support for pupils who face extended treatments, devastating long term side effects or an uncertain future.

Cover image of 'Neurosurgery for adults with brain tumours'

Neurosurgery for adults with brain tumours (July 2018)

The Brain Tumour Charity

This factsheet gives an overview of neurosurgery for brain tumours and gives an idea of the processes and procedures you may experience.

Cover image of 'Steroids for adults with brain tumours'

Steroids for adults with brain tumours (May 2018)

The Brain Tumour Charity

This factsheet describes what steroids are, how, when and why they are used, and the possible side effects. It also answers some questions that you may have about steroids.

Cover image of 'Clinical trials for brain tumours'

Clinical trials for brain tumours (June 2018)

The Brain Tumour Charity

This factsheet describes what a clinical trial is, the four phases in developing a new treatment, and the benefits and risks of taking part.

Cover image of 'Financial support and brain tumours'

Financial support and brain tumours (November 2018)

The Brain Tumour Charity

This factsheet gives a brief outline of the financial support that may be available to you if you are living with, or caring for someone who has, a brain tumour. 

Cover image of 'Scans for adults with brain tumours'

Scans for adults with brain tumours (May 2018)

The Brain Tumour Charity

This factsheet describes CT scans and MRI scans - the two scans most commonly used in the diagnosis and monitoring of brain tumours - and answers common questions you may have.

Cover image of 'Seizures (epilepsy) and brain tumours - introduction'

Seizures (epilepsy) and brain tumours - introduction (June 2018)

The Brain Tumour Charity

This introduction to seizures addresses the following concerns: what is a seizure; what is epilepsy; what is the risk of having seizures; and what happens during a seizure. 

Cover image of 'Head Smart. Early diagnosis of brain tumours'

Head Smart. Early diagnosis of brain tumours (2018)

The Brain Tumour Charity

Leaflet with information about the common symptoms of brain tumours in children and young people and what to do if a child is experiencing any of the symptoms. It also has information about the Headsmart campaign and details of further support.

Cover image of 'Chemotherapy for adults with brain tumours'

Chemotherapy for adults with brain tumours (June 2018)

The Brain Tumour Charity

This factsheet describes chemotherapy for brain tumours in adults. It describes what chemotherapy is, why it is given, how it is given, possible side-effects, and answers some common questions you may have about chemotherapy.

Cover image of 'Clomipramine and brain tumours'

Clomipramine and brain tumours (August 2018)

The Brain Tumour Charity

Clomipramine has been used to treat depression since the 1960s. Recently there has been debate about using it to treat brain tumours. There is some anecdotal evidence but there have been no clinical trials. This factsheet outlines some of the research and theories about Clomipramine.

Cover image of 'Neurosurgery for children with brain tumours'

Neurosurgery for children with brain tumours (February 2018)

The Brain Tumour Charity

This factsheet gives an overview of surgery for brain tumours in children and helps to answer some questions you may have about brain surgery. 

Cover image of 'Who's who in your clinical team?'

Who's who in your clinical team? (July 2018)

Brainstrust

A who's who of healthcare professionals involved in the care of someone with a brain tumour: GP; consultant neurosurgeon; consultant neurologist; consultant radiologist; neuro-oncologist; clinical psychologist; neuro-ophthalmologist; community neurological rehabilitation nurse; neuro-oncology clinical nurse specialist; epilepsy nurse; palliative care nurse; specialist allied health professional; disability co-ordinator (higher education). It describes the role of each professional and how they can help.

Cover image of 'Vision loss and brain tumours. What you need to know'

Vision loss and brain tumours. What you need to know (July 2018)

The Brain Tumour Charity

This booklet summarises some of the key types of vision problems that may occur as a result of brain tumours or their treatment, and how to adapt to them. 

Cover image of 'Radiotherapy for children with brain tumours'

Radiotherapy for children with brain tumours (February 2018)

The Brain Tumour Charity

This factsheet has information on radiotherapy in children, the treatment procedure and some of its possible side-effects. 

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