Neuropsychologists are psychologists who specialise in understanding the link between the brain and behaviour. 

Neuropsychological assessments are a way of describing and measuring the effects that changes in the brain can have on thinking skills, behaviour, and emotion.

Changes in thinking skills and behaviour may be caused by aging, brain damage or disease, and sometimes by stress or low mood.  

Neuropsychologists also commonly provide rehabilitation and treatment to help people manage and work around any difficulties they might have. 

Your appointment will be with one or more members of the neuropsychology team. Usually, you will discuss your difficulties with the neuropsychologist, who will take notes of what you say. These notes will become part of your healthcare record. You will be able to ask questions. 

You can have someone with you, such as a friend or family member, if that is helpful, for example for support or because they can offer helpful information about your difficulties. This discussion will happen either over the phone, video-call, or face to face.

When you attend the appointment(s):

• You will be asked to discuss your difficulties with a neuropsychologist.
• You will be asked to do some tests of your thinking skills, like memory.
• You may be asked to complete some questionnaires about your emotions, for example stress and worry, or feelings of unhappiness. 

If appropriate, you will have an assessment of your thinking skills, such as your memory ability, and of how you are feeling emotionally. This will be done either face to face or by video-call, through questionnaires and cognitive tests. The assessment requires concentration and effort and some people may feel tired afterwards.

Details of your appointment will be in your letter.

Once you have completed the assessment the neuropsychologist will write a report of the findings and may contact you to discuss the results and possible ways forward. The report will be shared with your referring doctor and other members of your healthcare team as appropriate.  

A copy may be sent to you routinely, or if not, is available upon request. 

A neuropsychology report typically includes an explanation of the tasks given and the scores that were achieved. It may include an opinion about the likely cause of any difficulties observed as well as some recommendations for how to help with any problems identified. 

Sometimes the report might be difficult to understand or you might have further questions, in which case you should contact us so that we can assist you. 

Depending on the service pathway, and what was agreed with the neuropsychologist, you may have further appointments with members of the neuropsychology team to help you with your cognitive and/or emotional difficulties.

After you have attended: 

• A report will be written by the neuropsychologist which will go to the referrer or other appropriate members of your healthcare team.
• In some services the report is also sent to you.
• Depending on the service pathway, you may also be invited to attend further appointments for rehabilitation or therapy.
• If you have any questions about the report or what happens next please contact us. 

On the day:

• Please have your glasses and hearing aids with you if you need them.
• Please take any medication as you normally would.
• You may find it helpful to write down any questions ahead of the appointment.

You will be asked by the neuropsychologist if you agree (consent) to the assessment and, if appropriate, any relevant treatment. The neuropsychologist will explain the assessment and/or treatment to you and you can ask any questions that you may have.  

You are free to decide whether or not you want to have the assessment or treatment offered. 

By consenting you agree that:

• The neuropsychologist can take notes of what is said and done during your work with them.  
• These notes will form part of your healthcare record.
• You agree to undertake the tasks of the assessment and/or treatment as appropriate.
• You agree a report summarising appropriate details of your discussion with the neuropsychologist, the results of your assessment, and any treatment can be shared with your GP and treating healthcare team as required. 

We will process personal data to enable us to provide neuropsychological services to you. This information may include personal details, family details, lifestyle and social circumstances, employment and education details, and physical and mental health details. 

In order to carry out our work we need to process personal information about our patients, their relatives/guardians and sometimes other professionals. 

We sometimes need to share the personal information we process with the individual, and also with other organisations. Where this is necessary we are required to comply with all aspects of relevant law. 

Information discussed and shared with the neuropsychologist or staff under their supervision, along with the results of any assessment or treatment undertaken and reports or letters written, will remain confidential within your healthcare record. 

We will share this information with members of your healthcare team as part of your care. We will not share this information with people outside of your healthcare team without your permission. 

There are, however, circumstances in which we are legally required to breach confidentiality. Under these circumstances we will make all reasonable efforts to inform you of the need to share information. We will breach confidentiality if we believe failure to do so will result in harm to you or others. Specifically, we will breach confidentiality if we believe a child is at serious risk of harm, we believe there is serious risk of harm to you or someone else, or if we believe you have not disclosed relevant information that you are required by law to disclose, such as a condition that will likely affect your ability to safely work or drive.

Supervision of staff

Staff within the Department of Neuropsychology receive supervision of their work from a senior clinician to maintain and improve their skills. Within this they may discuss details of their treatment with you. The supervisor is bound by the same rules of confidentiality as outlined above.

Students and trainees

North Bristol NHS Trust is a teaching trust and we often have students and trainees working within the Department of Neuropsychology. If you do not wish for them to be present during your assessment or treatment please let us know. Your decision will not affect the treatment you receive. 

You may not wish to raise a complaint, but would like us to be aware of an issue and try and make it right. If you need advice or have a concern at North Bristol NHS Trust the Patient Advice and Liaison Service (PALS) can be contacted at:

Email: pals@nbt.nhs.uk
Phone: 0117 414 4569

If you wish to make a formal complaint you can:

Complete our online form: www.nbt.nhs.uk/patients-carers/feedback/advice-complaints/raise-a-conce…

Email: complaint@nbt.nhs.uk

Phone: 0117 414 4567

Write to: 

Complaints Team,
Beaufort House,
Southmead Hospital
Bristol
BS10 5NB

You are being offered this test because of your breast cancer diagnosis and because you meet the current national criteria for genetic testing. 
The test may give us information about why you developed breast cancer and about your risks of developing new cancers in the future. As this test looks for inherited (germline) variants, it may have implications for your future health and for your family. If we find that you have an increased risk of future cancers’ we will discuss screening and risk reducing methods with you. 
Please take time to ask all the questions that you need to. If you don’t feel ready to have a test right now, your team can store a DNA sample and revisit this with you at a later date. If you decide not to have a genomic test you will still get the best possible health care, based on what we know about your cancer.
 

Most breast cancer is not inherited. Breast cancer is a common condition, it affects around one in seven women in the UK. Only a minority of breast, around 5-10%, are influenced by a genetic variant. Genes which influence breast cancer risk generally fall into one of two categories: 
 

High risk breast cancer genes. These genes can cause a high lifetime risk of breast cancer. High risk is defined as a lifetime breast cancer risk of 30-80%. Examples of high risk genes include BRCA1, BRCA2 and PALB2. These genes also influence the risk of ovarian cancer. There may be some increased risk of other cancers, depending on family history. 
 

Moderate risk breast cancer genes. These genes increase breast cancer risk, but not as strongly as the high risk genes. Moderate risk genes typically cause a lifetime breast cancer risk of 20-30%, depending on family history. Examples of moderate risk genes include CHEK2 and RAD51C. Some of these genes also influence ovarian cancer risk. Moderate risk genes were discovered more recently, so we are still learning about their effect on cancer risk. 
 

Inheritance: If a parent has a gene variant, there is a 50% chance of passing it on each time they have a child. This is not influenced by sex; we all have these genes and either parent can pass them on to any child.
 

Genomic testing in inherited Breast Cancer (Test Code R208) is carried out on a blood sample. 

If you decide to have the R208 genetic test, your healthcare professional will discuss this with you and there is a form to complete which records your choices. Your blood sample will be sent to our regional Genomics Laboratory Hub for testing. Testing usually takes between 2 to 3 months. This test is about your cancer and inherited breast cancer risk, it does not look for changes in DNA that may cause other health conditions.

The R208 gene panel includes a number of genes and the laboratory will add to it as we learn more about cancer genetics. Only genes with a proven influence on breast cancer risk will be added. If you have specific questions about the genes currently included in the R208 test, please discuss these with your healthcare professional. If required, you have the option to speak to a genetic specialist before making your decision about testing. Everyone who tests positive, or has a significant family history, will be offered a referral to a genetic specialist.
 

Once your sample has been taken the results are returned to your healthcare professional who will share them with you. There are three outcomes to this genetic test: 
Positive: A variant is found in a breast cancer gene. 
Negative (normal): No variants were found in the genes tested. 
Inconclusive: A gene variant was found but its significance is unclear.
 

1. What does it mean if a gene variant is found on my genetic test?
This is likely to explain why you developed breast cancer. Your breast cancer team will inform you of the result and consider this information when planning your treatment.

You will be referred to Clinical Genetics so that you can discuss your result in more detail. Clinical Genetics will explain what the test result means for your future risk of cancer, your options for cancer screening and measures to reduce these risks.

A test will be available for your relatives to assess their genetic cancer risk. Clinical Genetics will support you in sharing the information with family members, so that everyone gets the care they need.

2. What does it mean if no gene variants are found on my genetic test?
This is the most common result. This result means it is unlikely that your breast cancer was caused by an inherited gene variant. The risk of future cancers (in you or your relatives) is unlikely to be raised unless you have a significant family history of cancer.

If you have a significant family history of cancer you will be referred to Clinical Genetics for further discussion.

3.    What does an inconclusive result mean?
People are diverse and there is a lot of variation within our genes. Some gene variants have no effect on how a gene functions. If a new or rare variant is picked up, it can hard to predict whether it affects cancer risk, or whether it is just harmless variation.

If the scientists cannot be sure of a variant’s effect, they will report it as an uncertain finding. (In technical terms this is called a “variant of uncertain significance”, or “VUS”). If an uncertain variant is found, you may be referred to Clinical Genetics so that they can assess this for you and your family.
 

Cancer Genomics 

Cancer occurs when damage inside of a cell results in that cell growing and dividing in an uncontrolled manner. Some cancers are triggered by specific environmental factors, such as smoking, UV light or radiation. Most cancers involve a number of different factors and are essentially a chance event, one that becomes more common as we age. In a small number of cases cancer can be caused by an inherited gene “variant”, one that can be passed on between generations. 

Genomic testing is increasingly being used in cancer treatment pathways. This kind of testing may help us to understand: 

•    Why you developed a cancer 
•    Which treatments may be most effective for your cancer 
•    If you are at risk of developing a further cancer in the future and potential screening and risk reducing options 
•    Whether your relatives are at increased risk of cancer
 

What is a Genomic test? 

A gene is a specific sequence of DNA. Each gene performs a particular role in the body, some genes help to prevent cancer. A “variant” is a different code to the standard gene sequence. Changes to the gene sequence can affect how the gene functions. 

The exact effect depends on the gene involved. There are different types of genetic tests: inherited (germline) and cancer-specific (somatic).

Testing for inherited variants (germline) testing

This test, called R208, is an inherited variant test. This test can pick up gene variants that are present in all of your cells and have been present since you were born. Your DNA is a combination of both of your parents, so this type of gene variant is usually inherited. Inherited (germline) variants may tell us why a cancer occurred. These variants may also predict the risk of future cancers, in you and your relatives.

Testing for cancer-specific (somatic) variants 

This is separate to the R208 test but might be mentioned by your cancer treatment team. A somatic test looks at the DNA in your tumour, rather than the DNA in the rest of your body. These variants are not inherited and cannot be passed on. Somatic variants may give us information about your cancer type, or what treatment is most suitable for you.

Are other cancers associated with these genes? 

The R208 genes primarily influence breast and ovarian cancer risk. Some R208 genes also influence the risk of other cancers, although this risk is smaller than the risk of breast cancer. Associated cancers can include; ovarian cancer for women. Pancreatic and skin cancer for men and women. As well as prostate and male breast cancer for men.

Important information about your data 

Your genomic data and samples will be stored as part of your health record. DNA samples may be used anonymously for quality control. All data is kept securely and confidentially in line with UK law and NHS policy. More information can be found at www.england.nhs.uk/contact-us/privacy-notice Information in this guide should be used to supplement professional advice specific to your circumstances. If you have any questions, it is important to ask your medical team 
 

‘BReast CAncer Genes and Me’ is a digital patient empowerment project that’s set to transform the experience of people with a diagnosis of breast cancer that might have implications on other family members.

The project introduces the concept of genetic testing for breast cancer in an accessible format, presented as a six-part series of colourful animations. Each video features digestible information accompanied by gentle music and a clear voiceover that takes the participant through the process and implications of genetic testing.

This project has been developed as part of a Collaborative Working initiative between the South West Genomic Medicine Service Alliance and AstraZeneca UK, and has been co-designed by clinicians and patients alike, providing an overview of the genetic testing pathway from start to finish. We have been working with Magentus Global Health Tech for our digital solution.

BReast CAncer Genes and Me aims to streamline the consent process for breast cancer genetic testing through a digital consent pathway, supporting patients and their families through every stage and guiding them to become confident decision-makers.

View the videos on our YouTube channel.

Acute Oncology Clinical Nurse Specialists 
Gate 10, Brunel building 
Southmead Hospital 
Bristol 
BS10 5NB 

Acute Oncology Number 07860 783116 

Macmillan Wellbeing Centre 0117 414 7051

If you have a goal to review your medication, this will need to be with your GP or pharmacist. We do not prescribe medications in pain management, however we can help advise you how to make a plan towards achieving your medication goals. 

We know pain impacts on many areas of life and often people must adapt to changes in their circumstances. Living with pain has many challenges and pain psychology supports people to re-build their lives and adapt to change, develop coping strategies, and support their emotional wellbeing. 

Pain management focusses on the strategies you can put in place to minimise the impact pain has on daily life. We do not offer medical investigations and for most people medical investigations have been completed. If you are concerned in relation to medical problems, it would be advisable to discuss this with your GP.

Chronic / persistent pain is a very common problem. Pain is complicated and often there are many automatic systems involved in long term pain. It is recognised as a long-term condition and is very real. 

Physiotherapists in pain management look at all the factors impacting on function and pain levels. It is important to develop functional abilities and activity, whilst improving the control of pain. The physiotherapist will work with you to find a successful level of activity that can then improve over time. This may be a different approach to previous experiences.

We will tailor the support that you receive in the pain management service to you, so everyone’s route through will be slightly different. It might be that when you come to the end of the work that you do with us you might be signposted elsewhere. Or it might be that you take some time to put the strategies that you have learned into practice for yourself.

If you have used Badger Notes at a different trust or in a previous pregnancy, please see "Adding your pregnancy to an existing account" section below. 

You will need:

• The passphrase given to you by your midwife or booking clerk.
• Your mobile phone to receive your verification text. 

To create your account: 

1. Open Bader Notes app and tap "Crease account."
2. Agree to the terms and conditions if you are happy to.
3. Enter the email address you gave to the midwife or booking clerk and use the activation phrase given to you.
4. You will be asked how you would like to register. Please register with Badger Notes. We do not recommend registering with NHS login.
5. Enter the verification code you received via text. 
6. Create your password.
7. Create your PIN. 

You can change you Badger Notes language through the tab with your current chosen language:

1. Tap/click on the three lines at the top left of the screen.
2. Tap on English (this is selected as the default).
3. Select the language you require.
4. Tap continue. 

You will need:

• A new activation phrase from your midwife or booking clerk

To add your pregnancy: 

1. Log in with the same details used in your previous Badger Notes account.
2. Tap on the three lines on the top left of the screen.
3. Select Add a care record.
4. Add new activation phrase provided by your midwife.
5. Your current pregnancy is now added to your old record.

You will have the opportunity to complete your pre-booking questionnaire before your booking appointment with your community midwife. You can return to the questionnaire and update up to the day of your booking appointment. 

You can change your phone number or email address associated with your Badger Notes log in through the Edit Profile tab.

(This does not update the phone number or email address that the hospital has on record for you, to do this you will need to speak to your community midwife). 

Your care provider may ask you for key details such as your hospital number, if you contact them over the phone. 

The key details are:

• Your key information, e.g. NHS number, hospital number, due date etc.
• Your circle of care, for example GP and Named Midwife. 
• General health history.
• Medical history.
• Plan of care for your pregnancy.
• Current management plan(s).

To find these details:

1. Tap on the Maternity Record tab at the bottom of the app.
2. Select My Key Details.

We recommend you have push notifications switched on to allow appointment reminders and important updates from our maternity unit.

To change notification settings:

1. Tap on the three lines on the top left of the screen.
2. Select Settings.
3. Enable or disable the options and save.
4. Notifications can be found in the bell icon on the top right corner of the Care Plan page.

In the Care Plan tab, you can see a weekly summary of your pregnancy.

For example at 28 weeks, you will be offered routine screening blood tests and recommended to read the information leaflet on screening.

You will be able to:

• Write some thoughts (only visible to you) into the diary by selecting Add photo or diary entry.
• Upload an image for your own purposes (this is not visible to your maternity staff).

In the conversations tab, you can:

• Write antenatal, postnatal and birth plan thoughts and notes to speak with your midwife or doctor about at your next appointment.

Your midwife or doctor will be able to see these notes however they will not be notified of an entry therefore it is very important not to put any urgent messages in this area.

A summary of your maternity notes can be found within the Maternity Record tab. 

To view your antenatal care summary:

1. Tap on the maternity record tab and scroll down to the summary
2. Scroll to the row you would like to view.
3. Click to open and scroll to view the details. 

You may need to turn your phone landscape to make viewing easier.

Our hospital maternity leaflets are available in the Badger Notes Library tab. 

These can be viewed throughout your pregnancy and after birth.

You can also access the Glossary to help you understand any new medical terms you may see in your notes.

Leaflets which have been specifically recommended to you by your midwife or doctor can be found by:

1. Tapping on the Care Plan tab.
2. Tap on recommended reading at the top of the page.

To view your hospital contacts, including emergency phone numbers:

1. Tap on the three lines on the top left of the screen.
2. Select the Hospital Contacts tab.