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NHS Patient Centred Communication

The NHS has produced guidance[1] that outlines key principles to help clinicans deliver personalised, patient (we’d prefer person) centred communication to you if you are waiting for care.

We’ll share the key principles here, so people with a brain tumour:

  • Have a better understanding of whats at play, if treatment is delayed,
  • Can engage constructively with their clinical team to ensure the best outcomes.

COVID-19 has impacted in so many ways. We know people are facing delays in scanning and surgery, and changes to treatment plans – especially the members of our community with low grade and non-malignant tumours.

This uncertainty is hard to live with, but has to be balanced with the risk versus benefit. For example, the risk of having surgery and then not having access to the necessary care afterwards due to lack of beds or staff shortages, would outweigh the benefit.

How are decisions made, and how can you play an active role in decision making?

Making these decisions is incredibly difficult for all involved – patients, caregivers and healthcare professionals (HCPs) alike. Communicating when we are stressed, even without the added pressures of COVID-19, is a tough ask. HCPs have to define how much information a patient wants, nurture hope when the future looks bleak, and manage the expectations of patients and caregivers when their wants and needs differ. Of course, for people living with a brain tumour, the uncertainty, fear and disappointment are incredibly hard to manage.

The key principles outlined by the NHS to help clinicians deliver personalised, patient centred communication to you if you are waiting for care are explained below.

At any point when you’re reading these, do get in touch with us. Call your support specialist, email us or call our helpline on 01983 292 405.

Personalised communication

This means that you should be told about the next steps of your care pathway and the likely timescales. This should mean that you can discuss the risks and benefits of any delay. Talk about your worries and your fears – explain how the delay makes you feel and ask what support is available to you.

Clear language

Language should be easy to understand, clear and accessible. If any technical terms are used always ask for an explanation.

Shared decision making

Making decisions together that are right for the patient is called shared decision making. You have a right to be involved in discussions and make informed decisions about your care.

  • You are the expert on you! You know what your context is, what your appetite for risk is and what your values are.
  • Clinicians are the experts on what options are available.

Making shared decisions needs preparation and thought – it doesn’t just happen. It is a collaborative process that involves you and your HCP working together to reach a joint decision about your care. It could be care that you need straightaway, or care for further down the line (e.g. advance care planning).

Three-talk model[2]

The most accessible and easily embraced model is the three-talk model. This is a practical model of how to do shared decision making that is based on following choice, option and decision talk stages during the consultation.

The model has three steps:

  1. Choice. The patient asks ‘What are my options?’
  2. Options. Often described by integrating risks v. benefits. The patient asks ‘what are the pros and cons of each option for me?’
  3. Decision. Helping people explore their preferences and make decisions. The patient asks ‘What do I need to help me make a decision that is right for me?’

Patient safety

The NHS is open for those that need it. Hospitals are doing all they can to reduce the risk of catching COVID-19. You should feel able to discuss the balance between the need for treatment versus the risk of coming into hospital with your clinical team.

If you’re being asked to attend a hospital appointment, all steps to keep you safe from COVID-19 have been taken. Some scanners are being kept ‘clean’, for example. This means no patient who has tested positive for COVID-19 will use that scanner. Separate entrances and pathways have been set up for COVID-19 free patients.

Managing appointments, delays and cancellations

Clinicians are asked to provide a clear message with compassion if your care is being delayed. They should be clear about next steps, and honest if they don’t know when things will happen.

Contact points

You should be given a point of contact – someone you can call to get information. You should be able to leave a message out of hours and have an email contact too.

Some hospitals have set up a single point of contact (SPOC) to make things easier.

Interim information

If your treatment plan is changed, then alternative options should be discussed with you. If your condition gets worse, you should know who to contact.

Cancellation policy

You should know how to cancel your care if you want to. Likewise, if your clinician cancels your care this should be done with compassion, and in line with the Trust’s policy.

Communication strategy

Every Trust is different. There should be local updates about the impact of COVID-19 in your area, and timeframes for when care is likely to return to pre-COVID-19 levels.

We all have a role to play to make communication a positive experience. If you have any concerns about your care please talk to your clinical team – the NHS is very much open.

Get in touch today to find out more about how we can help you engage with your clinical care.

[1] https://www.england.nhs.uk/coronavirus/wp-content/uploads/sites/52/2021/01/C0855_i_Good-communication-with-patients-21-January-2021.pdf [accessed February 25, 2021]

[2] Elwyn Glyn, Durand Marie Anne, Song Julia, Aarts Johanna, Barr Paul J, Berger Zackary et al. A three-talk model for shared decision making: multistage consultation process BMJ 2017; 359 :j4891

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Introduction

The Brain Tumour Data Dashboard lets you explore up -to-date, population level data about the brain tumours diagnosed in England between 2013 and 2015. Using the drop down menus on the left you can select different groups of patients to view in the charts below. In these charts the number of patients for every 100 diagnoses is displayed as images of people. Patients have been grouped by date of diagnosis, type of tumour, age, gender, and region in England.

For each group of patients you can explore the different routes to diagnosis, the proportion of those who received chemotherapy or radiotherapy, as well as the survival of the patients within each group. For more information about what these metrics mean please see the glossary.

How to use

  1. Select the year of diagnosis using the drop down menu.
  2. Select your patient group of interest from the four drop down menus in the following order:
    1. Tumour group
    2. Age at diagnosis
    3. Region of England
    4. Gender of patient
  3. To view a second chart to compare different groups of patients, click the ‘compare’ button.The second chart will appear below the first chart.

*Note that the tool is best used on a laptop or tablet rather than a mobile phone*

Unavailable data

Some of the data in these charts is not available.There are two main reasons for this:

  1. How the data has been grouped

If you cannot select a patient group from the drop down menus, the data is unavailable because of how the data has been organised.

Public Health England has grouped the data like a branching tree. The bottom of the tree contains all the patients with brain tumours, and then each branch divides the data by a certain characteristics, like age, or location of tumour. But the data is divided in an order, starting with location of the tumour (endocrine or brain), then by age, region, and gender. Age is at the start because it makes a bigger difference to survival rates and treatment rates than gender or region. Sometimes, after the data has been split by type of tumour and age, there is not enough data to be split again. This is because to protect patient confidentiality groups cannot contain less than 100 patients. Because some groups cannot be split further, you cannot create ‘totals’ for everyone by region or gender. For example, you cannot see results for all ages by region, or all brain tumours by gender. If these totals were calculated and released, it might be possible to identify patients, which is why Public Health England cannot release this data.

  1. Statistical reasons and data availability

If you can select a patient group from the chart menus, but the chart does not display, the data is unavailable for one of several reasons:

  1. Data is not yet available for the selected year from Public Health England.
  2. Data is not available because the data quality is too poor to release this statistic.
  3. Data is not available as the statistic is not appropriate for this group.
  4. Data is not available because the standard error of the estimate was greater than 20% and so the estimate has been supressed.

Up to date brain tumour data

Brain tumour data may influence the decisions you make about your care. Data also helps you understand the bigger picture, or landscape, in which you find yourself.

Brain tumour data and statistics influence the focus, and work of organisations like brainstrust. The information helps us to understand the scale and impact of the problems we are setting out to solve.

This tool helps you understand the landscape in which you find yourself having been diagnosed with a brain tumour. This landscape can be particularly tricky to navigate as there are many different types of brain tumour, all of which have a different impact.

The information you see represents the most up-to-date, official, population level brain tumour data available for England. Over time we will be adding to the brain tumour data available and publishing reports, with recommendations, as a result of what we learn from this data.

The data behind this content has come from Public Health England’s National Cancer Registration and Analysis Service (NCRAS) and is a direct result of the ‘Get Data Out’ project.

This project provides anonymised population level brain tumour data for public use in the form of standard output tables, accessible here: http://cancerdata.nhs.uk/standardoutput

Incidence

The number or rate (per head of population) of new cases of a disease diagnosed in a given population during a specified time period (usually a calendar year). The crude rate is the total number of cases divided by the mid-year population, usually expressed per 100,000 population.

Malignant

Malignant tumours which grow by invasion into surrounding tissues and have the ability to metastasise to distant sites

Mortality

The number or rate (per head of population) of deaths in a given population during a specified time period (usually a calendar year). The crude rate is the total number of deaths divided by the mid-year population, usually expressed per 100,000 population.

Non-malignant

Not cancerous. Non-malignant tumours may grow larger but do not spread to other parts of the body.

Survival

The length of time from the date of diagnosis for a disease, such as cancer, that patients diagnosed with the disease are still alive. In a clinical trial, measuring the survival is one way to see how well a new treatment works. Also called ‘overall survival’ or ‘OS’.

Routes to Diagnosis

Under the ‘Routes to Diagnosis’ tab in the Brain Tumour Data Dashboard, you can explore the ways patients have been diagnosed with brain tumours. There are many ways, or routes, for cancers to be diagnosed in the NHS. A ‘route to diagnosis’ is the series of events between a patient and the healthcare system that leads to a diagnosis of cancer. The routes include:

  1. Two Week Wait

Patients are urgently referred by their GP for suspected cancer via the Two Week Wait system and are seen by a specialist within 2 weeks where they are diagnosed.

  1. GP referral

Diagnosis via a GP referral includes routine and urgent referrals where the patient was not referred under the Two Week Wait system.

  1. Emergency Presentation

Cancers can be diagnosed via emergency situations such as via A&E, emergency GP referral, emergency transfer or emergency admission.

  1. Outpatient

Outpatient cancer diagnoses include diagnoses via an elective route which started with an outpatient appointment that is either a self-referral or consultant to consultant referral. (It does not include those under the Two Week Wait referral system).

  1. Inpatient elective

Diagnosis via an inpatient elective route is where diagnosis occurs after the patient has been admitted into secondary care from a waiting list, or where the admission is booked or planned.

  1. Death Certificate Only

Diagnoses made by Death Certificate Only are made where there is no more information about the cancer diagnosis other than the cancer related death notifications. The date of diagnosis is the same as that of the date of death.

  1. Unknown

For some patients with a cancer diagnosis, there is no relevant data available to understand the route to diagnosis.

 

More information

If any of the statistical terms in this section of the brainstrust website are hard to understand, we recommend looking them up here:

Cancer Research UK’s Cancer Statistics Explained

http://www.cancerresearchuk.org/health-professional/cancer-statistics/cancer-stats-explained/statistics-terminology-explained#heading-Seven

If you are looking for help understanding terms relating specifically to brain tumours, and treatment, then the brainstrust glossary is available here:

https://www.brainstrust.org.uk/advice-glossary.php