In Charity News

The patient experience: what are your top tips?

Following last week’s inspiring and thought provoking BBC Radio 4 Today programme with Nick Robinson and Tessa Jowell talking bravely about their experiences with cancer, we set out to expand upon the 4 key themes of their discussion. You can read about them here:

Today Helen Bulbeck, brainstrust’s Director of Services and Policy tackles the final theme from the programme – your experience.

On the one hand this should be the easiest to write about (after all, its in brainstrust’s DNA) but it is so complex; there is so much at play.

Why is it so hard to get right?

Why is it so hard to ‘get patient experience right’? How do you tread that fine line between telling the truth and nourishing hope? Poor communication is associated with worse clinical and psychosocial outcomes, worse control and worse adherence to treatment; it causes confusion around diagnosis and prognosis which means that stress levels are high for everyone. There will always be discomfort when talking about a life limiting, or life changing diagnosis, but having these conversations in a sensitive, honest and supportive way can be transformative.

Handled well, a patient and their caregiver should be secure with the uncertainty that a brain tumour diagnosis brings, be open about not knowing and taking risks, and know that their inner dialogue is constructive. Have a look at our guide for some pointers about how to have a good conversation. Sadly, we know that these conversations are not always handled well and that people are not always told that they have a brain tumour in a supportive way. The National Cancer Patient Experience Survey evidences this. Only 32% of you were given a care plan. 38% of you didn’t understand the explanation about what was wrong with you. A little over 40% of you felt that you had enough support during and after treatment.

Yes – it is a complex pathway, full of twists and turns, and unexpected moments (cancer treatment plans rarely progress linearly – but even knowing to expect the unexpected can help).

You are the expert on you

In medicine, data points, clinical trials and experience guide choices in the road to be taken. After all it is our (the patient’s) road map – we look to our clinical team for guidance but ultimately the decision which way to go is ours. And this is when resilience, the ability to be agile is key. The patient is the expert on them – on their social circumstance, their appetite for risk, their context, their values and preferences. The clinician is the expert on diagnosis, treatment options and outcomes.

So what makes a good experience? How do you respond to emotion, deal with the stress of living with a brain tumour, manage expectations, nourish hope when at times the situation is bleak? As a clinician you can’t do it all. The professional obligations begin with designing effective and safe cancer treatment plans individualised to each patient, their goals, their physiology, and the biological aspects of their cancer. They must also manage the symptoms of the disease, its treatment, and the myriad of psychosocial, spiritual, and physical distresses accompanying a cancer diagnosis. You can read more on this here.

Stepping up to the mark – communicating well

As patients and caregivers we need too to step up to the mark. There are some guiding principles which will help us to make sure we have a good experience:

  • People must stop asking ‘are you ok?’ (nobody ever answers this with the whole truth) and start asking ‘what are we struggling with the most?’ And if we aren’t asked it then we need to make sure we are asked, or reflect on the question regularly ourselves. You don’t need to know the answer but just saying it to someone can unlock the challenge.
  • Prepare for consultations by talking with your friends and family about what would be a good outcome before you knock on the doctor’s door. Tell the clinician what you want to get out of the consultation. Revisit this at the end of the consultation. Summarise next steps and then think who is in your team who could help you with these actions.
  • Give those around you some pointers as to how they can help. Be specific in your ask and don’t feel bad about it. If you were in their shoes you’d want to help.
  • Read, read and read some more. That way any decision you make will be an informed one. And if you don’t want to do the reading ask someone close to you to do it and distil the key messages for you.
  • Ask about clinical trials. Only 24% of patients were asked if they would be interested in research. It is incumbent upon us, the patient community, to ask whether there are any appropriate trials and how do you donate tissue, if you are having surgery.

As friends and family of people with a brain tumour, we need to be thoughtful, considerate and respectful. Some tips we have heard on our ten year journey supporting people with a brain tumour at brainstrust include:

  • It’s fine to say ‘I don’t know what to say’
  • Be specific in your offer of help, not ‘how can I help’ but, ‘I can help you with transport’, or ‘can I cook you a meal’. And it’s ok to offer more than once.
  • If you know someone who has died from a brain tumour, we don’t always wish to know.
  • Sometimes it’s good to talk about something else.
  • It’s good to laugh
  • Don’t judge the patient if they chose to work
  • Support with any diet or lifestyle changes, for example many people with a brain tumour decide to reduce sugar intake

It only takes seconds for a clinician to ask you ‘what do you need to have an improved experience?’ And you need to know what to say. Talk to us – we can help you articulate it.

Making the conversation better – what’s worked well for you?

What’s your top tip for a good experience for you? Let’s start the conversation.

You can share your tips on our facebook page: www.facebook.com/brainstrust or email hello@brainstrust.org.uk

 

 

 

 

 

bbc inspiration3
Inspiration from Tessa Jowell, Nick Robinson and the BBC – what this means for you. Part 3.Brain News
research boost
Brain tumour patients set to benefit from massive research funding boostResearch News

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