Is it easy to take part in the UK Government’s biggest survey of brain injury support services?
How easy is it for brain injury survivors to take part in GOV. UK's biggest ever survey of their support needs? Here's what happens if they try…
The Government is making a new plan for acquired brain injury (ABI). We want to know your thoughts and ideas… 
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If you ever thought there is not enough help for brain injury survivors, then now is the time to speak up – because the Government is all ears for ideas.
They want to know how acquired brain injury (ABI) changes people's lives.
Then, they can put in place the proper care and support for them and the people who care for them.
It is a UK Government plan known as the Acquired Brain Injury (ABI) Strategy.
If you are over 16, a brain injury survivor or their family member or carer, or a healthcare worker, your thoughts on the best strategy are wanted.
And to find out more about brain injury needs around the UK, you are also being asked to share:
- Your experience of brain injury
- How it has affected you or others
- Your ideas on how to make things better
The ABI Strategy will support people in England, Wales, Scotland, and Northern Ireland.
But how do you add to all the evidence gathered by the beginning of June 2022? And how easy is it?
Life can be very hard for people with an acquired brain injury and the people they know.
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We took a look at two of the ways you can pass on your brain injury views and ideas to the Government.
1. The Easy Read
You can fill out a straightforward questionnaire. It has pictures that help to explain the questions.
You give your answers by ticking boxes or leaving comments.
Those pictures and boxes mean the questionnaire is easy to understand - but they also take up lots of space!
That means the questions are spread over 21 pages. There are also seven pages of easy-to-read advice.
So, the questionnaire seems big, but it is easy!
Many people might need care and support for different things in their lives.
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There are four parts to the questionnaire. You can choose not to answer if you prefer not to.
Part One
The questionnaire starts by asking about you, including:
- The area of the UK you live in
- Your age
- Your ethnic group
- Your gender
This information helps to show the needs of different groups of people.
Part Two
The following questions are about brain injury. They include:
- Have you ever had a brain injury from something that happened since birth?
- If you have had a brain injury, how did it happen?
- Do you need any care and support because of your brain injury?
- Do you give care or support to someone with a brain injury?
Part Three
You are asked if the ABI Strategy should also support people with other brain conditions.
Work is going on already around dementia, stroke, autism, and learning disabilities.
But should people with the following conditions also be included?
- Cerebral palsy
- Epilepsy
- Motor neurone disease
- Multiple sclerosis
- Parkinson's disease
You are also asked what the ABI strategy's overall priorities should be.
You can give your ideas, or there is a list of over 30 to choose from, including:
- Telling people about ABI and helping to stop it
- Support for people to live how they want and do as much as they can
- Information about the support people need and the choices they have
- Support for people who care for someone with a brain injury or other brain condition
- Making sure that everyone is treated fairly and gets the support they need
- Making sure that research helps to make people's lives better
Now, you are asked to choose your top three priorities and say why you chose them…and that is it!
Part Four
Once you have finished the questionnaire, you may want to keep in touch with the people who put it together.
They work at the Government's Department of Health and Social Care.
You may want to change your answers, or you may want more information about the ABI Strategy.
If so, you can leave an email address here so you can be contacted.
There is also information about how and where to email or post your completed questionnaire.
We want people's ideas about what should be in our new plan about acquired brain injury.
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2. The In-depth Survey
This is another way to pass on your brain injury views and ideas to the Government about the planned ABI Strategy.
Some of the questions are the same, but there are many more options to choose from in others.
Plus, you can also take a closer look at the evidence needed and the people trying to put the strategy together.
They include the Minister of State for Care and Mental Health, Gillian Keegan, and the Member of Parliament for Rhondda, Chris Bryant.
You can read their joint message launching the call for evidence in which they say they know how ABI can affect people's lives, including:
- Family life
- Close relationships
- Employment
- Personal finances
And they are also aware of how it can cause complex long-term challenges with:
- Cognition
- Functional abilities
- Personality
- Independence
We are pleased to launch this call for evidence so that we can hear first-hand from the people most affected by ABI.
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Gillian and Chris explain in greater detail the aims of the ABI strategy planners, which include:
- To hear first-hand from the people most affected by ABI
- To ensure the actions needed are prioritised
- To learn from examples of best practices.
- To improve care and support for people living with an ABI
- To prevent brain injuries where possible
And, as you can expect, the in-depth questionnaire delves more deeply.
Part One
The questions begin around your experience of ABI and seek more details than the easy-read version.
For example, when asked what type of brain injury you have, there are 13 options to choose from, including:
- Traumatic brain injury
- Brain aneurysm
- Encephalitis
- Hypoxic and anoxic brain injury
Part Two
The following questions ask for your views on the focus of the ABI Strategy.
You are asked if it should also support people with other brain conditions, as listed in the easy-read version.
- Cerebral palsy
- Epilepsy
- Motor neurone disease
- Multiple sclerosis
- Parkinson's disease
Part Three
Now, you are asked what the ABI strategy's overall priorities should be.
Again, there is a list of options, but this time there are over 70 of them, divided into ten ABI priority areas.
Here are the ten areas:
- Awareness, identification, and prevention
- Healthcare
- Social care
- Employment
- Benefits
- Sport
- Housing
- Supporting specific groups
- Addressing disparities in care and support for people with shared characteristics
- Research
Part Four
As in the easy-read version, you will find details of how and where to send your answers and keep in touch with the strategy team.
There is further advice to those with ABI expertise on how to submit supporting data, research, or reports.
And there is information about how your evidence and data will be used and protected.
Don't delay!
You have until 11.45 pm on the 6th of June 2022 to send your answers and make your voice count! Head over to:
The easy-read survey here: ABI Strategy: Call for evidence (easy read pdf.)
The in-depth survey here: ABI Strategy: Call for evidence (in-depth)
Further reading…
"…what we need to be able to do is give people back their quality of life after they've had an acquired brain injury." MP Chris Bryant
"It has been a real collective effort from charities including The Child Brain Injury Trust, The Children's Trust, The Disabilities Trust and Headway, supporters, service users, and MPs, and it is wonderful to see that collaboration pay off." UK Acquired Brain Injury Forum (UKABIF)
Read more about the battle that began over three years ago to bring into being a UK-wide strategy to support families affected by a brain injury:
UK Parliamentary debate: Neurorehabilitation - a moral right?
A brain injury survivor's open letter to MPs urging them to back the Acquired Brain Injury Bill
New lived experience evidence as national ABI Strategy welcomed
References
1. Gov.UK: ABI Strategy: Call for evidence, easy read summary
2. Dept. of Health and Social Care - ABI Strategy: Call for evidence (easy read pdf.)
3. Gov.UK: ABI Strategy: Call for evidence summary
