Meningitis Now staff member Andy Hopkinson

People affected by acquired brain injury after meningitis urged to help influence ABI policy

Andy Hopkinson | 13th May 2022

There’s still time to add your voice to a call for evidence to influence Government policy and improve services for people with acquired brain injury (ABI) – and we’d urge everybody affected to take the opportunity

Meningitis Now supporters invited to influence acquired brain injury policy

Rather than a formal consultation on specific proposals, the call for evidence constitutes a request for ideas on which Government can build. 

The online consultation runs until 11.45pm on Monday 6 June and you can find out more about it and have your say here.

You can also respond by emailing abicallforevidence@dhsc.gov.uk.

Government announced last December that it had given the green light to a new strategy for ABI and the call for evidence launched in March.

Make a strong case

Bev Corbett, our Director of Information and Support, is urging as many people as possible to respond to this call for evidence to help make the strongest case possible for improved services.

“All members of our Support team will be completing the survey and submitting replies based on their professional experiences,” she said.

“This is also your opportunity to tell the panel what would make a difference to you and your family’s lives. The more information and ideas the evidence panel receives the better they’ll be able to focus and prioritise their efforts on building a stronger strategy to benefit all those living with an ABI.” 

Bev added: “Meningitis is a small but significant part of the ABI family. This strategy is a hugely significant move with the potential to make a big difference to all those people who need our support because of an acquired brain injury.

“I would urge you to have your say to try and achieve the best possible care and treatment we can for those living with an ABI in the future.”

Lisa and Jess’s story

One person who has responded to the survey is Lisa, whose daughter Jess had meningococcal septicaemia at 23-months-old. 

Lisa told us: “At first glance Jess looked like she had made a full recovery, but years later it was found out that at 6 years old she was partially deaf and needed to wear a hearing aid and then at around 12 years old she was diagnosed with an acquired brain injury.

“As she has got older life has become more and more difficult for her as she hasn’t matured and grown independence like her peers. We struggle daily to get the support required as not even the professionals know how to best help her and we’re on a constant rollercoaster with the after-effects of a brain injury. 

“My daughter looks ‘normal’ and therefore isn’t taken seriously. She isn’t supported in many aspects of life. On paper she has an extensive list of her needs, but when presented to professionals they are always unsure how to manage her or what’s best for her.

Crucial time

“She is 16 years old now and we have had no support for three years. It’s this crucial time that is so important, as she is becoming an adult and there is no support there to help or advice on how to safeguard her or help her to have a ‘normal’ life.

“As a parent the responsibility is on me and that is really hard. Due to her disability being lifelong, more support needs to be given on a long-term basis. We’ve had family workers, youth workers, charities, school nurses and so on, who have still discharged us when support has been needed.

“I would like to see more charity work on supporting families with ABI and for it to be more recognised. An ABI doesn’t need to be someone severely disabled in a wheelchair – it can be a ‘normal’ looking child or adult whose disability is hidden to the eye but they have serious cognitive impairments. 

Cognitive difficulties

“My daughter has many cognitive difficulties that people overlook. For example, she is currently doing her GCSEs and even they don’t accommodate for a memory deficiency. She can revise for hours and not retain any information. A GCSE grade isn’t accurate for her and an open book exam would be more suitable, but this is currently not allowed.

“I often try to make people aware of ABI after meningitis when the child or adult show signs of it but are not aware of what it is and, having seen the call for evidence I really wanted to give my personal opinion on it.” 

Here’s the link again to have your say, or you can email abicallforevidence@dhsc.gov.uk.

Read more on Jess’s story and other young people living with an ABI following meningitis here.

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