Londoners’ experiences of life-changing injuries

Messages to other survivors, carers and professionals

 
To other people with life-changing injuries
We asked people if they had any messages for other people who had life-changing injuries, especially those who are relatively newly injured. Reflecting on their own experience, some said that in the early days after injury they would not have wanted other people telling them everything was going to be ok.
After injury, life is difficult and may not be the same as before, but things improve and people adjust to how things are now. As one man who had a brain injury (Interview 07) said, “One thing that always kept me going was knowing that one day things would be better”. People often said that recovery from a life-changing injury is not a quick process. It will be really hard at first, and people should be patient and take one day at time.
People said that when it comes to medical treatment, rehabilitation and care, it is important to ask questions, research your options and make your own decisions. For the most part, they said that health and social care staff had their best interests at heart and advised others to trust them. They wanted to encourage others to work hard, keep persevering and try their best in rehabilitation. But, recovery takes time and you should not feel like you have to rush it. They suggested finding out as much information as you can to help yourself and to be pro-active.
People advised others to make a plan, to think about the dreams they wanted to achieve and to set some goals. It is important to focus on the things you can do after injury, rather than the things that you can’t. Simon B, who broke his neck when he was 25 years old, said “if you there’s things you can’t do, find new things to do.” Several people advised others to try to get back to the workplace, or to volunteer and to pursue something that they are good at. You shouldn’t be afraid to admit that things are difficult and you can rely on friends, family and charities for support, but you need to work hard to ensure that your relationships don’t suffer. Nick Z said, “To start with you will be thinking more about the impact on your physical abilities, but I would encourage you to spend as much if not more time thinking about the impact on relationships”.
To carers
The carers we spoke to encouraged people to take each day as it comes, to have hope, and not to worry too much about the future. After injury when relative’s conditions became stable, carers of people who had brain injuries advised others to start thinking about helping them with their recovery.
They said it was important for other carers to accept any help they are offered. One carer advised that when living with someone day to day you don’t always see the improvements they are making and progress may be greater than you realise.
They encouraged others to accept that injury can change people and that they need to think about how to sustain their relationships.
To health professionals
People we spoke to were very grateful for the medical care they received from health professionals and wanted to thank the medical teams who had looked after them. A man with a brain injury (Interview 7) said staff treated him “like a person and not a stupid person”. Some people commented on the way they were treated by doctors. Dave suggested that doctors may become desensitised to injuries that they treat regularly but to keep in mind when treating a patient that it is the first time this has happened to them and to show empathy.
People valued the physiotherapy support they had after injury and some said that they wished more of it could be available. Other areas of support were suggested: Louise thought there needed to be more emotional support for people with a burns injury. She felt very isolated during her recovery and wanted health and social care staff to think about the social side of life-changing injuries. Barrie recommended more knowledge and awareness of what’s available for people when they come out of hospital. Jack said that more advice on the day-to-day impact of having a limb amputated would be useful. Christopher suggested that there is a need for a benchmarking exercise where a marker is set for patients to work towards in their rehabilitation.
 
Some people felt judged by health and social care staff because of their injuries or their life circumstances. Bryan wanted staff not to judge patients and to try not to equate everything they do with the injury.
 
To the general public
People said they’d had positive and negative experiences with others, and that there needs to be a greater awareness of disability amongst the general public. Adrian said it was especially important to raise awareness about brain injury because it is often not visible, and people with brain injuries may be misunderstood.
Simon A said he would like the public to be more open-minded. He said, “The world’s a better place by being this ridiculously rich tapestry that it is. Just be more open-minded”. Jamie wanted other people to learn from his experience and take more time and care on the road. 

Last reviewed May 2019.

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