Londoners’ experiences of life-changing injuries

Information

People we spoke with commonly had little or no previous experience or understanding of life-changing injuries before their injury and so entered a world that was new to them. The amount of information they wanted both immediately after the injury, and in the longer term, varied. Sometimes people did not want any information, particularly early on as they were afraid of what they might learn, or they were in denial about the extent of their injury. A few people described information as “boring”. Others wanted information, but sometimes found they had to search for it themselves rather than be given it by health or social care professionals.
Many people were so unwell at the time of the accident that information was given to family members. Marina, whose son Daniel was in a coma for around three weeks, said “my heart used to plummet to my feet” when the doctor came to speak with her, she was so frightened of bad news. Family members continued to look after information for some people who preferred not to know too much, or found it difficult to process or retain information. People with brain injury, in particular, could find information overwhelming. Wesley said if he needs to know anything “I just ask my Mum”, but one man (Interview 23) felt angry and frustrated that he was unable to “store stuff in my brain”.
The type of information people (and family members) wanted varied. It could be information about treatment options, benefits and entitlements, seeking compensation, their particular injury and the symptoms associated with it or information about ways of improving their health.
 
Information was given to people by various health professionals, including consultants, occupational therapists, prosthetists and rehab specialists. Several people said they would have liked more information from their consultant, particularly around treatment choices or after-care, and information about benefit entitlement from their GP. Jack said he felt “they just amputated me and got me out the door”, while Juri said his consultant advised him not to trust anyone who offered to cure his sight loss. Some people who had a spinal cord injury found the information and skills taught in specialist rehab centres “second to none”.
 
Information could be given verbally, or people were given leaflets or recommended books. People also found out information through the internet and support groups (with both information provided on and offline).
Hearing other people’s experiences could be helpful. It was reassuring to hear about people who had made a good recovery. Others felt their experience was so individual there was little relevant information to draw on. Barrie was told by the neurologist that “there’s no hard and fast rules, it’s gonna be different for different people”. This was reflected in some people’s approach to information; they described how they just had to “get on with it” and learn what works for them. Christopher accepted there were no answers to the questions he really wanted answered.
Sharing their own experiences was important to some people. Bill has a website (Mentor experiences – see ‘Resources’ section) in which he provides firsthand information for other people to share. Several people talked about finding support groups a good space to meet other people with injuries. Adrian described being “overjoyed to help out in any way I can”.

Last reviewed October 2015.

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