This is what I was thinking of sending to the BBC. Any comments welcome. On September 27 2012 my daughter Helen (then 18) was involved in a car crash on the outskirts of Newbury. At the time of the accident it was unknown whether she would live or die. She did survive after interventions by the medical and surgical teams at John Radcliffe Hospital. She was left with very severe brain damage and is now in a vegetative state in a neuro rehabilitation hospital. Her outcome is still uncertain but there are small signs of improvement. When a loved one is involved in such a traumatic ordeal, friends and family look for help. Brain injuries (including haemorrhages, strokes and brain infections) are usually sudden onset and have an uncertain outcome. There are not many places to turn to for information and support. In the early days after Helen’s accident there was no-one to talk to about what we were going through as a family. You just need someone to talk to who knows how you are feeling. An internet search turned up no-one who could help in the immediate period after an accident nor when it was obvious that Helen was not going to wake up from her coma. There are support networks for the families who have suffered a brain injury but there are limited resources for those in a minimal awareness or vegetative state. That’s when my search found Brain Injury is BIG. Brain Injury is BIG is a support group for people who had loved ones with devastating brain injuries. They may be severely disabled, in a vegetative state, minimally aware/conscious or have locked in syndrome. The group was started 3 years ago by 5 ladies who had loved ones with severe brain injuries in a ward of a large rehabilitation hospital. The group has grown since then to over 250 members. They used personal experiences to establish a network of support, reaching out to families affected by brain injuries. They shared their stories. They shared their heartbreaks, the triumphs and the information they gained whilst dealing with their circumstances. When you find yourself in this situation, after an exhausting stint in the intensive care unit it is normal to go home to research craniotomies, Glasgow coma scale or medications etc. You want to speak to people who can answer your questions, or offer a shoulder to cry on. That is what BIG is for. At the heart of BIG is the forum. This is where other people going through the same situation can find answers from others who have been through similar experiences, people who know exactly what you’re going through because they’ve been there too. The BIG forum is there to share stories, to ask questions or give support to others. Most of all people use BIG to be amongst others who understand. When someone you love has this level of severe brain injury life changes for everybody in your family for ever. You cannot face it alone. The most recent fundraising goal has been for a dedicated phone line. This number will be rolled out across hospitals, care homes, clinics, doctors and many more places where people can pick up a phone and hear a supportive voice at the end of it. The phone line is expensive to run but a vital part of the ongoing support network. The running costs are approx £2500 per year. The website carrying the forum also costs over £6000/year to run. Fundraising is a vital part of keeping these supports running so that people in need can be helped anytime they need it. The charity does not receive any government funding and they are raising funds to keep a vital support and help line running. The charity has been mentioned on page 45 of the new Guidelines for Disorders of Consciousness published by the Royal College of Physicians. They have been acknowledged as filling a big gap in care for families. This support line has been a vital point of contact for families in this situation. Funds are also being raised to help families who need additional support in the form of physiotherapy, speech therapy or occupational therapy. Often people in low awareness states do not receive funded therapy sessions that are beneficial to keeping a good range of movement, exploring any communication possibilities or stimulating senses. The only option for many families is to fund these sessions themselves. Brain Injury is BIG believe that everyone should be able to access these services without having to fund it privately. They will be paying for sessions for people unable to get them on the NHS. On 17th August 2014 a group of 14 friends, family and a few random people up for a challenge, calling themselves Helens Hope are undertaking the Tough Mudder challenge in Cirencester.
Posted on: Sat, 17 May 2014 19:54:48 +0000
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