On 17 May 2012, Martin Barrow presented a excellent feature in the Times UK. He wrote
" Head injury victims are surviving to face a severe lack of support". The Times continues to cite the relevant statistics "Over half a million people in the UK of working age live with permanent disabilities as a result of head injuries. This number is apparently rising as more people are surviving car crashes, industrial injuries, sporting injuries, falls, violent attacks. Each year one people attend Accident-Emergency with head injuries. In the past, 90 percent of people with severe brain injury died; now 90 percent survive".
Barrow rightly points out that while acute care has seen a considerable improvement, much needed rehabilitation and support is poor. Headway research due for publication and reviewed by the Times cite a bleak picture
" Barely one quarter of brain injury carers have received carers assessment, according to the survey for the charity, even though it is essentially for obtaining disability support in the community, including benefits, respite care and equipment. Only 7 percent of carers receive help from social workers, and 59 percent show signs of clinical depression. One of the main complaints concern local authorities failure to acknowledge the complex needs of brain injury victim and their families"
The article above brought back memories. Ironically, the above research shows that in 20 years nothing much has changed for head injured patients.
Our late father had a head injury following a brain infection in 1982. He was a highly functioning man at aged 52, a consultant surgeon, who subsequently developed the kind of problems exhibited in many head injured patients - this included behavioural issues, cognitive deficits, psychological trauma and memory deficits. The resultant loss of employment and difficulties in adjusting to disability was a huge burden for him. He faced the stigma of his condition and was effectively shunned from society.
We were broadly left unsupported for a decade until I reached medical school. The medical professionals gave us the impression that my father had no hope left. We refused to institutionalise him or give up. During that period, I discovered that the local health authority were reluctant to assist. Head injury was low priority. The local health authority developed a paper mountain of letters from me [ written by hand]. They denied the potential of any rehabilitation.
I refused to accept the local assessment so my research at the time took me to the United States where I discussed matters with Dr Nathan Zasler. I cited my theory of structured community based rehabilitation programme. He opened the first door for me. A rare known fact is this - without medical backup - there is no potential of funding or support.
As the health authority in question refused funding, I obtained Charitable funds, designed a community based programme and implemented it using a privately hired carer. By 1995, I demonstrated the positive results of this programme to his UK neurologist who wrote in support of funding for a specifically designed community based rehabilitation programme.
From 1995-2005, the programme was designed and implemented by the Learning Disabilities section. Our father showed improvement in mood, behaviour and cognitive functioning. From being dependant, home bound and isolated, in three years he became relatively independent and sociable. His programme included as follows
1. Memory retraining - using newspapers, books, colourful Television programmes daily.
2. A exercise programme co-ordinated with the local leisure centre to improve mood and self image.
3. A IT assistance programme implemented by IT Help. .
4. Social activity programme involving retraining in shopping skills, going to the cinema and restaurants.
5. Other options include gardening groups and the involvement of local colleges who have 1:1 assistance for disabled people.
The key therefore is to obtain information from your local community and plan a day to day activity list for the member of your family who is affected. This can be shown to your medical team to show a pro-active approach to rehabilitation and they will determine whether it is applicable.
To support the above, in 2002, research showed that
"In severe"."In severe traumatic brain injury, a multidisciplinary community based outreach rehabilitation programme improved social functioning"
The United States appears to have been more pro-active and positive in developing community based rehabilitation programmes.
Self empowerment to survive is essential in the UK. While the world and his own profession forgot our father, he learned to live a wonderful life for ten years and bravely overcame many of his difficulties. He would want others to understand - where there is life, there is always hope.
Dedicated to our father Mr Prafulla Chandra Pal Bsc[hons] MBBS, DTM&H, FRCS for his bravery in overcoming his disabilities and never giving up. His motto " Self -help is always the best help"