The Next Step in Haven's Cerebral Palsy Programme

Cerebral Palsy is the leading cause for chronic disability in India and, as such, we eagerly awaited the arrival of Asis Ghosh for his first time visit to the Haven Centre on February 7th 2017. As the Deputy Director of Therapy at the Indian Institute of Cerebral Palsy (IICP), Asis was able to provide highly skilled care and bring desperately needed flexibility and comfort to the 15 children attending the CP Camp. What was most amazing was watching him use everyday objects and toys as tools to aid limb movement and spinal posture. These brought instant relief and noticeably better flexibility. Using these "tools" he then went on to orchestrate a wide range of such simple, practical and easy excercises that they could easily be replicated by anyone. This was a real eye opener for us and for the parents who were anxiously looking on.

Asis's visit showed us that not only do we have a long way to go to try to help these children, but also that we need this type of professional expertise along with the vast knowledge within the IICP. Our thanks must go to Dr Reena Sen, the Director of IICP who has contributed immense amounts in initiating our CP project. Without her thoughts and moreover her approval, the project would not have had a chance to commence. She spent a long time in meetings in Kolkata where the seed of the project was sown. Our biggest thanks are solely reserved for Prof Sudipta Purkayastha who, through his connections, brought about the introduction to the IICP; without his involvement, Haven would not have able to welcome this specialised care for our children with CP.

Following Asis Ghosh's visit to the centre, we are extremely happy to announce our latest initiative: a collaborative project between Haven and IICP starting in May 2017 for one year with provisions for future extensions after reviewing the outcomes. Trained IICP staff will be visiting our centre at regular intervals to provide direct intervention to the 35 children we have identified as being most vulnerable.

IICP will also be responsible for helping the parents of CP patients to assess their children's needs and manage them. This will be carried out through hands-on training, to allow them to take on board recommendations that will be given at follow-up visits to our resident physiotherapist. Furthemore, IICP will ensure that the parents and the care-givers will be given training to take leadership in advocacy for facilities, schemes and rights with reference to the Persons with Disabilities Act (1995).

Following the recommendations from IICP, Haven is looking to the future and has put in place learning initiatives for some of the older children, who are too disabled to attend school. This includes practical skills that could eventually help them gain employment, and hopefully one day become self-sufficient, such as sewing and embroidery. These activities are also tailored to their physical needs, to avoid any further discomfort while simultaneously strengthening their limbs. Two of our longest-standing patient patients, the twins Moni and Rani are already learning to sew.

Though this project is still in its infancy, the work that has already been done is certainly positive and exciting for all those involved. Haven is very grateful to the IICP's support in this venture, and we look forward to seeing how far it will take our patients in the future.