Tom’s Trust was set up in July 2011 after Andrew and Deborah Whiteley lost their 9 year old son, Tom to a brain tumour in November 2010.
The charity is dedicated to raising funds to provide clinical psychologists for children with brain tumours. This was after Deborah and Andrew’s own personal experience after spending limited time with a clinical psychologist during Tom’s treatment. It became clear very quickly how more clinical psychologists could make an enormous difference to these children and their families during treatment to support the family and after treatment to help rehabilitate the child and continue support of the family and child. Tom’s Trust is also dedicated to providing clinical psychologists to bereaved families for up to one year after the loss of their child. Tom’s Trust has set out to provide a clinical psychologist from the point of diagnosis.
Clinical psychology is underfunded and is an under recognised but essential role which needs to be filled.
Brain cancer will always leave a child with an enormous rehabilitation mountain to climb due to the site of the tumour and sadly it is rare that they return to what would have been their normal physical or mental capability.
Among other important roles, the clinical psychologist should perform ‘neuro-cognitive testing’ (which is a thorough learning ability test) at the point of diagnosis and before the start of the potentially damaging treatment. This is being done to allow the whole therapy team a benchmark of the child’s full ability and give them the capability of attempting to rehabilitate the child back to their full potential.
Throughout the treatment the clinical psychologist can also help the children and their families to prepare for numerous and traumatic operations.
Approximately 30 children in East Anglia are diagnosed with a brain tumour each year. Of these 30 children 20 of them require on-going rehabilitation throughout their childhood. Approximately eight children a year die from a brain tumour.
We have now created a charitable partnership with two other East Anglia based charities – Anna’s Hope and Camille’s Appeal and signed contracts with the NHS to create the UK’s first ever complete rehabilitation service dedicated to children with brain tumours. The service will be made up of therapists essential to give the children the best rehabilitation outcomes and change their lives for the better. Tom’s Trust will provide the clinical psychologist within this service.
This service will not only change the outcome of these children’s lives, it will support also provide the collection of data that is not available and will change the future of rehabilitating children with brain tumours forever.
Tom’s Trusts’ plan for the future is to continue to create charitable partnerships so that all hospitals throughout the UK can benefit from the rehabilitation service being created at Addenbrooke's Hospital, Cambridge. Tom’s Trust will be dedicated to providing the clinical psychologists necessary within these services.