In the United Kingdom it is estimated there are 35,000 childhood cancer survivors surviving more than five years after diagnosis. The Children’s Cancer and Leukaemia Group estimate there are 3,800 new cases of cancer being diagnosed annually in the 0-24 year age group. New advances in cancer treatments are improving survival rates and the numbers of children who live beyond their teenage years into adulthood are increasing year on year. Cancer treatment can result in long term health problems for many patients, but the burden carried by young brain cancer survivors is particularly life changing. Memory loss, fatigue and pituitary failure are the most significant and disabling. There is wide agreement that access to personal medical information improves outcomes but in practice there are both technical difficulties and cultural opposition. This opposition is mainly due to the poor understanding of how patients need to use their information and the value it offers. Our personal experience with our son has highlighted the importance of medical record access in supporting childhood cancer survivors progress through the life milestones that most of us take for granted.
It was early Spring in 2005 when our fourteen-year-old son was diagnosed with a rare brain tumour. The journey started with neurosurgery to remove a rare tumour growing under and around Tom’s brain was only partially successful and small brainstem stroke left our once healthy teenager with multiple disabilities. After two major surgical events to remove the tumour there were another twenty or more operations to treat unstable Hydrocephalus and other issues. In 2018 further complications required urgent brain and spinal surgery. The last fifteen years have seen constant interactions with healthcare providers and Tom has twenty separate sets of medical records which are not joined up. For young people like Tom this lack of joined up information not only affects his medical care but many other aspects of his daily life. Our family was fortunate to have a comprehensive paper copy of his record which we shared with different health providers. We also used this to evidence many other applications for support over the years.
Over the last few years new developments have started to address how our fragmented health information can be linked and accessed. The main focus on developing these new systems to share information is to improve health outcomes. There are many conversations around access and how our information should be used to benefit individuals and society. In considering levels of access offered to patients/carers and citizens it will be important to understand how people like Tom use detailed historical health information to support other areas of their lives.
For young cancer survivors, progressing through education is difficult with acquired disabilities. Fatigue, memory impairment, hearing and visual problems can limit study and without support through every stage of education, achievement is difficult. There is some protection offered by the Equalities Act 2010. Students with disabilities can apply for “reasonable adjustments” to mitigate for their disadvantage. Application for adjustments requires proof. That proof often requires submitting detailed medical evidence at each new stage of education and to each new provider. Access to our son’s medical records which include neuro cognitive assessment reports have provided the firm foundations for adjustments and mitigation repeatedly over the last ten years. Information has been submitted for:
- University Applications
- Application for disabled accommodation
- Disabled Student Allowance and Equipment Provision
- Individual Learning Plans either termly or annual
- Modification of course timetables and specifications
- Reasonable Adjustments for Examinations either termly or annually
- Application for scribes and support workers
- Application for funding for overnight supervision for examination arrangements
In the early years when Tom had profound double vision, ataxia, unstable hydrocephalus, vocal cord palsy, acquired deafness and brain cancer, we were ably supported by a hospital social worker who applied for a benefit called Disabled Living Allowance. Tom was granted a lifetime award. It went someway for loss of my earnings and the extra finances associated with the care of a considerably disabled child.
Over the years some physical problems improved but they were replaced by the increasing neuro cognitive effects. There were constant reassessments and gradually the type of support was reduced and changed. The types of benefit allowances also change with time and new benefits require new applications. Our access to detailed medical records has supported repeated applications for
- Disabled Living Allowance
- Personal Independence Allowance
- Employment Support Allowance
There have been times where the system has been broken and unresponsive and we have had to provide very detailed and specific medical evidence in the Appeals process. The ability to submit detailed evidence ensured success and ongoing support in periods of ill health and unemployment. Without access to detailed information negotiating the benefits system can be extremely challenging and failure can result in severe financial difficulties.
There have been other occasions where we have used medical information including:
- “Fit to fly” certification after brain surgery. Airlines require detailed information and recent scan reports before accepting patients on a flight within ten days of neurosurgery.
- Driver and Vehicle Licencing Authority
- Travel Insurance
- Dental treatment following cancer treatment
- Charity Application for disabled graduates work placement
Access to Tom’s medical records has provided the detailed information which has supported not just his health but enabled adjustments and support in other crucial areas of his life. That support has enabled Tom to progress through his life at his own pace and more importantly allowed him to reach his potential. He has just started his career at the age of twenty eight. He is employed part time with an employer who recognises disability and it’s difficulties and he is no longer dependant on the benefits system. The company embrace supportive work practices and Tom’s skills are celebrated in his part time capacity.
In the future there will be other applications, he may need a mortgage, life insurance and other things we take for granted. Tom needs to be able to remember his story with an accessible, online, longitudinal health biography to continue to support his everyday life. He cannot continue to rely on health providers who knew him 15 years ago to provide evidence of his long-term conditions. I will not always be here for him.
Although my writing is informed by childhood cancer there are many health scenarios and lives that could be supported with comprehensive access to personal health records. This is just our story. Easy access to health information would reduce the burden on the NHS by reducing repeated requests for supporting information. In designing new systems to support the sharing of records globally and within the National Health Service it is important to consider how citizen access to health records benefits other areas of our lives and not just health.
Written in recognition of the hardship all young cancers survivors face to achieve their hopes and dreams in the face of adversity.
World Cancer Day 4 February 2020.