Tom’s Story: Cancer Survivorship and Health Record Access

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. 

Cancer Mum: So what do Patients and Citizens want from accessible Health Records?

I was recently invited to participate in the procurement phase of a Local Health and Care Record (LHCR). I was one of a handful of citizens who had expressed an interest in finding out what was going in our local area as there had been no citizen engagement. My interest was centred around patient access and the functionality offered to citizens to contribute our patient held data. I was surprised by the wide variation in the suppliers solutions and it seemed to me that some had missed the point. In a Skype web call to moderate the supplier scores I suddenly realised that there was a gulf of misunderstanding about how the public might want to manage their health data. The suppliers and NHS professionals had clear ideas on what they considered a good patient centric model. However as a Carer for a person with complex long term health conditions and as an ordinary health-conscious citizen, their ideas did not match mine or come close. The professionals were impressed by data collection from wearables and pre-consultation information forms but what do the public really want from their LHCR?

The realities surrounding personal health data need to be explored and the way the public want to access and use their data needs to be understood by all those designing software solutions and commissioning new LHCR solutions. My experience in creating and managing my family’s longitudinal medical records has given me an insight into the needs and expectations of public users. So here are my thoughts.

We need to start by asking some basic questions.

1.What personal health data do people have?

In a simple scenario as an older, fit citizen I have a range of health data which I would like to contribute to my area in a LHCR. The healthcare landscape is changing and data can come from other sources from outside the NHS. So what have I got?

  • Tesco annual health check results consisting of blood pressure readings, Cholesterol (Total, HDL, Ratio) and a fasting blood glucose test.
  • Specsavers hearing test result and audiograms suggesting ENT referral
  • Medichecks annual Thyroid Function Tests for monitoring T3/T4 combination therapy
  • Reports from independent providers for Physiotherapy and Dermatology treatments following self referral
  • Optical Records
  • Dental Records
  • Patient created electronic longitudinal primary care health record created from paper records to restore failed electronic GP record transfer and lost paper notes

In more complex long term conditions there can be more data and I have described the complexity and process failures of my son’s situation in my previous blog.

The medical records for my son consist of

  • Data from treatment in Europe including surgical procedures, radiotherapy planning and treatment data which is absent from NHS records and different from U.K. practice
  • Five years of information from follow-up cancer consultations in Europe through reciprocal EU health arrangements not recorded in NHS records
  • Data from independent stroke rehabilitation providers
  • Power of Attorney, organ donation and other directives
  • A fully comprehensive electronic longitudinal record created by our family to combine 20 separate medical records across the UK and Europe into one unique chronological resource not available in the NHS

2. Why do we have this data?

For many people the landscape of healthcare is changing. Local restrictions by Clinical Commissioning Groups mean that some services are restricted or not available such as Thyroid profiles including T3, Vitamin D testing and others. Pressure on GP services have resulted in high street retailers taking the opportunity to expand into healthcare. Easy self referral to hearing tests, commercial blood testing, DNA evaluations and more come with fast results with independent medical practitioner reports.

In more complex medical conditions the internet has provided information on medical treatments in other countries. The story of Asha King and his family is well known. What is not so well known, is that many people over the last fifteen years have also taken advantage of improved treatment outcomes and cancer survival rates, in Europe and further afield. In 2005 our family moved to France for four months to access Proton Therapy, an advanced form of radiotherapy, not available in the UK at that time. During our four month stay we met a succession of British patients who had chosen to fund their own treatment for the improved chance of survival. All these patients will have their own medical information not held with NHS records.

3. Where is it stored?

Our data is currently stored in our Documents and Letters file which is provided in the Evergreen Life App. Each piece of data is entered into the file using the photo capture function within the App. Each new document is indexed by type, date and source/author. This indexing enables a search facility by choosing any one of the indexing categories. So for example with consistent indexing all skull base MDT letters can be searched for and subsequently displayed. There is the ability to link the data entry to a condition or medication. The privacy level can be set to normal, personal, GP record or an only me setting. There is no limit to the amount of data stored. This has enabled us to create our own comprehensive longitudinal health records. The simple share facility allows us to share our account with trusted members of our family and clinicians if we wish. The email facility can be used to forward a single data entry to share information with another party. The App is available on any device and allows quick retrieval of specific information in a medical crisis, in clinic consultations or wherever we need to share historical clinical information.

4. How do we incorporate this data in Local Health Care and Care Records?

The range of medical data held by people/citizens/patients/carers is increasing. So how are we storing, accessing and using it with current technology? For our family the facility offered by the Evergreen Life App has set a benchmark. The minimum functionality for entering patient held data in our LHCR should include what is currently available:

  • Personal document files
  • Free text entry
  • Indexing
  • Photo-capture
  • Linking to condition/medication
  • Search facility
  • Share facility

The facility to capture data from wearables is important. The use of technology to self manage health conditions like Diabetes is increasing and work is being done to create disease-specific platforms. However there must be the capability to add a variety of patient held data. The ambition of patients to add their own information must be considered in the design and choice of current solutions.

5. What other features would benefit the patient/public user?

Managing a complex health condition with care from multiple providers and specialties is a time consuming and frustrating job. Along with straightforward access through the NHS App some simple solutions that would benefit patients and carers are:

A Timeline. A simple linear representation showing the onset of health problems with dates of diagnosis, surgical events and drug therapy would provide a succinct accurate description of the patients health journey. Explaining a complex long term health history to new clinicians is both difficult and frustrating for people wasting valuable consultation time.

A Calendar. Patients and Carers who have interaction with multiple health providers are often overwhelmed by the large numbers of appointments. A calendar which imports all appointments onto the calendar page would avoid clashes from multiple providers and provide an easy reference point to see all future appointments. A reminder facility would reduce the chance of missed appointments.

Messaging Platforms. Simple messaging to health providers would change patient, Carer’s and service providers experience. Today I have tried to manage two appointments without success because I can’t reach the people concerned. The usual routine of a specialist nurse visit, with blood profiles, is usually followed a few weeks later by a Consultant visit. Staff holidays have reversed the appointments. With no recent monitoring results the Consultant visit is poor value to everyone, not to mention travel costs, work hours lost and time wasted. Pre clinic information forms are a nice idea but in practice with our clinic waiting times of between 2-4 hours and clinicians battling with poor IT infrastructure, they probably won’t come into common use.

Core Data File The current consultation work by the Professional Records Standards Body to create the the core information standard, highlights may of the aspects that patients may want to record. The ‘about me’ section and other categories give a holistic overview of the patient situation, cognition, disabilities, social situation, carer role, and directives . At nearly every consultation we have to remind the clinician that my son is severely hearing and memory impaired and an on screen flag would simply change the flow of the meeting.

Access to booking systems. Enabling access to booking screens would allow patients to track appointments. So many times in our experience, for example, the promised imaging request wasn’t actioned because of misinformation or confusion over duplicate requests. Pressure on clinic time, short staffing, multiple requesters and process failure are the realities of NHS care. Appointment tracking would reduce patient stress, phone calls, delays in tests, treatment and administration time.

Linking in existing Health Apps. Linking in our existing records is important for us. Entering fourteen years of health data was a difficult task. Using a fully indexed record in an immediately accessible format which is searchable is irreplaceable. From start to finish I can access my son’s neurosurgical operation notes including imaging in just four clicks on my iPhone. The agility of existing Apps like Evergreen Life will be hard to beat for immediate information so link it into the LHCR. Extensibility is key.

Designing for people and understanding their needs.

As a carer I have frequent interaction with health services and I have a message to commissioners that don’t have the experience of using personal health records. The primary aim of an LHCR is to create longitudinal health records to enable safe and efficient care to the individual wherever they may be, at any time through fast secure access by both the individual and health providers. The primary function is not to make clinicians lives easier so the focus on citizen access, trust and control of that data must remain at the forefront of design and commissioning. This is our data, personal, private, important to our survival and ultimately should be within our control. We need to have trust in the process, the infrastructure and the services using our data in partnership with us. We want the choice to opt out or opt in, to see who has accessed our information and to withdraw consent at any time. We may want to keep some information private and should have the facility to choose how much of our information to reveal. We do not want to wait for an invitation from care providers to view OUR data as suggested by more than one solution, we want direct access via secure existing platforms like the NHS App.


The adoption and success of LHCR to improve health outcomes depends on designing the patient/public areas to provide real benefit to individuals. Understanding why and how we want to use our contributory areas of the record to create a comprehensive lifelong health account should be important to designers and commissioners alike. Public engagement programmes must work towards understanding the public view to avoid commissioning solutions that may have limited functionality and capability to meet peoples needs.

It should be a partnership exercise in design to change people’s lives for the better.

Cancer Mum: So why do Patients and Carers want Health Records?

So finally, here it is, news from the front line in my first @Cancer Mum blog. For those who follow me on Twitter you will already know my Tweets about patient record access are passionate, angry, frustrated, impatient, relentless and some have said simplistic. There are many commentators on the subject and it is a topic that attracts comments from around the world. It’s hard to explain the real message in a few words on social media but there is a message to be told and it must be heard.

So why is medical record access so important to people like me, why do we fight so vociferously and challenge the system? 

Our story started in 2005 when our healthy fourteen-year-old teenager was suddenly diagnosed with a rare brain tumour. It was large, growing from the pituitary fossa backwards compressing his brain stem and descending down into his cervical canal. Surgery to debunk the tumour left us with a teenager with multiple disabilities due to a brain stem stroke and a poor prognosis tumour. Over the years an unbelievable number of care providers have touched us on the worst journey a family could imagine. The last fifteen years have been a roller coaster and secondary care has been a constant feature in our son’s life creating a significant amount of information. As my son’s main carer I have managed all his medical care from the first year when it became clear that the provision was split across many providers and only our family knew the overall picture in a complicated jigsaw of care.

My interest in collating an accessible online health account began as I approached a milestone birthday. Like most parents who care for a child whose life is compromised by ill health or disability I started to look to the future. As parents we will not always be here to manage his care with our vast knowledge of events. So, there were questions. 

  • Who would take over the complicated management? 
  • Who knew all the details accumulated over the years? 
  • How complete was his medical record? 
  • Does he have a medical record?
  • Where is his medical record? 
  • Could we create a fully shareable online health account that would ensure safe care in the future?

So, the journey of discovery began. My starting point was application for full access to my son’s GP record. My concern at this point was to ensure that all the paper information our family had in many files was available in the GP record. The application for full online record access met with outright rejection and it was there my fight started. A statement was issued by the practice stating that it was not mandatory to share free text or historical letters and this would not change until they were required to do so.

Almost a year later, during a visit to the practice by a RCGP Digital Champion on our behalf, it became clear that there was no electronic GP record. I had been fighting for information that didn’t exist. I had been unaware that my son’s electronic records had not followed him, unaware paper records were stored off site, unaware that no significant documents had been scanned into the new electronic record, unaware that a clerk had created an incorrect summary list, unaware that access to any historical letters and consultation text would continue to be refused. Transparency and partnership working were not on the agenda. After this visit a large amount of documentation from the paper record was scanned onto the new electronic record at the request of the visiting GP. 

Further investigation revealed that transfer of all GP records has been patchy for a number of years. There is a short transfer window for the GP2GP transfer process and if the patient record is not called within the timeframe the file is locked and cannot be retrieved at a later date. 

This is an important point as the failure to transfer GP electronic records when patients relocate has a significant effect on information flow and creates silos of information in the chain. 

Further investigation showed an unexpected reality, my son’s data set is summarised in the flow chart below

The following table illustrates the multiple conditions that needed continuing care across the years. The lack of information at each new point of care required repeated explanations of a long and complex history by the family. Inevitably with the vast number of health interactions over a fourteen year period our memory of the details of separate events became increasing blurred. 

Our son’s health record in numbers.

At the end of December 2017 following the failure of the RCGP Digital Champion to secure full access to the free text and historical letters in my son’s online GP record I decided to issue notice to the practice that I would take formal action using the Equalities Act 2010. I requested ‘reasonable adjustments’ to be made to mitigate for hearing impairment and severe memory deficit. The Practice agreed to facilitate full record access after a partner meeting. My son remains the only patient in a 40,000 group practice list to have this access. 

After a period of six weeks in May last our son became ill quite suddenly. There was clear indication that his neurological status had changed. He was admitted in severe pain to a major neurological centre through the Accident and Emergency Department. He was seen by the neurosurgical team who had not met him before and there was no medical record of the complex surgery and conditions in the flow charts above. The impaired neurological picture indicated a cervical spinal cord issue. Words cannot adequately explain our terror as parents at this point. 

We tried to answer as many questions as we could but the stress made it difficult. We were unable to name the French Hospitals or remember the details of the previous cervical spine laminectomies. Then we remembered the new online GP account and accessed it through an App on a phone. To our shock there were hundreds of document and consultation entries but they were not indexed and useless. I have talked about this here

Our son went on to have urgent brain and spinal surgery and he has since recovered well. It is a situation I would not wish on any family. We learnt from our experience and now we have a fully indexed longitudinal patient record created using the Evergreen Life App. I have transferred all relevant documents over the last fourteen years and the account is fully shareable by all member of our family.

Stop, Look and Listen

Despite continued promises of access to all our health information by successive politicians and the talk of new gateways to our health information linking primary, secondary and social care, to people like us it seems as far away as ever. We hear about the Empowering the Person initiative, projects to improve data flows, data standards and all those new Apps but citizens like us are still as helpless as ever standing next to that stretcher in A/E without the very basic information to save our loved one’s life in a crisis. 

The announcement today of the new London SCRa mobile which allows ambulance staff to access records for front line care is good news. So much good work is coming from NHS Digital but how effective will this be if the Summary Care Record information is extracted from inaccurate and incomplete patient records? My son’s allergies have been missed in the paper muddle. Is the risk of sudden intracranial bleed noted? Do we need to stop and look at the basics?

Is anyone listening? Despite years of campaigning for full GP record access by clinicians and patients alike the new five-year GMS contract only mandated full patient access to prospective records. The choice to release historical free data remains the choice of individual GP practices. What use is that to patients with complex histories? How can they manage their care? That door is closed for the next five years.

I have recently become involved with the procurement evaluation stage of our Local Health and Care Record. Patients are not considered stakeholders. There has been no citizen engagement prior to specification. The specification has been put together by the professional users with no thought to what we might need or want. The patient portal is parked in the future. Access to a full longitudinal NHS record is another five years away in reality. Another door closed for five years.

These developments have caused our family great concern and frustration. We just want to keep our son safe.

We are being let down.

The sound of doors slamming shut is deafening.