Better information sharing will help people with rare conditions

Varan Navaratnam has a range of complex, long-term conditions, some of which have yet to be diagnosed. He explains why good digital information sharing and care plans could make his care better and safer in the future.

How have your health conditions impacted your life and what kind of care have your received?
I was born in Sri Lanka with a neurological disorder called spino-cerebellar disease and hearing problems, though these were not diagnosed at the time. I moved to the UK when I was four, and struggled with school where I was treated as a problem child. It wasn’t until I was 12 that they realised the extent of my hearing problems and I was supported by the NHS and able to go on to complete my qualifications.

I suffered with unexplained coordination problems for a long time after moving to the UK, and had repeated falls. I was admitted to A&E several times during this period, and always had to repeat my story. I was eventually transferred to hospital where I spent seven weeks being monitored and having tests, but nobody has ever been able to diagnose my disability.

Since childhood I have developed a range of other conditions, including diabetes, back pain, tunnel vision, sight problems, sleeping difficulties, depression, memory loss, coordination problems and involuntary movements. Some of this may be linked to the fact that my brain wasn’t fully formed at birth and doctors did not have the right information about my condition.

What services do you currently use?
I use a wide range of services for my conditions and have ongoing tests to investigate the symptoms they can’t find a cause for. In addition to regular GP visits, I use The National Hospital for Neurology and Neurosurgery and the neuro-ophthalmic for my eyes. I go to an eye clinic in Queens Romford, who are currently trying to investigate the reason behind my unexplained visual loss. I also use a physiotherapist for my balance as the whole of my left side is very weak. I use deafblind enablement for my support to hospital appointments and for entertainment.

Why is good information sharing so important to you?
One of the greatest challenges for me is that doctors do not know what all my conditions are, so I am regularly being referred or different services for further investigations, tests and monitoring. Good information sharing would mean that the different services involved in my care would have access to the same information and notes, and it means that I would not be having to repeat myself time and time again. Due to my memory problems I worry that I will forget an important detail, which could compromise my care. I would feel much safer knowing that the people responsible for my care had access to the right information. If everyone involved in care can find information in the notes, they can also prevent potentially dangerous situations- such as getting the wrong medication or the wrong tests.

If you’re a patient who would like to get involved with our work or share your story, please contact Judith.brodie@theprsb.org

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