Visceral Myopathy, a Patient Story from St Marks Hospital

Visceral Myopathy, a Patient Story from St Marks Hospital


St Mark’s Hospital patient Jason Murtagh has a condition called Visceral Myopathy, a highly rare chronic disease which means that his gut fails to properly absorb nutrients – indeed the condition is so rare that few gastroenterologists will encounter a case in their careers. 

Diagnosed in 1988, Jason’s disease involves him being reliant on a line which administers nutrients directly into his heart – a process that Jason has been trained to administer himself via an aseptic technique. 

Jason is cared for by the UK’s two national Intestinal Failure Units (IFUs) – St Mark’s Hospital, Harrow and Hope Hospital, Salford – as well as regionally by a small but knowledgeable clinical nutrition team at Russells Hall Hospital, West Midlands.

Jason’s treatment involves the coordination of several expert clinical and medical care teams in different geographical locations. A process that since April 2012 has been made easier since the adoption by St Mark’s of Patients Know Best (PKB), the world’s first online patient-controlled medical records system.

Operating like a secure medical ‘facebook’ and available over any internet-ready device, PKB enables the patient to decide which medical professionals can have access to their medical history. It allows patients to communicate directly with clinicians via a highly secure messaging system and through a notice board facility where issues can be discussed collaboratively between patient and the medical teams – teams that could exist anywhere in the world. 

“Before, long emails used to fly around with lots of people copied in. Sometimes people would forget to copy in others, other times emails would just get lost,” explains Jason. “With PKB, everyone is kept in the loop and we can bounce ideas off each other – and I can join in the discussion too. Potentially, using PKB is going to minimise the time I have to spend going to consultations and meetings. I’m already spending less time having to explain background information and what’s been going on since my last consultation because we’re all up to speed.”

Jason also values being able to post up thoughts and queries to PKB when they occur to him – when he’s on the move – rather than save up questions for a meeting or email.

“PKB suits me because I can access it on my normal smart phone or computer – I don’t need any special equipment. If I’m out somewhere or if I think of something, I can just upload something and I’ll probably have a response when I get back home. PKB offers a non intrusive way of asking questions or putting forward a comment or suggestion and for my doctors it means that they don’t have to spend time answering emails or phone calls. You can raise things that you might think are not serious enough to raise in a consultation and I feel more confident putting forward my theories on why I’m feeling a certain way on a certain day. I know doctors find that kind of information useful but it’s not normally the kind thing I would have brought up in a meeting when time’s short.”

Patients Know Best also enables patients to record and track their condition and post results up immediately – giving clinicians a view as to how a patient is living with their condition over time. For example, Jason posts up daily readings of his blood levels so all his doctors can access the results and discuss issues between themselves.

“Before I may have sent an email with my results to one doctor but for one reason or another, that message might not have reached anyone else. Now I can post my results up and know that everyone involved in my care can see my results and can see how my condition is progressing and reacting to different treatments.”

Whilst Jason already scans all his medical out-patient notes and letters and uploads them to PKB, St Marks are now planning to do the same with all his future notes. This means that in the going forward, every doctor or medical professional involved in his care can see the information – process saving the NHS time, money, paper and postage.

One of the side effects of Jason’s condition is that he often experiences problems in other areas of the body such as the pancreas, liver and kidneys. He also must consult with highly specialist heart and chest surgeons to ensure his nutrient line is operating effectively. Whilst Jason normally works through St Mark’s – as they have an advanced knowledge of his underlying condition – it still involves him having to consult a range of clinicians who are most likely treating a Visceral Myopothy patient for the first time. However, PKB now gives him the confidence and reassurance he needs that doctors can access his full medical history – wherever he might be.

“Very few doctors properly understand my condition so going to an unfamiliar medical team can be terrifying. I can have a severe and potentially life threatening reaction to everyday drugs. With PKB, it’s very reassuring that I can reach my entire medical team anywhere in the world – this makes me feel far more independent. Through PKB, I’m effectively carrying my entire medical history with me wherever I go in the world – and that’s very reassuring.”