"A stay in hospital with a Myasthenia Gravis crisis"

I went to A&E at Forth Valley Royal Hospital in Larbert one Monday in November 2018 with a flare up of my Myasthenia Gravis (MG). I was having difficulty with both speech and swallowing. I was seen quite quickly but left later in the day in the expectation that I would be seen by someone from the neurology department the following day. This did not materialise, and on the Thursday I returned to A&E with worsening symptoms in that I had been unable to swallow food at breakfast. After assessment I was admitted to the Acute Assessment Unit. I was then transferred to Ward A12 at 21:00 on Saturday, initially in a single room and subsequently in a four-bed room. This was the same ward that I was in in 2015 when I had an earlier MG episode. I stayed here for a week and a half until I was discharged and returned home.

The care I received in the ward was excellent from all who saw me. This included nurses, ancillaries and catering staff, ward doctors, neurology staff, dieticians, and speech and language therapy.

Treatment included insertion of an NG tube for feeding and administering drugs, two sessions of IVIG, and an increase in prednisolone daily dose. Once I was able to take tablets orally, I was self-medicating. I was also eventually able to use the food pump to feed myself which provided a level of independence that I appreciated. The tube was removed before I was discharged.

Single rooms have their uses for some patients; multi rooms can be good depending on your fellow patients. My experience was mixed but in general I was happier in the four-bed room with some good company.

I particularly enjoyed the showers in the hospital but it is noticeable that the rooms are showing wear and tear in the three years since I was last a patient.

Because of my condition, I did not experience much of the real food available. The menus are variable and the food looked appetising. I experienced two types of diets – smooth and soft/moist. The food provided was generally well cooked and as appetising as pureed food could be.

As I was not constrained to be in bed, I particularly appreciated being allowed to wander around the hospital to get some exercise. It also allowed me to avoid the daily anti-coagulant jag. The weather was not wonderful during my stay but there was one sunny winter’s day when a walk around the loch and the Larbert Woods was possible. It is a wonderful local resource and if you can use it, it’s well worth it.

As my condition is relatively rare, I was asked by a doctor if some medical students could assess me and try and identify my condition. I readily agreed. It is something I have done before and enjoy, and there is a level of self-interest. The more people in the medical professions who know about MG, the better my care will be in the future. So if you are asked to do something similar, please do.

Things that didn’t go to plan:

I saw a triage nurse on each of my arrivals at A&E. Neither of them were familiar with MG.

A&E recognised that I would need a tube inserted but apparently they did not have the relevant knowledge. I was very painfully fitted with a large tube which I now believe is intended for draining rather that supplying the stomach. It took three attempts to insert with the first being abandoned when it caused a nose bleed. I did not appreciate being called ‘Darling’ by the person who made this attempt. I was also annoyed (to say the least) when a dietician subsequently told me that it was the wrong tube to provide the liquid feed I needed. It was therefore removed and the correct one inserted. The second tube went in so much more easily with no discomfort that it made the insertion of the first tube the more concerning.

When I was in the ward in 2015, my recollection is that the WiFi was freely available and was a godsend. With a tablet in hospital, it relieved the boredom and helped to make the stay bearable. However, this stay required frequent logins to use the WiFi. While appreciating any WiFi, it would be good to have an uninterrupted service even if it had to be paid for.

One of the patients in the four-bed room was not someone I would have wanted to share a room with by choice.