"My husband's stroke"

Over a weekend back in June my husband complained of a light but constant headache and a slight numbness to the right side of his tongue. On the Monday morning he said his tongue still felt funny (no drooping of mouth and could move his tongue evenly to left & right side of cheek) but also said his eyesight did not feel quite right. We immediately called 999. 

On arrival of the ambulance they found his blood pressure very high. My husband was relatively fit and not overweight and was in good health and did not suffer from any underlying problems other than light asthma. He had not seen a doctor or had his blood pressure taken for about 8 years. He was rushed to hospital and over 4 days had MRI scans, CT scans, ultrasound and lumbar puncture taken but nothing abnormal was found. The first consultant he saw thought he had suffered from a TIA but the two subsequent consultants decided that it hadn’t been a TIA and that his symptoms were a result of high blood pressure. He was released after 3 days. He was released with a blood pressure monitor to wear for 48 hours then when that was returned, a heart monitor for 24 hours. I believe neither of these recordings showed anything untoward. He attended our own medical surgery where he spoke to another doctor. He again complained of the odd feeling in his tongue but was told this could just be down to nerve damage. How I wish we had insisted he be readmitted! 

A week later my husband suffered from a major stroke. He was rushed to hospital and medicated. Unfortunately swelling occurred at the site of stroke, causing pressure build up which we were told would be fatal without intervention. My husband was rushed to a neurological unit at QUEH where he underwent a craniotomy to the left side of his head. The large piece of skull removed from the left hand side of his head was placed in his abdomen for safe keeping. He survived. More than two months later he was allowed home where therapy continued. A further three months later he had further surgery to replace the piece of skull onto his head. He has now been allowed home.

Due to the stroke my husband now suffers from aphasia. He struggles with nouns and names particularly, he does not know the alphabet and cannot read or write. He does not always understand questions and often struggles to find words when asked direct questions. He has slight weakness in his right side and a lack of dexterity in his right hand. He has forgotten how to work tools and electrical items.  

There is no doubt that my husband received and continues to receive, on the most part, outstanding care during a time complicated by the Covid 19 situation but there are a few occasions where I feel we have been let down. 

1. The very first consultant being overruled as to first diagnosis of a TIA.

2. The doctor at our local medical practice dismissing tongue paralysis as nerve damage.

3. After my husbands craniotomy no one phoned to let us know he was out of surgery or that it had gone ok. I phoned the ward at 2am to ask if he was out of theatre to discover that surgery finished over 3 hours earlier. A day and a half after surgery, I still hadn’t been contacted by a medical practitioner & it took me to ask specifically for a doctor, registrar or consultant to phone me before that contact and update was made. 

4. The same occurred whilst my husband recuperated in hospital. I had to request a doctor/consultant contact me with an update as to his condition. Nursing staff were fabulous but could only provide me with limited information and because of my husbands aphasia he could not remember and/or physically tell me anything the doctors had discussed with him. 

5. When my husband had his skull replaced, first a nurse and then a doctor phoned me on the date of his admission as my husband was unable to answer their questions and they were unsure if he understood all that he was being told. 

My husband contacted me on his return to the ward after surgery. It is very disappointing that to date no medical practitioner has contacted me with an update as to how the surgery went. My husband was unable to ask them questions due to his slowness of speech and inability to find the right words of the subject matter and he is unable to tell me what information the consultant and registrars told him. 

If we were not dealing with Covid restrictions I would have frequently been visiting my husband and present for ward rounds where I could have listened and asked questions on his behalf. 

6. A decision was made that my husband could go home at approximately 5pm on a Sunday. We stay approximately 1 hour from the hospital and it was after 6pm by arrived to pick him up. The main doors to neurology were locked and unattended. On phoning the ward they directed me to a back door and a nurse brought my husband down. The lighting outside was very poor and taking someone who has had major surgery down and up pavements and across roads in poorly lit conditions not ideal. The nurse could hardly read his discharge notes and medication. 

Both operations have gone well and my husband is working very hard to improve in all the areas in which he has been affected. He has had outstanding care from medical staff, nurses and therapists during very difficult circumstances this year. Where we feel greatly let down is on points one and two and then mostly the lack of communication, updates, information & advice from medical staff for points 3 -5. 

Point 6 just felt rushed and inappropriate & could/should have been better done.