"Poor care after a stroke"

Staff attitude

I had my stroke in January 2019, 2 days after back surgery in Glasgow. It affected my non-dominant hemisphere, i.e., the part of my brain controlling the left side of my body (a clot blocking the right middle cerebral artery, supplying that side of the brain). That meant I could still speak which was a relief, but I could not move my left hand or arm. I told my husband on the phone that I was going to have a stroke and I ‘saw’ the stroke happening and felt it, like a train crash in my head, it was like an explosion and was quite painful vaguely remember having a scan and seeing my husband, who had rushed back to the hospital.

It was a shock and the initial few days were hellish although I must say that I had my life saved by the clot busting drugs (thrombolysis) used by the stroke team. I was attached to two drips and my arms were badly bruised from all the attempts to take blood or put up drips and I could not move my left arm and hand, which was very swollen. Very gradually things recovered, I was dribbling from the left side of my mouth at first, and my tongue and mouth are still numb on the left side, so that my speech is affected, and I still have some saliva dribbling at times. I cannot eat properly, and my taste is affected.

I believe staff in neurosurgery did not ensure I was given the right dose of steroids (as prescribed in a letter from my endocrinologist l) to cover my pituitary failure. I was unwell on the day before with low blood pressure and was told I had a urine infection and to drink more (as I said in a text to my husband). The next day I told him not to come in as I did not feel good and was not getting my steroids. I think I went into an adrenal crisis and I knew I would have a stroke before it happened, I phoned my husband to tell him this, and the next call he received was from the hospital telling him I was in intensive care after a major stroke. The doctors tell me that the clot came from my heart valve. However, my cardiologist tells me this would be very surprising given that the heart valve is 10 years old, and I was on heparin.

Initially I was very angry at the lack of care by the medical staff, I still am and have received no explanation from them. It is not just the after effects of stroke, it is what I had to go through once I had it, I still don’t know if I will be able to continue my studies at University, I do hope so. I was a successful doctor for nearly 30 years until retiring recently, subsequently studying a different field and have removed myself from the medical register and surrendered my driving licence, which takes away some of my independence. I get very emotional after my stroke; this emotional liability is embarrassing and distressing.

The acute stroke unit in Glasgow was busy and at night some of the staff were agency workers, quite frankly, some nurses showed no care for their patients and acted in what I felt was a cruel way to me. They laughed at my night clothes when changing me and asked my age. The speech and language therapist controls when you are judged able to swallow and if you can drink, but they do not work at the weekends and seemed to pay no attention to my needs as a patient who was hungry, thirsty, and frustrated. The nurses were supposed to give me some yoghurt or spoonfuls of smoothie every two hours, but even though they promised my husband they would, they never bothered. I never got anything to drink, not even sips of fluid; speech and language kept me on thickened fluids which meant powder was added to water and if you drank it, it sucked every drop of moisture from your mouth, tongue and throat, so you could not speak, your tongue stuck to the roof of your mouth and felt like sandpaper, and it was agony. The only relief was to ask to brush your teeth; and I was reprimanded by the nursing staff for brushing my teeth too often.

I received no mouth care at all, so I got terrible thrush, self-diagnosed as not one nurse ever checked my mouth or tongue, and I had to beg for medication to treat it, waiting hours for a doctor to come and look at my tongue before prescribing it, and waiting again until it arrived from pharmacy. My skin is terrible now because of the lack of fluids. Fortunately, I got a smoothie with crushed ice brought in by my brother from the concourse shops, and my husband brought in a frozen yoghurt. He later brought in food from home for me as the food for vegetarians on the special diet next ordered by speech and language was foul - macaroni cheese, an unholy mess of potato and liquidised macaroni with mushy peas and mashed potato, or soup, red hot and ‘fresh ‘from the microwave. My weight fell by more than 10 kg during my 2-week stay in Glasgow and I was badly dehydrated but not one of the nursing or medical staff either noticed or were seen to care.

In the acute stroke unit, ward 1c, the nurses would not give me the call buzzer and so I was reduced to rattling the bed sides and screaming for help, when they would then walk in and tell me off for making a noise at night and shouted at me for disturbing other patients.  One night -staff nurse laughed at my nightwear (pyjamas and a sleeveless top) while changing me and asked how old I was. The first week or two I was terrified that I would have another stroke. Seriously, I did not think I would survive.

My spirits were lifted by my visitors. As well as my husband and brother, some old faces from my younger days kindly came to see me, as did my supervisor and a friend from university, and a former medical colleague and his partner. At that time, I listened constantly to BBC news 24 or the southern hospitals radio station. Once, I was listening to the football and the nurse came in and knocked away the speaker saying you do not want to listen to that. Another nurse I said good morning to snapped back good morning AGAIN. Some of the other nurses were very kind and took the time to speak to me. I had pleasant conversation with one of them.

Eventually, I was moved to the stroke rehabilitation unit on Ward 57, a six-bed female bay, which was a relief after my experience on 1c, the staff were cheerful, kind, and caring, which helped my recovery a lot. One evening in the rehabilitation ward the porters came in with the mortuary trolley and stopped in front of my bed. They realised their mistake, but I was frightened to go to sleep in case they came back for me. I was even allowed sips of tea without the awful powder, but I was not allowed toast unless the crusts were cut off and it was soggy with butter, but that was good enough for me. As the so-called special diet vegetarian food was appalling.

I asked to be transferred to Perth so that my husband did not have to drive to Glasgow every day and when a bed came up, an ambulance could not be arranged until the Sunday however a private ambulance was arranged to take me from Glasgow to Perth on the Wednesday evening so that I would not lose the bed. The ambulance staff were so kind to me and when I got to the stroke unit Perth I was shown into a side room by a very cheerful nurse. What a difference! I was treated like an individual and not just a nuisance with a stroke. They bothered to weigh me and swabbed me for MRSA (I was positive) Eventually, I was allowed a normal diet at my own risk if I choked. My husband bought me in food from home and diced salad, baked potato and cheesy pasta - they even let him bring in our dog to see me, which was great.

I didn’t mention my eyes, for the first two or three weeks until I was in Perth, when I looked in the mirror my eyes were just blank and staring. It was like a post-traumatic stress disorder but eventually that recovered as well. I was unable to sleep because of the noise from the buzzers and the lights, so that I had to that use earplugs and a face mask the last night I was there. I was desperate to get home and the day after I asked, I was allowed home at 3 pm, with no advice or instruction for my husband. My only follow up was with a nurse for occupational therapy, who seemed to take pleasure in telling me that after thrombolysis you recovered physically, but often had persisting cognitive defects, and a stroke nurse to tell me what a stroke was!

Going home was wonderful.

I am told it is now just a case of waiting to get better, but I am very impatient and think I should be moving faster than I am. I had two further attacks. Both times my GP sent me back to PRI and they did a brain CT which showed no change.  The two doctors I saw there were very unhelpful and dismissive, offering no explanation or advice, therefore I contacted the consultant at QUEH who had carried out my thrombolysis, who suggested a small increase in my INR range from 2.5-3.5 to 3.,0-4.0 – despite the Perth team disagreeing I have done this and, so far, have had no further recurrence apart from a brief TIA lasting less than 2 minutes recently.

As if having a stroke was not enough, we have also had to move out of house. The move was very fraught, and stressful.  I still use a wheelchair for longer trips such as around the shops as I still get pain on walking and I am frightened of falling. The temporary accommodation was very cramped and, due to my balance issues  I fell three times, hitting my hips and head, the third time I also broke my left wrist as my hand was caught behind me.  At that time, I was unable to walk or stand for any length of time due to worsening pain just above my right knee and aching in my right hip. This keeps me awake at night particularly if I lie on my left side. My GP sent me for X-rays - reported as no bony injury, pre-op my pain only started after walking or standing for some time and went away with rest. This pain now starts as soon as I put weight on my right leg and can continue at rest or when lying in bed. I was only seen by nurses after my wrist fracture and they removed the cast after 4 weeks, without an x-ray. When I queried this, I was told it wasn’t needed, but x-rays in Glasgow arranged by my rheumatologist showed the fracture was not healed and was displaced, a consultant phoned me from Glasgow and I went over to see them, when they recommended a cast for a further 3 weeks.

Nurse-led clinics (for stroke and the fracture) may be cheap and reduce waiting times, but I have little faith in their knowledge or expertise. They never listen to me and seem to resent being questioned by an ex-medic.

I realise I am fortunate to have made some recovery but I’m nowhere near mentally or physically what I was before the stroke.