"A very difficult experience"

Hospital induced malnutrition and dehydration should be acknowledged by the hospital as something quite serious, treated accordingly and feature prominently in the patient's medical notes.

It was a traumatic experience, going into hospital full of hope and coming home 3 weeks later unable to walk, eat normaly, with swallowing difficulties. The skinny physical wreck, a shadow of the former me. I didn't lose my optimism, love of life and determination. In fact I couldn't stop smiling when I came home I was so relieved to feel safe, to have food and drink whenever I wanted, be with people that loved me and wanted to care for me.

Initially I had 16 pills to swallow every day and turned it into a game; spoon of yoghurt with this one, ice cream with another, tea, juice and a grape as a reward along the way. If I gagged, I stopped. Sometimes the pill popped up. Sipping warm tea or water soothed the throat and the pill taking game could continue.

When my nephews and others asked how I was feeling, my answer was; a physical wreck but personality intact.

At appointments initially I couldn't talk about it or ask questions. I assumed (wrongly) that as the hospital knew the drastic changes that had occurred during the 3 weeks in hospital it would feature prominently in my medical notes.

Last year I had therapy for most of the year. The NHS Talking therapy diagnosed PTSD and though a difficult process, therapy teaches you that you are not to blame for what others did. You did not invite them to be mean and cruel, they made that choice. That traumatic event no longer haunts me nor invades my thoughts uninvited but I feel angry that it's been left to me to take responsibility, to make the choice of whether to raise it during a consultation.

Recently I had 2 appointments, one with Cardiology, the other Neurology. I didn’t mention it to the Neurology consultant, it was our first meeting. They clearly was very expert and efficient. They looked to the computer to tell them about my history and medical background and though I said I could answer any question, they preferred to look at medical records available to them. When I read the discharge they got the measure of what I needed and prescribed accordingly. The next appointment is in a year.

The cardiology appointment was a follow up 2 months after undergoing an ablation. The Arrhythmia consultant was a very nice, caring, polite man. I don't doubt that he was very able, experienced, an expert in his field. He'd certainly prepared thoroughly for the appointment and had the data on his screen.

I was struggling to get him to believe me and to shift his view from that all was well to my reality. I've been housebound since January, the longest period since surgery and daily life is quite a struggle. 

I'm just like the weather's response to climate change, unexpected with extreme variations.  

As I was getting nowhere I told him about the malnourishment and dehydration post open heart surgery. The look of shock and disbelief on his face was genuine, he'd obviously not seen anything in my medical records to acknowledge it happened and  the devastating impact it had on my health. We didn't discuss it but I came away with a change in meds (since the ablation 2 months prior I would no longer need the bisoprolol and candesartan) and best of all the Patient initiated pathway rather than a follow up appointment. 

I read the discharge letter. His conclusion was that from a cardiac perspective the heart was stable, Bp normal. No further treatment required unless there were new symptoms. The statement that it was fear that prevented me from going outdoors bothered me and I decided to challenge. It might have turned out to be a waste of time but I had to try. It took a fortnight and the best part of the weekend to write rather a punchy email, very polite but quite long, describing some of the details of that hospital experience, the procedures, challenges since and included my recent daily bp readings to illustrate the variation; up, down, high, low, same and stated that blood test results could be viewed on PKB. They clearly show a rapid decline once on the ward. On the Monday there was a clarification to my GP, explaining what he'd meant by 'fear of going outdoors'. The tone was very kind.

I've activated the Patient Pathway and have an appointment soon. I hope it's with the same consultant. I feel certain he has looked up the blood test results.

My GP is fully on board. We've been working on getting the Care Plan to include the most relevant and significant information, in the right order with reference to medical evidence and event, so there's a distilled, condensed summary of what happened and the changes that have occurred. I've had the opportunity to suggest amendments and describe events for my doctor to represent the most relevant in medical terms. It's a long document. 

A harrowing experience in A&E recently where for the first time, callous indifference was shown by the paramedics and staff in A&E. Impossible demands were made, I was gasping for breath, very dizzy, had great difficulty sitting in a chair. The doctors, though very kind were unable to diagnose and come to a conclusion. The GP surgery pulled out all the stops and provided me with a printed copy of the amended and updated care plan so I have something to produce at hospital appointments and in emergencies. It starts with the comorbidities; chronic heart disease, Parkinsons and osteoarthritis.