"Surgery after care experienced as an individual with a disability"

Hoping that things can be learned from my experience following surgery and my time in High Dependency and Intensive Care in Aberdeen Royal Infirmary.

I always wished I had reported it at the time but I was too ill, it took some time to recover following surgery and had further health complications. I am glad I have the opportunity to voice my experience here. I would like to share so that no one else experiences this and staff can learn from it.

Approximately 2 years ago I was on a break on the mainland from my home in the Western Isles, I was rushed to A&E with severe stomach pain. The doctor, surgeon and nurse attending to me in A&E were brilliant and went above and beyond staying late to look after me, and trying to find a diagnosis. Throughout this time they were very attentive and made sure I was kept fully up to date with what was happening with my tests. The Junior Doctor and Surgeon was determined to find out what was wrong with me. I was taken into theatre with a perforated gastric ulcer. I found out later that as I was on Naproxen medication I should have been prescribed Omeprazole. This was never discussed with me I am now unable to take anti inflammatory medication and will now be on Omeprazole for life.

I was then moved to High Dependancy Unit, during this time I was having to rely on written communication due to the effects of the operation and also the fact that I have some other health conditions which were affected at this time. I was using a notepad and my phone to type things to communicate with staff and family. This was a very difficult period, I had to use my own vpap mask, something I use on a daily basis, one nurse in particular who came to assist the nurse who was caring for me was rough and aggressive in how they handled me, the nurse forcibly restrained me from trying to fit my own mask and would not listen. I had to communicate in writing with the nurse assigned to me who then intervened on my behalf. They also kept moving me up the bed even though I advised them numerous times that my body is different and this was sore and uncomfortable. People with a long term health condition know their own health both they and their carers should be listened to. We have heard about Person Centred Care for a long time and how this is tailored to the individual but I did not see this happen to me.

I was then moved to Intensive Care. There was a complication and I was not being told what happening, I was not advised until the next day that they did not know how much oxygen should go through my VPAP. We had asked them to consult with my respiratory department in Raigmore. However they did not do this which led me to having to be moved back to High Dependency. I felt they just didn’t listen to us. Communication was an issue throughout this time, as the staff removed all means of communication from me by taking away my notepad and telephone, I believe this is a direct result of me asking for my family to be notified of the situation. I asked a nurse to phone my mum and they refused, the nurse picked up my phone and moved it out of my reach. It felt obvious to me that there was a level of panic over what was happening to me. No one was speaking to me or telling my anything. Doctors took arterial bloods without communication. Staff then told me I was being moved back to High Dependency and I removed my mask and with all the effort I could muster said “call mum”, which they did.

I wanted my mum to be there as she would have been able to find out what was happening and she understands my needs better than anyone. 

My mum also had issues with staff who tried to stop her from getting into the ward to assist me. When my mum saw how they were trying to manoeuvre me, she was able to help interpret my hand gestures and help them understand the support I required. However, there was one nurse who openly mocked me to other staff, this was unacceptable. I was unable to communicate what was happening to me at the time otherwise my family would have raised this and dealt with it when it happened. My family did make it clear to staff that I had to have my communication beside me at all times otherwise I would be isolated and this made me feel very vulnerable.

Appointments with Physio were not always positive as once again they seemed to follow a formula and although some would adapt their practice to meet my needs others refused, some physios would use thinner tubes whilst others refused point blank which made the procedure uncomfortable.

Although there were negative points as said above there were also fabulous nurses and auxiliary staff in the Surgical Ward who helped me towards my recovery.

One size does not fit all and staff need to be willing to listen to both patients and carers.

When it came time to come home, on the day of discharge they removed my staples my wound opened but I was advised I could still be discharged and that a pump would be delivered the next day by the Community Nurses. I was transferred by air ambulance and had been told that an ambulance would meet me in Stornoway airport to safely transfer me to home approximately 2 hours away on single track twisting roads. When I arrived at the airport the ambulance service had another patient and although I had been told I had to travel lying down due to my vertical wound i was asked if I would be willing to travel sitting up. Otherwise I would have to wait in the air ambulance until they returned to get me which would mean a delay of at least four to four and a half hours before I would get home. This journey was painful and one I would not want to repeat there was an obvious lack of communication as there should not have been another person in the ambulance. Under the circumstance the ambulance should have been waiting at the airport for me and I should have been able to lie down so I could travel back safely. We had to stop on the journey to allow me to take pain medication. This was quite shocking. The air ambulance crew were brilliant and tried to make the chair as comfortable as possible before the journey started.

My recovery was long and slow which was not assisted by the delay in getting the promised pump which did not arrive for over a week. I was asked by staff what is the rush. Also the dressings provided were inadequate they had to order special dressings for me, the dressings are a standard size and not large enough so would have to stick multiple dressings together. This would have to frequently be redressed by my Mum as the sticky side would have been attached to my wound. I was told that the person responsible for distributing the pumps was on holiday. I feel that there needs to be processes in place to cover holidays so that people don’t have this kind of problem as you worry about infection, anything that could help speed recovery should be a priority.

The Community Nursing team had left me with my file which they said I could look at. When I checked it I realised they had listed completely the wrong medications including medicines that I had not been on for months . After removing the pump my wound had only just started to scab over but there was no follow up from the Community Nurses which I personally feel should have happened. I experienced a little insensitivity to my situation. However there was an exceptional young nurse who attended several times. She was fantastic, patient, kind and respectful. I was happy to see it was her who came when a visit was due.

I was never invited back to Aberdeen for any follow up and I feel that this should be standard practice after such a serious operation to ensure that everything was ok .

People with disabilities can feel the most vulnerable in hospital when we are away from vital facilities at home and our personal care especially when we have difficulty with communication and movement. It makes it so difficult to have our needs heard and met. There were many times processes were made more painful than they needed to be. With improved awareness and training (with the understanding that people have different body shapes and structures) the experience could be made a little easier, less stressful and more comfortable. 

It has taken time for me to write this experience down and my reason for doing so is to acknowledge when things went really well but more so that people learn from what happened to me when it didn’t and therefore no one else experiences the same issues as me in the future.