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Transition and Beyond – A Patient’s Experience of Care



27 April 2018

Transition and Beyond  – A Patient’s Experience – Experience of Care Week 2018

Royal Hospital for Neuro-disability entrance

I have Motor Neurone Disease and now the only part of my body I can move is my eyes.

I was admitted to the RHN from an intensive care unit where I was operated on to be permanently ventilated. In ICU, I had one-to-one, full-time nursing care, with a qualified nurse in the room with me at all times. This was very reassuring as I was having to get used to a machine taking over my breathing and had multiple panic attacks daily. It was a frightening, acute environment and I really relied on their presence. I was also extremely upset knowing that following my ventilation, I would be too fragile to return home to my family. I was also struggling with the gaps in my memory following my admission to hospital with an acute infection, followed by my surgery. It was a difficult time.

I was assessed by a nurse from the RHN. About six weeks later I was taken there by ambulance and I really didn’t know what to expect. Initially, I had had a difficult time in ICU because nobody knew how to handle me and keep me comfortable. However, with the support of carers, my family and friends, they learned quickly. I was dreading arriving at the RHN and having unknown staff looking after me.

My first weeks were a nightmare. I lost that one-to-one 24/7 care that I had become used to. In addition, I had many new faces to get used to, and nobody knew how to handle me or keep me comfortable. Gradually, the staff got to know me and my needs, and I got to know them and the issues they faced in dealing with new patients.

The things that mattered to me most during this time were

  • Staff understanding how frightened I was being alone, getting used to a machine breathing for me and the processes around that
  •  Making time to pop in frequently so that I didn’t feel so isolated and afraid
  •  Staff responding quickly to my call alarm
  • All procedures were explained to me before they took place, and I was asked for my consent before staff went ahead
  • Attention to detail – as I can no longer move, I am reliant on other people to make small changes to my positioning to prevent pain and pressure sores
  • Asking if I need anything else before leaving me
  • Staff quickly and confidently handling my questions or issues
  • Staff understanding my underlying condition that had led to my ventilation, and how this affected the way I should be handled.

What matters to me most now

  • The care that I receive is consistent and conscientious at all times – this requires adequate time, resources, training and leadership. Attention to detail is critical.
  • Regular access to consultants to review my health
  • That the passion, caring and commitment of the staff are not abused due to lack of resources. This can only undermine their ability to do the jobs to the standard that they and I wish to continue. Management need to be extremely vigilant about this.