When in hospital Annie was under the care of her surgeon. She was on a neuro- specialist ward led by a matron/sister etc. She was being visited by physios every day to work on the process of transition and how to move in the bed. When I asked the physio how I could shift Annie up the bed she said “ask her to move up the bed”. I hadn’t thought of that. Instead I was grabbing her under the arm pit and attempting to shove her northwards. It makes you realise how important that initial physio work is. They are not only keeping you moving, they are telling you how to move safely and how to ward off over eager carers/nurses from doing too much. It is about keeping as active as possible without putting yourself at risk. Annie being Annie, she loves a clear instruction a programme. Years of Pilates is coming into its own right now as she understands how to move and maintain her core stability. The stroke means balancing can be tricky – the physios help you to find your centre, sit straight ready to transition.
As we started to move toward discharging from the hospital the Occupational Therapists, who share an office with the physios, would normally come to assess the home to see what you might need. With the current situation this had to be a virtual visit. Armed with a tape measure I was measuring chairs and steps, door widths, radiators and spaces. Then their role is to put in the order to the Equipment services folk. Where we live this is a matter for the local city council. What I learnt from this process is that although we were using video calls to do training and home assessment – these systems are mainly based on people phoning one another and leaving answerphone messages. Given our house sits in a mobile signal blackspot perhaps the most stressful thing about this discharge process was perpetually missing calls and trawling through answerphone messages from “Withheld” NHS and Council numbers” with questions like – will you be in? = or can you call us back on 0161 228 5blur8blurrryshat,*crackle* thanks bye! To answer a few questions.
If we want updates from the hospital much of this is done through phoning the ward number and hoping they will pick up. If you can speak to the nurses looking after Annie that day you strike gold and you can usually get 5 minutes to ask some questions. Inevitably one will think of all the important questions once you’ve hung up. But you have to be proactive because they will not phone you.
During this C19 lockdown one of the most reliably sources of information and assurance has been through Annie’s key worker/ specialist nurse -who is a nurse practitioner in the brain surgery team. We find the most successful way to communicate is email. This nurse was working between hospital and home but was online most of the time and able to access notes/assessment/results and also had the surgeon on speed-dial when required.
You also start to realise how hierarchical the NHS is. There are processes and timescale. There are ways of escalating and speeding up processes where necessary. You realise that people are incredibly compassionate. So many of Annie’s immediate care team had small children themselves. Everybody was pulling out every stop to get her back in time for Joe’s birthday. Where necessary the lead consultant can throw his weight behind the plan and it clearly oils the wheels. Yet there is also a firewall that surrounds him. When he wanted to meet with me to discuss the outcome of the operation the communicated with me directly through mobile. In a system based on “Withheld numbers” but it seems inappropriate to contact him when at our lowest ebb. We fall in line and go through the suggested channels.
Everything I have mentioned so far is how we are supported remotely by the hospital. In the next blog I will focus on the support we have at home.
No comments:
Post a Comment