4 Back home

In August 2018 the physiotherapist and occupational therapist indicated I was getting ready to go home A home visit was organised and they were satisfied I was ready and the house was ready with the adaptations made. So on 30th August 2018 I was discharged home which meant being able to transfer from my wheelchair to the front seat of my car (not that I was allowed to drive – Duncan did that bit!).  It was fantastic to be home and savour all the delights including the building work that had been carried out over the five months I had been away in hospital – a long time. To ensure some support was available, six weeks of personal care was provided by the Norfolk First Support team. This included carers attending up to four times a day used at our discretion and up to six weeks of therapy was also offered by the Early Discharge Team with visits of therapy assistants nearly every day overseen by a physiotherapist and a nurse who offered support around progress and concerns we may have. After this care and support which lasted six weeks I was discharged and then we had to get on with it!

Now that I had followed through the stroke pathway, there was a sense of abandonment as I was discharged from the service. Yet another loss to come to terms with, with accompanying anxiety about how to navigate services for the future. My personal care needs were now supported with the use of my PIP, which I obtained with the help of a local advocate; The local NHS team were to take over and provide whatever support they were able to offer this but this was very limited and involved one visit initially to provide advice about exercises. On the first visit I dared to ask what level of recovery I might expect especially regaining any use of my paralysed left hand and arm. The response? If there was no recovery in the first six months after the stroke then there is no or little hope of this happening. My response when the physiotherapist left us was to break down in tears. It was devastating. There was no hope offered.

Writing this now in December 2019, I reflect on my mixed experience of the Stroke Pathway: some good and compassionate care, some good therapy where it is available, but also no goal setting unless I asked, and a reliance on motivation to change which just wasn’t there at the start. But I would also dare to challenge the orthodoxy regarding recovery, a sign perhaps of my own slow but continuing journey! I am blessed with an amazingly supportive partner, surrounded by friends who have helped whenever they could, privileged by my professional contacts and knowledge, and inspired by others who have done this journey before me. This website is my contribution to the fight: for those less well connected and supported, who deserve no lesser care, and need so much more motivation; and for those in power, that they might better understand what it feels like to be in receipt of services, dependent on others for the most mundane and humiliating of tasks, and often without the information and maps we need to reach our destination. 

It is good to be back home, but home, and being home, is quite different to how it was before the stroke. There is a lot still to come to terms with, and other things that I cannot and probably will not accept, but I am determind to continue in my recovery. This is my journey.