"My rehabilitation journey"

I left the Stroke Unit in June 2022 . I had a substantial stroke leaving me with left sided weakness. Thanks to the physiotherapists in the Stroke Unit PRI, I left the unit mobilising with one walking stick. I received Occupational Therapy(OT) which helped me get back to working in a kitchen which has been invaluable since being discharged, however I was dissatisfied and disappointed in the lack of my upper arm rehabilitation. I think this was a missed opportunity to begin my arm rehabilitation under supervision of the OT. Physio did  work on my arm during the sessions and supported me emotionally, I was so grateful for that.

I was referred on to outpatient Physiotherapy and Occupational Therapy. I attended an appointment with the physiotherapist who assessed my physical ability and muscle power. I was given sheets of exercises to complete at home. I did know how to undertake the exercises but I've never had to instruct myself with exercises let alone after not having had a stroke. I would have preferred sessions in the gym even with distant supervision, again dissatisfied and disappointed.

I also attended the neuro Occupational Therapist who assessed my upper limb, initially I attended weekly undertaking upper limb rehabilitation, this was changed to fortnightly. Initially I was  making  progress albeit slowly, my husband witnessed my progress at one session. Between annual leave and sickness , I missed several weeks of rehabilitation, when I did start attending again, the therapist was very negative and I felt they focused on theory of general outcomes of people who had a similar stroke to myself, rather than me as an individual. I was really disappointed as I had expected more from the therapist in the way of rehabilitation.

As the weeks went on, my goals were discussed, I had mentioned my wish to get back driving, the therapist stated that we would work on my cognitive ability to support me to get me back driving one week , then the next week would be working on my arm. I never received any more arm rehab. I was discharged from the service when the therapist left the service. On my last day the therapist apologised if they had been negative at times and that they felt they hadn’t been able to do their job as well as they could have done due to staff shortages. They voiced they had been getting frustrated working for the NHS. Not my fault at all or theirs. 

I was also referred to the Community Therapy Rehab Team at Crieff. The Therapist visited me at home and we sat down and set initial goals which were showering, cooking and getting out and about on the local bus. The therapist assessed me showering and applied for a bathroom shower adaptation, this has made a huge difference to me so thank you, they also helped me get back preparing meals in my kitchen so I am now independent, again. Thankyou for that.

I asked the therapist if they could work on my upper limb, changing my most important goal. I hated the way my arm made me look and was frustrated that I was more functional in my own home, this would have been more enhanced if I had some use of my upper limb. The therapist initially declined due to the feedback from the neuro therapist in PRI, they did however suggest they take a colleague who had worked in a stroke unit previously to assess my arm. An appointment was made and the therapists arrived as agreed. Both sat on one sofa whilst I was on the other, discussions around theory emerged again, I felt the decision was made even before the visit, which wasn’t fair at all. It was said that people with my type of stroke do gain some function in their arm.

I’m an individual and hoped for patient entered care which is the ethos of the NHS and Allied Health Services. That was the assessment of my arm, A physical assessment wasn’t made at all. How can that be classed as an assessment? How does anyone know that I could be that one percent person? Again disappointed and dissatisfied. The therapist who had worked in a stroke unit voiced that they had come as the bad cop.

I’ve since attended a private Physiotherapist who has worked on both my lower and upper limb. I’ve made good progress with my lower limb and making progress with my upper limb too. The biggest question I’m left with is  what, if and where could I be now if my rehabilitation journey had been different. I am an individual and hoped/expected patient-centred care which is the ethos of the NHS and Allied Health Services. I'll just hope things can change for future patients.