How I got involved with the Stroke HIT, and my hopes for what it can achieve

Stephen Hill, a patient representative on the Stroke Care Pathway Review, talks about his hopes for the Stroke Health Integration Team.

Life wasn’t being easy. My wife, Fiona, and I were coping with having all our parents alive into their late 80s and 90s and needing support at opposite ends of the UK, in West Wales and Scotland. On top of the usual pressures of a normal life, including my full-time job as a Dean in a university and looking after the grandchildren for two days a week, we were driving long distances to see one or other set of parents on most weekends.

The dam burst in July 2015. My father died at the beginning of the month, and I had a subdued 65th birthday. My mother was staying with us and the funeral was set for 19 July. On the 18th I got up early to complete the order of service and then to take my mother to view a sheltered flat before we drove to Wales. The flat viewing went pear-shaped when the occupant refused us entry extremely rudely. I was very stressed by this and embarrassed that it happened in front of my newly bereaved mother. Suddenly I felt the floor underneath me go sticky and wobbly and I fell against the wall and slid down it.

The fantastic caretaker who saw all this happen immediately summoned an ambulance. I don’t remember much after that until I regained consciousness in Southmead Hospital and someone was saying, “Stephen, you’ve had a haemorrhagic stroke”.

I got the bit about the stroke, but understanding what kind it was (a bleed in my head caused by a burst aneurysm) came days later, as did understanding about how serious it was. For some days I lay in my hospital bed in a stupor, with a burning headache, paralysed on the left side, but wholly unaware that I even had a left side.

There can be few things as overwhelmingly and suddenly catastrophic as a major stroke. There is no build-up to it and no way to prepare for it. I have no recollection of being in A&E, or of having brain scans, or nasogastric tubes and catheters fitted, just a sense of being in great pain, utterly helpless and frighteningly vulnerable, though my family maintained a constant vigil, and I felt safer when the excellent acute care nursing staff were looking after me.

After transfer to the rehab ward, I slowly realised the immensity of what had happened. At the time I was much more distressed about my loss of identity and about potential cognitive damage than I was about physical impairment. Reassurance on all those counts was gained by various means. Specialised practitioners and my family were in the front line caring for me in my unstable physical state, but work colleagues who visited, asked for my advice and then took it seriously made a big difference to my morale. So did the neuropsychologist who put me through heavy-duty cognitive assessments so that I had concrete evidence that my marbles were reasonably intact. But it was a serendipitous event which was to prove a significant turning point.

I was quietly doing something on my iPad in my room when a consultant (not mine) bounced into my room like Tigger, and introduced himself as Phil Clatworthy. He wanted to talk to me about being an in-patient in the Digital Age. After discussing the importance of social media for keeping connected, varieties of iPad stands and clamps for the hemiplegic, and the difficulty of logging into the Southmead wifi with only one hand, we somehow got to talking about Phil’s new project – applying to set up a HIT for Stroke. Thus it was that I became involved with the HIT from its very inception. That Phil was prepared to seek my opinion on the early documents which were to become the formal bid to set up the HIT built up my shattered confidence enormously, and I have been an enthusiastic proponent of the HIT ever since, delighted when the initial funding was granted, and excited as it starts to acquire a shape and do stuff.

My hopes for Stroke HIT

My perspective on what I hope the Stroke HIT can achieve is that of the engaged stroke survivor, informed by experiences as an in-patient and then after the excellent ESD (Early Supported Discharge) team left. That point when I was left with no further rehab support has often been described as being left to fall over a cliff. It certainly felt as though the NHS, which had been looking after me and re-equipping me for a return to something like a normal life, had dumped me without pity and also thrown away its investment in, firstly, saving my life, and, then, in starting to repair my disabled functions.

It seems that support stops before recovery does, and, when looked at from a holistic point of view, it makes no strategic sense to commence the process of restoring stroke survivors and their carers to productive roles in society and then to abandon them before the process has gone as far as it can. From the individual perspective it can be utterly demoralising to see one’s hopes of a long-term recovery dashed by the sudden and total withdrawal of support except for what one can obtain from the charitable sector.

I fully recognise that the NHS and other support agencies are strapped for cash, but continuing rehab for stroke survivors has the potential, crudely, to restore them to being tax-paying citizens, thus mitigating their drain on the public purse. Sadly it was not my experience that available precious resource was always used effectively.

A simple case in point is that rehab physiotherapy in hospital doesn’t happen at weekends, but nursing staff still have to care for in-patients then. I occupied a bed in the rehab ward for nine weeks (63 days), but, with weekends, bank holidays, staff training events, sickness and holidays, I received no rehab therapy on at least 25 days, including, at one point, 5 days in a row. That is to say that there was no rehab during almost 40% of the days I was in hospital. That experience was frustrating and very bad for my morale.

Furthermore my discharge was delayed by imperfect communication between hospital staff and social services. As a consequence of such a prolonged stay, I became increasingly anxious about going home and ran the risk of becoming overly dependent, and even institutionalised. I was afraid to go home, for myself and for my wife who would have to manage me somehow, but, in retrospect, I see that going home marked the point when my rehab accelerated, especially in terms of learning to walk again.

I see the Stroke HIT as an important opportunity to promote a range of enhancements to ensure better and more strategic use of available resource at the same time as securing an improved and more progressive experience for stroke survivors. As a starter, the following outcomes would help to ‘make a real difference’.

• Better integration of research and evidence-based practice in respect of stroke prevention and the stroke recovery pathway.
• Enhanced integration and communication between different support and rehab services.
• Sustaining the best care and support for stroke survivors in BNSSG.
• Enhanced (7-day) provision of in-patient rehab therapy to enable more strategic use of precious nursing resources
• Earlier and longer supported discharge packages to help stroke survivors and their careers to return to a life that is as near to normal as possible
• Public education and training to help to prevent strokes, and about the likely effects of having a stroke
• Information packages for stroke survivors and careers about where to find help after discharge from hospital
• Informing and influencing stroke-related policy and resource allocation in BNSSG, including taking full account of the patient experience