Stroke and TIA (Transient Ischaemic Attack) are very complex conditions and anecdotal evidence has now revealed that there can be long-term difficulties which are invisible and so too often go unnoticed and unsupported.

A research team at the University of Cambridge and Queen Mary University of London, led by Dr Anna De Simoni, received funding from the Evelyn Trust for a yearlong research project to gather evidence on this hidden problem. The team started with a study of the online posts written on Talkstroke, the forum of the Stroke Association, between 2004 and 2011.

After analysing comments and discussions, it became clear that very common problems included fatigue, memory loss and issues with concentration. 88% of participants suffered from stroke-related impairments which affected their ability to stay in work and 70% suffered from problems that were invisible and for which their employers had therefore made no adjustment. These findings have been investigated and validated at a local level through four focus groups held around Cambridgeshire with stroke survivors, carers, clinicians, NHS commissioners and employers’ representatives. Analysis is ongoing and the results will provide evidence to local healthcare policy makers about the current provision of community neurorehabilitation services to patients with stroke or TIA. 

“Stroke survivors report serious difficulties that mean they can be at risk of losing their job, or even being bullied. They are usually expected to perform at the same level as before their stroke with no adjustments made, or recognition that they may not be fully fit and need support. Disappointingly, this was sometimes true even on the occasions when a survivor explained their difficulties to their employer,” says Dr De Simoni, who is also a practising GP.

“There are costs to both the individual and society following a stroke – one of which is the temporary or permanent loss of employment. When people have returned to work, it’s very disheartening to find that they face long-term health problems which go unrecognised and may even be the cause of victimisation. As a GP, this research has really changed my clinical practice. I know now that a stroke survivor who seems fit and well may really be suffering from crippling fatigue, or other problems, that are not easy to spot. It has made me more inquiring with stroke patients and more alert to long term problems for younger working survivors.”

The cost of stroke care in the UK has been estimated at about £9 billion per annum, of which around 30% is income and productivity loss. Improving care and support for survivors who return to work could reduce that financial burden. This project, due to complete in autumn 2016, is hoping to provide evidence that can help improve awareness of the long term impacts of stroke and TIAs for primary care clinicians, employers and stroke survivors. Through improved awareness, both at the workplace and in primary care, combined with better assessments to identify invisible impairments, the team hope there will be more help for stroke survivors in developing coping strategies. This should also improve levels of support in the workplace and from primary care professionals, eventually boosting survivors’ chances of successfully returning and staying in work. 

“A return to work is a key objective for young stroke survivors and there are of course many benefits for the individual and society from a healthy working life. We can make work both productive and enjoyable for stroke survivors at a relatively low cost and this will have enormous benefits for all.”

Read more about this research on the University of Cambridge research site.