A revolutionary tool to help stroke survivors back on the road to greater independence is starting to be rolled out across the United Kingdom. The Stepping Out programme puts patients in the driving seat when it comes to drawing up a rehabilitation plan, allowing them to take charge of their progress as they adapt to living with a long-term condition.
The initiative is the brainchild of Dr Fiona Jones, who is based within the Faculty of Health and Social Care Sciences, run in partnership by Kingston University and St George’s, University of London. It consists of three main components – workshops providing in-depth training for health professionals, one-to-one sessions at which individual patients learn how to develop their self-management skills and a workbook enabling stroke survivors to set personal targets, chart their achievements and draw inspiration from reading about the experiences of others who have confronted similar health challenges.
With an estimated 150,000 people in the United Kingdom suffering from a stroke each year and more than 250,000 survivors living with disabilities as a result, the condition placed enormous pressure on the healthcare system, Dr Jones said. In the past, resources for rehabilitation had largely been geared towards helping patients through the initial phases of their recuperation, with much of the focus being placed on the problems with speech and mobility that many encounter. “Generally, there has tended to be less of an emphasis on the psychological well-being of patients and their longer-term needs. That has led to stroke survivors often reporting feeling abandoned and ill-prepared for coping with everyday life once they are discharged from regular therapy,” Dr Jones said. “Our goal is to help people living with this condition find a way to not only manage the physical challenges they may face but to also set personal targets to build confidence and make continued progress in the longer term.
Depending on individual circumstances, patients can get involved in Stepping Out just two weeks after suffering a stroke and there is no limit to how long they can be part of the programme. Similar models had proven highly effective in helping people adjust to living with chronic illnesses such as arthritis and diabetes, Dr Jones said. “Stroke is a complex and traumatic event that affects each patient to a different degree and a one-size recovery plan does not fit all. One of the key elements in the recovery of stroke survivors lies in involving them in their own rehabilitation,” she said. “Stepping Out is not just about helping people reach physical milestones – it’s about helping them regain a feeling of control over their lives. Doing the things so many of us take for granted, such as meeting friends more regularly, taking up a hobby or reading a newspaper can give them a tremendous sense of accomplishment.”
Stepping Out links in with the Department of Health’s National Stroke Strategy, which aims to ensure patients and their carers are more fully involved in making decisions about treatment and in designing support services. The strategy specifies that more needs to be done to support survivors developing self-management skills to reduce ongoing care costs.
Dr Jones, who has more than 25 years’ experience working as a physiotherapist specialising in neuro-rehabilitation, first came up with the Stepping Out concept in 2005. As the programme evolved, it was piloted with patients and health professionals in Inverness, London and Christchurch, in Dorset, who attended introductory training sessions and provided feedback on the first drafts of the stroke workbooks.
The programme was officially unveiled in Scotland earlier this year, with staff from NHS Tayside in Dundee completing their first workshop in May. It has just been launched south of the border, with a Stepping Out workshop held for stroke specialists from Imperial College Healthcare Trust in London last week. Health professionals who complete the programme will also be eligible for top-up training so they are able to pass the techniques on to their colleagues. Dr Jones hopes this approach will ensure the programme continues to flourish and will eventually be available nationwide.
The venture has been welcomed by charity Connect, which is dedicated to helping people who live with aphasia – a communication disability affecting at least a third of stroke survivors. “During our involvement in the development of the workbooks for Stepping Out, we were hugely impressed by both the underpinning ethos and practical approach of the programme. Stepping Out is an extremely valuable addition to the range of self-management opportunities available to people living with the consequences of stroke,” Connect’s Director of Innovation Carole Pound said.
More information about the Stepping Out programme is available at www.steppingoutuk.org.uk.