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Life After Stroke: Priorities, Challenges and Ways Forward
The first webinar hears updates from Bo Norrving (Sweden), Juliet Bouverie (UK), Liam Healy (Ireland) and Caterina Pistarini (Italy) on people’s experiences of the impact of stroke before and during the pandemic, and how healthcare and support services have adapted to meet the challenges of post-pandemic stroke care.
Bo Norving - is Professor in Neurology at Lund University, Sweden. He has published over 500 papers on stroke and several books. He was corresponding author of the Swedish Aspirin Low-Dose Trial (SALT) published in The Lancet 1991 as the first trial to demonstrate the benefit of low dose aspirin therapy for the prevention of stroke.
Bo is a founder of the Swedish Stroke Register (Riksstroke), the world’s first national stroke registry. Since 2014 he chairs the Riksstroke, and is actively engaged in many international register collaborations. He is the first Editor-in-Chief for the European Stroke Journal.
His presentation on challenges in supporting Life after stroke: experiences from Sweden can be viewed at 12:52 in the video.
Bo Norving Supporting Slides:
Bo Norving Q&A:
The (small) secretariat of the Swedish Stroke Register is governmentally supported and part of the country’s social medicine principle. For the registration at the hospitals, each unit covers its own cost as part of the healthcare system.
The post-stroke checklist is only a tool and what counts is which actions the post-stroke checklist leads to in the next step. Just ticking off the items in the post-stroke checklist is not enough
This has not been analysed in detail so far, but at this stage, we have not found any differences
In Sweden we recommend three to six months for the follow up, recognising that a structured systematic follow up is not yet in place and that it is difficult to be very strict on the exact timing. Still receiving therapy eg speech therapy or physiotherapy would not hinder a systematic follow-up visit in my view, since there are so many domains to follow up.
Juliet Bouverie - is the Chief Executive of the Stroke Association, the UK’s leading stroke charity promoting life after stroke. The organisation’s activities extend from funding stroke research, to providing services to stroke survivors and their families, influencing and campaigning for change, and educating and working to prevent strokes. There are 1.2 million stroke survivors in the UK, yet stroke still remains the fourth single largest cause of death in the UK and second in the world.
Juliet co-chairs the Stroke Delivery Programme Board with NHS England and is a member of the NHS Assembly.
Her talk on how COVID-19 has impacted people affected by stroke in the UK and what that means for stroke policy and support services can be viewed at 31:19 in the video.
Juliet Bouverie Supporting Slides:
Juliet Bouverie Q&A:
Yes. The Stroke Association’s Stroke Recoveries at Risk report stroke.org.uk/sites/default/files/campaigning/jn_2021-121.1_-_covid_report_final.pdf, published September 2020, shows that 7 in 10 stroke survivors report feeling more anxious or depressed recently, 45% of all stroke survivors now feel less able to cope with the impacts of their stroke, and over a third (37%) report feeling abandoned. We know that access to rehabilitation and support - already very patchy across the UK - was hampered by the pandemic. For example, our SRAR report shows that 57% of stroke survivors had appointments related to their stroke cancelled or postponed, and 55% had therapy cancelled or postponed. 39% of stroke survivors who had their stroke last year said they had not received enough rehabilitation therapies. We are committed to understanding the longer-term impact of the pandemic on stroke survivors as Covid-19 cases fall, and the backlog of rehabilitation and support needs there may be as a result. The Stroke Association has also committed to maintaining its two new Covid services into the long term: Stroke Connect - a phone support and signposting service for those newly discharged from hospital stroke.org.uk/professionals/stroke-association-connect, and Here for You - a volunteer phone support service to help reduce isolation and feelings of abandonment - stroke.org.uk/finding-support/here-for-you
I agree that there is a skill in handling conversations and therapy provision remotely. You need both the service user to be confident with the digital medium so that the technology is not creating a barrier, and then you need a skilled therapist who is able to adapt their approach to the digital medium as well. So, it will be a case going forward of ensuring that both are enabled/upskilled - the service user to access the technology and the therapist to adapt provision to the technology.
Although there have been government and academic-led reports on the experiences of ethnic communities related specifically to Covid-19, unfortunately there is limited information regarding the experience of BAME communities in accessing stroke services during this time. Our Stroke Recoveries at Risk report did include responses from people from BAME communities, however the number of responses was not significant enough to draw any specific conclusion. This lack of data is something we are acutely aware of at the Stroke Association and over the next six to 12 months we will be developing our strategy related to tackling health inequalities across the whole stroke pathway. An important part of this will be co-creating our strategy with people from these communities to understand the barriers and challenges they face, so that we can start addressing these and influencing for action.
We need to carefully evaluate all the innovations adopted during the coronavirus pandemic. However, I think it is likely that therapy provision will become a hybrid model in future, with face-to-face provision at the beginning, then ongoing remote rehabilitation for those who prefer or can benefit from this channel. However, we must not under-estimate the power of face-to-face therapy provision, particularly for those with aphasia and cognitive impairment who currently experience digital exclusion.
Liam Healy - is a Consultant Stroke Physician and Geriatrician and Clinical Lead for Stroke in Cork University Hospital, Ireland. Cork University Hospital is the busiest inpatient stroke service in the country and one of two thrombectomy centres nationally.
Liam trained in Ireland as a Geriatrician and spent a number of years training in Edinburgh in Acute Medicine and Stroke before returning to Cork in 2015. He is a member of the Irish Clinical Advisory Group on Stroke and a Clinical Lecturer in University College Cork.
His talk on life after stroke: experiences in providing care in Ireland during COVID-19 can be viewed at 1:13:00 in the video.
Liam Healy Supporting Slides:
CP: Yes, in particular for patients with severe disability that requires a good collaboration from person
JB: There is evidence to suggest that support with dealing with the psychological impact of stroke helps with adherence to medications and subsequent therapies.
BN: Scientifically this is still an open question. It is a difficult topic to study as so many factors influence depression and recovery.
CP: I’m not sure that stroke is so neglected in particular within the neuro rehabilitation field where the majority of patients is addressed on treatments of consequences of stroke disease.
JB: These are personal opinions from myself but I believe that stroke has been neglected for a number of reasons. It’s a relatively young medical sub-speciality with its own evidence base only starting around 30 years ago. It falls between ‘cardiovascular’ and ‘neurological’ conditions in terms of its classification and is not always mentioned as a condition in its own right. Stroke survivors do not have the voice that, for example, cancer survivors have because of the impact of the illness on people’s health wellbeing and their difficulty in speaking up and sharing their stories.
Previous market research work by the Stroke Association in the UK around the perception of stroke amongst the general population would suggest that for many people, stroke is poorly understood – it is not seen to be as ‘scary’ as cancer or heart attack and therefore doesn’t attract the same awareness and concern that these conditions do. Stroke is also very much perceived as only happening to very old people which again reduces the level of concern around the condition. And because the general public see it in this way and are less concerned/interested in it, this in turn means that it gets less coverage in the media and is generally less ‘acknowledged’ than other conditions. In turn potentially resulting in less financial support for stroke from donors. And thus less research as there is less funding available. Our new brand campaign was designed to address this lack of understanding/concern and we are making progress in changing public perception of stroke, but changing perceptions is a slow process which requires consistent and sustained messaging over a long period of time.
BN: The traditional reason is definitively that no specific acute therapy was available until a few decades ago. But even if that has changed, and we now have very effective acute therapies, there has been too little attention on life after stroke, and what it means for patients and carers in all different aspects. I think a common misconception is that there is little that can be done after the acute phase.
JB: Structured follow-up should happen at least once a year. The UK’s national stroke clinical guideline recommends that follow-up reviews should take place at six weeks, six months, 12 months, then annually thereafter
BN: This would be very reasonable for many good reasons. But I think there is a long way to get here: today almost all countries do not have even a routine systematic follow up after three to six months in place.
CP: Telemedicine needs the support of technologies and this is a main issue in low- and middle-income countries. This is the first problem. Then there are also economic issues. The health systems should support the costs. In Italy, in particular after the need of finding new possibilities, alternative to in-hospital treatment, the specialists in rehab are working to provide on this matter.
JB: We don’t have any definitive data on this, however we do know both anecdotally and from various pieces of market research that those in older age groups tend to be less techno-savvy and capable and this can be a barrier to accessing the internet/telemedicine. That said, we are also seeing that this is an area where the coronavirus pandemic has had a positive impact – the pandemic has upskilled many people, especially older generations – many of them will now do more online because they have been ‘forced’ to do so during the pandemic (“Positive Tech” has been identified as a key consumer trend influenced by Covid-19). Specific to stroke, we also know that people with communication difficulties find it particularly difficult to access these technologies
There’s plenty of work being done to retrospectively and quickly understand how digital health can support and improve the stroke pathway, and wider health services. For example, we recently contributed to this Patient’s Association report ‘Digital health during the pandemic: Learning lessons to maintain momentum’, which explores digital health used during the pandemic. Whilst the pandemic has accelerated use of technologies across the pathway, it’s vital that any changes during the pandemic are fully evaluated. Healthwatch have also produced a useful report to explore the rapid use of virtual consultations. Our Stroke Recoveries at Risk report stroke.org.uk/sites/default/files/campaigning/jn_2021-121.1_-_covid_report_final.pdf (p.36-39) shows that, whilst virtual healthcare has been well received by the majority (61%) of stroke survivors who used it during the pandemic, it is still not appropriate for everyone, and some of the barriers are explored in this report. We believe stroke services should evaluate and incorporate virtual models of stroke rehabilitation and support alongside face-to-face, offering people affected by stroke enhanced choice when accessing support. They should also engage with patients to make sure that no groups, including those with communication difficulties or those less digitally literate, are disadvantaged.
BN: Telemedicine has many advantages, but it is still unclear how good it is and to what extent it could replace visits in person after stroke. Telemedicine is attractive in many aspects, but before we rush into it, I would favour that the technique is properly evaluated.
Intimacy and sex after stroke: how to start the conversation
Intimacy and sex are important. However, for many stroke survivors this is an uncomfortable subject with many struggling to come to terms with their ‘new’ body or identity and coping with the implications of this. Additionally, many healthcare professionals do not feel confident or able to talk about sex or to know how to best advise and support patients or their families.
Diana Wong Ramos
Doug Youngson - is a Learning and Development Trainer with the Stroke Association, UK. He has a Masters in Person-centred Psychotherapy and 12 years’ experience of supporting people affected by stroke and brain injury, through the Stroke Helpline and his own counselling practice.
Doug’s current work focusses on training staff in the skills needed to have difficult conversations. He is passionate about rebuilding lives after stroke and believes that conversations about sex are an important part of this.
His presentation on how to develop confidence and practical tips on how to have meaningful conversations for both healthcare professionals and stroke survivors can be viewed at 18:33 in the video.
Doug Youngson Supporting Slides:
The Stroke Association’s My Stroke Guide tool has accessible articles and videos with information about sex and relationships:
Different Strokes (a UK charity for younger stroke survivors) has a booklet and series of videos:
To manage limited mobility and spasticity, it is generally suggested that stroke survivors lie on the affected side. There are specific suggestions for positions in articles like this one:
We can encourage people to experiment and find out what works for them, which can be fun way to bond with each other.
We can connect with our loved ones in lots of different ways, sometimes without words or with simple actions. Try to be creative and experiment to find new things that help you feel like a couple. This may take persistence and you may feel grief for things you have lost, so speak to your doctor or stroke team about emotional support that is available. It may help to think about things that brought you together. For example, if you both have a love of music, is there a way you can still enjoy that together?
Talk to your doctor for reassurance that you are doing everything possible to control your risk of stroke. The Royal College of Physicians (UK) guidelines state that stroke survivors can be reassured that sex is not contraindicated after a stroke and is extremely unlikely to cause another stroke. Consider making a decision not to have sex at first. You can build up to this with other forms of intimacy at a pace you feel comfortable with. Some stroke survivors have spoken about the need to balance carefulness with persistence, so do keep trying.
Diana Wong Ramos – Diana Wong Ramos was 34 years old and working as a journalist-editor for a magazine in Portugal when she had a Cerebral Venous Thrombosis stroke.
Diana could not walk but thanks to exhaustive work with a multidisciplinary rehabilitation team she began to regain some mobility and independence. Diana's life has changed to adapt to her new circumstances and she has a special interest in Patient Advocacy and Patient Engagement and was involved in the creation of the first Portuguese association of stroke survivors (Portugal AVC - Union of Survivors, Family and Friends www.portugalavc.pt and participated in the redesign of the Stroke Action Plan for Europe 2018-2030.
Watch the interview where Dianna discusses her story, focusing on wellbeing and healthy sexuality after stroke, and how healthcare professionals and stroke survivors can start this conversation. This can be viewed at 33:50.
I think there is no perfect timing... The most important thing is that there is desire on both sides and that the limits (if any!) of each one be respected. In my case, making love to my husband again contributed to increase my confidence in rehabilitation and, without a doubt, it made me feel like a woman, sexually attractive, despite the sequels of stroke.
After suffering a stroke my mobility was very compromised, my sensitivity too and the fear of suffering a new stroke was always latent. I think it would have been important to be accompanied by a sex therapist, just as I was by a psychologist or a nutritionist. Sexual health is often underestimated! And, in my opinion, this should not happen, not least because the healthy balance of our mental health is closely linked to the degree of satisfaction we derive from our sex life. That is my personal opinion!
In the acute phase of stroke, talking about intimacy or sex might be unreasonable. But during the long months that I was hospitalised in the rehabilitation clinic, with intensive sessions of physiotherapy, occupational therapy, psychology and activities of daily living, it would have been very positive to speak with a sex therapist about my fears... When the doubts are many and the embarrassment does not let us talk sincerely, Google can be the only source of answers. Perhaps not always the most suitable ones.
Intimacy does not necessarily involve another person ... And if it is true that exchanging caresses with those we like is very pleasant, masturbation can also be very satisfying. There is no better feeling than to feel good about ourselves, with all our faults and virtues. If we do not like ourselves, we are unlikely to empathise with each other ... Alone or with a partner, the most important thing is to feel happy with the choice you make.
Dr Ana Carvalheira – has been a psychotherapist and sex therapist since 1996. She is Assistant Professor at ISPA (University Institute of Psychological Science) and researcher at William James Center for Research at IPSA.
Ana is a former President of the Portuguese Society of Clinical Sexology and associate member of the International Academy of Sex Research.
The full conversation between Diana and Ana can be viewed here:
Life After Stroke: Caring for the Caregiver
The emotional, physical and psychological effects of stroke can extend beyond the stroke survivor and their relationships with those closest to them are altered by the illness. Informal caregivers may struggle to adapt to their new role which can aggravate existing difficulties.
Carla Mendes Pereira
Carlo Semenza - is Professor Emeritus, formerly Professor of Psychobiology and Neuropsychology, at the University of Padova, Italy and a registered psychotherapist and psychologist.
He has a special interest in lexical semantics and the retrieval processes, studied through the observation of specific aphasic conditions and the influence of language and number processing on selective attention to space and has published over 300 papers in peer-reviewed journals.
Carlo is affiliated to the International Neuropsychology Society, International Neuropsychology Symposium, Academy of Aphasia and Member of the Academia Europaea.
Carlo Semenza Supporting Slides:
Carla Mendes Pereira - is a lecturer at the Institute Polytechnic of Setubal, Portugal. Her PhD was on the research area of adaptation after stroke from the perspective of people who have suffered a stroke, their carers and health professionals.
Her research interests are neurorehabilitation after stroke, particularly on the impact and emotional changes after stroke, the immediate and long-term needs of both survivors and family members and on the process of goal setting in stroke rehabilitation.
Carla is a member of the Neurological Group of the Portuguese Association of Physiotherapists.
Carla Mendes Pereira Supporting Slides:
Jana Dobrkovská - has been the Director of Cerebrum - Association of People with acquired Brain Injuries in the Czech Republic since 2018.
Her early career was in the commercial and service industries before she moved in to health and science in 2015 after changing her personal approach to priorities in life.
Jana Dobrkovská Supporting Slides:
Listen to Jelka Jansa, Slovenian Stroke Support Society, talk about the burden of stroke among informal carers in Slovenia.
Listen to Katherine Staley, Stroke Association talk about the services available for carers in the UK