News

Virtual Reality (VR) allows an individual to interact with an artificial world through hand controllers and headsets. It was created for gaming, but research has shown how it may be applied to various health settings.

There is a growing evidence that indicates that VR can possibly improve motor function by providing a fun and motivating environment that can link to physical movements to encourage adherence to rigorous upper-limb task-based stroke recovery programmes. Current clinical evidence shows that VR-based rehabilitation is beneficial as an adjunct therapy to convenient rehabilitation therapy, but it is unclear who benefits most from VR rehabilitation (e.g., severity of impairment, time since onset of stroke, what type of VR (e.g., immersive vs. non-immersive), what kind of feedback is more effective).

Although delivery hardware and software have  improved over recent years, the evidence indicates that VR platforms do not suit all stroke survivors. Nevertheless, VR-based kit is being designed by commercial enterprises for stroke survivors to try, and this is on the whole, a good thing.

The University of South Wales research is aiming to improve finger function using virtual reality in post-stroke survivors. The researchers are working with TG0, a company that has created a new VR hand controller called etee. etee has the capability of tracking fine finger movements, which when embedded in a virtual reality environment, can offer realistic visual feedback; a key factor in therapies such as mirror therapy.

This is a pilot study to test the feasibility of using VR for stroke survivors.

If you think you fit the participant criteria below and are kindly interested in helping Bethany Strong a post-graduate student studying at the University of South Wales with the work to test the feasibility and effectiveness of using the VR, please email the team (Dr Biao Zeng, Professor Peter McCarthy, Dr Ali Roula and Bethany Strong) at bethany.strong@southwales.ac.uk for details.

The team is looking for people who:

1)       are over 18 years old.

2)       can give informed consent.

3)       are 3 months or more post-stroke

4)       have reduced control in one hand

5)       have access to the internet and a windows laptop or computer

6)       can understand and read English

7)       do not have any great problems with their vision

8)       do not have any history of motion sickness

9)       do not have Aphasia. (Aphasia is when a person has difficulty with their language or speech).

10)     are not using the Nine-Hole Peg test (9HPT) as part of their usual care/ rehabilitation.

If this technology shows promise, the researchers hope to include participants from the above groups in future studies.

Please download details of the study by clicking this link.

A systematic review and thematic synthesis of qualitative research concerning venue-based exercise interventions for people with stroke in the UK has just been published in the journal ‘Physiotherapy’. The available evidence base analysed found that the ARNI fares better than Exercise Referral Schemes in terms of survivors making important improvements in activities of daily life (ADL). including eating, dressing and household tasks. ARNI has been found to improve physical function and mobility and importantly, is non-ambulant people inclusive.

This synthesis by Sheffield-Hallam University researchers Rachel E Young (Senior Lecturer in Physiotherapy & Specialist Neurological Physiotherapist), Dr David Broom (Reader of Physical Activity and Health), Professor Karen Sage (Professor for Allied Health Professions), Kay Crossland (Clinical Specialist Physiotherapist) and Dr Christine Smith (Deputy Head, Department of Allied Health Professions) makes the salient point that exercise following stroke leads to reduced physiological risk factors, improved physical function and mobility.

It is reasonably well-known that in general, exercise after stroke participation is known to be associated with significant improvements in quality of life. Data relating to the effects of exercise following stroke suggests that participants perceive improvements in physical function, participation and psychosocial wellbeing.

But it may be less well-known that engagement with exercise amongst the UK stroke population does not meet published recommendations and that exercise referral participants advised to go to gyms report feeling intimidated in the traditional gym environment. Moreover, that long-term adherence to exercise referral programmes is less than 50%. This is not good at all.

ARNI Approach on the other hand, is known for primarily being a one to one approach with the point that all stroke survivors are different and often require highly customised rehab/exercise teaching/support in their own homes even to be able to get out and re-join the community. Further, some survivors have no desire to go to gyms or involve themselves in groups.

But ARNI does run also a number of small groups around the UK, eg. ARNI Port Talbot, Wales – BBC News Report from 2015.

Please read also this prior ARNI blog article: Exercise After Stroke: Everything You Need To Know.

The ARNI group work follows a similar kind of methodology/protocol that one to one the intensive type of exercise/rehab training that ARNI is well-known for. Therefore ARNI group training is highly adaptable, hard work (makes you sweat!) and highly differentiated throughout sessions rather than a ‘one size fits all’ approach (as noted by the last bullet point, below).

This systematic review compares studies of ARNI groups and UK exercise referral schemes. Of all studies, one concerning ARNI had the greatest age-range: 19-84. 

Rachel Young reflects (to me) on the benefits of ARNI Approach from the data she sees:

• Participants on ARNI programmes feel challenged to push the boundaries of their recovery and experiment with new activities.
• The ARNI programme offers a de-medicalised experience and facilitates people with stroke to gain confidence in their local communities and public venues.
• ARNI exercises are associated with improved physical function and mobility.
• The ARNI intervention is inclusive to non-ambulant people with stroke, who report equal benefit and improved quality of life associated with the programme to their ambulant peers.
• The ARNI approach incorporates a peer leadership model which fostered an atmosphere of group support and encouragement.
• The ARNI model integrates group exercise with individualised goals and activities to capture the benefits of peer support with an individualised programme.

As noted in the second sentence of this blog, the impact of exercise upon Activities of Daily Living (ADL) was mixed when scrutinising data from those doing Exercise on Referral (ERS) schemes, with participants from two of the studies suggesting that they did not experience improved performance in ADLs. In contrast, participants who had engaged with the ARNI programmes identified specific improvements in ADLs including eating, dressing and household tasks.

Exercise referral schemes (ERS) were perceived as a substitute for physiotherapy. In contrast, participants from the Norris et al (2010) study concerning ARNI stated that they had felt “mollycoddled in hospital” and that the ARNI programme was the opposite to “half-baked physiotherapy.”

Analytical theme 1: “Training principles as a foundation for programme design.”

The ARNI Training principles as a foundation for programme design were found to be a significant factor:

The synthesis found that all participants on ARNI programmes experimented with attempting new things, and tasks they thought they could not do. Participation in the ARNI programme had re-introduced experimentation which is likely to have increased confidence. For example: “I’m finding I can stand up now without having to push myself up on my hands. I’m doing that more often. I’ve even tried a couple of times from the settee, which is low down, and I’ve done it.”

The synthesis also found the the ARNI training described as a physical challenge both in its intensity but also the activities undertaken in the  programme. For example: “Challenging, I found it was very challenging, just the first day when we had to sort of actually walk on a mat without a stick…I felt that was really challenging…but also encouraging, to do more than I thought I could.

In some contrast, in relation to Exercise Referral Scheme, the synthesis found that some participants viewed the focus of gyms to be on fitness rather than rehabilitation and whatever they did in the gym would not further their functional ability. For example:  “Once they’ve assessed you, you’ve got this key you put in the machine, it tells you how long you’ve got to do and everything. With a computer you don’t need an instructor”

Analytical theme 2: “I’m not just a stroke patient anymore”

The synthesis found there was a sentiment that the individuals’ capacity had been artificially limited and that was now being tested by the ARNI Programme.

Implicit in many of the comments taking part in the ARNI Programmes was the idea that the individual had been challenged to reconceive their own possibilities. For example:  “Whatever you do don’t medicalise it .. I think one of the key benefits of this is that it’s not another bloody appointment. You know it’s not the hospital… it’s also a community facility .. it introduces you and makes other things accessible”

A commonality of all approaches in rehab/exercise after stroke was revealed by the synthesis too: Post-stroke self was portrayed as fragile. Lack of confidence and purpose and perceptions of how people viewed them post-stroke made it easy for participants to retreat into “safe environments”. For example: “The fact that I could contribute and I still had something to give, I wouldn’t say to society. But I wasn’t just a has-been. When you do come home from having stroke you do feel that you are a has-been”.

This does make the requirement for the stroke survivor to ‘take back control’ and become as autonomous as possible in his or her ADLs, as key to progression and ‘beating/managing’ the effects of stroke.

When it is borne in mind that these group studies show data from just 6 to 12 one hour sessions, the heightened ARNI training effects of intensive one to one retraining with a exercise professional can be possibly be surmised… and many are shown here in ARNI  Rehab  Testimonials

A sentence needs to be highlighted from the conclusion of this synthesis: ‘Rehabilitation services need to collaborate with exercise providers to facilitate a positive transition towards long term exercise participation.’

————————————-

Tom says: ‘This is exactly so. Healthcare professionals would like there to be a seamless provision of support and ideally, rehab plus exercise. But public often find out upon discharge that the wait for a community OT or physio to come and help can be up to 12 weeks (or more). The therapy may or may not be beneficial enough or continue long enough. Some last for 6 sessions (of 45 minutes or so). The survivor most usually isn’t taught how to help themselves’.

‘Group classes, if they exist for stroke, are extremely patchy around the UK and often the survivor is in no fit state at all to attend. Often the group classes are not ‘retraining focused’. If they are, they’re at best run by stretched physiotherapists who are not exercise professionals… although some are and of course there is natural cross-over’.

‘So the survivor is left with, if they want to rehabilitate optimally, attending a really good physiotherapy clinic once a week – go to somewhere like Hobbs Rehabilitation or PhysioFunction which are both great. Or they can ask for for an ARNI Instructor to come to their house weekly or daily. ARNI is very affordable and has a 20 year history of rehab/reintegration-to-lifestyles successes.

An outstanding free (but by its nature, quite booked up) Queen Square Upper Limb Clinic set up by Professor Nick Ward (see prior blog page for interview). Rehab services like Professor Ward’s Institute of Neurology have recognised this synthesis’ conclusion above a long time ago (at least 12 years now),  and have made strenuous efforts to work with/teach exercise & rehab trainers about neurorehabilitation and the potential of the brain to adapt via repetitive activities. And how to steer rehab re-training efforts optimally.’

Tom has consistently noted that Neuro-services and experts in Neurorehabilitation, working hand in hand with exercise professionals (as far as their very limited time can allow) to provide support/learning for that next ‘rung’ (the rehab/exercise professionals) who CAN offer long term rehab, is THE key.

Synthesis:

Young, R.E., Broom, D., Sage, K., Crossland, K., Smith, C. (2021) Experiences of venue-based exercise interventions for people with stroke in the UK: a systematic review and thematic synthesis of qualitative research. Physiotherapy, 110:5-14. Read here

Are you a stroke survivor who is struggling to sleep? If so, you are not alone.

Research has found that sleep problems are much more common for stroke survivors, compared to in the general population. This is an issue because sleep is so important for many reasons. A lack of sleep can have a negative impact on our mood, reduce our alertness and concentration and can even affect our learning of things, including motor skills.

Researchers led by Professor Heidi Johansen-Berg, together with the Oxford Centre for Enablement and the Oxfordshire Stroke Rehabilitation unit, looked at sleep quality in 59 brain injury and stroke patients in rehabilitation units. They found that those who had a better sleep quality saw greater improvements throughout their rehabilitation. Patients with better sleep showed less overall movement impairment in their affected arm and legs and were more mobile when they were discharged from hospital.

Professor Johansen-Berg and Dr Fleming have expanded this study, assessing stroke survivors in the community.

In total, 70 stroke survivors and 76 people who hadn’t had a stroke took part, by answering questions about their sleep and wearing an activity monitor at home. Some had experienced stroke fairly recently (within the past year), whereas others had their stroke many years prior to taking part in the study.

Similar to what they found for people in hospital, stroke survivors rated their sleep as significantly worse than people who hadn’t had a stroke, and spent more time awake overnight.

This did not seem to relate to how long it was since the stroke occurred, leading researchers to conclude that sleep problems can persist long term after a stroke. People who reported difficulty sleeping were also more likely to have low mood, such as symptoms of depression.

Using this information about how important sleep is in the recovery of stroke survivors, the researchers are now hoping to find ways of improving sleep for stroke survivors, both in hospital and later when they are home.

This is why they are currently running the INSPIRES study (Improving Sleep in Rehabilitation after Stroke), which is a study looking at a sleep-improvement programme for stroke survivors in their homes. If you are a stroke survivor who wants to improve their sleep, take a look at the information from the Team below!

Some wonderful ARNI members have already taken part in the study, and so far the study has over 50 people participating. If you would like to improve your sleep and help with some research that aims to positively impact the lives of stroke survivors in the future, please do get in touch with the Team:

Bolt Burdon Kemp (BBK), a very highly-regarded Brain Injury Solicitors firm in London, have become Corporate Partners to the ARNI Charity for Stroke Survivors!

This is hugely exciting for us and we would like in particular to thank Hokman Wong, Senior Solicitor and specialist in cases where adults have suffered brain injuries for agreeing in principle, then working closely with us to bring about this Corporate Partnership.

It is necessary to define terminology. BBK want to support ARNI and the people that it serves, by bringing its resources, time and contacts to bear help the Charity. Those who the Charity and BBK support are most generally the same, creating a symbiotic relationship that works well for both parties. In this instance, helping both to raise issues and provide concrete help for survivors of brain injury. Whilst BBK may provide some financial support to ARNI, given the demand for ARNI’s valuable service, any and all financial or other support you are able to donate to ARNI will be gratefully received!

1. The first activity has been for Hokman Wong, who is particularly concerned with Rehabilitation Prescriptions (RP) for those with TBI to interview the ARNI Director about the state of play for stroke survivors in this area. Dr Balchin is a founder member of the ABI Alliance, created by Professor Mike Barnes, which campaigns to highlight the role of the RP and to ensure that post-discharge, the individual with ABI and/or their family/carers have a copy of it, an appointment with the GP to discuss its contents and a plan for accessing the neurorehabilitation services detailed in it.

In 2010, the Clinical Advisory Group recommended every patient admitted to a Major Trauma Centre should have their rehabilitation needs assessed and documented through a Rehabilitation Prescription (RP).  Ten years later RP’s are still not being consistently and effectively used to the detriment of patients and the people who support them.

Here I talk briefly to Tom Balchin, founder of Action for Rehabilitation from Neurological Injury (ARNI) about his experience with RP’s and how it could benefit stroke survivors if used properly.  Tom suffered a haemorrhagic stroke when he was 21.  Through hard work and determination he overcame the effects of his stroke.  For the last 20 years Tom has devoted his life to helping other stroke survivors make a functional recovery through a specialist rehabilitation and exercise programme he developed based on his own experience.  The ARNI programme is backed by a number of clinical studies and Tom’s methods are endorsed by senior doctors.

1) Question: What is a rehabilitation prescription?

Tom: The notion of an RP first came out of Trauma Services a decade ago.  At this time there was a growing understanding as patients moved between stages of recovery in acute centres to rehabilitation in the community, there was often a steep fall-away of information available to professionals and patients.  Such information is essential to guide a patient’s rehabilitation to ensure the best outcome. The RP itself should identify the rehabilitation needs of a patient and how these needs will be met.  It should be started within 3 days of admission to a Major Trauma Centre by a suitably qualified member of the rehabilitation team, usually a Band 7 physiotherapist.  The RP ought to be regularly reviewed and updated by the multidisciplinary team (MDT).

2) Question: What information should a rehabilitation prescription contain?

Tom: From a patient perspective the main aim of an RP is to document neurorehabilitation needs in order to plan treatment to meet those needs.  Neurorehabilitation is multidisciplinary, with core specialties including occupational therapy, physiotherapy, speech and language therapy and neuropsychology. The RP should contain information on various aspects of recovery including: description of injuries/illness; psychosocial background; treatment to date; clinical restrictions; and individualised description of rehabilitation needs.  There should be enough information for each specialist in the MDT to plan and deliver ongoing rehabilitation to maximise the potential for optimal outcomes.

3) Question: Who should be given a rehabilitation prescription?

Tom: A copy should be given to both the patient and/or family as well as their GP.  However, as Professor Mike Barnes, ABI Alliance Chair, has stated ‘the RP has no value if the individual with an acquired brain injury and their GP don’t receive a copy.  If the individual and the GP don’t know what rehabilitation is required then no access to services can be planned or implemented’.  There is a view, clinically and in the community, that use of RP’s is sporadic.

4) Question: Turning to stroke, why are rehabilitation prescriptions important for survivors?

Tom: When the patient reaches the community, past the realms of NHS help, an RP that can be used to inform ongoing rehabilitation is ideal.  Some patients, or most often their families and or carers, are very careful to keep as much information as they can.  However, often patients seem to travel away from the clinical remit without copies of MDT discharge notes and no guidance about ‘what to do’ when they get back home.  Particularly during this unprecedented period, when the disruption to health and care services caused by COVID-19 meant national stroke initiatives across the UK have been paused or slowed.  It is not surprising that this is happening.

5) Question: Can you give an example of recent disruption to stroke services?

Tom: As far as recent patient-care is concerned, telehealth is being utilised like never before.  A recent Stroke Association survey of almost 2000 survivors makes interesting reading.  44% had appointments related to their stroke online or over the phone during the pandemic.  28% had therapy (including physiotherapy, occupational therapy and speech language therapy) online or over the phone.  Unfortunately, virtual methods of healthcare have not been an option for everyone and the number of stroke survivors who had therapy cancelled or postponed is double the number who received therapy online or over the phone pre-pandemic.  This shows many have gone without their usual rehabilitation support.  For patients who have gone without, or had very little therapy, and have the means to afford private support, an RP would be ideal to inform an independent therapist or trainer.

6) Question: What is your experience with rehabilitation prescriptions in stroke survivors?

Tom: They basically don’t happen.  Even now, senior clinical therapists around the country have only heard rumours about them being created and are not at all clear what form these would take. I talked to Professor of Healthcare Research at Nottingham University, Avril Drummond, about RPs for stroke survivors.  Professor Drummond is aware of most nuances of the national situation and forthcoming initiatives in stroke.  After a few weeks of asking colleagues about RPs for stroke survivors she ‘drew a total blank’.  Further questioning to some national Leads revealed they ‘don’t know’. If national Leads don’t know, then we can be pretty sure that nothing is going to take place on this any time soon.  This is a shame because it would be invaluable for a patient to know any therapist or trainer they choose to work with can gain access to a simple ‘passport’ containing up to date information on their rehabilitation needs. Ideally, an RP would be updated as a patient moves forward in their life after stroke.  The RP would be accessible by other rehabilitation professionals.  Assisting professionals is essential to getting the best outcome in the most efficient way.

7) Question: What is required to ensure rehabilitation prescriptions are used effectively?

Tom: The answer would have to be a comprehensive national rehabilitation strategy to roll-out RP’s as a requirement to give to patients and professionals; to provide clear data to refer to as patients move away from acute services to community services and beyond.

2. Hokman last year wrote a superb Review of ‘Had a Stroke? Now What? Hospital to Rehabilitation and Beyond’. Thank you Hokman!

3. BBK and ARNI are now working on a 3-hour Zoom-based Stroke Rehabilitation Conference/Workshop in April 2021 for professionals and patients – and are working on the schedule at this moment. Exciting times: thank you for supporting ARNI by reading these posts and even forwarding them on to interested friends and colleagues! The more people we can reach the better.

If you feel you need advice, may have a Brain Injury claim or are enquiring on behalf of a loved one, please contact Hokman direct, free of charge and in confidence to discuss at hokmanwong@boltburdonkemp.co.uk. Please tell to him that you saw his name and email on the ARNI site.

Life is rather restricted at the moment. It’s not that great. Is your rehab on pause? Are you currently still in a wheelchair? Or, do you have just a few limitations from stroke? Or do you have a friend or family member who is??

If this is the case, ARNI would like to help you rehabilitate your balance control, cope with foot drop, get stronger, reduce spasticity, recover the ability to grasp & release objects and become self-reliant rather than dependent on others.

Whatever your status, whoever you are, ARNI would like to offer you the full 7 Successful Stroke Survivor videos (45-60 mins) either in physical format, or convenient online anytime streaming access format to any device, for half price to give you encouragement to persevere..

Learn how ARNI Rehab Concept align directly with the latest evidence base for stroke rehabilitation interventions and get to practise them alongside Dr Balchin as your guide, at home!

The Full Set (physical or streaming) is £98.00 incl p&p – but get yours now for £48 (incl p&p)!
 Individual DVDs (physical or streaming) are £20 incl p&p – but get yours now for £10 (incl p&p)!

(Your price is lower than the cost-price for the ARNI Charity)

You’re so welcome to take advantage of this offer, which is time limited until 1st March 2020, by calling the ARNI Central Number

0203 053 0111

Please do leave your name and number if we are unavailable and we will call you back.

The evidence base shows that you MUST perform some exercises routinely to help yourself to recover well.

But what do you actually do?? Dr Tom Balchin shows you the best (most generalisable) strategies from the best-selling manual The Successful Stroke Survivor.

7 DVDs of 45-60 minutes each, filmed in full HD 1080p clarity, this superb quality DVD set or online programme will be your accompaniment to progressive rehabilitation.

Get YOURS or a set as a gift for a friend today. Call: 0203 053 0111

Please remember to leave a message if you are forwarded to an answerphone: we WILL get back to you!!!

Stroke often causes major changes to someone’s identity and sense of self in a range of contexts, through changes to work, relationships and hobbies. 

This comes as a consequence of a range of factors, including the long-term impact of the stroke (to language, movement etc.), situational and psychological changes. However, according to the team, little is known about the extent to which stroke impacts identity, or what factors contribute.

The University of Surrey is now carrying out a research study into Cognitive Functioning and its Relationship with Identity and Mood in Stroke: please read on!

 About the Research

This study is about the impact of stroke on identity: assessing the relationship of changes in sense of self to other direct or indirect causes of stroke, such as mood, language and memory. For their analysis, the team are looking for a wide range of survivors, not only those with perceived difficulties with the above issues following stroke, but also for those without.

Taking part will allow them more insight to the psychological impact of stroke. The team emphasises that while this is unlikely to have personal benefit for the person taking part, the study will publish anonymised data in scientific journals, therefore increasing understanding and potentially improving psychological care.

Open to Recruitment

You may be able to take part if:

• You are over 18 and have had a stroke at least 6 months ago.
• You do not have any further neurological conditions, such as Alzheimer’s.
• You do not have a current psychiatric disorder that is not under effective management.
• You are able to provide informed consent.
• You are able to complete a questionnaire either independently or with help from a caregiver.

If you are unsure of whether you are able to take part, please contact us (h.thompson@surrey.ac.uk).

What You Will Need to Do

A team member will ask you to fill out an online survey, which will take approximately 30 minutes. These will ask questions about you, your stroke, your identity pre and post-stroke, and about your mood.

Then the team will follow this up with a virtual Zoom session also lasting approximately 30 minutes. Here, you will be asked to carry out some language and memory tests. The tests are similar to activities you may possibly have done with a speech therapist or psychologist.

For those who do not have access to a computer there is the option to complete the study by phone or post – this may just take a little longer.

What Happens Next

The results may be disseminated in undergraduate dissertations, at academic conferences and in journals, but your part will remain anonymous. The team aims to send you an overview of the findings of their study, along with any further implications, once the research is complete.

Please contact Dr Hannah Thompson at h.thompson@surrey.ac.uk  if you have any questions or require any further information.

If you do not have any further questions and would like to take part, please see the link to the online survey below. You can fill this out in your own time. 

The team will contact you shortly after you have completed the survey to arrange the second half of the study.

If you would prefer to complete the whole study over the phone or via Zoom. please contact Dr Hannah Thompson or one of the other members of the team:

Carmen Rumbold: cr00473@surrey.ac.uk

Chloe Christaki: cc01485@surrey.ac.uk

Chelsea Mathias: sm02350@surrey.ac.uk

For more Information on Cognition, you can get a copy of:

Had a Stroke? What Now? (2020)

Transcranial direct current stimulation (tDCS) uses a constant, low electrical current to stimulate a targeted region of your brain. This is performed via surface electrodes placed on the scalp.

A note for ARNI blog readers: this kind of neuromodulation technology is mostly only accessible during in-patient or out-patient rehabilitation. Clinicians don’t encourage ‘do-it-yourself’ use of tDCS. Even if you find it possible to gain access to similar devices with the intention of applying the stimulation design of published studies, this is inadvisable and dangerous because improper use might cause harm.

Clinically, there is moderate quality evidence of benefit on upper limb impairment, as compared to placebo or control, and there is high quality evidence that it’s not harmful. There exists strong evidence that it does not improve gait or balance when compared to sham stimulation.

Although tDCS could be provided for stroke patients (for example before or during upper limb task-practice to try to boost neuroplasticity, coupled with novel technologies like robot-assisted training), its added value to rehabilitation outcomes has been limited so far due to lack of adequately-powered research. 

So, our colleagues at the Institute of Neurology, UCL have been exploring the issue of tDCS to improve the evidence for potential for improved upper limb outcomes via their ReCAPS Study.

ReCAPS: Re-opening the critical period for plasticity after stroke. This study is funded by Brain Research UK (BRUK).

(ReCAPS is a research study at the moment, not a clinical trial or free therapy).

This study has now re-opened with extensive COVID-safety measures in place.

OPEN TO RECRUITMENT! You may be able to take part if:

• You have experienced a stroke which affected the movement of your arm or hand.
• You have not experienced a stroke.

The UCL team wants to know:

• How brain activity changes after someone has a stroke.
• If weak, non-invasive brain stimulation could encourage the brain into a pattern of activity which is useful for upper limb rehabilitation.

You will need to have an MRI scan and attend 2 study sessions at the UCL institute of Neurology.

During sessions, you will watch a nature documentary while having very weak brain stimulation. Brain stimulation feels like a warm, tingling sensation on your head.

Please contact one of the team for more information:

Kirsten Thomas: kirsten.thomas.19@ucl.ac.uk

 Jenny Lee: Jenny.lee@ucl.ac.uk

 Carys Evans: Carys.evans@ucl.ac.uk

—————————————

Tel: 0203 4488 774

Website: https://recapsstudy.wixsite.com/research/

Stroke survivors commonly experience fatigue, which can have a major impact on their ability to self-manage and be as independent as possible again. A major survey has shown that the pandemic has made the condition more difficult to cope with. It can greatly impact upon quality of life, making everyday tasks feel overwhelming and unachievable, or just plain exhausting. Furthermore, post-stroke fatigue doesn’t always improve with rest and isn’t necessarily related to recent activity. So, it’s not like typical tiredness. Up to 70% of survivors experience fatigue that includes overwhelming physical and/or mental tiredness and exhaustion. 50% find this kind of particular tiredness to be their main problem.

The Stroke Association reported in September the results of their survey of 1,546 stroke survivors and 403 carers and family members. This includes 110 people who had their stroke this year, and 69 people whose stroke has happened during the Covid-19 pandemic (since March 2020). Their comments showed that the pandemic has caused recoveries to stall, or in some cases actually contribute to making the effects of their stroke – including fatigue – worse or more difficult to deal with. A large proportion reported also reported that the pandemic has had a negative effect on their progress.

Nottingham University have started a research study (Principal Investigator: Professor Avril Drummond ) to shed new light on the way people seek to manage it. To do this they need to interview as many people who have suffered a stroke and have what they think is fatigue AND/OR interview people who care for stroke survivors coping with fatigue (often a family member or members).

Recent research  indicates that there may potentially be a common pathway linking fatigue to everything from poor-quality sleep and physical inactivity to a bad diet. If this is correct, then a handful of potential lifestyle changes could go a long way to fighting everyday fatigue.

Nottingham University want to find out about you and your daily experiences in order potentially to help you via the outcome(s) of their study. For instance, how much you can actually do in a day without exhaustion? Has your fatigue got better/worse/stayed the same? Have you learned to ‘listen’ to your body and your reactions to activities as well as to your rest periods? Do you keep some kind of activity diary? Have you tried any drug or cognitive behavioural therapy? 

Please note: this is NOT a sample of questions you may be asked but simply informs the issue for this invitation. Please email the Study Co-ordinator, Joanne Ablewhite and her team at the address above…

Also, as noted above, the team very much need the input of carers. The research team will ask you to be as specific and thoughtful as you can within the short interview timeframe, and will most appreciate your involvement in the study.

If this is you, what do you find helps the person you care for? Have you noticed that it has become less of an issue as time has gone on? Do you, for instance, try to advise the person you care for to try and pace him/herself before, during and after any activity? What seems to work/have worked for the person? What doesn’t/hasn’t?

Again, please note that this is NOT a sample of questions you may be asked but simply informs the issue for this invitation post. Please email the Study Co-ordinator, Joanne Ablewhite and her team at the address above…

The UCL World Stroke Day Forum is a FREE annual event (26th to 30th October) which invites stroke survivors, carers and loved ones to contribute to and influence the future of stroke research and rehabilitation.

This year, the Forum will be entirely digital (Zoom-based) in response to the COVID-19 pandemic.

VISIT THE UK WORLD STROKE DAY FORUM SITE TO FIND OUT ABOUT THE EVENT ASAP AND BOOK YOUR PLACE.

There will be Live Q&As and workshops with UCL researchers and charity partners, and ‘meet and greets’, where you can informally chat to all contributors. You can also watch pre-recorded talks to hear the latest about stroke research and rehabilitation.

The event takes place over a whole week: it’s going to be superb!

The Zoom-based Forum aims to empower stroke survivors to contribute to stroke research and rehabilitation at UCL. It will host over 30 live events including Q&As, workshops and informal meet & greets with leading researchers, clinicians and charities.

Tom Balchin from ARNI will be speaking on Monday 26th and Wednesday 28th October about:

How to Approach Functional Recovery at any Stage after Stroke

Please sign up asap – limited tickets now.

Full programme is downloadable from here.

Well-being may be adversely affected following stroke. Approximately 33% report depressive symptoms and 20% report anxiety during the first months or years and general psychological distress and social isolation amongst other factors are prevalent. So, what can be done about this? If you’re a stroke survivor, how can you help yourself to regain well-being, and what exactly is it anyway? 

A study being completed by Tom Oliani as part of his doctorate in Clinical Psychology at the University of Sheffield concerns well-being after stroke.

Well-being is basically a combination of how satisfied a person is with their life, and how positive or negative they generally feel. People who have had a stroke can experience decreases in their general well-being. Evidence suggests that people in the general population who report more psychological flexibility and ‘self-compassion’, also often report an increased in well-being. However, there is not much research about whether this is the case for people who have had a stroke.

As such, Tom’s study aims to investigate if those stroke survivors who have do show higher levels of psychological flexibility and ‘self-compassion’ ALSO prove to report feeling more positive towards their circumstances and rehabilitation/recovery than those who report a lesser degree of self-compassion or psychological flexibility. And whether this traits and states change depending on how severe their stroke was and the recovery they make.

Do consider helping Tom with his study if you’ve had a stroke, or know someone who has! It won’t take a few moments…

Can I take part?

You can take part if:

• You have experienced a stroke or multiple strokes.
• You are an English speaker.
• You are over 18 years of age.
• You do not have difficulty reading or understanding words.
• You are not currently either in hospital or living as an inpatient in a residential service.

What will I have to do?

You will be asked to complete an online questionnaire about your stroke, thinking styles, and well-being. This will take 15-20 minutes.

You can find more information about the study by clicking this link: Well-being after stroke study

Then just email Tom at t.oliani@sheffield.ac.uk