While trying to adapt to the many challenges of lockdown and ensure its support for people continued, Neuro Drop In was dealt the blow of having to move out of its premises. Founder Sharon Jackson explains how, despite the ongoing social restrictions, the Lancaster-based group have pulled even more tightly together to get through its unprecedented situation.
“Next year will mark the 21st anniversary of me being diagnosed with Multiple Sclerosis (MS). It was a massive shock as I had a career and a family, I wasn’t ready to be disabled. I’m 62 now and have learnt to deal with it while still being able to live my life, but I know what a devastating thing it is to be given this diagnosis and the impact it can have on you and your loved ones.
That was a big part of why, in 2011, I founded Neuro Drop In. I didn’t want it to just be for people who had MS, I believed that if someone had a brain-related condition or injury, then we’re all in it together. I wanted us all to be able to come together, there’s no point keeping us apart in separate groups, we can all help each other. It’s a group for people with neuro conditions, run by people with neuro conditions.
Our charity is for patients and their families, who come from right across the Lancaster and Morecambe area – the family part is very important, as I know first-hand the impact an injury or condition can have on those closest to you. We’ve established strong links with the NHS, who regularly direct people to us from GPs and the stroke wards at our local hospitals – we’ve worked hard to win their trust and have a close relationship now.
We’ve been in the same building since 2013, in Lancaster Farms, and we’ve held many fantastic sessions there over the years. We have everything from art therapy to exercise to music, and at one time we even operated our own catering company which provided food to visitors to the nearby prison. It was a fantastic opportunity for us, and particularly for our members, who were so invested in building our little not-for-profit operation and it gave all kinds of chances for people to get involved and build their skills and confidence. My strong belief is that there’s nothing I can’t do, and I’m always looking for new things to add to what we offer here at Neuro Drop In.
When lockdown came, that was undeniably a huge challenge, but staying true to our ‘can do’ attitude, we were determined we would continue in every way we could. Many of our groups, all run by volunteers, were taken online – we had a choir, a music quiz, chat cafe, mindfulness sessions, and a dance and exercise class, so our members had plenty of things to get involved in, if they wished.
During the period, our volunteers have also delivered over 600 wellbeing packs to our families’ homes – we provide the coffee or tea for a nice relaxing break, alongside something like a mindful colouring book to give a bit of stimulation and creativity, or sometimes an afternoon tea. People’s mental health is suffering in general, but for those with brain injuries and chronic conditions, that is so much worse, and for those who have to shield it can be a dreadful time. So we wanted to do all we could just to give a little boost.
We are building our virtual means even further and are just about to resume our neurophysiotherapy classes via a live Zoom session, as we see that as a really important way to engage people. That will definitely continue.
While restrictions have been lifted a little – although who knows what is to come next – we would have been looking forward to returning to Lancaster Farms to begin to start holding sessions, but sadly during lockdown, we lost our building. It was mooted earlier this year that the landlord might need the building back but at some point in the future, but when the pandemic hit and everyone’s plans went out of the window, we thought that may have too, or at least have been delayed. But instead, we were given 10 days’ notice to leave by the beginning of August.
We have no means of income as all of our events for the year have been cancelled, so we are in a difficult situation. We’re very resilient and every one of our members will have been through bigger challenges than this, but this was nevertheless very challenging. Our support for those who need it will always be the main thing, and we are determined we’ll continue to do that however we can. We have found a venue to hold coffee mornings in, which has been a real lifeline to some people who have had to shield and haven’t seen anyone socially for months, and that has been really important, but the search for a permanent home for Neuro Drop In continues.
We have found some small office space so we can at least get on with some of the logistics, and a local company has very kindly given us some of their storage space for free, as finding a place for all of our equipment without a base to move in to was a big difficulty we faced.
Our focus now is on adapting and changing, and keeping on looking to the future. Sadly, people will continue to be diagnosed with neurological conditions and sustain brain injuries, so there will always be a need for Neuro Drop In. We’ll keep on looking for a new building to call our home – but in the meanwhile, we’ll keep going and making sure we support those who need us in every way we can.”
Smoking linked to stroke in new study
Adults who smoke, or are genetically predisposed to smoking behaviours, are more likely to experience a subarachnoid haemorrhage (SAH), new research has revealed.
The study found that while smokers are at a higher risk of SAH, that rises to over 60 per cent among those with genetic variants that predispose them to smoking.
The research, published in Stroke, a journal of the American Stroke Association, establishes a link between smoking and the risk of SAH for the first time.
While it has been proven in other types of stroke, this is pioneering research in its link with SAH – a type of stroke that occurs when a blood vessel on the surface of the brain ruptures and bleeds into the space between the brain and the skull.
Results of the study show:
- the relationship between smoking and SAH risk appeared to be linear, with those who smoked half a pack to 20 packs of cigarettes a year having a 27% increased risk;
- heavier smokers, those who smoked more than 40 packs of cigarettes a year, were nearly three times more at risk for SAH than those who did not smoke; and,
- people who were genetically predisposed to smoking behaviours were at a 63% greater risk for SAH.
Researchers also stated that while their findings suggest a more pronounced and harmful effect of smoking in women and adults with high blood pressure, they believe larger studies are needed to confirm these results.
“Previous studies have shown that smoking is associated with higher risks of SAH, yet it has been unclear if smoking or another confounding condition such as high blood pressure was a cause of the stroke,” says senior study author Guido Falcone, assistant professor of neurology at Yale School of Medicine.
“A definitive, causal relationship between smoking and the risk of SAH has not been previously established as it has been with other types of stroke.”
During the study, researchers analysed the genetic data of 408,609 people from the UK Biobank, aged 40 to 69 at time of recruitment (2006-2010).
Incidence of SAH was collected throughout the study, with a total of 904 SAHs occurring by the end of the study.
Researchers developed a genetic risk scoring system that included genetic markers associated with risk of smoking and tracked smoking behaviour data, which was collected at the time each participant was recruited.
“Our results provide justification for future studies to focus on evaluating whether information on genetic variants leading to smoking can be used to better identify people at high risk of having one of these types of brain haemorrhages,” said lead study author Julian N. Acosta, neurologist, postdoctoral research fellow at the Yale School of Medicine.
“These targeted populations might benefit from aggressive diagnostic interventions that could lead to early identification of the aneurysms that cause this serious type of bleeding stroke.”
New campaign to reduce stroke risk launched on Stroke Prevention Day
A 12-week campaign is being launched today – Stroke Prevention Day – to help raise awareness of how the risk of stroke can be reduced.
The campaign encourages people to make one small positive change to their lifestyle to reduce the possibility of stroke, which is the fourth highest cause of death in the UK.
According to the Stroke Association UK, 89 per cent – almost 9 in 10 – strokes are associated with modifiable risk factors in the Western countries, including lifestyle elements that can be changed to reduce risk, such as weight, diet and blood pressure.
New research commissioned by the charity, which is leading the campaign, has also revealed:
- Only 1 in 20 (6%) UK adults think they’re at high risk of a stroke, despite the fact that the global lifetime risk of stroke from the age of 25 years onward was approximately 25% among both men and women
- Almost half (47%) of the country don’t know that high blood pressure is a top risk factor for stroke
- 3 in 4 people (73%) said that they have had no information about stroke reduction recently, which rises to over 4 in 5 (85%) of over-65s, who are most at risk of having a stroke.
Blood pressure is the biggest cause of stroke, with 55 per cent of stroke patients having hypertension when they experience their stroke. Further, around 1 in 4 adults from 55 years of age will develop AFib.
“While these numbers are concerning, they also demonstrate that with increased awareness, we can all take simple steps to reduce our risk,” says Charlie Fox, sales director of OMRON Healthcare, who are supporting the Stroke Association campaign alongside Patients Know Best.
“As an incredibly important risk factor for stroke, having a healthy heart should be a top priority and remain front of mind.”
AFib can be asymptomatic and may not be present during a medical appointment as episodes can be occasional, which means it is often left undiagnosed.
But given its seriousness, those who may be at risk should routinely record electrocardiogram (ECG) measurements, according to current medical guidelines.
Through doing so at home will enable patients to become more in control of their health, with OMRON being one of the companies developing the technology to support them in doing so.
“The public wants and needs to be more in control of its health, which is why we create products and services that are suitable for use at home as part of our Going for Zero strokes pledge,” adds Fox.
“OMRON Complete, for example, is an upcoming, clinically validated home blood pressure monitor with a built-in ECG which can help detect AFib which we’re excited to launch in the coming months.
“It is our hope that through this awareness programme and by equipping the public with the tools it needs, we can make having an empowered and informed lifestyle the new normal.”
People with a Patients Know Best (PKB) Personal Health Record can also log readings to get a more complete picture of their health journey. This allows them to look back with ease and share readings with clinical teams and caregivers in a safe, secure and meaningful way.
Fox concludes: “Your blood pressure provides important health insights. Monitoring it regularly alongside your ECG readings empowers you with knowledge, helps you act sooner, and can even save your life”.
More information about the campaign and how you can make your one small change can be found here: www.stroke.org.uk/
What are the IDDSI Levels and why do they matter?
Dysphagia, more commonly known as swallowing difficulties, can be prevalent amongst those in neuro rehabilitation. For those in recovery, understanding how their swallowing has been affected, what solutions are available and which nutritional, delicious and above all, safe, meals they should be eating, is of paramount importance.
When someone starts to experience dysphagia, they are most commonly seen by a speech and language therapist (SLT) and a dietitian. Together, they will create a plan for the management of dysphagia. A speech and language therapist will explain in detail the importance of texture modified food and drinks and will work with you to carefully understand the right texture modification for you.
What is IDDSI?
This is where IDDSI can help you understand your recommended texture modified diet in more detail. IDDSI stands for International Dysphagia Diet Standardisation Initiative. This is a committee that have developed a framework of 8 levels which provide common terminology to describe food textures and the thickness of liquids for those living with dysphagia.
The purpose of IDDSI is to create standardised terminology and descriptors for texture modified foods and liquids that can be applied and understood globally – across all cultures and age spans.
Before the introduction of IDDSI, there were national descriptors in the UK which were formed by opinion rather than international standards. Having different terminology, categories and definitions in different countries caused some instances of food being of incorrect consistency. The IDDSI framework was fully adopted by food manufacturers and healthcare settings in the UK in March 2019.
The framework consists of levels for both drinks (liquids) and foods, some of which overlap as you can see in the image above. Here is a breakdown of each category in the IDDSI FOODS framework.
Level 3 – Liquidised/Moderately Thick
- Can be drunk from a cup
- Does not retain its shape
- Can be eaten with a spoon, not a fork
- Smooth texture with no ‘bits’
Level 4 – Pureed/Extremely Thick
- Usually eaten with a spoon (a fork is possible)
- Does not flow easily
- Does not require chewing
- Retains its shape
- No lumps
- Not a sticky consistency
Level 5 – Minced
- Can be eaten with either a fork or a spoon
- Can be scooped and shaped
- Small lumps are visible, but are easy to squash with tongue
- Biting is not required
- Minimal chewing required
Level 6 – Soft & Bite-Sized
- Can be eaten with fork or spoon
- Can be mashed/broken down with pressure
- Chewing is required before swallowing
How can I check my meals are made to IDDSI standards?
You can check to see whether your food is compliant with the IDDSI Framework by watching these IDDSI Food Test videos.
To discover a Softer Foods range which is IDDSI compliant and created with your patients’ needs in mind, register here for the opportunity to try some complimentary meals from Wiltshire Farm Foods.
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