A campaign has been launched to highlight the mental health impact of Huntington’s disease and the need for equitable access to support services.
Huntington’s In Mind comes in response to findings around mental health challenges of people living with the disease, and the current lack of access to suitable services.
The campaign, to coincide with Huntington’s Disease Awareness Month in May, is designed to raise awareness of the needs of people with the rare, incurable, hereditary and degenerative disorder of the brain.
Launched by the Huntington’s Disease Association, the campaign has been developed with the community and centres around the stories of three families affected by Huntington’s disease.
Their stories, told via films to be released through the month, each highlight the mental health impact and challenges in accessing mental health support, while also offering some encouraging and inspiring reflections of hope and advice.
Huntington’s in Mind – supported by HDA patron and actor George Rainsford – launches as new research identifies substantial gaps in the numbers of specialist centres being able to access mental health professionals.
Centres treating Huntington’s disease describe access to services as “inadequate”, with many centres reporting that less than 25 per cent of people living with Huntington’s disease are able to access psychologists, psychiatrists, or counselling when required.
Many services also report limited access to community mental health support, with some people living with Huntington’s disease excluded due to lack of awareness by health care professionals.
Professor Hugh Rickards, consultant neuropsychiatrist and chair of the Huntington’s Disease Association, said: “I see first-hand the challenges faced by patients, who must firstly deal with the psychological issues of their diagnosis but then the complex mental health impacts that the disease itself causes.
“This is not widely recognised or understood and at an institutional level, so we need to do more to ensure people living with Huntington’s disease and mental illness have the same access to specialist mental health services as people living with other conditions like schizophrenia.”
The multi-faceted nature of Huntington’s disease and the complex testing process means that even if not directly impacted by Huntington’s symptoms, the mental health burdens can ripple across families.
The psychological and emotional impact goes beyond diagnosis and is complicated by the aetiology of the disease itself, which impacts mental health as it progresses.
A Huntington’s disease community survey carried out last year highlighted that 69 per cent of those who are symptomatic have experienced significant problems with their mental health, with 71 per cent of carers feeling that their mental health has been severely impacted as a result of their caring responsibilities.
Furthermore, 72 per cent of family members who tested negative for the gene felt guilt or shame about relatives who do, or who may, have Huntington’s.
Cath Stanley, chief executive of Huntington’s Disease Association, said: “Many find it difficult to receive equitable access to information and specialist services leading to limited physical and mental support following diagnosis.
“We know people living with Huntington’s disease can often fall into a referral loop due to a lack of understanding of how their condition affects mental health.
“We need to do more to educate health care professionals to recognise and provide the right mental health support at the right time for people living with Huntington’s disease. That is why we are determined to raise awareness around particularly the mental health issues around living with the condition so that those affected feel they are adequately supported.
“The Huntington’s in Mind campaign marks the beginning of a longer journey to ensure equitable access to mental health services.”
Video gaming ‘can increase cognitive ability in children’
Above-average time spent on video games can lead to an increase in IQ over time, a new study reveals
Children who spend an above-average time playing video games can increase their cognitive ability, a new study has revealed.
Researchers at Karolinska Institutet in Sweden have studied how the screen habits of children correlate with how their cognitive abilities develop over time.
While they found that watching television or being on social media had neither a positive or negative effect, video gaming increased their intelligence more than average.
On average, the children spent 2.5 hours a day watching TV, half an hour on social media and one hour playing video games.
The results showed that those who played more games than the average increased their intelligence between the two measurements by approximately 2.5 IQ points more than the average. No significant effect was observed, positive or negative, of TV-watching or social media.
Over 9,000 boys and girls from the United States took part in the study, which saw them perform an array of psychological tests aged nine or ten to determine their cognitive abilities.
The children and their parents were also asked about how much time the children spent watching TV and videos, playing video games and engaging with social media.
Just over 5,000 of the children were followed up after two years, at which point they were asked to repeat the psychological tests. This enabled the researchers to study how the children’s performance on the tests varied from one testing session to the other, and to control for individual differences in the first test.
They also controlled for genetic differences that could affect intelligence and differences that could be related to the parents’ educational background and income.
“We didn’t examine the effects of screen behaviour on physical activity, sleep, wellbeing or school performance, so we can’t say anything about that,” says Torkel Klingberg, professor of cognitive neuroscience at the Department of Neuroscience, Karolinska Institutet.
“But our results support the claim that screen time generally doesn’t impair children’s cognitive abilities, and that playing video games can actually help boost intelligence. This is consistent with several experimental studies of video-game playing.”
The results are also in line with recent research showing that intelligence is not a constant, but a quality that is influenced by environmental factors.
“We’ll now be studying the effects of other environmental factors and how the cognitive effects relate to childhood brain development,” says Prof Klingberg.
GripAble praised by MP
Stephen Hammond MP hails its innovation and “extraordinary” success to date and potential
The progress of GripAble has been hailed as “extraordinary” by its local MP, who praised its innovation and ongoing progress in transforming neurorehab and wider healthcare.
GripAble, the UK technology company digitising upper limb rehabilitation from hospital to home, welcomed Stephen Hammond, MP for Wimbledon, to its international sales and distribution centre.
Mr Hammond visited GripAble’s office in Wimbledon to learn how private equity investment has helped it to scale its industry-leading data platform and therapy services and expand GripAble into Europe and the US, as well as how an international company has successfully stemmed from the local business community.
During his visit, the MP met the GripAble team and listened to a presentation by GripAble co-founder and CEO Dr Paul Rinne, who shared the background to GripAble and its growth story to date, as well as plans and ambitions for the future.
Prior to becoming an MP, Stephen Hammond worked for a leading fund management company and multiple investment banks, so was particularly interested in the funding GripAble has received to date, including the recent close of its $11m funding round.
With more than 8,000 individuals having already used the platform, GripAble has established itself as a leading technology in the remote-rehab space in the UK, recording 100,000 activity sessions and 27 million movement repetitions across its users.
Stephen Hammond MP said: “GripAble proves that innovative companies of the future that are building products that will transform healthcare can be based anywhere, but I’m particularly proud that GripAble has started out in Wimbledon.
“It’s been wonderful to see the development of the company over the last two years since first meeting Paul, and I’m sure the developments over the next three years will be equally extraordinary, particularly with the backing of private equity investment.”
Dr Rinne said: “Today’s visit was a fantastic opportunity for us to showcase GripAble’s story and vision to a Member of Parliament and explain how private equity investment can help UK-based entrepreneurs take ideas from seed stage through to global scaling, and compete on the international stage.
“The investment we have received will accelerate GripAble’s journey to delivering end-to-end patient rehabilitation and connecting millions to their own personal home-based clinic.
“With the backing of investors such as IP Group and Parkwalk, we will benefit from a wealth of insight and experience that will support us in growing our platform in the US and expanding our clinical and commercial evidence base.
“It is great to be able to work with such supportive investors that make our lives so much easier.”
Social media break ‘can improve mental health’
A one-week break can deliver improvements in wellbeing, anxiety and depression, research reveals
A week-long break from social media could lead to significant improvements in wellbeing, depression and anxiety, and could potentially be recommended as a way to help people manage their mental health.
A new study has looked at the effects of taking a break from social media, which for some participants meant sacrificing up to nine hours otherwise spent on Instagram, Facebook, Twitter and TikTok.
The results of the research, from the University of Bath, suggest that after just one week, these individuals saw their overall level of wellbeing improve, as well as reduced symptoms of depression and anxiety.
Over the past 15 years, social media has revolutionised how we communicate, underscored by the huge growth the main platforms have observed.
In the UK the number of adults using social media increased from 45 per cent in 2011 to 71 per cent in 2021. Among 16 to 44-year-olds, as many as 97 per cent of people use social media and scrolling is the most frequent online activity.
Lead researcher from Bath’s Department for Health, Dr Jeff Lambert, explains: “Scrolling social media is so ubiquitous that many of us do it almost without thinking from the moment we wake up to when we close our eyes at night.
“We know that social media usage is huge and that there are increasing concerns about its mental health effects, so with this study, we wanted to see whether simply asking people to take a week’s break could yield mental health benefits.
“Many of our participants reported positive effects from being off social media with improved mood and less anxiety overall. This suggests that even just a small break can have an impact.
“Of course, social media is a part of life and for many people, it’s an indispensable part of who they are and how they interact with others. But if you are spending hours each week scrolling and you feel it is negatively impacting you, it could be worth cutting down on your usage to see if it helps.”
For the study, the researchers randomly allocated 154 individuals aged 18 to 72 who used social media every day into either an intervention group, where they were asked to stop using all social media for one-week or a control group, where they could continue scrolling as normal.
At the beginning of the study, baseline scores for anxiety, depression and wellbeing were taken.
Participants reported spending an average of eight hours per week on social media at the start of the study.
One week later, the participants who were asked to take the one-week break had significant improvements in wellbeing, depression, and anxiety than those who continued to use social media, suggesting a short-term benefit.
Participants asked to take a one-week break reported using social media for an average of 21 minutes compared to an average of seven hours for those in the control group. Screen usage stats were provided to check that individuals had adhered to the break.
The team now want to build on the study to see whether taking a short break can help different populations, such as younger people or people with physical and mental health conditions, who research shows can experience adverse effects at different times.
The team also want to follow people up for longer than one week, to see if the benefits last over time. If so, in the future, they speculate that this could form part of the suite of clinical options used to help manage mental health.
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