Charcot-Marie-Tooth awareness film launches

For the first time in the UK, a short-film has been launched to raise awareness of the world’s most common inherited neurological condition Charcot-Marie-Tooth (CMT).

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Launched at Westminster, it aims to spread the word about the condition all over the UK because so few people have heard of it, including many health and social care professionals.

The film has been backed by CMT expert and President of the Association of British Neurologists, Professor Mary Reilly and charity CMT UK, which supports people with CMT, a condition with a wide variety of symptoms including uncontrollable pain, chronic fatigue, unstable ankles, balance problems and falls.

It is estimated that around 23,000 people in the UK have CMT, but the vast majority may not be aware they have it and instead will be dealing with the condition, in the dark, on their own.

The one minute film – the idea for which came from Douglas Sager (67) who found out he had CMT in 2011 – features people of various ages and at different stages of the condition including Harvey Rogers (10) who has minor nerve damage, his mother Lisa Rogers who has difficulty walking and Emma Lines who is now in a wheelchair and struggles to open a can of drink due to poor co-ordination in her hands. It is interspersed with X-ray style animation so that each person is shown as a digital body of nerves, revealing what can happen when they malfunction.

Commenting on the film, Douglas said:  “I was dancing two or three times a week so was shocked to get diagnosed much later life; while this took a few months of referrals, I see this as quite fortunate as it can take some people years to find out they have CMT.

“I decided to retire and follow my passion for film making in order to spread awareness of this condition, so people who have it can get diagnosed earlier and receive the support they need. Charities like CMT can offer advice on how to manage the condition as well as support with benefits, jobs and family issues. It is important people know what they have so they can seek both medical and emotional support.”

While CMT is currently incurable, early, accurate diagnosis can improve the lives of those with the condition as it can be managed more effectively and proper genetic counselling can be received so the risks to the next generation can be learned.

Charcot-Marie-Tooth is named after the three scientists who discovered it. Steadily progressive, it causes muscle weakness in the lower legs and hands, leading to problems like hammer toes, restricted mobility, uncontrollable pain and carrying out tasks needing fine motor skills, such as fastening shoe laces. However, people with CMT have a reasonable quality of life with normal life expectancy.

CMT UK’s chief operating officer, Karen Butcher said: “Douglas fundraised for this film off his own back and we are delighted with the end result, which is compelling, human and informative. There is so much to tell people about CMT but this captures the bones of it well.

“If people know they have the condition, we can support them by answering the many questions they will have, put them in touch with other people and families with CMT and tell them where they can get practical support and advice. We would also encourage them to visit their GP and receive medical attention.”

The CMT awareness campaign is being backed by medical professionals including leading neurological expert, Professor Mary Reilly.

Professor Reilly explains: “CMT has many different characteristics, but commonly there is a loss of muscle and touch sensation, predominantly in the feet and legs, but also in the hands and arms in the advanced stages of disease. These lead to a range of orthopaedic complications, leading to a variety of mobility and dexterity problems, and sometimes scoliosis.

“CMT does not describe a single disorder, but a group of conditions. It is important to determine exactly what kind of CMT someone has, in order to improve their quality of life and this can only be done once a diagnosis is considered in a patient. Anecdotal evidence from CMT UK tells us this takes much longer than we would like and many people put up with CMT for a long time thinking they are clumsy or have funny feet, suffering in silence when they could be receiving help and support.”

The film was written, produced and directed by award winning film maker and director, Tim Partridge and also has the backing of Shadow Foreign Minister, Catherine West MP.

Catherine said: “I first met Douglas when he came to my constituency surgery and told me about Charcot-Marie-Tooth disease, its problems and lack of awareness about it. It was wonderful to launch the film in Parliament and I hope that it will lead to greater awareness of the cause and symptoms not only in the UK but throughout the world”.

To donate visit www.justgiving.com/CMT

To find out more visit www.cmt.org.uk or contact 0800 6526316.

Great fun at camexpo

camexpo 2016

We had great fun at camexpo last weekend. Held at Olympia exhibition centre, and attracting around 5,000 attendees, there was a diverse mixture of people both attending and exhibiting over the two day show.

The FHT was the official sponsor of the Keynote Theatre, helping to promote our organisation and members, while providing the latest research, trends and events and we had some great feedback from everyone who listened in.

It was great to see so many current members pop along and say hi, and put some faces to names. We also really enjoyed chatting to people looking for FHT membership or just in general about the therapy industry.

We hope that everyone who attended enjoyed it as much as we did!

Don’t forget to find out more information at http://www.fht.org.uk

 

Addressing psychosocial health issues in obese adolescents could be crucial

Tackling issues such as low self-esteem, depression, anxiety and poor social relationships could be key when dealing with severe adolescent obesity, Leeds Beckett University research suggests.

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The prevalence of childhood obesity – and more specifically, severe obesity – has increased rapidly throughout the last three decades in the UK. With an estimated 2.9% of girls and 3.9% of boys suffering with severe obesity, leading to potential cardiovascular disease, type 2 diabetes and other health conditions, SHINE – an established Tier 3 weight management programme based in Sheffield – has partnered with Leeds Beckett researcher James Nobles to assess the effectiveness of their work. Tier 3 refers to programmes delivered by specialist providers and targeted at children with more complex, severe obesity.

James, who led the research, found that SHINE’s psychosocial intervention (PSI) method, which uniquely addresses emotional issues which may impede weight loss, had proved successful when working with 10-17-year-olds. The study has been published in the latest edition of the Journal of Adolescent Health. The evaluation showed that PSIs may be able to assist young people in the management of severe obesity and possibly to a greater extent than other community-based weight management programmes.

He said: “In light of the recent UK Governments’ Childhood Obesity Plan, we have evidence here to suggest that weight management programmes – when delivered effectively, and in the right setting – can really help young people with obesity. We have an estimated 4.5 million children with overweight or obesity here in the UK, and the current government plan offers little direct help for those in need.

“Our role has been to retrospectively evaluate participants attending SHINE between 2011 and 2016. We had the data from 435 young people, most of whom had clinical obesity and/or associated co-morbidities. SHINE collects their BMI and waist circumference at the beginning of the programme and then again at the three, six, nine and 12 month mark. Psychosocial measures including anxiety, depression and self-esteem were collected at the start as well. In addition participant retention was assessed.

“We found that SHINE appeared to be effective in the real-world setting: 95% of the young people were retained at three months, and had an average BMI reduction of 1.33kg/m2 – the equivalent to a 4% change. We noted that anxiety, depression and self-esteem had improved by 50%, 54% and 38% respectively also. These promising results continued to 12 months, with average BMI reductions of 2.41kg/m2 at that time point – a 7% difference. Putting that into perspective, adult weight management services would aim for a 5% reduction in 12 weeks, 10% after 1 year – weight maintenance and slight weight loss is usually only advocated for young people.”

SHINE Managing Director Kath Sharman, added: “Factors shown to influence obesity include low levels of physical activity, sedentary lifestyles and poor dietary behaviours. However, we know that psychosocial factors, such as low self-esteem, depression, anxiety and poor social relationships, often present as underlying causes and attributes of severe obesity

“The SHINE PSI demonstrated positive mean reductions in all measurements across all time points. In contrast to other community-based weight management services, these results suggest that PSIs may be effective in the treatment of severe adolescent obesity, and that further consideration of these interventions is needed.

“Evidence relating to the evaluation of adolescent weight management programmes (WMP) is limited, particularly when assessing those implemented within the UK. The National Institute for Health and Care Excellence (NICE) recommends that WMPs focus predominantly on dietary improvement, promotion of physical activity, and behaviour modification. SHINE, while acknowledging the NICE guidelines, goes further to recognise the psychosocial aspects of obesity. A large proportion of the SHINE PSI focuses on developing social relationships, providing techniques for stress management, overcoming bullying, and improving self-esteem. As such, SHINE may be viewed to offer a more holistic approach to weight management than traditional programmes.”

Kath and James have worked on a number of additional projects related to SHINE, and this is the most recent paper in a series of three. Their other papers explored the use of a stepped-care approach when treating severe obesity, and also gave a commentary around the current Tier 3 service provision.

World Alzheimer’s day 2016

Today is World Alzheimer’s Day, an international campaign to raises awareness and champion the rights of people with dementia.

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As many as 46.8 million people are currently living with dementia, according to the latest figures from the Alzheimer’s Society. This number is expected to treble by 2050, growing with the aging population.

Dementia is a syndrome, a set of symptoms, that is often associated with problems in memory, understanding, thinking, language and judgement. These symptoms are progressive, so get worse over time.

Alzheimer’s disease is the most common cause of dementia, affecting more than 500,000 people in the UK last year. The disease is associated with ‘plaques’ and ‘tangles’ that develop in the brain, killing brain cells.

Today many people have took to social media to share their own experiences and stories about loved ones affected by dementia.

Click here to read an article on massage and dementia, featured in issue 97 of International Therapist. In this article, 2012 FHT Excellence in Practice award winner, Nicolle Mitchell, MFHT, explains how a combination of time, touch and appropriate communication can improve the well-being of those affected by dementia.

 

European women living longer and healthier lives

The World Health Organisation (WHO) has recently published a report on women’s health and well-being in Europe.

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The report reveals that women in Europe are living longer and healthier lives, with significant progress made in ‘gender equality and other social, economic and environmental determinants of women’s health and well-being.’

However, Zsuzsanna Jakab, WHO Regional Director for Europe, warns:

‘As with all generalities, it masks highs and lows. Some women are ahead of the game, while others are falling behind. Large health inequalities among women remain within and between countries in Europe.’

‘Certain groups of women within countries continuing to be more more exposed and vulnerable to ill health have lower well-being scores.’

Contributing factors to low well-being include gender inequalities, stereotyping and discrimination. High levels of depression and anxiety among adolescent girls in Europe and gender-based violence are major concerns across all countries.

With the concept of well-being becoming more and more important to society in general, the report looks at trends and risk factors and sets a framework for moving forward.

Read the full report