Diabetes UK Calls for Public to Have its Say in Future Treatment

Leading charity Diabetes UK is appealing to people across the country to help with a new project intended to impact on the future of diabetes in Britain.

As well as holding a series of ‘Big Conversation’ events across the country, the charity is asking people to make sure they have their say by taking part in an online survey, to help them find out what really matters to people with diabetes and their families.

Bridget Turner, Director of Policy and Care Improvement for Diabetes UK, suggested that this is a critical initiative.

“This is an incredibly important piece of research. We want to really get to the heart of what matters to them by talking to the real experts – people living with diabetes. At a time when diabetes is high on everyone’s agenda, this insight will tell us about the issues that people with diabetes face in their day-to-day lives. That way we can make sure we are focusing on the things that really matter, and can use this to make changes where it really counts.”

Britain has experienced a diabetes epidemic in recent years, and this problem is only escalating.

Some 4.5 million people in the UK are living with diabetes, and 11.9 million in the UK are at risk of developing Type 2 diabetes.

The Big Conversations and the online survey will explore various areas where diabetes can have an impact – from healthcare services and medication, to how living with the condition can affect relationships and work and school life.

And the aforementioned Turner suggested that the initiative can help tackle what is an increasingly debilitating condition.

“We want to know the challenges people face and hear their ideas about what needs to change. Diabetes is a serious condition, so we need as many people as possible to share their knowledge, experience and ideas to help us tackle the diabetes crisis together by improving healthcare and preventing more people from developing Type 2 diabetes this potentially fatal condition.”

The team at Diabetes UK are conducting seven Big Conversations across the country where they will be talking to groups of people with Type 1 and Type 2 diabetes, as well as a series of focus groups later in the year.

They will compile the findings along with the results of their survey into a report that can influence decisions makers including government and health care providers to focus on the issues of most importance to people with diabetes.

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Prof Stephen Hawking to Open Cambridge Rare Disease Summit

It has been announced that Professor Stephen Hawking will open a Cambridge summit on rare diseases.

The inaugural Cambridge Rare Disease Summit, at the Cambridge Judge Business School, will take place on Monday 14th September.

Hawking will be in attendance to speak to attendees, as the lead-up to ‘Jeans for Genes Day’, annual fundraising event, continues.

The infamous professor will be just one of the keynote speakers appearing on the day.

As well as Professor Hawking, keynote speakers will include:

– Dr Matt Might, parent advocate, founder of NGLY1.org

– Dr Hermann Hauser CBE, Amadeus Capital Partners

– Alistair Kent OBE, Director of Genetic Alliance UK and founder of Rare Disease UK

Professor Hawking was, of course, diagnosed with the rare motor neuron disease at the age of 21, and told that the problem was incurable.

However, this has not diminished his interest in scientific pursuits, and Hawking has gone to live an extremely productive life, publishing some of the most significant scientific research in quantum physics in particular.

The Cambridge Rare Disease Summit will discuss how the 3.5 million other Britons who live with a rare disease can experience the same quality of life that Professor Hawking has evidently enjoyed.

Although the situation that Hawking finds himself in may seem to be extremely rare, in fact the whole concept of rare diseases are in fact far more common than one might imagine.

6,000 rare diseases have already been identified in laboratories, and this means that every British resident has a one-in-17 chance of developing a rare disease at some point during their lifetimes.

However, despite this sobering figure, advances in genetics and genomic medicine ensure that researchers and medics are now extremely well placed to diagnose, treat and even cure rare genetic disorders.

The Cambridge Summit will be a particularly prestigious and valuable event, enabling 150 key stakeholders involved in rare diseases to collaborate.

There is also a huge diversity of attendees, with delegates ranging from those working on drug development, data sharing and parent support, to biotech entrepreneurs, pharmaceutical companies and start-ups.

It is hoped that the summit will both create awareness of rare diseases, and also play a part in forming and bonding a community of active and interested stakeholders in rare disease research and development.

The network is also seeking alternative ways to fund drug discovery programs for rare diseases, often overlooked by more traditional financing due to the lack of significant financial reward in particular.

Kay Parkinson, CEO of the newly-formed Cambridge Rare Disease Network (CRDN) commented on the forthcoming event favourably.

“As parent to two children who were given a late diagnosis of the ultra rare Alström Syndrome, I think it’s crucial to foster dialogue, find solutions and increase awareness of the huge social and therapeutic unmet needs around rare diseases,” Kay stated.

Cambridge was considered a natural location for this event, owing to its existing knowledge and expertise in research and industry related to biotechnology.

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Suicide Rate in Scotland Declines in New Figures

New figures published indicate that the suicide rate in Scotland has declined significantly over the last decade.

The Scottish suicide rate reduced by 17.8 percent between the periods 2000-2004 and 2010-2014, according to statistics published by SD Scotland and National Record of Scotland.

There was also a fall over the last twelve months, with 696 people having committed suicide in 2014, compared with 795 in 2013.

It is also noteworthy that the figures were even more historically significant once the new accounting system is taken into consideration.

National Records of Scotland has recently changed the way that suicides are recorded.

Under the old system, the number of suicides in 2014 would in fact be the lowest recorded since 1977.

The decline in suicides in Scotland could be attributed to numerous measures put in place by the authorities.

It is particularly notable that this statistic is decreasing at a time of economic challenges for many people; usually an indicator of high suicide rates.

Measures taken in order to combat suicide in Scotland have included the establishment of a Scottish Suicide Information Database, extensive training in suicide awareness among NHS frontline workers, the recruitment of Choose Life Co-ordinators to the majority of Scottish local authorities, and a raft of campaigns intended to raise awareness of the issue nationally.

These initiatives collectively are part of the overall three-year Suicide Prevention Strategy that was put in place by the Scottish government in 2013.

Speaking on the issue, Jamie Hepburn, Minister for Sport, Health Improvement and Mental Health, was cautiously optimistic about the figures.

“Any suicide is a tragedy, but the reduction of 17.8 per cent represents a particularly welcome development. This would not have been possible without the dedication of the professionals who work in this often challenging field,” Hepburn stated.

“We know that suicide rates are strongly related to deprivation levels, I am pleased to see that this inequality has decreased in recent years,” Hepburn continued.

Alana Atkinson, Lead for the National Programme for Suicide Prevention at NHS Health Scotland was encouraged by “the continuing declining trend in suicides in Scotland” and particularly welcomed the fact that “the inequalities in suicide rates associated with deprivation have decreased in both absolute and relative terms for males, and in absolute terms for females.”

Further suicide statistics for Scotland can be viewed at www.isdscotland.org.

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