Criticism over NHS Down’s syndrome test availability

According to BBC new, a new screening test for Down’s syndrome is still not available across the Welsh NHS, six years after guidelines said it should be.

In 2008 the National Institute for Health and Care Excellence (NICE) said all pregnant women should be offered the ultrasound scan and blood test. But currently only patients in north Wales are offered screening. The Welsh government said introducing the test across Wales had been “challenging”.

The full story can be read here.

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New USW genetics website goes live!

The new look Telling Stories Understanding Real Life Genetics has been launched today!

The look and feel of the Telling Stories website is new, however the address will remain the same – www.tellingstories.nhs.uk – as will the layout of the website, making it easy for regular visitors to continue to use all of the existing content. Those new to the website can be guided through using the resource by clicking on the ‘how to use the stories tab’.

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USW-based Telling Stories Understanding Real Life Genetics – which is a collaborative project between the Genomics Policy Unit at USW, Plymouth University, National Genetics and Genomics Education Centre, and Genetic Alliance UK – is an award-winning genetics education resource developed to promote understanding about the impact genetics has on real life and its relevance to healthcare. The website has over 100 stories from those with, or affected by, genetic conditions. The stories are mapped to education frameworks for health professionals and are also accompanied by a story toolkit for teaching and learning about genetics.
We will be carrying out further improvements to the site and adding some new content over the coming weeks. Please contact us if you have any questions, comments or suggestions about the new Telling Stories website at tellingstories@southwales.ac.uk so we can address them straight away.

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New look genetics website coming soon!

The new look University of South Wales-based Telling Stories Understanding Real Life Genetics website is due to be launched on Monday 30th June. Whilst the appearance of the Telling Stories website has been updated, the address will remain the same – www.tellingstories.nhs.uk – as will the layout of the website, making it easy for regular visitors to continue to use all of the existing content. Those new to the website can be guided through using the resource by clicking on the ‘how to use the stories tab’.

Kaths launch logo reduced compressed for emailTelling Stories Understanding Real Life Genetics is an award-winning genetics education resource developed to promote understanding about the impact genetics has on real life and its relevance to healthcare. The website has over 100 stories from those with, or affected by, genetic conditions. The stories are mapped to education frameworks for health professionals and are also accompanied by a story toolkit for teaching and learning about genetics.

We will be carrying out further improvements to the site and adding some new content over the coming weeks. Please contact us if you have any questions, comments or suggestions about Telling Stories at: tellingstories@southwales.ac.uk

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Sigma Theta Tau International 2nd Regional European Conference, Gothenburg

This three day conference, from 16th-18th June, attracting around 180 delegates from 27 countries, focused on leadership, learning and research in nursing and midwifery. As a member of the conference planning committee, it was good to see how the two years of planning paid off with a busy programme that included a good mix of plenary and parallel sessions. Professor Hester Klopper, the new President of Sigma, opened the conference with her vision of nursing  and goals for the organisation. She emphasised the importance of nursing leadership and representation on global policy committees, asking how we can best promote nursing as an integral part of global health, rather than promoting it as something that needs to be treated differently in some way.  Dr Sawsan Majali’s plenary talk on Leadership in a global perspective drew on her role as secretary general of the Higher Population Council. Sawsan outlined the positive and negative aspects of globalisation and talked about the importance of leaders being able to demonstrate a global mindset and global skillset, underpinned by knowledge and experience gained ‘on the ground’. She echoed Prof Klopper’s concerns about the absence of nurses at the decision-making tables at international levels and presented the characteristics that global nurse leaders should demonstrate – these included being prepared to speak out and to take weighted risks.

Other plenary and keynote sessions I found particularly interesting included Professor Margret Lepp’s talk on drama in education (as a means of promoting emotional literacy to complement intellectual understanding), Professor Lesley Moore’s presentation on work based learning, and Professor Wendy Chaboyer’s keynote on Building and leading a high performing Research Centre.

It was also great to meet international members of Sigma and to experience the Swedish culture of friendliness and hospitality, efficient and cheap public transport and healthy food!

STTI at Gothenburg

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Tenovus ManVan launched to support men living with, and affected by, prostate and testicular cancer in Wales

It was great to be at the launch of the Tenovus ManVan at Cyfarthfa Castle in Merthyr Tydfil last Tuesday evening. Tenovus, in conjunction with Prostate and Men’s health charity Movember, have brought the UK’s first ManVan to the roads of Wales. The ManVan, a converted 38ft American-style motorhome, will travel to Welsh communities across the country to support men living with, and affected by, prostate and testicular cancer.
DSC_0006 compressed for email Dr Rachel Iredale (Director of Cancer Support, Tenovus; Reader, Life Sciences and Education, University of South Wales) at the ManVan launch

It will bring one to one counselling, couples’ counselling, group support and welfare rights advice to men who live in deprived or hard-to-reach areas. The ManVan will offer 80 counselling and 80 welfare advice sessions every month and visit a new community every day, bringing  vital services to where they’re needed most.

The launch event included talks from Claudia McVie, Tenovus Chief Executive, Heather Blake, Director of Services at Prostate Cancer UK, and from Tony, a gentleman affected by prostate cancer, who spoke of the importance of the ManVan in supporting men in Wales. Following wonderful performances by the Merthyr Tydfil Tenovus Sing With Us choir, making their debut at the event, and Only Men Aloud, attendees were given tours of the ManVan.

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Tenovus staff give tours of the ManVan at its launch

The ManVan has two separate spaces; one for group counselling sessions and another for one to one counselling, is fully wheelchair accessible, and has a kitchen and toilet on board. It has been transformed on the inside into a space specifically designed with men in mind. No flowers, throws or fluffy cushions on board – just sleek, clean lines, comfy chairs, men’s magazines and a nice big TV of course! This is the main area where group counselling sessions and online health checks take place.

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Some famous faces helping to celebrate the launch of the ManVan

Good luck to this exciting project and to the ManVan as it begins it’s travels throughout Wales!

To find out more about the ManVan, visit the Tenovus website or read their article on the ManVan launch and see
ITV Wales and BBC news coverage of the launch.

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Breast cancer ‘personal drugs’ hope after gene study

According to BBC news today, “personalised” treatments for breast cancer are a step closer, according to research scientists at Cardiff University.

The scientists used gene technology to compare and contrast specific genetic errors in particular types of mouse breast cells.  They were able to replicate “almost the entire spectrum” of aggressive breast cancer coming from one cell type.  It helps understanding of the disease, which has at least 10 different forms.

The full story can be found here.

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Evaluation of the British Heart Foundation Cardiac Genetics Nurses Service Development Initiative

The Executive summary of this project is available now at the National Institute for Health and Social Excellence  (NICE) website.

The GPU has undertaken an independent evaluation of an BHF initiative to enhance the care and services delivered to patients and their families with or at risk of an inherited cardiovascular condition (ICC), through funding nine BHF Cardiac Genetics Nurse (CGN) posts across England (n=8) and Wales (n=1) for a period of three years.

The project was led by Professor Maggie Kirk, the head of the GPU, working with colleagues at the Welsh Institute for Health and Social Care, the Health Economics & Policy Research Unit, and the All Wales Medical Genetics Service.

The evaluation has adopted a case study approach with. Principal data sources have come through interviews with health professionals and patient representatives, quarterly reports, and through completion of an outcomes framework of service development indicators developed by the evaluation team (the BHF CGN Maturity Matrix). The evaluation posed three core questions:

  1. What does an effective and sustainable cardiac genetics service look like?
    2. What is the most effective way for the nursing role to integrate cardiac and genetics services?
    3. To what extent are the defined features being achieved over time?
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GM crops: UK scientists call for new trials

A new report on genetically modified (GM) crops, commissioned by the prime minister, calls for more UK field trials and fewer EU restrictions. The Council for Science and Technology (CST) wants “public good” GM varieties to be grown and tested in the UK. It says GM crops should be assessed individually – like pharmaceuticals – taking potential benefits into account. A new UK regulator similar to NICE (the National Institute for Health and Care Excellence) should be set up, it says.

The UK is a world leader in plant biotechnology research, but GM field trial applications have fallen from 37 in 1995 to just one in 2012. Environment Secretary Owen Paterson has spoken in favour of increasing UK research into GM, which he said offers the “most wonderful opportunities to improve human health”. The CST was asked by Prime Minister David Cameron for the latest evidence on the risks and benefits of GM technologies in agriculture, and for advice on UK and EU regulation. In turn, it commissioned a group of leading plant scientists from Rothamsted Research, The Sainsbury Laboratory and Cambridge University to make recommendations to the prime minister. The scientists say they are being held back by strict EU regulations – based on the principle that GM crops are inherently more dangerous than conventionally-bred varieties. Only two GM varieties have been licensed for commercial harvest in Europe – despite the fact that 12% of the world’s arable land is cultivating GM crops.

The CST report argues GM crops have now been shown to be safe – and may be necessary in future for Britain to grow its own food supply, rather than depending on imports. It says the UK should regulate commercial GM varieties of wheat and potatoes based on their individual benefits and risks – rather than follow the EU’s blanket approach. It also recommends a new programme of publicly-funded field trials to test “public good” GM crop varieties, which it calls “PubGM”. “Public good” traits could include nutritional enhancement, such as antioxidants in tomatoes, or vitamin A in “Golden Rice”. They could also include “climate-proofing” properties such as drought resistance or heat resistance.

“With PubGM, seed companies, consumers and regulators will be able to decide, based on results of experiments, whether a GM trait has proved its worth in UK crops under UK conditions,” said Professor Jonathan Jones from The Sainsbury Laboratory, one of the report’s authors. Sir Mark Walport, chief scientific adviser and CST co-chair, said: “We take it for granted that because our shelves in supermarkets are heaving with food there are no problems in food security. But there are. We’re part of a global food market. Competition is likely to increase. The world is already malnourished and the population is growing. The challenge is to get more yield from the same area. GM is not a magic bullet, but it is one of a range of technologies that we should consider.”

Read the full article on the BBC science news webpages.

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Immune upgrade gives ‘HIV shielding’

BBC health news reports today that doctors have used gene therapy to upgrade the immune system of 12 patients with HIV to help shield them from the virus’s onslaught. It raises the prospect of patients no longer needing to take daily medication to control their infection. The patients’ white blood cells were taken out of the body, given HIV resistance and then injected back in. The small study, published in the New England Journal of Medicine, suggested the technique was safe.

Some people are born with a very rare mutation that protects them from HIV. It changes the structure of their T-cells, a part of the immune system, so that the virus cannot get inside and multiply. The first person to recover from HIV, Timothy Ray Brown, had his immune system wiped out during leukaemia treatment and then replaced with a bone marrow transplant from someone with the mutation. Now researchers at the University of Pennsylvania are adapting patients’ own immune systems to give them that same defence.

Millions of T-cells were taken from the blood and grown in the laboratory until the doctors had billions of cells to play with. The team then edited the DNA inside the T-cells to give them the shielding mutation. About 10 billion cells were then infused back in, although only around 20% were successfully modified. When patients were taken off their medication for four weeks, the number of unprotected T-cells still in the body fell dramatically, whereas the modified T-cells seemed to be protected and could still be found in the blood several months later. The trial was designed to test only the safety and feasibility of the method, not whether it could replace drug treatment in the long term.

Prof Bruce Levine, the director of the Clinical Cell and Vaccine Production Facility at the University of Pennsylvania, told the BBC: “This is a first – gene editing has not to date been used in a human trial [for HIV].We’ve been able to use this technology in HIV and show it is safe and feasible, so it is an evolution in the treatment of HIV from daily antiretroviral therapy. He says the aim is to develop a therapy that gets people away from expensive daily medication.

Read the full article here.

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Article on cancer genetics literacy amongst children published

Dr Rachel Iredale and Kim Madden, members of the Genomics Policy Unit at the University of South Wales, have published an article entitled Let’s talk about genes, and I don’t mean trousers: encouraging cancer genetics literacy amongst children. The article, published last week in the journal ecancer, focuses on the ‘Let’s Talk About Genes’ project, which explored whether it was feasible and acceptable to engage young children in Wales with family history as it relates specifically to cancer, so they increase their cancer genetics literacy over time and become more aware of general health issues that relate to cancer.

Children aged 12 -13 years old took part in activities and workshops on topics including awareness of cancer and genetics, the role that family history plays in cancer, healthy behaviours that are likely to reduce cancer risk, and communication of cancer genetics information to peers.

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One of the Let’s Talk About Genes project banners

One of the outputs of the project was the creation of a cancer genetics rap Let’s Talk About Genes and I Don’t Mean Trousers, which has already received over 4000 hits on YouTube.

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The Let’s Talk About Genes rap on YouTube

Read the full article here, and go to the pages of the Genomics Policy Unit to find out more about our work.

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