April 16, 2014


Macmillan Cancer Support responds to a new report out today by Public Health England’s National Cancer Intelligence Network (NCIN) which shows that kidney cancer survival has improved in the last 20 years1. Professor Jane Maher, Joint Chief Medical Officer at Macmillan Cancer Support, says:

 “It is great news that more people than ever are surviving kidney cancer. But it is important to remember that many cancer survivors continue to suffer consequences of their disease and its treatment such as chronic fatigue, depression and pain.

“Cancer survivors must be properly supported once their treatment stops to help their recovery and minimise the impact of their illness on their overall health. Macmillan wants every survivor to receive a cancer ‘recovery package’ – comprising of an aftercare plan, a summary of their treatment and access to Health and Wellbeing Clinics – as a standard part of aftercare.

“Whilst survival rates for kidney cancer have improved significantly in the last 20 years, sadly this is not the case for all cancers. We need to address the fact that your chances of surviving lung and pancreatic cancer in this country remain relatively low as a matter of urgency.”

1NCIN’s ‘Kidney Cancer Survival Report’ is available upon request from the Public Health England Press Office. Tel: 020 7654 8400 Email: phe-pressoffice@phe.gov.uk

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April 15, 2014

Patients as researchers – Swansea team commended for involving patients in emergency care research

Emergency admissions to hospital are expensive to the NHS and very distressing for patients and their families, with around 350,000 cases in Wales last year.   Now a Swansea University-led research team, which focuses on improving emergency care, has been commended for its work involving the public in research, winning an award from the National Institute for Health and Social Care Research.   

The team forms part of the TRUST (Thematic Research for emergency, UnScheduled and Trauma care) network, led by Professor Helen Snooks of the College of Medicine at Swansea University.  TRUST has developed considerable expertise in involving the public in research.  For example it has produced the first published guidance for involving service users in clinical trials.

The team aims to get people involved in the whole research process because they bring experience of using services as patients or carers, to complement academic and clinical expertise. This involvement is different from patients who are research participants and provide data to be included in the results of a research study.

Research into emergency care is particularly important in Wales, which has the highest proportion of older people in the UK.   Older people are the most likely to be admitted to hospital as an emergency.  Many admissions are for people with long-term chronic conditions:

•           45%                 of all hospital admissions in Wales are emergencies

•           23,000             emergency admissions (2011/12) for diabetes, heart disease

•           One-third       adults in Wales with a chronic condition –highest in UK

•           £1750              average weekly cost of a bed in hospital.

People who are involved in carrying out research get involved in the following ways:

•    Designing a research project

•    Sharing in decisions at key stages of carrying out high quality research

•    Advising on layout and clarity of research tools (eg websites,  questionnaires, interview scripts)

•    Analysing results, offering different insights compared to a researcher

•    Disseminating findings, including into outlets where key groups can see them, such as newsletters

•    Taking part in meetings as a member of the research team and speaking at conferences

People often require training and support to be able to carry out these roles, which is why the Swansea team runs a network called SUCCESS, which is a pool of people with different conditions, such as diabetes heart disease or arthritis, who use health services. SUCCESS stands for Service Users with Chronic Conditions Encouraging Sensible Solutions.

The team train members of the SUCCESS network, equipping them with the skills they need to work effectively as part of the research teams.   Between them, network members have worked on around 40 different research studies.

Comments from network members:

“We are hugely motivated with a strong desire to make things better – we are not to be ignored” 

“We’re all treated as equals – we’re not just the token older person”

Lead researcher Bridie Evans, of the College of Medicine at Swansea University, explained the benefits of involving service users in research:

“It ensures that research projects take account of the patient perspective, and that projects are as relevant to patients as possible.  It brings real experience into the research process.

The quality of the research is definitely better when service users work alongside researchers – we say that it’s better done together”

Angela Martin from NISCHR, Lead for Public Involvement and Engagement and contract manager for the TRUST network, said:

“TRUST has been an exemplar of public involvement.  They have consistently involved service users in developing and undertaking research. 

As NISCHR looks to the future, lessons learned and examples from the work of TRUST will be used to inform future developments.”



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April 13, 2014

Implementation of the working time directive has had an adverse impact on training in the UK, taskforce says

An independent task force commissioned by the government last year to review concerns about the impact of the working time directive on doctors’ learning and patient care in the UK, has reported adverse effects on training in certain specialities including surgery and acute medicine.

The working time directive was fully incorporated in the NHS in 2009 and means that trainee doctors can work for a maximum of 48 hours a week across a six month period.

Although the directive has helped to prevent doctors from working very long hours, the taskforce reported that in certain specialities doctors voluntarily worked longer hours to gain the skills they needed.

Of the several recommendations made by the taskforce one is that more consideration should be given to encourage wider use of the right of individual doctors to opt out of the current restricted hours.

Norman William, president of the Royal College of Surgeons and chair of the taskforce, said that it was important to understand that the directive affected different specialities in different ways. He said, ” The inflexibility of the directive is having deleterious effects on training and patient care in some specialities on the wards.”




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April 10, 2014

Bliss launches review of 2013

In the UK 80,000 babies are born too soon too small and too sick each year. For over 35 years Bliss has been the leading charity, providing information, advice and support to families with babies in neonatal care.

The review of 2013 video features some of the charity’s highlights and successes of the year as well as looking forward to what Bliss is aiming to achieve in the years to come.

After the launch of the Bliss Nurses programme in 2011, the video highlights how this has and continues to make an impact to families across the UK. Bliss Nurses are now present in four neonatal networks, with the aim of having a Bliss Nurse in all 28 neonatal networks by 2020.  Bliss Nurses provide parents with practical advice, emotional support and guidance to help them come to terms with the situation and to make well-informed decisions for their child. They play a pivotal role in the involvement of parents in their child’s daily care, which is highly likely to positively affect the long-term health outcomes of that child.

The Bliss Baby Charter was designed to ensure the rights of every baby are respected, and gives staff an opportunity to measure themselves up against the best practice across different aspects of neonatal care.  The Bliss Baby Charter launched has helped neonatal units across the country to ensure that they provide the highest quality care, with over half of units taking part. Helping units to empower parents, to feel that alongside their baby’s healthcare providers they too have a central role in their baby’s care: over 40,000 families have received better care thanks to the Bliss Baby Charter.

You can view Bliss’ annual review video here: www.bliss.org.uk/2013review

To find out more about how you can get involved with Bliss to improve neonatal care through the Bliss Baby Charter at bliss.org.uk/improving-care/babycharter

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April 01, 2014

Hearing Aids Get Smart

Hearing aids – clumpy, awkward-fitting devices that make their owners stand out from the crowd in all the wrong ways, right? Well, not any more. Unless you know someone who is hearing impaired and wears an aid – and chances are you might, with around 48 million US citizens suffering with some kind of hearing loss – the technology surrounding devices may have totally passed you by.

There have been some impressive advances, and especially so in the last ten years. For example, hearing aids have been developed with wireless processing connectivity. This means, when the aids are worn as a pair, they can communicate with each other and make decisions on what the user should hear depending on the listening environment. Not only that, when using a streaming device, the aids can link wirelessly to TVs, mobile and landline phones, and other Bluetooth enabled devices.

Manufacturers have recently developed components for digital hearing aids, which mean they can make the whole hearing aid smaller, and the device can almost be completely hidden – virtually invisible.

Invisible hearing aids: who could have imagined that? It’s a far cry from ear trumpets, which were commonly used in the 18th Century. Technology has enabled aids to evolve over time, and the changes have been remarkable. Click through the infographic to see how the hearing aid has been dramatically improved and upgraded…

Click here to view hearing aids through the ages:


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