September 20, 2014

Mencap dismayed by lack of progress to stop avoidable deaths of people with a learning disability

Yesterday evening (18 September) the Department of Health published their one year progress report on addressing premature deaths of people with a learning disability in the health service. Mencap is seriously concerned by the unacceptable lack of progress in many areas, and is calling on the Government to commit to progressing vital changes that we know will stop people with a learning disability dying avoidably in the NHS.

Jan Tregelles, chief executive of Mencap, said:

“Today’s report shows an unacceptable lack of progress in tackling the life-threatening health inequalities people with a learning disability face in our NHS.

“1,200 people with a learning disability die every year within our NHS due to inadequate care – that is three people a day. The Confidential Inquiry into deaths of people with a learning disability set out the changes needed to stop this scandal of avoidable deaths, but there has been an unacceptable lack of progress made in implementing many of the changes needed.”

“Even on areas where welcome progress has been made, such as in setting up a national mortality review, we see that government promises have already been broken, with the mortality review now not starting work until next summer at the earliest, when March had been promised.

“Over the last decade almost 100 deaths of people with a learning disability have been reported to Mencap by families. They feel poor quality care, lack of well trained staff and indifferent attitudes are to blame for their loved one’s death.

“People with a learning disability and their families have waited too long for change. Mencap is calling for the Government to act immediately to fully implement all of the recommendations of the Confidential Inquiry and make sure measures are put in place to stop the needless deaths of people’s loved ones.”

Kirsty Jayne Pearce was just 17 years old when she died avoidably within the NHS. It took her father Chas nearly 10 years to get answers, where an Inquest finally took place and concluded serious medical failings in the care contributed to Kirsty’s death.

Kirsty’s family said:

“When our beautiful daughter Kirsty died, like us she still believed that the hospital staff would save her. They failed her and allowed her to die in pain and without dignity.

“There were a catalogue of errors and significant failings by the medical and nursing staff on the night of Kirsty’s death and for this the staff responsible should be ashamed. There is no doubt that those responsible for Kirsty during the night she died broke their duty of care towards her.

“Since she died we have been fighting for justice for Kirsty. It has been very hard to get hospital staff to accept that they have made mistakes. It breaks our hearts to remember how frightened she was during her final hospital stay.”


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September 18, 2014

UN must radically alter strategy in fight against Ebola, says world leading disease management expert

The United Nations will only be able to contain Ebola by adopting a hi-tech disease management system.

The warning, from one of the world’s leading disease management experts, comes 24 hours before a crucial meeting of the UN Security Council in New York, where national governments hope to formulate a coordinated response to the unfolding crisis in West Africa.

Sophia Salenius, who played a vital role in battling the Chinese SARS outbreak in 2003, says world leaders must use new innovaitve technologies to give doctors on the ground the best chance of saving lives.

“We now have advanced but easy-to-use technologies at our disposal to tackle diseases like Ebola.

“Medical professionals in Africa are doing an admirable job, but they have not been afforded all of the available tools to communicate between themselves, patients and the authorities.

“We have the solution to fight this outbreak, but we are not yet using it, nor are we effectively coordinating the post-treatment management effort.”

The Ebola outbreak, affecting Guinea, Liberia, Nigeria and Sierra Leone, is unprecedented in scope – with more than 4,000 cases having been reported across the region and over 2,200 deaths.

Ms. Salenius continued:

“What we are seeing in West Africa is a disaster that is only going to get worse and potential spread, unless we radically alter our strategy. A digital disease-management system can change the outlook, if implemented immediately, and save countless lives.

“The United Nations must act before it is too late.”

Since developing a disease management system during the SARS outbreak eleven years ago, Sophia Salenius has founded RegPoint, a world-leader in disease management strategies.

RegPoint has created a completely new medium through which the disease control supervisor, physician and patient can communicate, ideal for a challenge such as the emergency that continues to unfold in West Africa.

Information is delivered in a secure manner using mobile phones from doctors to members of the public, and vice versa, to allow analysis of clinical information to be conducted and to identify outbreak clusters in the different geographical areas.

It is the only solution that can identify clusters before patients arrive at a health facility.

By using the RegPoint service, West African health authorities and other professionals on the ground could easily identify the number and location of people with symptoms of Ebola. Advice and alerts can be sent to them, as well as to the healthcare administrators.

Thursday’s meeting of the 15 members of the Security Council – requested by the United States owing to the “increasingly grim situation,” is expected to hear from Secretary-General Ban Ki-moon, as well as senior UN officials dealing with the Ebola crisis.

Ambassador Samantha Power of the United States told reporters at UN Headquarters on Monday:

“The trend lines in this crisis are grave and without immediate international action we are facing the potential for a public health crisis that could claim lives on a scale far greater than current estimates and set the countries of West Africa back a generation.”

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September 11, 2014


Healthcare professionals must support patients to make decisions about their own health according to a new report on the future of supported self-management that launched in Westminster today


Today marks the launch of a new report delivering clear recommendations on the role of supported self-management in a shift towards a more sustainable healthcare system. Led by a team of experts in clinical practice, patient representation, commissioning and health policy, the AbbVie Knowledge Network (AKN) has devised a plan of action to make this a top priority for the future of clinical practice.

Delivering a sustainable healthcare system in the face of one of the most challenging financial and organisational environments the NHS has ever experienced is the key priority currently being addressed by commissioners. Long-term conditions account for 70% of NHS spend1 and with prevalence increasing together with an ageing population, self-care and self-management are fundamental to addressing these spiralling costs.

Jaqui Lyttle, Commissioning Advisor of Barking & Dagenham Clinical Commissioning Group said, “We need to empower patients through effective professional communication, coaching and education, to take an active role in managing their long-term conditions.  Offering supportive self-management programmes, which are integrated between primary and secondary care will alleviate time pressures on clinicians and create a positive experience for the patient which will lead to improved outcomes.”

The findings of the report outline clear recommendations that if implemented, could contribute to the £20bn of efficiency savings that the NHS is required to make by 2015 by addressing some of the costs related to the management of long-term conditions. The recommendations are as follows:

·       Patient experience should be the central component of any service

·       Clinicians should support patients to make decisions about their care

·       Patients need access to high-quality information about their condition

·       Funding should follow the patient

These recommendations have been developed in order to address inefficiencies in the management of healthcare resources, especially concerning long-term conditions such as Inflammatory Bowel Disease (IBD), where presentation of the condition often occurs at a young age and has the potential to cause lifelong ill health.

IBD is a long-term condition which currently affects 620,000 people in the UK alone at a cost of approximately £470 million per year.2,3 A new quality standard for IBD is due to be released by NICE this month which will set out the targets that gastroenterologists, nurses, GPs, pharmacists, surgeons, dieticians and patients, have agreed, should be achieved in order to improve the quality of care.  The submission clearly signposts the importance of high-quality patient information and specialist support, to enable informed decision making and supported self-management, as a key area for quality improvement.4

Dr Andrew Robinson, Consultant Gastroenterologist of Salford Royal Hospital said, “Enlisting and supporting patients in the management of their condition is the focus of our programme in Salford, which is already proving to be vital for delivering an improved service and optimal care for patients with Crohn’s disease and Ulcerative Colitis. The potential gains in terms of health outcomes, patient experience and cost savings across all long-term conditions, can only be delivered by taking action to make improvements in practice, which means putting patients at the centre of managing their condition.”

The AbbVie Knowledge Network will address the recommendations set out in this report at a parliamentary event, which takes place later today. Gastroenterologists, clinicians, patients, health policy makers, MPs and civil servants will highlight the gap that remains between evidence and practice with regard to supported self-management, and the practical interventions that are required to develop patient-centred practices which are critical to the sustainability of the NHS.

10 September 2014, Maidenhead, UK 


Department of Health. Report. Long-term conditions compendium of Information: 3rd edition. 2012

2 The IBD Standards Group. Standards for the Healthcare of People who have Inflammatory Bowel Disease (IBD). IBD Standards. 2013 Update

3 Molodecky N et al. Increasing incidence and prevalence of the Inflammatory Bowel Diseases with time, based on systematic review. Gastroenterology, 2012 Jan;142(1):46-54

4 The IBD Standards Group (NICE quality standard for IBD 2014). Available at: Accessed September 2014

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September 10, 2014

UK study by Benenden Health finds a nation wilfully neglecting its health

The UK public believes we are unhealthier now than at any time in the past 50 years – storing up a catalogue of future health problems, but doing little to change our fate, according to large-scale UK study from mutual healthcare provider Benenden Health.

The National Health Report 2014 is the first in what will be an annual study by Benenden, representing a major investment and commitment to monitor the health and wellbeing habits of the population against guidelines from the Government and medical profession.

The comprehensive study questioned 4000 men and women and found a nation of people severely neglecting themselves even on the most fundamental level. When asked how healthy people believe we as a nation currently are, 71% answered either ‘not very healthy’ or ‘not at all healthy’ compared to just 29% of respondents believing the public were unhealthy 50 years ago.

Painting a bleak picture of a nation in crisis, the survey results were compiled to profile the health of an average man and woman. The findings show they typically fail to follow seven out of eight basic health guidelines, leading to a population that is overweight, overtired, unfit, poorly nourished and dehydrated.

The report reveals the worrying statistic that Mr Average has a BMI of 26.2 and Mrs Average has a BMI of 25.9 – both figures indicating someone who is overweight and at increased risk of developing heart disease, stroke and type-2 diabetes. Using their BMI as a gauge, more than half the population (52.5%) is classified as either overweight or obese, with a further 6% deemed underweight; 42% of the population has a healthy BMI.

Mr Average eats just 3.3 portions of the Department of Health’s (DoH) recommended ‘five a day’, while Mrs Average consumes only slightly more (3.5) – falling well short of recent research that claims that eating seven portions of fruit and vegetables can lower the risk of death from cardiovascular disease and cancer.

Despite failing to meet the DoH recommendations, the report reveals that the public knows it should be eating ‘five a day’, butchooses not to.

When it comes to drinking fluids, the NHS signposts the public to the European Food Safety Authority recommendations, which advocates that men drink a minimum of  2 litres,and women 1.6 litres a day. The Benenden Health report shows Mr Average falls woefully short of the recommendations, drinking only 953mls a day (over a litre less than is needed to avoid dehydration), while Mrs Average drinks only 896mls a day.

Again, it is not a lack of knowledge on the subject that leads to the nation drinking too little – 51% know they should drink more.

Benenden Health’s medical director Dr John Giles said of the study findings: “At a time when modern medicine is making consistent major breakthroughs to give us longer lives and treat illnesses that even 20 years ago were fatal, the UK population appears to be doing everything in its power to make those extra years as unhealthy and miserable as possible.

“We cannot continually rely on the NHS to pick up the pieces of our below average approach to looking after ourselves: this laissez-faire approach is massively overburdening our country’s health service.”

But it doesn’t stop there. The population is also complacent about exercise and the associated health benefits with Mr Average doing less than half (73 minutes) the recommended amount of moderate intensity cardio a week than the NHS recommends. Mrs Average also fails to work up a sweat as much as is needed and only does 69 minutes a week of cardio – far short of the 150 minutes advised. Two muscle strengthening work outs a week should also form part of everyone’s keep fit regime, yet both Mr and Mrs Average fail to meet these guidelines (1.4 and 1.1 sessions respectively).

There appears to be a correlation between education and the amount of exercise people take: respondents with doctorates claimed to do 95 minutes of cardio a week, compared to those educated to GCSE/O level standards, who admitted just 63 minutes of cardio a week.

Dr Giles stressed more onus should be put on individuals to take responsibility for their wellbeing: “This year has already seen unprecedented discussion in Parliament, in the media and the corridors of our health institutions around the struggles the NHS is facing.  An ageing population and advances in medical science, alongside the surge in complex chronic illnesses, mean the NHS as it was originally conceived is becoming increasingly threatened.

 There should be a greater expectation on individuals to play their part and take better care of their health: the authoritative National Health Report 2014 proves that we are simply not taking even the most basic measures to maintain good health.”

However, there’s some small consolation for healthcare professionals in that the NHS’s campaign to stub out smoking is having an impact, with 72% of the population now classifying themselves as non-smokers.

Dr John Giles concluded: “While medical advances will undoubtedly continue to help extend our life expectancy, it is naïve to think that the nation will become healthier in the future unless we start taking a more proactive approach to our health.

“This report confirms what we, as a mutual healthcare provider, see every day: the NHS is being crippled by the current epidemic of lifestyle choices and associated diseases and non-essential procedures, which by and large could be prevented were we to adhere to simple health guidelines: eat healthily, sleep well, drink lots of fluid, exercise, avoid excessive alcohol, don’t smoke – simple steps that make a phenomenal difference.”

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September 09, 2014

Mental Health Foundation and Chief Medical Officer’s Annual Report – Employment is Good for Mental Health

The Mental Health Foundation welcomes many of the recommendations in the Chief Medical Officer’s report; Employment is Good for Mental Health.   In particular we are pleased to see a call for parity in funding for mental health and waiting time targets – this is something that the Mental Health Foundation have been strongly advocating for.  We also welcome the case for investment in mental health services for children, young and older people – these are just two of the groups that often ‘lose out’ in the system;  with completely unacceptable waiting times for help and complete lack of services in some areas .

Jenny Edwards Chief Executive of the Mental Health Foundation commented;  “Whilst we recognise the benefit of good quality work to Mental Health we are concerned about the suggestion to focus the fast tracking of care on people of working age who are at risk of falling out of work.   A health service that is free at the point of delivery should ‘fast track’ all and not discriminate in favour of those who are economically active.   We consider that there must be an investment in establishing a suite of evidence based solutions to mental ill health and support mental well being, particularly targeted where there are the greatest inequaliites.”

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