NIHR showcases the clinical research that could bring hope to the nation’s dementia sufferers

To mark the start of World Alzheimer’s Month, the National Institute for Health Research (NIHR) is showcasing some of the cutting-edge clinical research that could bring new hope to dementia patients and their families.

Launched in 2006 by the Department of Health, the National Institute for Health Research invests in all aspects of clinical research across England, so that patients have the opportunity to take part in suitable studies, and evidence can be gathered to keep improving treatments for NHS patients.

Over the past two years, the National Institute for Health Research has put millions of pounds of extra investment into supporting clinical research into dementia, which affects 800,000 people in the UK – a figure that is expected to rise to one million people by 2021.

Now, as part of World Alzheimer’s Month, the National Institute for Health Research has launched www.FocusOnDementia.nihr.ac.uk Aimed at the general public, the online showcase highlights some of the pioneering work supported by the NIHR, which could lead to better treatments for dementia sufferers, and improvements in the quality of life for those with the condition.

For example, the showcase reveals how, with support from the NIHR, researchers in Cambridge are investigating new gene therapy for Parkinson’s disease, to help patients to gain better control over the slow, stiff movement that is a feature of the disease.

The showcase also features the work of researchers in London, who are using NIHR investment to investigate how tele-care and other home support can help dementia sufferers to stay independent and live in their own homes for longer.

Visitors to the showcase site can also read how the NIHR is also supporting research into a “magic bullet”, to help “repair” the brain, and prevent people with Parkinson’s disease developing dementia.

Speaking about the launch of the online showcase, Dr Jonathan Sheffield from the NIHR said:

“The number of dementia and neurodegenerative disease studies we have delivered in the NHS has increased by 40 per cent over the last two years, and this is a growing area of clinical research. So, with World Alzheimer’s Month about to start, we wanted to take this opportunity to give people an insight into the trailblazing work that is going on behind the scenes to tackle this major problem for our society.”

The National Institute for Health Research’s showcase, www.FocusOnDementia.nihr.ac.uk , includes case studies and interviews with leading researchers, patient views on living with dementia, and advice on finding out about current clinical trials.

For further press information, or to arrange interviews, please contact:

Leicia Feare, Leicia.feare@nihr.ac.uk, 0113 343 0321

Tracy Gregg, Tracy.gregg@nihr.ac.uk, 0113 343 6570

Notes to editors: About the NIHR

The National Institute for Health Research (NIHR) is funded by the Department of Health to improve the health and wealth of the nation through research.

Since its establishment in April 2006, the NIHR has transformed research in the NHS. It has:

  • Increased the volume of applied health research for the benefit of patients and the public
  • driven faster translation of basic science discoveries into tangible benefits for patients and the economy
  • developed and supported the people who conduct and contribute to applied health research.

The NIHR plays a key role in the Government’s strategy for economic growth, attracting investment by the life-sciences industries through its world-class infrastructure for health research.

Together, the NIHR people, programmes, centres of excellence and systems represent the most integrated health research system in the world.

For further information, visit the NIHR website www.nihr.ac.uk

Facts about dementia
Source: www.alzheimers.org.uk

  • Dementia describes different brain disorders that trigger a loss of brain function. These conditions are all usually progressive and eventually severe
  • Alzheimer’s disease is the most common type of dementia, affecting 62 per cent of those diagnosed
  • Symptoms of dementia include memory loss, confusion and problems with speech and understanding. Dementia is a terminal condition
  • There are 800,000 people with dementia in the UK with numbers set to rise to over 1 million by 2021. This will soar to 1.7 million by 2050
  • One in three people over 65 will die with dementia
  • Dementia costs the UK over £23 billion a year, and this figure will rise to £27 billion per annum by 2018
  • There is no cure for Alzheimer’s disease or any other type of dementia. Delaying the onset of dementia by five years would halve the number of deaths from the condition, saving 30,000 lives a year.

Innovative new collar to end MND patients’ neck distress

A revolutionary new device to replace ‘hated’ neck support collars for Motor Neurone Disease (MND) patients has been developed.

Imagine being unable to support your own head, unable to speak properly or eat without assistance. That is the reality for patients with MND; enabling the continuation of the most basic aspects of living such as being able to maintain eye contact with other people can dramatically improve quality of life.

Moya Briggs, 67, who was diagnosed with the less aggressive form of MND four years ago, chose to take part in a unique patient-led project, called ‘Head-Up’ to create a more suitable collar for patients with MND.

Moya said: “I hate the current collar I have to wear, absolutely hate it. When I’m wearing it I feel like an Egyptian mummy, all choked around my neck. For it to give me enough support I’ve got to have it really tight and when it’s tight I feel like I’m choking in it. It makes me feel as if I’m only partly communicating with the world.

“I hate the look of my current collar too and I cover it with a scarf. The fact that this new collar is inconspicuous and comfortable will make all the difference.”

The award-winning ‘Head-Up’ project is funded by the National Institute for Health Research (NIHR) Invention for Innovation (i4i) Programme. It is a collaboration between Sheffield Teaching Hospitals NHS Foundation Trust, Barnsley Hospital NHS Foundation Trust, the University of Sheffield and Sheffield Hallam University. The team was brought together and provided with early funding by the NIHR Devices for Dignity Healthcare Technology Co-operative (D4D HTC).

The collar came from a complete rethinking of existing collars as it sits low on the patient’s neck and offers support along the contours of the neck muscles, making it much easier for patients to carry out everyday tasks such as eating and communicating. The new collar will be undergoing a comprehensive evaluation later this year.

The involvement of patients and the public in research has been strongly promoted by NIHR, and is at the heart of D4D’s culture. Moya and other MND patients have played an extensive part in the design workshops for the new collar.

She said: “The whole device is very inconspicuous and provides so much more support. The snood itself feels like a second skin. It was wonderful for me because the muscles at the back of my neck usually feel the strain but I could instantly feel the relief in my neck.”

“I think it’s going to be a great relief to a lot of people. Every time I go out I will be wearing it and I need it for when I’m on the computer or if I’ve got to sit at the table or do anything for a long period of time.”

D4D, which is hosted by Sheffield Teaching Hospital NHS Foundation Trust, brought together an extensive multidisciplinary team including designers and engineers from Sheffield Hallam University’s Lab4Living, clinicians, clinical neurologists, MND nurse specialists, occupational therapists, physiotherapists and medical engineering experts from the University of Sheffield, Sheffield Teaching Hospitals and Barnsley Hospital.

This group was supported by MND patients and carers through the Motor Neurone Disease Association. D4D is also leading the regulatory compliance, evaluation and commercialisation work to put the collar as quickly and effectively as possible into the hands of patients.

Moya said: “I think the role that initiatives such as the NIHR D4D HTC play is very important. They can add an extra dimension – bringing forward products which integrate modern materials and help make people feel more part of the community and less obviously disabled.”

The project was led by Dr Christopher McDermott, who is a Consultant Neurologist and a Co-Director at the Sheffield MND care centre and also supported by the Motor Neurone Disease Association (MNDA).

Sheffield Hallam design hits health note at European conference

Clinicians, patients, academics and designers from across Europe have convened at Sheffield Hallam University to highlight the crucial role design plays in healthcare innovation.

Design4Health 2013, a week-long series of events hosted by Sheffield Hallam’s Lab4Living created a forum to discuss and develop designs and ideas to improve patient care.


The week began with a high-pressure 24-hour design challenge, which pitted teams against each other to create a device or intervention which would assist in the transition of one of the case conditions, Motor Neurone Disease (MND) and Cystic Fibrosis (CF).

Within each of the four competing teams was someone living with or caring for someone with the case condition, working alongside two clinicians and a team of designers.

Ten countries were represented by the designers: South Korea, Portugal, Italy, France, Mexico, Poland, Argentina, Japan, Denmark and the UK.
The teams created prototypes with 3D printers and presented their concepts before a panel of judges from key healthcare organisations and charities, with two teams sharing an award for best concept.

Lab4Living is now working with the teams to take these concepts forward and seek funding for development.

The week also signalled the start of a major new exhibition featuring different health innovations including a suit made of mohair wool designed to react to individual body temperatures and an exhibit entitled ‘Head-Up’, which displayed a series of neck collars to assist patients with MND and neck muscle weakness.

The main conference was attended by more than 100 delegates from 19 different countries.

David Pao, Clinical Lecturer and HIV Physician, Centre for Behavioural Medicine, UCL School of Pharmacy, who attended the conference and exhibition, said: “‘When I initially walked into the exhibition, I thought I had entered an art gallery. But as I spent time and looked more closely, I began to see real attention to detail, quality and a considered depth to the issues the exhibits were focusing on.

“The conference was the most uplifting, friendly and welcoming I have ever been to. At the same time, the presentations demonstrated the tangible value of the collaboration between design and health, and the potential to learn from each other, working and moving forward together.”

The conference organiser, Lab4Living, is an interdisciplinary research initiative, based at Sheffield Hallam’s Art and Design Research Centre which develops environments, products and creative strategies for future living in which people of all ages and abilities ‘not merely survive’ but are enabled and empowered to live with dignity, independence and fulfilment.

Joe Langley, Senior Research Fellow at Sheffield Hallam’s Lab4Living, said: “This year’s conference was a great platform for different groups of people to see the diverse range of content, methods and disciplines which exist when creating healthcare innovations.

“The exhibition provided a real, tangible focal point for many of the debates in the conference, creating provocations, case studies and examples which enhanced and livened the discussion.”

The next Design4Health Conference is planned for 2015.

Medilink UK Awards recognise the best in UK healthcare

The finest of the UK’s Life Sciences and Healthcare Technology sector have been honoured at the 2013 Medilink UK Healthcare Business Awards.

The Medilink UK Awards, this year held at the NHS Healthcare Innovation Expo, at the ExCel Centre, London, is an annual event that celebrates cutting edge technologies, outstanding business achievements and international successes across the UK’s Life Sciences sector.

Winners from five categories – Start-up, Innovation, Partnership with the NHS, Export Achievement and Outstanding Achievement – were honoured at the prestigious event.

Hosted by celebrated international broadcast journalist Edie Lush, guests recognised the achievements of the award winners and networked with some of the leading professionals from the Life Sciences sector, UK government, research institutes and overseas organisations.

Tony Davis, Medilink UK’s Chairman, said: “Set against the backdrop of innovation and wealth creation, driven by the Department of Health’s (DH) Innovation, Health and Wealth strategy, NHS Expo was a great opportunity to celebrate the excellence of the UK’s Life Sciences sector through the Medilink UK Awards.

“I would like to extend a massive congratulations to all of our winners. Their success is further proof that our sector is in excellent health and gives us great encouragement for the years ahead.”

The nominees for the awards were derived from the regional awards which were selected by Medilink’s network across the UK.

Winner of the Start-up Award, supported by NSF-DBA Medical Devices, was East Yorkshire-based Savantini Ltd, for its research, design and retailing of products to help men and women improve pelvic floor problems, bladder-weakness and other health related issues.

Edinburgh-based DySIS Medical Ltd won this year’s Innovation Award, supported by the HealthTech and Medicines KTN. DySIS Medical won the award for its development of ground-breaking technology for the evaluation of epithelial based cancers using dynamic spectral imaging.

The Export Achievement Award, supported by The Engine Room, was awarded to Llanelli-based Chromogenex Technologies Ltd. The company secured the award for its outstanding record in selling its range of laser and light-based products for the medical and cosmetic market to more than 50 countries worldwide.

The Partnership with the NHS Award, supported by Array Media, was awarded to Truro-based myClinicalOutcomes. The web-based clinical data collection and reporting platform, developed by clinicians, allows patients with orthopaedic conditions to monitor their progress remotely and long-term using clinically validated assessments.

Deltex Medical, based in Chichester, won this year’s coveted Medilink UK Outstanding Achievement Award, sponsored by Eversheds. Deltex Medical designs, manufactures and markets its CardioQ-ODM Oesophageal Doppler Monitor, a device that provides a solution to fluid management in surgery and intensive care.

Recommended by NICE in 2011 for use in over 800,000 NHS operations, it was cited within DH’s Innovation, Health and Wealth as one of the six high impact innovations to be adopted by the NHS in 2013/14.

This year the awards were supported by the NIHR Devices for Dignity Healthcare Technology Co-operative, the organisation that drives forward innovative new products, processes and services to help people with debilitating conditions preserve their dignity and independence.

D4D Renal Theme awarded NIHR Research Fellowship

D4D’s Renal Theme has been awarded a Doctoral Research Fellowship to develop work on Body Composition Monitor (BCM) in haemodialysis patients.

The award, presented by the National Institute for Health Research (NIHR), in partnership with the Chief Scientific Officer (CSO) for the Department of Health, will support a Clinical Scientist working in Leeds Teaching Hospitals Trust to build on the validation and adoption of the BCM and develop BCM guided fluid management strategies for dialysis patients.

D4D will be a collaborative partner in the work and one of the Renal Theme leads, Dr. Elizabeth Lindley, will act as one of the supervisors for the work.

The BCM will be used to characterise fluid distributions in healthy volunteers and in haemodialysis patients as well as exploring how these distributions are altered in these patients during fluid removal on dialysis.

Attempts at optimising fluid removal, such as promoting fluid shifts from body tissue into the vascular system, will be fully evaluated. The project aims to produce a number of fluid management strategies for different dialysis patient sub-groups, such as those with oedema or those who are prone to symptomatic episodes during dialysis. It is hoped this will help to reduce the rising number of cardiovascular risks in the population which has been linked to overhydration.

David Keane, Clinical Physicist at Leeds Teaching Hospitals, said: “This award is the culmination of years of work in the Renal Unit in Leeds, that started with a D4D funded project looking at BCM in paediatrics and has been supported by D4D throughout.

“It will allow me to work full-time on the project, which will use the BCM to try to make the process of fluid removal less traumatic for patients and better suited to their clinical needs.

“It also gives my team in Leeds the chance to extend their links with D4D and to forge new collaborations with clinicians and scientists in the UK and abroad.”

The NIHR, in partnership with the CSO for the Department of Health, annually runs the Healthcare Science Research Fellowship Competition to support the development of healthcare science research.

Profile of D4D continues to rise

The profile of Devices for Dignity will receive a significant boost over the coming months with its role at a number of key healthcare related events around the UK.

Professor Wendy Tindale, D4D’s Clinical Director, will speak at an event in January 2013, having already played the role of compere at the Medilink Yorkshire & Humber Healthcare Business Awards in November (see picture).

The Medilink Healthcare Business Awards, held at the Cutlers’ Hall, Sheffield, celebrated the achievements of the leading healthcare businesses in Yorkshire and Humber.

Professor Tindale will take part in the Later Life: Engaged in Older Age Conference, at the Barbican, London, at the end of January as part of a Panel Debate.

The debate, “The impact of demographic change on public services: How do we make sure we don’t fail the Baby Boomers?”, will explore the most pressing demographic change facing the UK at the moment (and into the future) – that most of us will live for at least a decade longer than was expected when we were born.

Earlier in the month, Dr Nicola Heron, Programme Manager at D4D, will present at Assist UK’s National Conference, ‘Personal Independence Payments’, held at Heritage Motor Centre, Warwickshire.

Dr Heron’s presentation will look at assistive technologies delivering innovative solutions to support patients with long term conditions and preserving their dignity and independence.

Earlier this year, D4D announced that it had entered a partnership with the charity Assist UK as part of its commitment to Patient and Public Involvement.

Professor Wendy Tindale said: “To be involved in so many high level events around the UK is a fantastic platform for us to communicate the important work we are doing at D4D.

“Knowledge of D4D and our role is growing rapidly and we’re looking forward to taking part in a number of events throughout 2013.”

These events follow on from D4D’s Assistive Technology Lead, Professor Mark Hawley, presenting as the key-note speaker at November’s RAatE conference in Warwick. RAatE 2012 is the only UK conference focused on the latest innovations in Assistive Technology.

Major funding boost to help patients remain independent

Devices for Dignity (D4D), the organisation which works to improve the quality of life for patients with long term conditions has been awarded further funding.

After a successful first five years, D4D, hosted by Sheffield Teaching Hospitals, has been awarded £800,000 funding from the National Institute for Health Research (NIHR) to continue to help produce devices or aids which solve real areas of need for patients.

D4D brings together clinicians, patients, industry, charities and inventors to develop medical devices or technologies which assist people with their daily living. This can range from sophisticated communication aids to the development of new treatments for incontinence.

D4D focuses on three main clinical areas: Urinary Continence Management, Renal Technologies and Assistive and Rehabilitative Technologies.

The programme is hosted by Sheffield Teaching Hospitals and delivered through a co-operative of seven NHS Trust and Foundation Trust nodes around the country, and three academic partners (University of Sheffield, University of Cambridge and Coventry University). The new funding will allow D4D to extend its national network of nodes.

Wendy Tindale, Clinical Director for Devices for Dignity, said: “We are delighted to receive the funding for the next four years from the NIHR. We are proud of our real partnership approach which translates research and innovation to the person’s bedside – at home or in a hospital.

“We aim to build on our successes and become recognised as the national expert group in dignity-related unmet needs, by providing new medical technologies and inventions to help patients maintain dignity and improve their quality of life.”

New rehabilitation devices for patients recovering from stroke and an on-dialysis exercise programme which could help maintain muscle function and prevent patients becoming dependent on wheelchairs are just some of the innovations D4D is involved with.

D4D expands its expert panel

Devices For Dignity has strengthened its panel of experts with the additions of two vastly experienced clinicians.

Dr Sandip Mitra has joined D4D’s panel of experts to co-lead the Renal Technologies theme. He will provide further knowledge as this theme expands to cover not only improved patient care in home and hospital dialysis but also looks to address early diagnosis of kidney disease.

Dr Mitra is a Consultant Nephrologist at the Central Manchester Hospitals NHS Foundation Trust where he leads the largest Haemodialysis at Home programme in Europe. He leads transformational change and Innovation in dialysis delivery systems aimed at improving patient experience and outcomes.

Professor Bipin Bhakta has joined D4D to co-lead the Assistive and Rehabilitative Technology theme to further boost knowledge in the area of rehabilitative medicine.

Mr Bhakta is Charterhouse Professor in Rehabilitation Medicine and Head of Academic Department of Rehabilitation Medicine, Division of Musculoskeletal and Rheumatics Diseases, University of Leeds.

He is an NHS Consultant Physician and clinical lead for Specialist Rehabilitation Medicine Services at Leeds Teaching Hospitals NHS Trust. He is also a lead for the regional specialist rehabilitation centre for people with disability arising from neurological conditions.

His research focuses on how disabled adults and children with neurological injury (e.g. stroke, multiple sclerosis, cerebral palsy) and other causes of disability such as musculoskeletal diseases reacquire functional skills.

Dr Nicola Heron, Programme Manager for D4D, said: “We’re delighted to welcome Sandip and Bipin to our expert panel.

“They have exceptional knowledge across two of our key themes and strengthen what is already a highly knowledgeable and proactive group of experts. Having such as vastly experienced panel of experts allows us to provide informed support for companies which are developing new technologies for areas of clinical need.

“We’re looking forward to working with them both on a number of projects in 2013 and beyond.”

D4D awards funding to develop ideas

THREE innovative projects in the field of continence management have been awarded a total of £35,000 to help accelerate the development of their devices.

Devices for Dignity (D4D), the organisation which delivers technology solutions to support people with long-term conditions preserving their dignity and independence, identified continence management as the theme of this year’s Proof of Concept Competition.

The three challenge themes set were:

Tackling continence for people with dementia
Helping children and/or young adults with continence problems
Self-help tools for prevention or management of urinary incontinence

Professor Paul Abrams of Bristol Urological Institute (BUI) announced the winners and presented the awards at BUI’s 19th Annual Scientific Meeting (ASM) at the Watershed Conference Centre. This year’s BUI ASM was held in honour of Prof Abram’s life-long contribution to urinary continence management.

The first prize went to Andrew Gammie from North Bristol NHS Trust for a Fluid Management System. This is an ‘app’ that will inform and empower patients to manage lower urinary tract symptoms that are troublesome but do not require medical intervention.

Joint second award was presented to Pippa Bowkett from Great Bear Healthcare Ltd for Baby Bear Leg Bag. Her idea is to develop a child-friendly paediatric leg bag for very young children who need catheterisation.

Prof Chris Chapple (right), Prof Paul Abrams (middle) and
North Bristol NHS Trust prize winner Andrew Gammie (left)

Joint second award was won by Eleanor van den Heuvel from Brunel University for Don’t Wee. This project takes the notion of biofeedback for pelvic floor exercise to a new dimension.

Great Bear’s Pippa Bowkett (middle left) and
Lindsey Carruthers (left) with Prof Paul Abrams
(middle-right) and Prof Chris Chapple (right)

North Bristol NHS Trust’s Andrew Gammie said: “This is great news – I have been thinking about this idea for several years and it can finally be brought to the testing stage. If successful, we will be able to save many patients unnecessary visits to diagnostic clinics and assist their management of fluids.”

Pippa Bowkett from Great Bear said: “We are delighted to have won the D4D PoC competition. As a UK manufacturer of urology products this award will help not only the end user, young children, but also ensures the design, development and manufacturing stays in Cardiff.”

Brunel University’s Eleanor van den Heuvel said: “The Don’t Wee is going to be an exciting project to be involved in. It has huge potential benefits for improving women’s continence status.”

The winners will now be given the opportunity to work with D4D’s national experts’ network, resources and specialist clinicians, bridging the gap between initial concepts, securing grant funding and attracting early stage investment.

Professor Chris Chapple, D4D’s Urinary Continence Management Theme Lead, said: “This has been a wonderful opportunity for D4D to help drive and support innovations in this area of clinical need. The excellent applications which we received emphasised the innovative ideas that are awaiting development and which D4D is keen to identify and nurture for the benefit of patients.”

Virtual clinic to benefit LUTS sufferers

The world’s first virtual assessment clinic in the field of Lower Urinary Tract Symptoms (LUTS) has been launched.

ELAROS 24/7 is an innovative new way of carrying out initial assessment as well as the long term management and monitoring of patients with LUTS.

LUTS refers to a range of urinary problems that can significantly impair the quality of life for sufferers. Effective treatment requires clinical evidence on frequency of urine volumes passed and urgency, which is typically recorded using paper diaries.


Use of such diaries is infrequent outside specialist services due to limited experience in primary care and the difficulty of interpreting the raw, variable data.

A potential solution to these problems has been developed by ELAROS 24/7 Ltd (Electronic LUTS And Remote Observation Service). The system, ELAROS 24/7, was launched at a special event at the University of Sheffield’s conferencing facility, The Edge, which was attended by more than 100 clinicians, business people and key stakeholders.

ELAROS 24/7 Ltd is a partnership between Devices for Dignity (D4D)/Sheffield Teaching Hospital Foundation Trust, MDTi Healthcare Ltd, Medipex (NHS Innovation Hub for Yorkshire and Humber) and RTC North, with funding awarded through the Engineering and Physical Science Research Council (EPSRC).

The ELAROS system consists of three parts – the UroDiary (to collect data), the UFlow meter (to measure flow rates) and the UroConnect (to manage and analyse data).

Informed by NICE guidelines on the identification and management of LUTS, ELAROS 24/7 is used by the patient to record times, volumes passed, and the desire to urinate. Once recoded, data is downloaded to the GP’s computer system for data visualisation, interpretation and patient management.

The UroDiary®, a portable electronic diary, is more discrete than writing in a diary, and makes data easily traceable and transferable between healthcare providers. Simple data capture, analysis and quicker diagnosis will potentially save the NHS £66M per year* through reduction in referrals to secondary care and diagnostic costs.

Professor Chris Chapple, D4D’s Urinary Continence Management Theme Lead, said at the launch event: “A bladder diary is an essential tool for clinicians assessing lower urinary tract symptoms – but a paper diary is not practical and often not reliable.

“ELAROS 24/7 gives the clinician a huge amount of information and allows us to effectively and accurately evaluate and treat people.”

It is also predicted that the ELAROS service will make significant savings on pharmacology budgets of at least 10% on the drugs being used in this area of health, with a pilot being run in February 2013 to test these assumptions.

Professor Paul O’Brien, Chief Executive of ELAROS 24/7 Ltd, said: “ELAROS 24/7 reduces the need for patients to make unnecessary journeys to their GP and also cuts down on inappropriate referrals – therefore benefiting both GP and patient, as well as reducing costs for the NHS.”