Heading in the right direction: Sheffield Support Snood update

We are funding, together with the NIHR i4i (National Institute for Heath Research invention for innovation) programme, a research team in Sheffield who have developed a new type of neck support for people living with neck muscle weakness as a result of a neurological condition.

Designers, clinicians and engineers from University of Sheffield, Sheffield Hallam University, Devices for Dignity, Sheffield Teaching Hospital, Barnsley Hospital, and the Sheffield MND Research Advisory Group have worked together with people living with MND to develop the Sheffield Support Snood through an iterative design process.

The results from a small pilot study of the snood were presented at the International Symposium on ALS/MND in Brussels last year, where we reported on it.

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Next step – the 100 collars project

In September we attended the Sheffield Support Snood training day, run by Devices for Dignity, Sheffield Teaching Hospitals NHS Foundation Trust, and Dr. Christopher McDermott, a Clinician Scientist at the Sheffield Institute for Translational Neuroscience (SITraN) who is the Chief Investigator for the project .

The training day allowed physiotherapists and occupational therapists from MND care centres to see the collar, receive training on how to put it on, and find out about the 100 collars project.

100 people with MND who experience neck weakness and 50 people who have neck weakness linked to another condition, such as muscular dystrophy or after having a stroke, will test out the latest design of the snood.

How can you take part?

MND Care centres at the following hospitals/locations are participating in the 100 collars project:

  • Sheffield
  • Oxford Radcliffe
  • Walton Centre, Liverpool
  • King’s College, London
  • Newcastle Upon Tyne
  • Addenbrookes, Cambridge
  • Preston
  • Salford Royal Hospital
  • Queen Elizabeth University Hospital, Glasgow
  • NHS Lothian, Edinburgh
  • Beaumont Hospital, Dublin

People who attend one of these centres will be able to speak to someone about this project at their next appointment. Snoods are expected to be available to those taking part from late November.

Those who do not currently attend a participating centre, but are interested in taking part need to speak to their neurologist about a possible referral to one of these centres.

What does taking part in the project involve?

People taking part will be asked to commit to two visits to their participating centre, one month apart, to complete two questionnaires and have the snood fitted.

Those taking part will initially fill out a questionnaire asking about any collar(s) they currently use and their level of neck weakness.

After one month of using the Sheffield Support Snood, participants will be asked to fill out another questionnaire giving information on how they found the snood, assess the quality of support it gave and how comfortable it was. They can continue using the snood after this trial month if they find it suitable.

Dr Chris McDermott (Sheffield Institute for Translational Neuroscience, University of Sheffield)

Dr Christopher McDermott commented, “We are excited about getting feedback and reaction to the snood from people who were not involved in the design of it or the initial small study. The comments from people who take part in the 100 collars project will be important in helping with the ongoing process of refining the design of the support snood.”

Why not collars for everyone?

The 100 collars project is needed in order to provide potential manufacturers with evidence on if the support snood is a good product and a feasible alternative to collars that are currently available.

It is unlikely a company would take on the license for the product and go on to manufacture it, without it having first been tested in many people.

In the future it is hoped that once a manufacturer is found to take on the snood, it could then be available more widely to anyone with neck weakness, including people who have MND.

Using video messages to help leave a digital legacy

In a guest blog, PhD student Oliver Clabburn tells us about his family’s experience of MND and his research interests. He also explains how you and young people in your family can help him with his latest research project looking into digital legacies.

Olly Clabburn

In the mid-nineties my family joined the technology revolution with an answering machine! We had only just returned home when my Dad started recording the answering message.

In 1997, Dad started having problems with his speech and weakness in his legs. He was diagnosed with MND later on that year, and within a few months after first visiting the doctor, he had stopped work because of his deteriorating speech and regular falls. He became more and more reliant on his robotic sounding light-writer as he lost his voice, and soon, the answering machine was the only reminder I had of what he once sounded like.

He moved into the local hospice for the final few years of his life due to his care needs increasing and eventually passed away in 2004. As a family, we then began grieving and getting used to a life without him. This is another challenge to overcome, in addition to all the other ways in which MND impacts upon families.

Fast forward to now and I’m a PhD student at Edge Hill University in Lancashire. My area of research is children and young people who provide care for family members with MND, and also young people who are bereaved due to the disease. Some people may remember a piece of research I carried out a few years ago investigating the experiences of having a parent with MND which was reported in Thumb Print.

When I started my doctorate last year, I began to consider different ways of supporting young people who are affected when someone in their family is diagnosed with MND. People often talk about how photographs, music, old clothes and memory boxes provide comfort and support whilst grieving. I started to think about how I would listen to the answering machine to hear my Dad’s voice, not only when he had passed away, but often as a reminder when he was still alive that he didn’t always sound like a light-writer!

My PhD research is investigating the use of videos as a purposefully recorded ‘digital legacy’ with people affected by MND. This is where people with MND record a series of video clips about their life, memories, accomplishments and messages for children in their family. These videos are then exported to a DVD or digital source, and given to the young person to watch whenever they feel the need to reconnect with the person they care for, or remember the person that may have passed away.

My study is investigating the experiences of creating and using a digital legacy with people affected by MND. To do this, I will be interviewing around 10 people from the following three groups from now until April 2017:

  • People with MND who are recording/have already recorded a digital legacy for a child or young person in their family
  • Young people (aged 11-24) who are currently caring for a family member with MND and use a pre-recorded digital legacy as a means of support
  • Young people (aged 11-24) who are bereaved due to losing a family member who had MND and are using a pre-recorded digital legacy to support them whilst they grieve.

The interview will take place either face-to-face or through Skype, whichever is preferred by those taking part. The interview will last about 30 minutes and will be informal making it feel like a conversation.

Some people may know exactly what to say and what to talk about when making their digital legacy, but for many, it’s hard to know where to start. There are many digital legacy computer programs available to download, but one of them, called RecordMeNow, was presented at the ALS/MND symposium last year in Brussels.

RecordMeNow is free to download for your computer at www.recordmenow.org, or from the Apple App store for your iPad/iPhone. It is specifically designed to leave a video legacy for children and provides a selection of prompting questions that you can add to, modify or delete as required. Although it is completely independent from my research, it is a great free app that can help people to create their digital legacy for a child.

If you would like to take part in the study, or know a young person that may like to be interviewed, please contact me by:

Raising the profile of Kennedy’s disease

Did you know the MND Association also supports people who have Kennedy’s disease?

In May a new clinic specialising in Kennedy’s disease opened in London at the National Hospital for Neurology and Neurosurgery.

To mark this big step in helping support and treat people with Kennedy’s disease, Katy Styles who campaigns on behalf of the Association, and whose husband Mark has Kennedy’s disease, thought it would be a great opportunity to raise awareness of this rare condition.

Katy and Mark Styles
Katy and Mark Styles

There is very low awareness of this disease amongst neurologists, healthcare professionals, the general public and within the Association itself. We do all we can to explain to everybody what Kennedy’s disease is and what it’s like to live with.

Due to the rarity of Kennedy’s disease you can feel very much alone. It is so great to be part of the MND family and the Association is key to this by making us feel part of a wider community.”

What is Kennedy’s disease?

Kennedy’s disease is a condition similar to motor neurone disease (MND) which affects motor neurones. It is sometimes called spinal and bulbar muscular atrophy (SBMA). Continue reading

Disappointing news for diaphragm pacing in MND

Results from the UK clinical trial of diaphragm pacing in MND/ALS (known as DiPALS) were published online today in the journal Lancet Neurology.

DiPALS was the first randomised clinical trial of diaphragm pacing in MND and aimed to find out whether or not diaphragm pacing was beneficial when added to the current standard treatment of non-invasive ventilation (NIV), compared to NIV treatment alone.

The trial results unfortunately show that diaphragm pacing was not beneficial when used in addition to NIV, and was in fact harmful, with people using diaphragm pacing living on average 11 months shorter than those on NIV alone.

Continue reading

Research priorities in palliative and end of life care

Palliative-care-2In a fitting start to a new year, the results of the Palliative and End of Life Care Priority Setting Partnership top 10 priorities for research were released today. The topics range from: the best way to get out of hours palliative care, how to provide palliative care for everyone irrespective of where they live in the UK, to the best way to manage pain and discomfort for people with communication or cognitive difficulties.

For the MND Association the results will help focus future healthcare research and help support our campaigning for more funds for palliative and end of life care. Announcing the top 10 priorities for research is the start of a long process. I hope that it gives people with MND today a sense that their battles are being recognised, they’re not alone and that we’re all working together to ensure that better care is available. Continue reading

On the tenth day of Christmas MND research gave to me: Ten research studies we helped promote in 2014

“On the tenth day of Christmas MND research gives to you… TEN research studies we helped promote and recruit for in 2014”

IMG_2041Last year we helped promote and recruit people living with MND to take part in 10 different studies.

From biomarker studies, to survey’s on the risks v benefits of new medicines, we covered a number of different opportunities for people living with MND to get involved in research!

The TONiC study and the ALS biomarker study are still recruiting and tissue donation is open all year round! To stay up to date on the latest opportunities to get involved in research you can visit our website or subscribe to our research specific newsletter.

Alternatively, if you are living with MND you can join our MND Research list. Should a research opportunity become available in your area we will then contact you with details, including how to take part. Find out more.

What should be top of palliative and end of life research To Do list?

At the beginning of the week, the Palliative and End of Life Care Priority Setting Partnership (peolcPSP) launched a survey. Its aim is to help those with a passion for finding answers in the neglected area of palliative care research work out what should be top of their To Do lists. The MND Association is one of the partners in the project led by Marie Curie Cancer Care and supported by the James Lind Alliance.

We’re asking people with MND, their families and carers, healthcare professionals and clinicians to rate a set of 83 questions. For each question you can say whether you think it is a low or high priority for research.  Continue reading

Developments in BioMOx

Medical Research Council (MRC)/ MND Association Lady Edith Wolfson Senior Clinical Research fellow, Dr Martin Turner writes about recent developments in his BioMox study.

Dr Martin Turner, MRC/MND Association Lady Edith Wolfson Clinical Research Fellow

Dr Martin Turner, MRC/MND Association Lady Edith Wolfson Clinical Research Fellow

My first ever blog. I decided to share developments in ‘BioMOx’ – the Oxford Study for Biomarkers in MND, which has been funded through the MND Association’s pioneering Lady Edith Wolfson Fellowship scheme (in conjunction with the Medical Research Council).

About BioMOx

Between 2009 and 2013, over 70 people living with MND (and some healthy people of similar age for comparison), took part in a new type of patient-based study. Men and women of all ages (from 28 to 86), some with primary lateral sclerosis (PLS) as well as a range of the more common amyotrophic lateral sclerosis (ALS) types, all gave up their time to attend for a day or two of tests in Oxford. Continue reading

Taking part in BioMOx..

To end volunteer week, Katy Styles, who is a Campaigns contact for the East Kent Development Group of the MND Association, blogs about her and her husband Mark’s experience of volunteering to take part in the Biomarker’s in Oxford (BioMOx) study.

It started as an innocuous question following a neurology appointment at the Oxford MND Care Centre, Mark and I asked “Now what can we do for you?”

Following a phone call and some form filling, Mark and I had volunteered to take part in Dr Martin Turner’s BioMOx Project. Mark as a person with MND and me as a control of the same age.

We didn’t know what to expect as we were scheduled to take part in two days worth of tests, which included two scans and a written test. In between time in the scanners however, we were able to enjoy everything Oxford has on offer. Continue reading

A healthy control – Dr Scott Allen

Dr Scott Allen is a Senior Post Doctoral Researcher at the Sheffield Institute for Translational Neuroscience (SITraN). Here he blogs about his experience as a research volunteer in an MRI scanner.

Today, as part of on-going work by Doctor Tom Jenkins and Prof Pamela Shaw at the Sheffield Institute for Translational Neuroscience (SITraN), I volunteered as a healthy control to have a full body MRI scan.

Mitochondria and MRI

Tom’s work is very similar to my own; he aims to determine whether there are differences in the way that people with motor system disorders produce energy compared with healthy volunteers. Mitochondria are known as the “powerhouses” of human cells and produce energy. Tom wants to find out whether there is evidence for abnormal function of these mitochondria by doing magnetic resonance imaging (MRI) scans of the brain. Continue reading