The group's mission is to empower and enable patient and public involvement in motor neurone disorders research

News Archive: 2013

July 2013

Alex Mcgeachan spoke of the research that he has been conducting with researchers based at SITraN

Problems with excessive saliva affect approximately half of the MND population, but there is little evidence guiding the management of these problems. A recent survey of clinicians caring for MND patients estimated that these problems are poorly controlled in approximately 42% of patients with these problems.

We undertook a study to assess the approaches being taken to manage these problems by clinicians with a special interest in caring for MND patients. Nineteen clinicians from 17 centres across the UK provided case report forms for a total of 366 patients.

Anticholinergics are multi-purpose medications which have been shown to reduce the production of saliva. Seven different types of these medications were used in over 70 doses. This variation in management approaches highlights the lack of evidence guiding the management of this problem. Hyoscine patches were most frequently effective and an effective early stage therapy; however, their efficacy was limited by adverse effects particularly a skin reaction at the site of the application to the patch. Moreover, these drugs often failed to provide sufficient symptom control as disease progressed. Botulinum toxin injections into the salivary glands were a frequently used and often effective alternative, used in patients whose symptoms could not be controlled by anticholinergic medication.

Motor Neurone Disease (MND) Film Screening – I am Breathing

The Sheffield MND Care centre staff worked with the Local South Yorkshire MND Association to host a screening of the film ‘I am Breathing’ at the Sheffield Institute for Translational Neuroscience (SITraN) on the 24th June, to raise awareness of motor neurone disease (MND) during MND awareness month. Over a hundred individuals from all over the region attended the event.

I AM BREATHING is about the thin space between life and death. Neil Platt, who previously attended Sheffield MND Care Centre based at the Royal Hallamshire Hospital, ponders the last months of his life. Within a year, he goes from being a healthy young father to becoming completely paralysed from the neck down. As his body gets weaker, his perspective on life changes:

“It’s amazing how adaptable we are when we have to be. It’s what separates us and defines us as human beings.”

I AM BREATHING has been critically acclaimed since its world premiere at the International Documentary Film Festival in Amsterdam in late 2012: http://www.iambreathingfilm.com:

“Intimate documentary examining a normal-but-remarkable man and wife’s handling of his fatal disease ranks among the year’s most moving films.”
(The Hollywood Reporter)

I Am Breathing screening at SITraN

The film is an emotional and inspiring insight into the world of a family coping with the impact of MND. Neil’s wife Louise sent a message to the audience thanking them for their time in watching the film and raising awareness of MND.

The film was screened in 168 countries and on every continent making SITraN part of a global awareness campaign which made the media sit up and listen and acknowledge this devastating disease. The Sheffield Star locally reported on this event can be seen here.

June 2013

New group member

I’m Alison, I have recently join the Group together with my husband Colin. We live in Macclesfield with our two teenaged children. Colin had his first symptoms of MND over 4 years ago and last September reluctantly accepted a wheelchair. We met 30 years ago at University where we both took scientific degrees; Colin went on to complete a PhD in geochemistry while I worked in a molecular biology research laboratory. Although our careers have taken us into more commercial roles in the scientific industry, we share a passion for science. We have now established a website marketing company, Web Incite (Web-Incite.co.uk) to enable us to continue to work while living with MND.

MND has, and is continuing to change our lives and constantly presents us with new challenges. I am, by nature, an optimist and generally find something positive in any situation but this is difficult when confronted with MND; I hope that by sharing our experiences of this disease with the group, something positive can come from it. The tireless enthusiasm and determination of the group to improve the situation of patients with MND is commendable.

I feel privileged to be part of SMND RAG, hearing about the truly amazing research which is undertaken day in, day out in this institute and others around the world gives me optimism that perhaps the next generation will not have to suffer this disease.

MND Awareness Month – Free Film Screening

‘I am Breathing’ –  – Neil Platt ponders the last months of his life. Within a year, he goes from being a healthy young father to becoming completely paralysed from the neck down. As his body gets weaker, his perspective on life changes:

“It’s amazing how adaptable we are when we have to be.
It’s what separates us and defines us as human beings.”

I AM BREATHING has been critically acclaimed since its world premiere at the International Documentary Film Festival in Amsterdam in late 2012:

“Intimate documentary examining a normal-but-remarkable man and wife’s handling of his fatal disease ranks among the year’s most moving films.”  (The Hollywood Reporter)

Neil Platt attended the Sheffield MND Care Centre based at the Royal Hallamshire Hospital.  This film is being shown at 5pm on 24th June 2013 in SITraN to support MND awareness month (June 2013) therefore there is no charge for this event but please book a place for the viewing by contacting annette.taylor@sheffield.ac.uk so we can confirm numbers. (Run time 73 minutes).

Open Gardens Event – Sheffield

Gates open 2-6pm on Saturday 15th and Sunday 16th June, admission £3.50 (children go free). Location: Owl End, Dore, S17 3DB.  5miles SW Sheffield City Centre. On A625 to Hathersage, turn Left at Dore Moor Inn, 1st Right into Newfield Lane. 200yds on Right. Please park considerately on Newfield Lane and surrounding roads. Blue Badges only down drive. Description: Large garden of 1.5-acres with woodlands and meadow. Herbaceous and mixed borders. Vegetables, soft fruit with polytunnel. Views towards Blackamoor.

May 2013

European Patient Ambassador Programme

Training course and information about influencing healthcare and research – register and access the training course here.

OK to ask Campaign launched

Sheffield Teaching Hospitals NHS Foundation Trust launch National Institute for Health Research OK to ask Campaign – lots of interest from staff and patients. MNDA Meerkat supports event and promotes MND research locally.

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Involvement4Access

SMND RAG is on the map promoting the work that it does. Involvement4Access has information on initiatives on how patients can be engaged and empowered to be involved in research within the NHS.

International Clinical Trials Day – 20th May 2013

International Clinical Trials Day is being celebrated around the world on 20th May 2013, to commemorate the day that James Lind started his famous trial on the deadly disease scurvy. It provides a focal point to raise awareness of the importance of research to health care, and highlights how partnerships between patients and healthcare practitioners are vital to high-quality, relevant research. Colin Fenwick a member of the SMND RAG has written an article on his thoughts about patient and public involvement in research and understanding patients expectations which can be read here PPI in Research – Colin Fenwick.

April 2013

“It’s OK to ask” ABOUT RESEARCH

Sheffield Teaching Hospitals NHS Foundation Trust is one of many organisations around the country that are supporting “It’s OK to ask” – a new campaign led by the National Institute for Health Research to encourage patients to ask their family doctor, nurse or consultant about clinical research.

Clinical research is the way in which we gather evidence to improve treatments for patients.  Promoting, conducting and using clinical research to improve healthcare is one of the key principles of the NHS, and the new Constitution for NHS England contains a pledge to inform patients of research studies in which they may be eligible to participate.

In many cases doctors will approach patients and carers about taking part research, but the NIHR also wants patients to feel empowered to ask about it, to keep research at the top of the NHS England agenda.

In a recent consumer poll, less than 21% of patients and the public said that they would feel confident asking their doctor about research opportunities – a low number. That’s why the National Institute for Health Research (NIHR), with our support,  is promoting the fact that it’s OK to ask about clinical research.

If you have a medical condition and are undergoing treatment, you can join the campaign by asking your doctor, nurse or consultant about clinical research, and whether it might be right for you or someone you care for.

The NIHR would then like you to let them know that you took part by logging that you asked about research, along with what response you received and any other comments you want to make, on their campaign social media sites, or by email or phone.

By measuring your responses to the “OK to ask” campaign the NIHR will be able to let clinicians know that patients are interested in research. It will also help them to see where the response to patients who want to take part in research could be improved.

If you ask your doctor about clinical research, please support the campaign by telling the NIHR what happened in one of the following ways:

On Facebook at www.facebook.com/NIHRoktoask
On Twitter: @OfficialNIHR using #NIHRoktoask
By email to oktoask@nihr.ac.uk
By telephone 0300 311 99 66

Further information on the OK to ask campaign can be found online at www.crncc.nihr.ac.uk/oktoask.

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