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

News Archive: 2013

December 2013

David Stelmach Introduction

I have been asked by Hannah to provide a précis of my life and my reasons for volunteering for this group; a daunting task indeed, but not as frightening as her request for a photograph!

David StelmachI was born in Woolwich, London, but now live in Pontefract, West Yorkshire with my wife, who was a Naval Nurse and now works for the Miscarriage Association in Wakefield. We have 3 rather long sons, who have fled, but one seems to be on elastic as he usually works abroad and returns after contracts.

My background is as a Royal Navy Medical Technician, a role that I enjoyed between the ages of 15 and 40. In retrospect, I enjoyed all of it, and the variety of roles I fulfilled. These included those of a paramedic, radiographer, joint services rock climbing instructor, outdoor development tutor, practice manager and lecturer.

During my service, I enjoyed secondments to the Royal Marines Training Centre and a six year deployment to the Queen Elizabeth Military Hospital in Woolwich, a garrison town for the Royal Artillery, which was where I was born, and the reason for joining the RN in the first place.

Upon leaving the RN, I completed an MA in Health Services Studies at the Nuffield Institute for Health, Leeds and several academic courses since, which included a Postgraduate Certificate in Health Research at Leeds Medical School.

I am now self employed with my own computer services company: http://www.mach4cs.co.uk and enjoy alpine skiing, rock climbing and crawling up hills slowly, computers, photography and painting (art, not decorating). I try to prolong my life by visiting the gym regularly, but I think it has the opposite effect.

A service pal, who I have known since 1968, recently moved into the Sheffield area and is now the Chair of the Motor Neurone Disease Association in Sheffield and invited me to watch the superb documentary; I am Breathing, by Neil Platt, and also attend the SITraN open day this year. I was fascinated by the research undertaken at SITran and hoped that I could utilise my research training for the benefit of the centre and those who rely upon it for the discovery of facts about MND, hopefully to alleviate its effects and progress towards its cure and/or eradication.

I hope that I am able to contribute effectively towards the work of SITraN and look forward to learning more about the disease processes involved.

Sheffield Support Snood

Sheffield are undertaking a research study to develop a new head support called ‘HeadUp’ in collaboration with people living with MND, their families and the MND healthcare professionals. The project is currently recruiting participants to evaluate the new device over a four week period to establish whether the new collar is acceptable and meet individual’s needs. One of the design team Andrew Stanton attended the September 2013 meeting to demonstrate the collar prototype and explain to the group about the process of developing a new design such as this.

November 2013

SITraN Open Day

On September 17th 2013 over a 100 members of the public were invited to attend SITraN to find out more about the research that is taking place in the department, meet the researchers and look around the facilities. Workstations were set up for Dementia, laboratory work, Clinical work taking place in MND and also patient and public involvement work including the Sheffield MND Research Advisory Group. Charity bodies were represented at the day and it was deemed a successful event which enabled members of the public to gain a greater understanding of the work being done and how they are able to get involved.

Derby Evening Telegraph raises awareness

The Duke signing the charter has had a mention in the Derby Evening Telegraph here’s the link.

October 2013

Duke of Devonshire Signs MND Charter Campaign

Members of SITraN and the SMND RAG visited Chatsworth House in Derbyshire yesterday for an appointment with the Duke of Devonshire to discuss the MND charter and gain his signature to this campaign.

Duke of DevonshireThe Duke said ” I am delighted to support this wonderful and highly important campaign’. The charter has been put together by theMotor Neurone Disease Association and has been signed by over 10,000 people.

The charter sets out five key principles and priorities which will ensure patients with motor neurone disease are treated with respect and dignity. These are: the right to early diagnosis and information, the right to high quality care and treatment, the right to be treated with dignity and respect, the right to maximising the quality of life and support for carers.

To read a copy of the charter go to http://www.mndassociation.org/get-involved/campaigning-influencing/MND+Charter. If you are interested in getting involved in any motor neurone disease research projects run by Sheffield Teaching Hospitals NHS Foundation Trust please contact Theresa.walsh@sheffield.ac.uk.

I AM BREATHING Screened at Westminster

On 14 October I AM BREATHING will be screened at Westminster to MPs and members of the House of Lords! This is our chance to show the film to people who have the power to change things. The screening will only be a success if MPs actually attend it. To make sure all seats are taken we really need your help. MPs and members of the House of Lords need to hear and talk about MND, and we want to encourage them to take action.

So please contact your local MPs now and inform them about this screening.  It is much easier and quicker than you might think! The Motor Neurone Disease Association has provided a very handy tool to help you, please click here to send an e-mail to your MP.

September 2013

MND Charter

Members of the SMND RAG group  (Hannah Hollinger and Emily Goodall) met with the Vice-Chancellor of the University of Sheffield Professor Sir Keith Burnett to talk to him about the Motor Neurone Disease Association MND charter which aims to achieve quality of life, dignity and respect for people with MND and their carers. This event was organised to raise the profile of this condition and gain support for quality of care for people with MND and their carers from key individuals within the healthcare  field. These group of individuals whose conditions and needs can change rapidly need a responsive and efficient service to ensure timely provision of care – something that the MND Charter promotes. The more people that understand this condition and its needs, the better the care provision can be.

Keith Burnett MND Charter signing

Sheffield Botanical Gardens Tour

Sally Light MNDA Chief Executive joined members of the South Yorkshire MNDA branch and members of the SMND RAG for a tour of the Sheffield Botanical Gardens. This gave local people with MND the opportunity to raise awareness of local successes and issues and to meet each other whilst enjoying a pleasant evening in the sunshine.

news.h3

Owl End Open Garden Event (June 2013)

The Open Garden weekend at Owl End Sheffield raised just over £1,000 for the South Yorkshire MNDA.

The refreshments tent overflowed with cakes baked by SITraN staff. The money raised here, together with all the proceeds from sales of plants goes to the MND Association, while the garden entry money goes to the National Garden Scheme charities.

news.h2

August 2013

MND Charter

Sir Andrew CashMembers of the SMND RAG group ( Hannah Hollinger, Emily Goodall and Sarah Wyatt) met with the Chief executive of Sheffield Teaching Hospitals NHS Foundation Trust Sir Andrew Cash to talk to him about the Motor Neurone Disease Association MND charter which aims to achieve quality of life, dignity and respect for people with MND and their carers. This event was organised to raise the profile of this condition and gain support for quality of care for people with MND and their carers from key individuals within the healthcare field. These group of individuals whose conditions and needs can change rapidly need a responsive and efficient service to ensure timely provision of care – something that the MND Charter promotes. The more people that understand this condition and its needs, the better the care provision can be.

To view the MND charter please click <here>.

Terminally ill father in fight to end ignorance – Yorkshire Post

Sheffield Star – Brave Ian backs charter for devastating disease

News Archives