Stadium Design Research

Would you like to participate in research to explore stadium design  and the facilities needed  to enable independent wheelchair access to sporting events?

What represents meaningful provision for wheelchair users in English football stadia?
JEANETTE DODD, Doctoral Researcher, SURFACE Inclusive Design Research Group
School of the Built Environment (SOBE), University of Salford.

Jeanette Dodd, who has FSH MD, is recruiting for participants in her Ph.D research at the University of Salford. If you use a wheelchair to attend, or try to attend, live events at football stadia, are aged 16 or over and would be like to take part, then please contact her at the email address below.

The aim of her PhD. research is to examine what represents meaningful provision for wheelchair users in English football stadia, identifying features that can act as barriers to limit accessibility, or which can enhance accessibility and promote inclusion. The objectives are to:

1. Appraise how society views disability and how society is including and excluding wheelchair users;
2. Assess the design process, the legislation, the underpinning regulations, the guidance and how this meets the needs of wheelchair users;
3. Explore the accessibility of spectator sports and appraise the design guidance for stadia that can facilitate access to it;
4. Investigate the everyday user experience when attending, or trying to attend football stadia;
5. Understand how provision at football stadia is determined in practice;
6. Provide a critical synthesis of the extent to which the needs of wheelchair users are being met; Recommend the changes and improvements that need to be made so that wheelchair users are better accommodated in football stadia.

Jeanette will interview you to capture the everyday experiences of disabled supporters who are wheelchair users. If you have attended, or tried to attend, a live event at a football stadia as a wheelchair user, Jeanette would be interested in hearing from you. 

The NeuroMuscular Centre has kindly offered the use of a private room for the interviews, which should take between 30-45 minutes. Participation is entirely voluntary, although interviewees receive a small ‘thank you for taking part’ gift and travel expenses are paid at 45p per mile. All participants will remain anonymous. Data collected will be kept strictly confidential and will be related to your code number rather than your personal details.  If you are interested in taking part, then please get in touch. 

CONTACT DETAILS: * Email:  j.dodd3@edu.salford.ac.uk
*        Jeanette Dodd, SURFACE Inclusive Design Research Group, Room 423, 
          Maxwell Building, University of Salford, The Crescent, Salford M5 4WT

Research at the NMC

An article entitled “Gastrocnemius medialis muscle architecture and physiological cross sectional area in adult males with Duchenne muscular dystrophy” (published in the Journal for Musculoskeletal and Neuronal Interactions) is the first publication of the collaboration between Manchester Metropolitan University’s (MMU) Institute of Performance Research and NMC. It is based upon data collected in the summer of 2014 and is the first investigation of muscle size in adults with Duchenne MD that has been published to date. It demonstrated that the DMD participants had significantly smaller muscle cross-sectional area compared with unaffected adults. 

This data is unique – it has not been previously published in an adult population. Much of the current literature describing populations of people with MD has been undertaken in paediatric individuals and there is a lack of quality research into the effects of physiotherapy in particular. NMC is uniquely placed to contribute to this field of research. 

NMC provides on-going physiotherapy to over 200 people, with many more attending for specialist assessment. Presently, this therapy is largely guided by client feedback and collaborative goal-setting, in addition to decades of experience, rather than hard evidence. Health professionals in other settings do not have access to the same level of expertise; they need data highlighting best practice.

Already there is further work being planned and undertaken at NMC. Publication of another article describing bone mineral density and physical activity in MD individuals is due hopefully in the next few months. A fulltime PhD student from MMU – Matt Jacques - is due to complete data collection for a study describing resting calorie use in MD individuals by the end of the year. Matt will also be collecting data for his PhD project studying the immediate effects of physiotherapy in MD individuals.

In addition to this, Michael Andrews – a Master’s student at Chester University – has completed data collection for his study into exercise in Duchenne MD.  The most critical component in the success of this publication is the NMC’s service users and their support network – to everyone who has participated in the recent projects I would like to extend heartfelt thanks. There is presently a real opportunity for NMC to be part of the production of significant pieces of research in an area demanding investigation and that is cause for tremendous excitement. Direct link: http://www.ismni. org/jmni/pdf/60/05MORSE.pdf

Do You Want To Be A Guinea Pig - Participating In Research

It quickly became apparent to me at the Neuromuscular Centre that their work encompasses numerous conditions and most of them are rare.  There are many gaps in the understanding of musclewasting conditions and a lack of treatments.  Research is essential for understanding the causes, trialing things that can have a benefit and ultimately in finding effective treatments. Progress often happens in tiny increments and we don’t know whether or not effective treatments will come in our lifetime.  Many that I have spoken to are interested in our conditions and for a range of reasons would like to be involved in research projects.  

I recently met with David Tucker who is taking part in a drugs trial to look at a possible treatment for the condition he has, Sporadic Inclusion Body Myositis.  Research is not always drugs trials, and there are many observational studies.  

How did David get onto the research programme?   His story began when David moved to Salford Hospital, as he felt that his previous clinic  did not have the expertise or knowledge of his condition.  On his first visit he was asked if he would participate in a new research project.  He readily agreed and within a few weeks he was back to start the process.  For many people it is something that they bring up with their Consultant who should be able to link them into current and active research projects.  

What was the process?  The initial screening determined that David was a suitable candidate for the research.  There were a range of criteria and tests, such as a DEXA  “dual energy X-ray absorptiometry” scan used to measure bone density, which could have ruled him out at this stage.  David matched the qualifying criteria on all counts.     

Next came the baseline tests to measure his muscle strength, these have been repeated periodically through the study and measure any changes in David’s strength.   

In David’s trial the drug is given as an infusion.  Every few weeks David has to travel to Salford for two consecutive days, a round trip of over 160 miles.  The first day he arrives and is simply weighed before leaving.  He explained that the reason is that the pharmacists take a day to make up the infusion specifically to his weight.  While frustrating, David accepts this as essential to ensure the integrity of the study.   

This is a major international study and Novartis, the drugs company, will be spending many millions on this research.  They willingly pay all out-ofpocket expenses for David and a carer, including travel, food and accommodation.  For the first infusion David and his wife stayed in a hotel, however he now prefers to travel daily.  

Was the research a positive experience?  David had just had his penultimate infusion but he hasn’t noticed any difference in his abilities throughout the study.  He isn’t discouraged about this as he explained that he doesn’t know whether he is getting the drug or not.  There are four groups of participants, three are receiving infusions in different doses and the last is a control group receiving just a placebo.  No one knows, other than those doing the analysis, which group they are in, including the medical staff.  This secrecy is so strictly controlled that two different pharmacists are involved in the preparation and the mixing of the infusion so that even they can have no knowledge of the end dose.  

I asked what motivated David to be involved in the research. “ I want to help in any way I can, in the hope that it will give faith and be of help to future sufferers.”   

Following the end of the trial all the participants will continue to receive infusions at the same dose until the results of the research are confirmed and if the drug is licensed .  It is hoped that it will be as soon as next year.  They will then receive infusions with the drug at the optimum dose, so hopefully all could benefit directly from participating in the study.   

This study has required an enormous time commitment for David, but he is very positive about the experience  “Although I think I am on the Placebo I am finding it a worthwhile and very interesting experience being on the Trial and obviously hope that it will benefit myself also.”

New delegating payments guide

New research has found that the majority of people needing assistance to make payments due to illness, capability or mobility challenges, are putting themselves at risk of fraud by sharing their card and PIN. More than half of those surveyed were also not aware of each of the safer options to make payments, such as a prepaid card or opening up a second account. To help these consumers, a new Pay Your Way consumer advice guide from the Payments Council sets out payment
options to help people stay in control of their financial affairs, when making payments independently or visiting the bank or ATM is difficult. Visit http://www.payyourway. org.uk/faqs/guides/ managing-payments/ to download the “Pay Your Way” Guide