10th Anniversary Special Edition Newsletter Spring 2009

Chair of steps down Tributes given to Paul Kennedy as founder, leader and driving force behind the organisation At the AGM during the Association’s 10th Anniversary conference, Professor Paul Kennedy, Academic Director Clinical Psychology, University of Oxford and Trust Head of Clinical Psychology at Buckinghamshire Hospitals, left his position as chair of . This special edition newsletter is dedicated to acknowledging his contribution to , reviewing what has occurred during the past 10 years and to thanking Paul for his significant and irreplaceable vision and leadership in making the respected multiprofessional organisation within SCI management in the UK today. Paul’s initial idea of a forum for those working in SCI to come together and develop the knowledge, skills, expertise and services, has steadily grown from those early thoughts. It is hard to think of without considering Paul, but he feels the time is right for him to step down and leave the organisation free to follow new directions. Whilst he will no longer be the chairperson of the organisation, Paul will remain accessible to the committee and it is hoped that he will continue to contribute to its progress throughout the next 10 years. More information about Paul and his involvement in the creation and growth of will follow later in this newsletter.

But how did start?

On Friday 6th June 1997 a working party was set up with a brief to establish a professional association for all the disciplines working with and on behalf of people with spinal cord injuries. The Multidisciplinary Association of Spinal Cord Injury Professionals

( ) was launched at the annual Guttmann Multidisciplinary Meeting on 12th June 1998. It had the following aims:

's prime objective is to provide a national professional forum to promote standards in clinical practice, foster research and encourage the development of health and social care services for people with spinal cord injuries. exists to enable all professions and grades of staff associated with the care and welfare of people with SCI, both within and outside spinal injury units, to articulate professional issues and concerns. On behalf of its membership, will also lobby service

10th Anniversary Special Edition MASCIP Newsletter SPRING 2009 Page 1 of 17 commissioners, healthcare providers and the Department of Health on issues of significant professional concern.

Who was involved? The first committee comprised the following members: Paul Kennedy, (chair), Anji Aykroyd, Ward Manager, National Spinal Injuries Centre, (Secretary), Kathy Dean, Senior Lecturer, South Bank University, Royal National Orthopaedic Centre, (Treasurer), Anne Seaman, Lecturer Practitioner, Duke of Cornwall Spinal Treatment Centre, (Membership Secretary), Brenda Bond, CEO, (SIA link), Paul Harrison, Clinical Development Officer, Princess Royal Spinal Injuries Unit, Dr Debbie Short, Consultant Midland Spinal Injuries Centre, (BASCIS link), Ruba Sivananam, Campaigns and Communications, SIA, Dot Tussler, Physiotherapist, NSIC and Katy Wood, Senior Clinical Nurse, Duke of Cornwall Centre.

The membership of the committee has changed over the years and thanks go to all those who have contributed from the inaugural committee named above and to Peter Mansell, Stephen Bradshaw, and Paul Smith, (SIA). Special thanks go to Sarah Hammond-Smith at Salisbury who set up the first membership database and much gratitude must be given to Linda Hall, (NSIC), who took secretarial and editorial responsibilities to a level that will always be admired.

Current

Committee The current committee comprises:

MASCIP COMMITTEE at 2007 Conference Angela Gall, (Chairperson) Anji Aykroyd, (Membership secretary) Claire Nixon, (Treasurer) Paul Harrison, (Webmaster) Dot Tussler, (Newsletter) John Borthwick, (SIA Link) Debbie Short Firas Sarhan Natasha Wallace,

Jenny Whittall

10th Anniversary Special Edition MASCIP Newsletter SPRING 2009 Page 2 of 17 Members of MASCIP have been involved and contributed to the Production of several Guidelines and standards that are available to download from the website. It is hoped that others will be developed by the membership.

RESEARCH Guidelines: currently available Links with UKSCIRN continue to foster awareness of and opportunities for current research initiatives in 1. Bowel Management SCI management and are publicised within the newsletter, encouraging members to participate in 2. Pain Management research within SCI

Much of the work of the first committee involved drafting and wording the constitution and formalizing objectives. This constitution remains the same today as then but now is due for a review as the main priority for 2009. The objectives established at the same time were:

 To provide a national professional  To collate and disseminate scientific community and esprit de corps for those and clinical information through working in SCl and to endorse existing publications, correspondence, committed staff, encourage new symposia and other seminars. professionals and support activities aimed at  To develop, maintain and promote high retaining staff. clinical standards of care and ensure  To assist those involved in the education and that client needs are comprehensively training of professionals in disseminating addressed. relevant knowledge to ensure the attainment  To encourage, support and promote of high clinical standards in all aspects of research and scientific endeavour practice. related to SCI.  To convene an annual, educational and  To foster knowledge on all aspects of scientific conference that will provide a forum SCI, particularly on psychological, for the exchange, discussion and review of clinical, environmental, social and all matters relating to the clinical psychological matters. management of SCI.  To provide the opportunity for professionals working with people with SCI to network and share expertise and experience.

Is achieving its objectives?

It certainly seems as though we are ticking most of the boxes, although there is always more that can be done. The membership of MASCIP after its 1st year was 305. Today it is over 700, with some from overseas. It is continuing to grow and its membership remains representative of those directly working with individuals with spinal cord injury, with the majority being

10th Anniversary Special Edition MASCIP Newsletter SPRING 2009 Page 3 of 17 those employed within the UK Spinal Cord Injury Centres. There still remains no membership fee. The website functions smoothly Links with the SIA enable mutual contribution thanks to Paul Harrison and provides access to and discussion of the political agenda and current topics, forthcoming conferences, past clinical situation, whilst facilitating newsletters, a list serve, published guidelines communication and information exchange as a and networking opportunities between multiprofessional organisation in its own right. members or professional groups. has always linked directly with A biannual newsletter provides members with SIA and BASCIS. Improved integration with direct communication with the organisation, BASCIS to establish SCI UK, as one whilst a designated link officer within each organisation for all SCI professionals is planned. spinal injury centre provides local contact. This will be essential in the build up towards 2012 and the hosting of the ISCoS conference An annual prize at each conference aims to within the UK. stimulate, promote and share best practice and provide recognition for those developing new More exciting work for the future initiatives in SCI management. One of ’s continuing strengths has been its annualcommittee! conference. Each year the conference theme reflects the needs and interests of its members. Evaluation of conference feedback and outcomes of delegate interaction sets the scene for subsequent conference themes and organisation. Perhaps review of the last 9 conferences is the best way to truly reflect what has been achieved during the past 10 years, and most significantly at this time acknowledge the considerable achievement made by Paul Kennedy in his role as the visionary, driving force and chair person of in both kicking off the organization, proceeding towards the objectives and developing the knowledge and understanding of a multitude of SCI professionals.

But who is he?

PROFESSIONAL BACKGROUND OF PAUL KENNEDY Professor Paul Kennedy is Academic Director of the Psychology Course at Oxford University, and Head of Clinical Psychology at Buckinghamshire Hospitals NHS Trust, with specific clinical responsibilities for the National Spinal Injuries Centre. He studied at the University of Ulster and Queens University, Belfast and has worked in clinical health psychology since graduating from his clinical training in 1984. He has established clinical health psychology services in a number of areas. He has published over 70 scientific papers for peer-reviewed journals and has been a contributor to a number of book chapters and has co-edited the Wiley Handbook of Clinical Health Psychology and is editing The Psychological Management of Physical Disability. He is an active researcher with a broad portfolio of research on adjustment, coping with chronic illness and disabilities and physical rehabilitation. He serves on the international editorial board of the journal of Clinical Psychology in Medical Settings, Neurorehabilitation and Rehabilitation Psychology. He was elected a Fellow of the British Psychological Society in 1999, served on the Committee of the Division of Health Psychology, and was made a Fellow of Harris Manchester College, University of Oxford in 2001. In 2002 he was awarded the Distinguished Service Award by the American Association of Spinal Cord Injury Psychologists and Social Workers and in 2004 Buckinghamshire Hospital Trust

10th Anniversary Special Edition MASCIP Newsletter SPRING 2009 Page 4 of 17 awarded him first prize for service excellence. He is currently external examiner to Queen's University, Belfast, and Trinity College, Dublin. Reference http://www.hmc.ox.ac.uk/clinicalpsychology/PaulK.html

1st Conference 9th November 1999, QE Conference Centre. London

This inaugural conference set the standard for future events, blending the spectrum of political concerns relating to SCI with clinical presentations and delegate interaction through multidisciplinary workshops. Margaret Hodge, then Minister of Disabilities, outlined the Governments plans to ensure a comprehensive approach to disability rights, emphasising the focus on access to work for people with disabilities. Presentations from various professions considered key challenges for SCI management in the new Millennium. The Clinical Director of NICE, Professor Peter Littlejohns, outlined its core functions and purpose. He proposed links between clinical and cost effectiveness and audit. Workshops covered 4 dimensions: acute care, rehabilitation, discharge planning and reintegration; aiming to propose standards for SCI treatment and rehabilitation. Themes for the day that emerged were: - Commitment to the SIA Charter - The need to put evidence into practice - Need to develop partnerships between consumers, professions and agencies - Need to support and train professions - Need to manage the older adult with a SCI - Need to ensure equity across the country - Need to ensure benefits reflect the reality - Need to develop a UK model system approach of the disabled experience - Need to propose a NSF - Need to develop clinical guidelines and protocols - Need to address multi-system impact of SCI

Following this conference the SIA wrote to John Hutton, Minister of State for Health, proposing the DoH establish national protocols to ensure healthcare needs of SCI people are met by applying the best practice methods on a national level.

PARTNERSHIPS FOR LIFE: THE INDIVIDUAL ACROSS THE LIFESPAN

A successful format of beginning each conference with a user perspective began at this conference. This has continued to the present. This has worked well in delivering the true message behind SCI rehabilitation outcomes. Users covered the issues of specialist centres,

10th Anniversary Special Edition MASCIP Newsletter SPRING 2009 Page 5 of 17 ageing with SCI, studying and employment, and practical research. Best practice initiatives such as; specialist awareness and skill development within referring District General Hospitals, audits of patient transfers from DGHs to SCI Centres, the use of goal planning, weaknesses and strengths of admission processes into SCI Centres, the personal and economic costs of work related SCI and ethnographic investigations into patient and professional discourses of patient participation in rehabilitation were presented by a variety of speakers. These were followed by keynote talks covering the psychological effects of ageing, mortality and morbidity in SCI. Focus groups involving delegates explored the psychological and medical aspects of ageing with SCI. These identified the following: - There is a need to differentiate between general ageing and disability issues such as benefit changes and the provision of equipment. It may be that uniting with larger more influential bodies such as RADAR or Age Concern will be beneficial. - There is a need to campaign and promote the avoidance and expectations on family members to be primary carers. - Social contacts and interests after retirement should be encouraged but should consider pre-morbid character and attitudes. - SCI Centres need to develop a comprehensive, workable and definitive strategy for supporting people ageing with SCI - Recognition of causes of death such as cardiovascular disease, cancer and other conditions such as obesity and stress should be considered in the long term management of those living with SCI Problem solving strategies to deal with critical life events should be developed as a component of rehabilitation - Ageing ‘experts’ should be encouraged within SCI Centres

Following the Users Perspective this conference debated the proposal for a UK wide trial of treatments for chronic pain in SCI and led to a working

party being set up to develop a guideline on pain management which would significantly coordinate effort between all UK SCI Centres to agree on: 1. Classification 2. Treatment methods and a pathway for their use 3. Commitment to research and development of new and existing treatments 4. Strategies for sharing/disseminating findings Subsequent speakers covered the topics of speech recognition systems used with high tetraplegia, bedbusting, reliability and validity of the Needs Assessment Checklist, development of national Protocols and guidelines for the assessment of spasticity, complications from delayed admission to SCI Centres and the importance of research and systematic enquiry to clinical practice.

10th Anniversary Special Edition MASCIP Newsletter SPRING 2009 Page 6 of 17 Keynote speakers included a presentation on the review of SCI Services in the South of England. An evidence-based review of recommendations was then sought, along with any evidence that could be provided by the conference delegates. Issues proposed by the South of England commissioners included: - Provision of model units - Contractual obligations for referral to SCI Centres - Defining lifetime care and service provision within and outside the SCI Centre - Support for development such as ageing, ventilator dependence, outreach, fertility and independent living - Investigating and addressing delays in admission and discharge - Recognition for the expertise of SCI Centres - Meeting the needs of children, the elderly or those with mental health problems and associated SCI - Effectiveness and cost effectiveness of different models of rehabilitation The concluding workshops used focus groups to explore: 1. The most valuable components of a SCI Service 2. How we can share what we do? 3. How can what we do be measured?

As previously, the theme of this conference built on the presentation, interest, feedback and developments raised at the previous year’s conference. The users’ perspective emphasised the significance of this conference topic for all delegates and the debilitating impact it had on an individual. Each of the keynote speakers presented original literature reviews and research findings. Pain at 6 months post injury is the best predictor of chronic pain, with perceived pain directly linking with reduced life satisfaction, reduced mobility, reduced social interaction and perceptible reduction in physical and mental health. The individual nature of pain and numerous classification schemes makes comparative studies and treatments difficult to evaluate. A taxonomy for pain after SCI was presented along with a unanimously supported proposal to establish a national approach to SCI pain management. This would aim to deliver a systematic improvement of clinical practice, an identification of clinical targets and the provision of adequate resources with the intention of the right treatment for the right pain based

10th Anniversary Special Edition MASCIP Newsletter SPRING 2009 Page 7 of 17 upon correct diagnosis. This has now been achieved with the recently reviewed Pain Guidelines. The interactive session with delegates comprised a nominal group technique considering what specific aspects of living with a SCI they would most want to change. The results identified issues of improved bowel and bladder care, access to resources, pain and ability to have choice as the most highly rated. Progress on the South of England Review and the development of 6 sub groups considering acute care, rehabilitation, community care, review and readmission, information and technologies was presented. The anticipated outcome of the review is a range of standards relating to the provision, measurement and funding of a quality model provision for a specialist SCI service.

The South of England Review had commissioned systematic reviews on the published evidence relating to certain topics: - Spinal fixation versus no fixation - Fixation undertaken within SCI Centres compared to undertaken elsewhere, - Delayed versus immediate referral to a SCI Centre, - Lack of admission to a SCI Centre, - Steroids versus non-steroids in the management of acute SCI. The findings found that available published evidence on these topics was weak and divergent, with a lack of academic quality research. There is a need to prioritise research focused upon key issues of measurable and reliable clinical outcomes to enable evidence based standards to be developed for audit of performance within SCI management. These standards remain available on the website.

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Bowel Management: An issue for everyone The theme for this conference was decided in the response to the nominal group exercise at the 2002 conference. In the interim time a working party has been establishing common core standards based on existing evidence and current care for bowel management, education and practices within SCI centres. This conference provided an opportunity to share their work to date. The personal experiences presented in the user perspectives highlighted the multi dimensional impact bowel management has on all elements of their lives and the intrusion that it places on privacy, dignity, spontaneity and independence. Keynote speakers presented the pathophysiology of the SCI bowel and how this influences function. Challenges, solutions and options of management were discussed within the context of personal lifestyle and individual choice, a flexible rehabilitation programme, professional controversy regarding the technique of manual evacuation,

10th Anniversary Special Edition MASCIP Newsletter SPRING 2009 Page 8 of 17 availability of care and physiological need. The continued development of national guidelines is needed to enable audit against recognised standards.

Patient safety issues of bowel management for people with SCI whilst inpatients at DGHs were presented by a representative of the National Patient Safety Agency. Investigation had shown that sufficient evidence existed to support the creation of a collaborative multi agency project team to produce a statement that would offer solutions to enable and support both SCI patients and NHS staff to ensure that appropriate bowel management is delivered irrespective of the environment within which the SCI individual is being cared for. The development of a statement will enable reporting of critical incidents and near misses to the NPSA.

Maintaining the theme of the day a subsequent presentation by the Back Up Trust presented a retrospective analysis of their activity programme. Positive outcomes on many dimensions were reported, with one respondent explaining, ‘if I can manage my bowels up a mountain, then managing them at home on a daily basis is no problem’

A further update on the South of England Standards enabled feedback on the completion of standards for services relating to the care and management of people with SCI. Salisbury, Stanmore and Stoke Mandeville were audited against these. Findings show an increase in delays in referral and admission, but the influence of polytrauma or lack of community placements was not considered. Inconsistent coding and referral criteria were highlighted and a future project to audit SCI incidence within A and E departments is planned. will continue to participate in this ongoing work. The conclusion of this conference focussed on staff retention. The successful nominal group technique was used to consider ‘what needs to be done to ensure the retention of staff within each SCI Centre?’ The findings highlighted good management (27%) as the main reason followed by professional development, team working and communication, working conditions, terms and conditions and job satisfaction.

Skin Management: A responsibility for

The multiple elements and consequences of skin management to all of us an individual with SCI were clearly presented both by users and professionals. The suggestion of implementing guidelines for skin care were proposed as a means of systematically assisting practitioner and patient decisions about appropriate healthcare for specific clinical circumstances. Multiprofessional working, data collection, review of existing knowledge, documentation, subsequent education and training followed by an implementation strategy for skin management will help the rehabilitation team to consider prevalence, aetiology, progression of healing, why some people get sores and others don’t, differences between an acute and chronic ulcers

10th Anniversary Special Edition MASCIP Newsletter SPRING 2009 Page 9 of 17 and classification. In turn this will enable monitoring and audit and review of education and resources. Consideration of the patient’s journey, local circumstances, and participation in active education is needed. Their adherence to preventative and treatment packages will be strongly influenced by psychological and social factors.

In the interactive component of this conference the delegates considered 5 top actions in the event of a pressure sore occurring and what needs to be imparted to healthcare professionals and users through the use of a nominal group technique. Findings identified the need for pressure relief within the lifestyle demands of the patient as the number one response, followed by ongoing assessment, a negotiated treatment plan of choice and identification of causative factors. The factors to be shared with healthcare professionals and users were education, experience, lifestyle choices and responsibilities of the patient. The importance of documentation and audit was seen as significant. In conclusion, it was proposed that pressure sores are unlikely to be completely preventable but the impact on each person who does develop them should be consistently minimised.

The conference concluded with a progress report on the National service Framework for Long Term Conditions was given along with survey results on the preferences of individuals with SCI in their ongoing management.

Rehabilitation: Whose job is it anyway? Users’ perspectives gave their experiences of rehabilitation; from a recent perspective and from a longer time frame, but describing exposure to both the SCI Centre and a DGH. Ongoing and evolving rehabilitation continues according to an individual’s needs and circumstances.

‘All rehabilitation patients bring a past; therefore personal routines should allow patient choice. I might be an expert in my body, but still need help and guidance.’

A presentation on the NSF for Long-term conditions outlined how it had evolved and its aim of encompassing the complete patient pathway, attempting to negotiate a balanced service provision for the future between acute medical management, hospital and community based rehabilitation and continuing care services, against a background of significant organisational change within the NHS. People with SCI represent a relatively small population whose health care needs are managed through a well organised network of regional specialist centres, however, the capacity of these centres cannot cope with an increasingly ageing population. This may mean strategies to increase current service provision or extension of outreach facilities. Mapping of current SCI services highlights a growing dependency upon generalist care providers for provision of appropriate care at all points along the patient care pathway. More definitive care standards, supported by

10th Anniversary Special Edition MASCIP Newsletter SPRING 2009 Page 10 of 17 training and specialist outreach support are needed to help manage people outside the SCI Centre network.

Spinal cord injured Rehabilitation The use of structured goal planning is recognised as Instructors on the staff at the Rehab being of importance within rehabilitation at the Midland station, Stockholm, highlighted the Spinal Injuries Centre. Evaluation of this system was benefits of a positive role model in undertaken to assess its effectiveness in the patients’ conveying knowledge and techniques success in goal attainment and the team’s ability to regarding everyday life. The idea of this deliver functional rehabilitation. Ongoing use of audit being implemented in the UK was has provided a means to carry out responsive changes to discussed as a potential opportunity. the goal planning process and so improve the clinical The familiar nominal group technique providedoutcome. interaction between delegates to explore aspects of rehabilitation that encourage patients to progress, consider barriers that can be tackled and promotion of life long progress beyond the realms of the spinal centre. Significant factors were identified as resources, communication, personal and psychological issues, independence, access, support networks and awareness.

The 1st debate ‘ People should have the right to be admitted to their local SCI Centre for their ongoing healthcare needs’

Debate was used to stimulate thought and reflection on this controversial topic with 2 speakers presenting stimulating argument for and against the motion. This motion was supported both before and after the debate with a slight shift being made following the presentations.

What really happens after discharge?

The user perspective included the impact of community living on the partner of someone with a SCI. The many ways that SCI can affect everyday life on the family were presented. Controversial issues of finances on support available were described. The keynote speaker presented a paper ‘Meeting the Challenges after Discharge: Developing a proactive, community-based model for health promotion and participation in people with SCI’. A ‘whole of life’ approach is advocated involving an integrated system and collaborative network of health professionals, service providers, peer ‘mentors’, clients with SCI and carers, which can offer flexible levels of service intensity and type, including inpatient, outpatient, ambulatory and community-based services with capacity for direct client contact/support, as well as service coordination, liaison, education and advocacy.

Experiences of managing individuals with ventilator dependent SCI, use of video-link technology as a tool in providing post-discharge support, and risk management in

10th Anniversary Special Edition MASCIP Newsletter SPRING 2009 Page 11 of 17 independent living were topics presented representing various elements of life after discharge.

2nd debate ‘People should have the right to be admitted to their local SCI Centre for their ongoing healthcare needs’

Again debate provided a lively way of stimulating thought-provoking discussion. The argument against this motion was the limited availability of SCI beds. If all ongoing healthcare needs are to be met by the SCI centres then can timely access to SCI centres for newly injured people be sustained?

The user perspective presentations for this conference differed from others in that the users were staff from SCI Centres. 2 presentations described experiences of 2 extreme but different types of challenging patient behaviour. The range of behaviours and abuse experienced by the staff and strategies used for its management were outlined. These thought provoking talks emphasised the difficulties and frustrations to which staff were exposed and raised the issues of staff training and how patients could best be supported within the SCI centre environment. This set the scene for the rest of the day.

The keynote address presented a review of factors associated with poor outcomes and evidence of successful interventions. The various manifestations of challenging behaviour such as anger, resentment, frustration, or depression, within rehabilitation settings is a major obstacle to effective working. Without proper management behaviour problems can adversely affect return to community living and can lead to a cycle of maladaptive interaction. The most effective form of intervention is a multidisciplinary team skilled in behavioural and psychological management methods to be applied in context. The Legal Perspectives of the Mental Health Capacity Act, 2005, were presented in a lively Professor Ikkos, from RNOH, presented manner. The MHC Act with the accompanying Code some work undertaken within the of Practice, provides the legal framework for an multidisciplinary team that developed an individual’s right to manage their own property and education and leadership training affairs, including the freedom to make decisions that programme and the Stanmore Nursing may be regarded as ‘unwise’ by others. The Assessment of Psychological Status, presentation controversially considered ‘When does (SNAPS) to enable nurses to identify and a challenging patient become a non-compliant respond to the emotions of in-patients patient? Who decides and what difference does it and their carers. make?’

10th Anniversary Special Edition MASCIP Newsletter SPRING 2009 Page 12 of 17 The afternoon gave the delegates a choice to attend workshops on various elements of challenging behaviour: - Bullying and Harassment of staff - Patients’ engagement in rehabilitation - Working with families - Clinical risk and the management of harm - Motivational Interviewing - Challenging Behaviour in Spinal Settings - Enabling nurses to meet Patients Emotional Needs

3rd debate ‘Abusive Patients should be discharged: Zero tolerance’ This was the most controversial and lively and emotive debate to date. Speaking for the motion was David Griffiths, a General Manager from the NSIC, Stoke Mandeville Hospital. His opponent was Maeve Nolan, Clinical Psychologist, National Rehabilitation Hospital, Dun Laoghaire. Both speakers presented stimulating and interesting points of view on how challenging behaviours could best be managed, based on their experience and understanding of the situation. However, Maeve’s self recognised ability to speak at speed gave her the edge in delivering more supporting information to her argument. Pre debate voting gave 49 votes for the motion with 29 against and no abstentions. The debate became wide reaching and did not strictly stick to the specific motion in question. Both speakers stressed the importance of having strategies in place for patient and staff support. Maeve highlighted the need to consider the potential high incidence of associated head injury in spinal cord injury, and that if this was the case, then the need for greater tolerance and support in managing those with challenging behaviours must be given. David highlighted the impact poor behaviour had on other patients and staff morale and how failure to strictly manage antisocial actions can lead to escalating difficulties. The need to impose rules for lawbreaking actions was agreed by both. With both parties agreeing on many aspects of the debate, there was perhaps less controversy than anticipated, but the arguments presented were thought provoking to all. The end of debate voting saw a change in view for the first time in the use of this forum. The final voting was 28 votes for the motion, 37 votes against and 7 abstentions.

AND FINALLY

This 2-day conference hosted at Twickenham and sponsored by the RFU comprised 4 symposia hosted by eminent key speakers and a range of papers incorporating the selected symposium themes. Opportunity for professional interaction and socialisation at a conference dinner enhanced the experience, whilst the chance to hear Dame Tanni Grey-Thompson describing moments from her life as a wheelchair user, world-class athlete and mother was both enlightening and entertaining. Over 150 delegates attended the conference and feedback was positive. Details of the presentations will be distributed to delegates via memory sticks courtesy of Fletchers Solicitors. Our 10th Anniversarythanks go Special to the Edition RFU MASCIP for their Newsletter generous hospitality SPRING 2009 and the opportunity Page 13 of 17 to use their impressive venue. Symposium one: Long term management of SCI Keynote speaker Peter Wing presented ‘Care of the Adult with Acute SCI during the first 72 hours’. He outlined how a clinical practice guideline had been developed through a 12-step process and extensive 5-year literature search followed by independent review and grading of the evidence. Emerging trends, directions for future research and challenges faced by SCI centres were presented. The guideline can be downloaded free via www.pva.org. A second keynote speaker, Fin Biering-Sorensen, presented International Standards and Data sets. This highlighted the importance to both national and international clinical outcomes of collecting consistent and relevant information according to recognised standards. Commitment to ensuring that basic, extended and international SCI data sets are recorded is essential in facilitating worldwide comparisons regarding injuries, treatments and outcomes. He reported the need to disseminate this information and commitment as widely as possible. As soon as new International Data sets are developed they will be published on the ASIA website www.asia-spinalinjury.org.

Symposium two: Rehabilitation and Clinical Management 7 papers covering a vast range of topics from Trans cranial magnetic stimulation through to colostomy, arm cranking, diabetes mellitus, stress ulcer prophylaxis, length of stay and wheelchair provision, were presented. The session concluded with Fiona Barr presenting work undertaken by the SIA on ‘Preserving and Developing the National SCI Service’. This project is directed to

10th Anniversary Special Edition MASCIP Newsletter SPRING 2009 Page 14 of 17 examining the evidence base required to support the SIA strategy and model of care, establishing a national collaborative network to design and implement consistent evidence-based working practices for specialist SCI Services and provision of evidence to support and guide the work plan of the newly formed All Parliamentary Group on SCI. Analysis of preliminary results were presented for discussion. Symposium three: Prevention and Health Promotion The keynote speaker, Mike DeVivo, presented evaluated trends and characteristics of newly injured and prevalent cases of SCI from a database of 43,784 patients treated at model systems of SCI care since 1973. The following has been identified:  Mean age at injury has increased 9 years since the 1970’s  No change in 4:1 ratio of males to females  Falls are increasing as cause of SCI as more injuries occur in the elderly  Increase in high level tetraplegia and ventilator dependence  Slight reduction in AIS A injuries  Nursing home discharge is increasing with increased age at time of injury  Mean age of prevalent population is only slightly higher than mean of newly injured  Prevalent cases are less injured than new incident cases  Life satisfaction and physical independence are greater in those more than 30 years post injury than those injured more recently  High mortality rates in those injured after the age of 60  Those reaching older ages will typically have higher degrees of independence and overall good health

Symposium four: International Rugby Board and Rugby Football Union This symposium focussed on the management of SCI in rugby and considered injury prevention, research and attitude aspects, risk and practical support and was delivered by key medical leads from the international world of rugby.

The conference concluded with positive feedback and thanks being given to the RFU.

10th Anniversary Special Edition MASCIP Newsletter SPRING 2009 Page 15 of 17 And so what has achieved in the last 10 years?

- Increased membership - International membership - Members from the Link scheme - Development of Clinical Guidelines - Affiliation to BSRM - Information - Liaison with UKSCIRN - Production of its own website - Support to National initiatives - Lobbying - Representation on national committees and forums - Contribution to service developments - Dissemination of SCI standards and guidelines - Closer liaison with BASCIS and plans for the future - Networking and communication between professionals - 10 respected scientific conferences, Become the professionals’ organisation for SCI in the UK It seems that objectives set at its inception are being met

The vision and initiative stated by Paul Kennedy has reached maturity. His professional and personal contribution to its success cannot be underestimated.

10th Anniversary Special Edition MASCIP Newsletter SPRING 2009 Page 16 of 17

The future direction for will build on this foundation. As we celebrate the 1st 10 years we can be proud of achievements to date and enjoy the hospitality of the RFU at ‘The Fundamentals and the Future of

Spinal Cord Injures’ conference. ’s 1st 2 day conference!!!

A final big farewell and thanks to Paul and all those who have contributed to ’s its success.

10th Anniversary Special Edition MASCIP Newsletter SPRING 2009 Page 17 of 17