1. Apologies for Absence

Prof Jonathan Cole, Prof P Kennedy, Prof S Eisenstein, Dr Roger Fitzwater, Dr Anne-Marie Bagnall, Lone Rose

 2. Welcome

TM welcomed new members, Professor Stephen Eisenstein (unable to be present), Helen Young, Dr Shakeeb Moosavi, and for his first face-to-face meeting, Prof Michael Craggs.

2a.  Minutes of Last Meeting

1. Item 2.  BC asked if anyone is picking up the action, suggested by PK, to look at initiatives outside of the NIHR. PK has agreed to do this.
2. Item 3.  Jeremy Fairbanks is UKSCIRN’s local expert champion as Chairman of Thames Valley R&D. He stresses the importance of recruiting numbers to clinical trials.
3. BC requested that fewer acronyms are used in the Minutes. 

 3. Scientific Committee

TM reported that Jonathan Cole welcomes Shakeeb Moosavi (SM) to the Scientific Committee.

1. TM went through the ideas that had been previously circulated and asked for names of experts who could be approached by SM for help.  It was agreed that it is important for one person to take lead responsibility for a project and to be able to liaise regularly with SM.  For Pressure Ulcer suggestion Clive Glass was suggested with Jane Nixon for peer review purposes. 
   Action:  SM to contact them and he will also discuss with an associate Sara Booth (Cambridge, Addenbrooks, Macmillon)
   MC said that ISRT or the Medical Research Council have good systems which could be used as a guide to develop a standardised peer review process.
   Action:  MC to ask permission from ISRT to circulate their pro-forma.
2. Proposal suggested by Angela Gall who has made it clear that she does not want to lead.
   Action:  MC will discuss this with Angela Gall to see if she can suggest another lead or whether she will reconsider her position.
   Action:  If there is no resolution from MC’s discussions then SH will circulate the proposals.
3. Exercise and immunity proposal.  Greg Whyte was suggested by SM for peer review.  In addition an earlier application to UKSCIRN came from Greenwich University and the lead might be approached as a peer reviewer if appropriate.

Action:  SH & SM to make contact with external peer reviewers.
Action: PT to email SM with suggestions for peer reviewers

1. Pros and Cons of Early Mobilisation proposed by WEM
   Action:  WEM/SH to discuss further.

There are other proposals to follow by the 1/10/10 deadline.
Action:  SM to discuss with JC.

There was further discussion around the merits of funding support from research nurses and therapy groups to work with SM without going to grant application, although it was agreed that some projects may need to go to grant.

UKSCIRN Funding for MASCIP Older Adult Guidelines

The Scientific Committee was unsure of the level of these guidelines to enable change in clinical practice.  It did not recommend support to the Board.  It was agreed that UKSCIRN will not support funding for the Guidelines.
Action: TM/SH will write to the proposer with the decision.

UK Participation in trials funded by Rick Hansen

TM and SH met with Rick Hansen’s representative, Colin Ewart, to discuss the various current research proposals.  Although protocols were requested, the Rick Hansen Institute provided only brief synopses (circulated to the Committee).

The Scientific Committee showed interest in the Upper Limb and Pressure Ulcer Initiative projects but would like more information before they feed back any recommendations.
Action:  SH to see if it is possible to get more information on the two projects of possible interest to UKSCIRN.

 4. Executive to consider recommendations from Scientific Committee

This item was covered in the above discussion.

 5. National Spinal Cord Injury Strategy Board & I.M. Subgroup Committee Update

UKSCIRN does not have a Commissioner currently on its Executive Committee but it was thought that it would be more worthwhile if SH was to sit on the National Spinal Cord Injury Strategy Board (NSCISB) which represents Commissioners and other stakeholders for the development of a specialised clinical care pathway for the management of spinal cord injury. SH described their purpose and her involvement on a Sub-Group Committee for Information Management which has been set up to plan, design and implement a national web-based database for use by the SCI Centres in England and their commissioners.  

There was a discussion on the requirements for a national database of spinal patients.  Clive Inman originally tried to collect these data with great difficulty and WEM suggested the possibility of UKSCIRN offering the Commissioners this service for research purposes.
Action:  Helen Young sits on the board of Commissioners and she and SH will keep UKSCIRN abreast of developments.

 6. UKSCIRN Membership

National Commissioner.  There is no UKSCIRN commissioner member but now that SH sits on the research procurement committee (see above) it is probably no longer necessary.

Executive Committee Chair.  TM’s tenure is up at the end of March and he hopes to have a handover period. There was discussion as to the procedure which TM would like to be completed by the end of November 2010.  The Chair position should be nominated from the current Executive
Action:  All members to be e-mailed asking if they would like to nominate another Board member to stand for Chair, then recommendations to be discussed by teleconference on 10^th November.

Academic Member.  Angela Gall has proposed David Ash at Sheffield as a MASCIP member.  The current MASCIP member, Lone Rose, is stepping down.

It was agreed that David Ash should be invited and that it is very important for any new members joining the Executive Committee to be willing to work to encourage people to work with UKSCIRN.

 7. Project Updates

The Impact and Effect of Vertebral Artery Trauma in Spinal Cord Injured Patients

40 patients have been recruited so far and the project is now on the portfolio.  Participation has been requested with Sheffield and Oswestry and thanks to WEM were expressed for his help.

Understanding the well-being and care of persons with spinal injury in an isolation ward as a result of pressure sores

This project is funded to £6000 and has recruited over half of its requirements. It is run by Loughborough with participation from Stoke Mandeville and Stanmore.

Improving Outcome after Spinal Cord Injury by Monitoring and Reducing High Cord Pressure

This project is funded to £59,000.  The start date was delayed until August 2010. A research nurse has been recruited through St George’s to act as trial coordinator and funded through their CLRN..

A randomised trial of rectal stimulants for neurogenic bowel management after spinal cord injury

This project has been closed due to lack of recruitment.

The impact of a stoma in bowel management after SCI

This project is ongoing. 
Action: SH will clarify if recruitment is ongoing or has closed and will circulate the most recent short report written by Maureen Coggrave.  SH to clarify with Maureen the follow-up period following stoma.

Incidence of Lower Limb Fractures in Chronic SCI

Ebba Bergstrom has promised a final report by December 2010.  In all there were 1794 respondents and two data sets.  UKSCIRN would like to see these published but with Ebba probably retiring, some help may be needed with this.
Action: SH to find out what Ebba’s plans are for submission. SM to offer help to EB.

Changes in wheelchair provision to people with SCI in the UK following the introduction of the voucher scheme

Lone Rose submitted a report in May 2010 and there is ongoing dissemination.  TM suggested that UKSCIRN should consider closing the project as it has been running for a long time.

 8. Guidelines

Management of Upper Limb (proposed lead, expert panel)

PT reported that he has been trying to get names for an expert panel and hopes to feed back to the Committee within the next 2 weeks.  MC suggested that PT could contact Paul Taylor, from Ian Swain’s team in Salisbury, to get the benefit of their experience.

 9. Finance

TM expressed thanks to Denise Johnson for all her work in persuading Thames Valley to fund UKSCIRN. 

• DJ reported that the total funding is £143k, £124k of which is available, £55k of which is designated for research nurses. The existing project money is also protected. 
• There was a discussion about research nurses funded by the NHS.  MC reported that there is one at Stanmore and it would be useful to do an audit of research nurses around the Spinal Units.
  Action:  SH to investigate.
• £1000 has been reserved for the website but the fear was expressed that the NHS may stop this as there are too many websites within the NHS.

 10. Website Update

1. SH reported that the UKSCIRN website www.spinalresearchnetwork.orghas been updated and should be picked up by Google searches.  It has links to the key spinal organisations such as BASCIS, SIA, ASPIRE, INSPIRE and the UK Spinal Injury Centres.
2. SH has investigated website project recruitment which is an option.
3. TM asked if any companies would be willing to sponsor the website costs which amount to about £200 per annum.  BC suggested that SH’s time spent in updating the website should also be included in the websiste costs.  WEM suggested that we should approach the charity SPIRIT for sponsorship.
   Action: SH will investigate charity sponsorship.
   Action:  BC will contact SIT – Spinal Injuries Together.
4. UKSCIRN does not currently have much activity to populate the website.  We would like people to register with the website and it was agreed that it is important to have two-way links with the key spinal organisations, eg BASCIS, SIA, etc.
   Action:  SH to email the Committee for suggestions of activities/information to populate the website. 

 11. Methods of encouraging Health Professionals to collaborate in multicentre trials

There was a discussion about the possibility of forming focus groups to generate research but MM pointed out that a Health Professional’s working week is now so defined by the NHS that it is difficult to fit in any other activities.  It was suggested that a slot at the next Guttmann meeting to promote UKSCIRN would be advantageous.  WEM agreed to help with this as the next meeting will be held in Oswestry.
Action:  SH to write to WEM requesting a slot.

 11a  Charities Report

BC gave a brief report of the difficulties Charities are facing in the current economic climate.  The Back-up Trust is working with Aspire looking at support for families.  They are also looking a re-employment with the SIA and are running a trial course within the Fitness Industry.
Action:  BC to prepare a summary report from all the Charities following is next meeting and circulate it to the Executive Committee.

WEM reported on SPIRIT which is a low-budget charity mainly involved  in training people who are interested in learning how to work with spinal cord injuries patients.
Action:  WEM will circulate the web address for SPIRIT when it is available.

 12.

1. Future Meetings – please add these to your diaries
2. Teleconference on Wednesday 10 November, 13:00-14:00, to discuss SM’s investigations and the nominations for the Chair position.
3. Teleconference on Wednesday 12 January, 13:00-14:00.

 13.

1. Any Other Business
2. WEM recommended that UKSCIRN should be represented on the Executive of ISCoS.  There was a discussion about whether UKSCIRN should team up with MASCIP and BASCIS as an affiliation in order to be represented on the ISCoS Council – the requirement is a minimum of 100 people.
   Action:  MM, as next Chairman of BASCIS, to discuss at the next SIT UK meeting.
3. PT asked if there was a charities arm to UKSCIRN as he has been asked by people if or where they could donate money for spinal injuries.  TM replied that there is no charity arm to UKSCIRN and that money would have to be donated to one of the Spinal Injuries charities.