Neurological Alliance of Scotland. Executive Meeting Tuesday 9 th September 2014 MND Offices, Firhill, Glasgow at am

Transcription

1 Neurological Alliance of Scotland Executive Meeting Tuesday 9 th September 2014 MND Offices, Firhill, Glasgow at am Present:- Craig Stockton MND (Chair) Tanith Muller Parkinson UK (Vice Chair) Anissa Tonberg Epilepsy Scotland Gerard Gahagen Quarriers Scotland Epilepsy Centre Rebecca Duff MS Society Scotland Stephanie Fraser Bobath Scotland Ewan Dale ME Association Dorothy Chisholm The Dystonia Society Candice Dillen National Coordinator (NAS) Irene Cameron Administrator (NAS) 1. Welcome Craig welcomed and thanked everyone for their attendance. 2. Minute of meeting held on 4 th June 2014 and matters arising The minutes were accepted as an accurate record. No report had been circulated from the NNAG subgroup tasked with reviewing the NNAG strategic plan. Tanith had not attended the meeting but undertook to obtain and circulate notes. OMG Condition Specific MS group has now met twice. Rebecca to circulate notes of both meetings. Voices The Steering Group has met and a workplan completed. This will be submitted to the Scottish Government later in the week. Candice to upload final strategic plan onto the website. Irene to circulate Doodle Poll for December & March Exec meetings and June AGM. Tanith to circulate notes of meeting on NNAG strategic plan review. Rebecca to circulate notes of the two MS group meetings. Candice to submit Voices workplan to SG. Candice to upload final copy of strategic plan onto website. Irene to circulate Doodle Poll for future meetings. Page 1

2 3. Executive Committee Three expressions of interest have been received from Mhairi Chrystal (CHSS), Mhairi O Keefe (Leuchie House) and David Mils (PSP Association). A maximum of 12 members may serve on the committee at any one time. It was noted there is no formal process for inviting members to join the Executive Committee and after discussion it was agreed clarification of expectations should be codified and an induction pack produced for new Executive Committee members. Craig undertook to circulate all governance paperwork in preparation for the December Executive Committee meeting. Craig to prepare and circulate governance papers. Irene to include Governance in agenda for December meeting. In the meantime, all expressions of interest to be held over and Craig to contact the parties and advise accordingly. Craig to contact interested parties. 4. National Neurological Advisory Group Update Interim reports. The 88 criteria have been circulated to the Health Boards and all should have reported back, however, only seven received to date. Various sub group meetings had been held included Parkinsons, Epilepsy and MS. Rebecca had not attended the MS meeting and Paula had chaired in lieu. The group had reviewed the seven responses. Concerns had been raised about how the forms had been completed and who was inputting the information. Without all responses it was difficult to pull out common themes. Gerard reported the Epilepsy group had agreed to hold three meetings and these had now taken place. The meetings had all been well attended with a grood spread and mix. Access to services at night time is a particularly urgent concern as well as outpatient appointments. Two health boards are looking at trialling a new system. The group has also reviewed all the criteria. Access to medications and acute services was highlighted and the group is taking learning from the Parkinsons model. Although the meetings have now concluded there is work to do on recommendations, including offers of what could be done and actions to be taken. The sign guidelines are to be reviewed and hopefully transferred over to the NNAG. Parkinsons held its first meeting which had been reasonably well attended. It is hoped to recruit additional members to the group including a pharmacist, NHS manager and GP. Areas of concern include integration issues, duplication with community based teams vs specialised service providers, co-morbidity and management. Also access to surgery. These to be codified on paper and discussed further at the next meeting. The results of Page 2

3 the mid year review are sketchy due to the quality of responses received to date. A meeting of the Chairs of the NNAG had been held at which concern had been raised on the quality of information received from the Health Boards. The NNAG will now go back to the Health Boards and seek clarification and further information. The NNAG and NAofS had submitted a proposal to HIS regarding the review of standards. The conference scheduled for 23 September, however, has been cancelled. No information available on the approval of the NNAG budget. 5. Neurological Voices Update The second meeting of the Project Advisory Group had been held at which a proposed workplan had been presented for review and approval. Some suggestions had been offered and the plan was signed off for submission to Scottish Government. Voices Workplan to be submitted to SG. The only training included in the workplan is for Borders. Follow up to take place in Western Isles in September. Jan is still in touch with Glasgow & Lothian but no recruitmen is required at this time. She is also keeping in touch with Forth Valley and Tayside. Moving forward it is anticipated Jan will continue to support the Voices however Executive Committee members will be asked to provide assistance at NNAG and OMG meetings. It was noted Jan has taken on a freelance position with the Scottish Book Trust in addition to her position with the NAofS. It was noted there is Voices funding until March 2015 but the project is unlikely to be funded thereafter. It was agreed Jan should continue in post and that the Voices position should be reviewed in January. Voices Project to be reviewed in Jan Policy Sub Group Candice reported. Consultations The policy subgroup had met over the summer. It was agreed to submit responses to two consultations:- The Review of Care Standards and the Organ & Tissue Donation (Scotland) Bill. It was agreed to circulate future consultation responses around the Executive Committee for review and comment prior to formal submission. Consultation responses to be circulated to Exec members for review prior to submission. Brain Awareness Week 2015 Aileen McLeod MSP has accepted an invitation to sponsor BAW Page 3

4 Parliament are not considering requests for meeting rooms or events until mid September. The focus of BAW 2015 will be showcasing a leaflet for patients providing support and advice following first consultations. It is proposed to hold an open meeting of members in November and involve Voices. From this video clips and soundbites will be obtained and these will be included as part of the Parliamentary event. 7. Strategic Plan Discussions had been held to identify areas to package as projects and linking them to the SG s 2020 vision and route map. It is the intention to seek funding for at least the remainder of 2014/15 but hopefully for a further three year period. Candice and Craig had met with RS McDonald who had confirmed they do not fund umbrella organisations, but indicated they may fund projects. After some discussion it was agreed to submit the strategic plan now to Scottish Government. If funding is not provided it may be necessary to consider seeking support from MSPs via Parliamentary questions. Craig to resubmit Strategic Plan to SG. 8. Finances Budget reports for the National Co-ordinator, Administrator and Voices Project were tabled, all showing expenditure in line with budget NNAG funding is still held by the NAofS. Irene to seek clarification that all expenses regarding the telephone bill are now clear. Once this is resolved it was agreed the balance funding should be transferred to the ALLIANCE. 9. AOB It was agreed to hold the Members Open Day on Wednesday 26 November in either Edinburgh or Glasgow. Approval was given for Candice to attend a meeting of European Neurological Alliance groups in Brussels on 23 and 23 September. It was agreed to confirm dates for Executive Committee meetings for December and 2015 as soon as possible. Irene to seek clarification on telephone bill and then transfer all remaining NNAG funding to the ALLIANCE. Candice to seek venue. Candice to attend Brussels meeting. Irene to circulate Doodle Poll. 10. Date of Next Meeting December 2015 to be confirmed Irene to confirm Page 4

5 Notes of Strategy Meeting held on Wednesday 9 September 2014 at 1.00 pm MND Scotland Offices, Firhill, Glasgow Present:- Craig Stockton MND (Chair) Tanith Muller Parkinson UK (Vice Chair) Anissa Tonberg Epilepsy Scotland Gerard Gahagen Quarriers Scotland Epilepsy Centre Rebecca Duff MS Society Scotland Stephanie Fraser Bobath Scotland Ewan Dale ME Association Candice Dillen National Coordinator (NAS) Irene Cameron Administrator (NAS) Apologies:- Dorothy Chisholm The Dystonia Society Craig noted the purpose of the session was to give some thought to the future activities of the Neurological Alliance of Scotland, in particular, over the coming 12 months, and invited members to offer comments and suggestions. Candice commented that RS McDonald have indicated they would be happy to fund projects rather than generic core work of the NAofS in particular any project which would bring together a number of members. Areas suggested for adding value:- Engaging with medical schools Overview approaches to symptoms such as Pain, Sleep, Degenerative, Cognition, Transition child>adult; adult>old-age Candice also suggested there may be value in grouping the membership by symptoms; denerative; paediatrics and considering projects on that basis. NAofS distinguishing USPs from the NNAG:- Awareness; Diagnosis; Care; Information Development funding for scoping the membership would be useful. Setting up workstreams within the NAofS might lead to greater engagement with the membership. Gerard suggested undertaking a mapping exercise to highlight national variances may be a worthy exercise. Page 5

6 Learning and Sharing Events provide an opportunity to gather views from the wider network; from people with an interest in neurological conditions as well as members of the NAofS. Interest Groups (topic specific) may generate ideas for potential projects; from which the NAofS could seek funding to take forward. Actions:- Candice undertook to share the list of members and survey responses and to look at topics and potential groupings. Candice undertook to discuss with colleagues at the upcoming Brussels meeting and report back on any ideas arising from networking sessions. Executive Committee members to give consideration to possible workstreams All to give consideration to potential new members for the NAofS. Page 6