Scottish Disorders of Sex Development Clinical Network Executive Group Meeting

Transcription

1 National Services Division Area 062 Gyle Square 1 South Gyle Crescent Edinburgh EH12 9EB Telephone Fax Minutes v1.0 Subject: Author: Date: Location: Scottish Disorders of Sex Development Clinical Network Executive Group Meeting Liz Blackman Monday 26 th October2015, 11.00am 12.30pm K:\07 Health Support Ser\Specialist & Screening\NMCNs & NMDNs\Networks\SDSD\Steering Group\Mins\ Present: Professor Faisal Ahmed, Consultant Endocrinologist, NHS Greater Glasgow and Clyde (Chair) Mrs Liz Blackman, Senior Programme Manager, NHS National Services Scotland Dr Miriam Deeny, Consultant Gynaecologist, NHS Greater Glasgow and Clyde Ms Margaret Kelman, Programme Manager, NHS National Services Scotland Dr Ruth McGowan, Consultant, Genetics, NHS Greater Glasgow and Clyde Dr Paula Midgeley, Consultant Neonatologist, NHS Lothian Dr Mike Winter, Medical Director, NHS National Services Scotland Apologies: Mr William Anderson, Consultant Plastic Surgeon, NHS Lothian Dr Rebecca Crawford, Clinical Psychologist, NHS Greater Glasgow and Clyde Mr John Telfer, Consultant Plastic Surgeon, NHS Greater Glasgow and Clyde Mrs Barbara Wardhaugh, Endocrine Nurse Specialist, NHS Lothian Dr Martina Rodie, Clinical Lecturer, NHS Greater Glasgow and Clyde 1. Welcome and apologies Professor Ahmed welcomed everyone to the meeting, noting that he was chairing on behalf of Dr Crawford, who was unable to attend. The meeting would include the annual review as well as being a routine executive group meeting. Apologies were noted as above. 2. Matters arising from previous minutes Minutes were agreed as an accurate record of the meeting. It was noted that Ms Kelman had facilitated some debate around an outcome of the review away day, regarding better communications with other staff groups. Dr McGowan has offered to be part of teaching and, together with Ms Kelman, has been building links with the Neonatal MCN Managers. National Services Division Gyle Square, 1 South Gyle Crescent, Edinburgh EH12 9EB Director Deirdre Evans

2 3. Annual review of network Previously, the format for annual review had been a performance meeting with the lead clinician however; opportunities for change and improvement were limited within this meeting, so a new format for annual reviews was being trialled during 2015 to include the steering groups within the performance review process. It was noted that in addition to the performance review, the network is also undergoing a national review and this created an additional component to discussions, however, it had been agreed to progress with the new mechanism for review. As Medical Director, Dr Winter noted that he had a responsibility across all national networks. The support to the networks was going to be enhanced with the recruitment of an additional medic, due to take place shortly. a. NNMS Overview Mrs Blackman provided background on the National Network Management Service (NNMS) that had become operational on the 1st April She explained that the remit of the NNMS was to provide each network with an appropriate level of resource to meet requirements consistently. The service was more than half way through a two year period of organisational design and development, that would also ensure that any new networks would be established quickly and effectively; developing a package of resources to meet the needs of and enhance the overall output from each network. The mechanism was a programme of development that focussed on four work streams; Communication and engagement Governance Service planning and continuous quality improvement People/ education Mrs Blackman concluded by outlining the anticipated benefits for SDSD; improved links, improved effectiveness and robust quality assurance and better support for Lead Clinicians. One of the problem areas identified for networks was information management. To this end, Mrs Blackman was pleased to inform the Executive Group that an Information Management Service Lead had been recruited and would be supported by a Business Analyst who should assume post shortly. The intention was to provide support to all networks in the management of information, regardless of whether the Clinical audit system was used or not. Mrs Blackman explained that in addition, Dawn Moss had been appointed as Lead clinician for Quality Improvement and Education. Within her remit was the development and implementation of a programme of development for lead clinicians that would focus on leadership, Management and Quality Improvement. She was also in the process of arranging a programme of regular meetings for peer support as well as coaching and mentoring sessions. There was discussion on the job description for the NNMS Programme Manager. There was a query as to whether this was an effective job description and it was noted that the job description is generic for the programme manager role. It was highlighted that links going to the network and the wider services were not as clear as the lines of governance and accountability upwards. 2

3 It was recapped that there had been expectations of the SDSD Programme Manager which were not suitable or sustainable. And whilst it was agreed there had to be some localisation of network requirements, NSD was funded to provide the networking elements. Programme Managers are appointed to support networks, most commonly two, and will therefore have links to multiple lead clinicians. Support must be provided against a generic job description. The job description exists to support NSS and managers to understand the demands of the role. It was confirmed that the resource allocated was 0.5 wte programme manager and 0.3 wte programme support officer. The needs of the networks will of course fluctuate, and there will be a varying demand across networks throughout the year. Members stated that as SDSD was looking for a new clinical lead, the support available to them must be clear and transparent. It was agreed this would continue to be the case, and that support provided to networks would be consistent across NNMS. The job description was criticised for not accurately reflecting how the programme manager engages with the lead clinician. It was suggested that the simple insertion of network into several key places in the document would resolve this misunderstanding. Action: Mrs Blackman b. SDSD Highlights Looking at the annual report, the network has been focused on the specialist end of care. There is a need and an expectation that support is provided to a wider range of clinicians, who may only meet a DSD patient once in a career. This support from a national network can often improve the quality of care provided locally exponentially. Professor Ahmed was asked to highlight key achievements from the past year. It was noted the review has been a key achievement and engagement form network members had been good. The Away Day in 2015 was very useful and there was helpful discussion and clarification on what areas the network should now focus on. The online forum which arose from this was excellent and it should be further explored for future use. The Away Day also served to highlight the pressure that a small number of patients and families are being put under. When the same parent was asked to support network activity regularly, they can burn out. The network needs to look at how to supported and retain parents throughout the process of involvement. The annual study days remain popular and well attended. Dr Crawford concluding her tenure as lead clinician was another highlight and SDSD now needs to focus on attracting a new lead. Discussion followed on the pathways of care known to the network. SDSD have not felt central to the rare diseases work which has been going on nationally. Most DSD cases present to paediatricians and neonatologists and the focus has been on improving the care with this co-hort. However, it was noted that adult women sometimes return to service in their thirties and there is a variable service from clinicians by the time they re-engage. Triggers for return to service include sexual function. Examples of presentation via primary care were discussed. It was noted that whilst the majority of cases will be picked up with visible anomalies, a small number of cases will present in later years with non-visible malformations. 3

4 It was agreed there was an opportunity to learn from other networks. There is a need to ensure that someone searching for information would find the SDSD network. The NNMS has the opportunity to increase visibility of the networks, and has access to staffing resources to assist with this and ensure information is appropriate. It was noted SDSD had already ensured there was good content from the perspective of an expert it was questioned if this needs to be simplified for the non-expert? It was agreed there was a need for primary care practitioners especially health visitors to be engaged to ensure they can provide support when baby with a DSD returns home. The SDSD leaflets were considered to be of use here, however there needs to be a more robust method of promoting access to the information. For the wider GP community, there have been excellent links made with a range of clinicians who have undergone training packaged by the network. There was concern that, whilst there maybe desire to do many things, there was a lack of resource available to SDSD. As an example, the well-received congenital anomalies day had never been repeated and could be a consideration for the future. It was agreed the workplan for next year would have to be realistic and achievable. It was highlighted that the network cannot take responsibility for service delivery. Networks are commissioned to provide support in areas of patient and family engagement, education, provision of best practice guidelines, and collection and analysis of data. There was clarification that the request for presence at the clinic was to ensure clinical staff were meeting the SDSD Programme Manager. The NHS Boards will carry on taking responsibility for delivery of the service. However, it was highlighted that Executive Group meetings should be varied so that they tied in with clinics in locations other than Glasgow. The concern of sleeping members on the group was also raised and it was agreed this should be addressed. This had been discussed previously and the lead clinician and programme manager should be visiting centres and invigorating appetite for involvement in the network. There was opportunity for re-launch. If there was an issue of individuals not being given protected time to engage, this is something Dr Winter can influence. Dr Winter thanked SDS for their efforts, acknowledging the efforts of a small few. Any implied criticism was intended as support for improvement and the network should proceed with. 4. SDSD Review It was noted that the review would provide direction for a new clinical lead. There is clear support and commitment from NSD and NNMS to ensure the recommendations highlighted in the report are progressed. There is a need for support from the clinical community to work with the management service to implement the recommendations. To achieve this would require a new clinical lead. The recommendations were discussed in greater detail. It was clear there would be central support for the process and that key recommendations would be identified and prioritised. There are several elements of the recommendations that could be adapted from activity in other networks. Not all activity should fall on the shoulders of the Lead Clinician. Following the SDSD review it was thought that the current Executive Group should be rebranded Steering Group, to bring it in line with other NMCNs and more accurately reflect the network s status; agreement was reached to this end. In addition, to encourage 4

5 maximum participation, it was suggested that the location of the Steering Group meetings should be rotated around the country. 5. Lead clinician post It was noted that had been no notes of interest and no applications for the role of SDSD Lead Clinician and suggestions for how to attract a new Lead were discussed. It was agreed to clearly identify what support would be provided on a day to day basis. Dr Miriam Deeny expressed an interest in taking on the role of lead clinician. 6. Patient checklist Dr Crawford had developed the patient concerns checklist however; an updated version was not available for the meeting. Feedback indicated that the checklist should be sent out with the clinic appointment letter as a concern over a lack of privacy in the waiting area was highlighted.the group expressed an interest in piloting the checklist, but also expressed some concern that it was lengthy and that in other areas, ICE (Issues, Concerns, and Expectations) is in operation and might be more useful to consider. From a paediatric perspective, GGC were happy to pilot the checklist in the January clinic if ready. It was agreed this would be pursued with Dr Crawford. This would be circulated by and piloted in the January clinic. Action: Ms Kelman 7. Update on Comms & Engagement a. Online forum Following the online forum exercise in September 2015, the feedback from those who did interact found it useful and wished it to continue. It could work on an ongoing basis, identifying dates when it could run. There had also been suggestions of having a clinician online to discuss how to manage on a day to day basis. However, there was concern that no single clinician could deal with all possible concerns. It might be more useful to state a response time for clinical queries. How participants were selected was outlined. They were identified from the CAS, those patients who had addresses. Those who responded positively were included. There was a wider concern about the use of social media. It was agreed the forum was a positive development and should be further explored and supported. It was suggested that there would be value in having a forum feature as an engagement resource for the SDSD network for the future. Mr Anderson was investigating the feasibility of having this feature incorporated into the new website on Wordpress. b. AIS Leaflet Ms Deeny pooled together information on Androgen Insensitivity Syndrome which was subsequently produced in a leaflet with the new SDSD footer incorporated. A draft was shared with the Executive Group for comment. There was concern there was too much of a female-focus and this should be addressed. Two leaflets should be produced, one for girls and one for boys. Professor Ahmed would produce the boys leaflet. 5

6 Action: Professor Ahmed 6

7 There were suggestions made on re-wording and this was noted for further work to the leaflet. Detailed feedback would be received and an update produced. Action: Members, Dr Deeney and Ms Kelman It was agreed the publication date should be added to the leaflet. The leaflet should also be trialled with patients. Action: Mr Anderson It was suggested that current leaflets held by SDSD should be similar in format to the AIS format; however alternative logo colours could be discussed at the next Away Day. c. Postcard Mr Anderson had produced a first draft version of the SDSD postcard; this was shared with the Executive Group for comment. It was agreed the postcards would be circulated more widely for comments, which would be taken on board and updated. The postcard would then be submitted to NSS graphic design team for comms approval. Action: Mr Anderson d. Website Ms Kelman and Mr Anderson agreed they would have the redesigned website ready by January 2016 incorporating new information and redesigned SDSD footer. NSS graphic design team to provide updated versions of SDSD footer. 8. Any other business SDSD Symposium The next SDSD Symposium will take place on the 11 th March Previously suggested topics to cover: Fertility Base on papers and activities in Scottish DSD along with a general theme Suggestion for health board not overly involved in SDSD. Focus on female DSD Mr Anderson had provisionally booked the Scymgeour Hall in Dundee University for and a second option in the Ninewells awaiting confirmation at a cost of It was agreed to continue to pursue a venue in Larbet and Dr Ruth McGowan agreed to take this action forward. Action: Dr McGowan 9. Date of next meeting 25/01/2016 was set as the date for next steering group meeting, to coincide with the Glasgow clinic, as yet other dates were unknown, and however there was opportunity to look at:- June Aberdeen Autumn Edinburgh It was agreed this would be progressed. Action: Ms Kelman 7