Area 062 Gyle Square 1 South Gyle Crescent Edinburgh EH12 9EB Telephone: Fax:

Transcription

1 National Services Division Minutes Area 062 Gyle Square 1 South Gyle Crescent Edinburgh EH12 9EB Telephone: Fax: Scottish Differences in Sex Development Managed Clinical Network Steering Group Meeting Monday: 30th October am-12.30pm Laboratory and Medicine Building, Southern General, Glasgow Attended: Dr Miriam Deeny, Consultant Gynaecologist, NHS Greater Glasgow and Clyde (Chair) Dr Rebecca Crawford, Consultant Clinical Psychologist, NHS Greater Glasgow and Clyde Dr Aparna Sastry, Consultant Obstetrics and Gynaecology, NHS Greater Glasgow and Clyde Mrs Katie Clayton, Programme Manager, NHS National Services Scotland Miss Kirsty McGill, Programme Support Officer, NHS National Services Scotland Video Conferencing: Dr Paula Midgley, Consultant Geneticist, NHS Greater Glasgow and Clyde Apologies: Dr Chris Driver, Paediatric Surgeon, NHS Grampian Mrs Claire Lawrie, Programme Manager Information Management Service, NSD, NSS Dr Ruth McGowan, Consultant in Clinical Genetics, NHS Greater Glasgow and Clyde Mrs Barbara Wardhaugh, Endocrine Nurse Specialist, NHS Lothian Dr Martina Rodie, Clinical Lecturer, NHS Greater Glasgow and Clyde Mrs Liz Blackman, Senior Programme Manager, NHS National Services Scotland Dr Stuart O Toole, Consultant Paediatric Surgeon & Urologist, NHS Greater Glasgow and Clyde Mrs Jayne Forrest, Midwifery Manager, NHS Grampian Ms Louise Copeland, Patient Representative, NHS Tayside

2 1. Welcome, Introductions & Apologies Dr Miriam Deeny welcomed all to the meeting. Round the table introductions were provided and apologies noted as above. Dr Aparna Sastry was formally welcomed as a member of Steering Group who can offer a link with fertility and cover area of transition for children with DSD. Dr Miriam Deeny highlighted the current constitution of Steering Group and a gap in representation from midwifery/neonatal disciplines. Dr Deeny took the group through the minutes from the last steering group meeting and annual performance review and the group confirmed they were an accurate reflection of the meeting. 2. Data Plan ISD Surgical Data: ISD were in the process of providing the surgical data requested for DSDs but required clarification on coded diagnoses opposed to procedures. Dr Deeny confirmed ISD should provide diagnoses for inguinal hernia and orchidectomy, and double episode of hypospadias repair.isd would also be requested to provide figures for diagnoses of MRKH, CAH and XY Gonadal Dysgenesis. Mrs Clayton would clarify the latest position on surgical data and ask the steering group to confirm the scope. Psychology Provision: Dr Rebecca Crawford provided an update on scoping of current provision of psychology for DSD in Scotland. It was clarified that in the case of NHS GG&C funding for psychology provision was not specifically ring fenced for DSD and was only routinely offered for patients who are due to undergo plastic surgery. It was further clarified however that clinical psychologist Dr Ruth Hinds clinic time is ring fenced for paediatric DSD patients. Dr Crawford was continuing to scope for adult provision and would ask Dr Ruth Hinds to provide the same for the paediatric provision. Dr Paula Midgley suggested contacting Dr Katy Auckland, clinical psychiatrist for Lothian as there is intention to put forward a proposal for psychology provision in NHS Lothian. There is momentum to address psychology provision following a statement in the DSD-LIFE Report Summary from the European Commission Community Research and Development Information Service (CORDIS) that there should be psychology offered to all paediatric patients with DSD. Waiting times for psychology appointments will be benchmarked as part of the ongoing scoping exercise. Action: Dr Midgley Dr Crawford will be attending a UK wide meeting for clinical psychologists in Bristol in February and will share this event information and output with the steering group. Once there is clarity on the current provision of psychology for DSD across Scotland the network will approach directors of planning to support any recommended improvements.

3 I-DSD Registry: The group highlighted that a combination of time to input and accessibility to system was main issues for the registry not being utilised and therefore had limited data to report on. Dr Deeny will contact Dr Jillian Bryce from the office for rare conditions in Glasgow to clarify how to access the database and Mrs Clayton will ask the group to confirm if they have been able to progress with input of cases on the registry. Action: Dr Deeny/Mrs Clayton 3. Stakeholder Engagement The group highlighted how the network engaged males and the need for male inclusion as part of patient events. Dr Aparna Sastry raised that between ages years there is gap in engagement where males in particular do not want to talk. It was suggested a way forward was to focus teaching at a younger age to support trying to keep routes of support open when it becomes necessary to seek further support. Dr Miriam Deeny will consult Dr Stuart O Toole/Dr Chris Driver on their approach to engagement with males. The network will develop and issue a survey via the website inviting male DSD patients to give feedback on how they would wish to interact with services. Action: Dr Deeny Action: SDSD PSO Dr Paula Midgley summarised it would be valuable to signpost to referral pathway options for boys. Dr Deeny would be speaking at the SPEG educational event on 25 th January 2018 and would deliver a survey asking endocrinology services what the needs are of adolescent males and what existing services are available. Dr Deeny requested that SDSD are visible with a stand at the SPEG event. Dr Sastry will develop a poster for display in GP surgeries aimed at males with DSD to signpost to network and relevant services. Patient Event - Edinburgh June 2018: Action: Dr Deeny The group discussed the option of having a similar event to the previous Girls Day but open it up to boys attending as an extension of the gap in engagement. Although there were concerns of having combined day it was agreed to adopt the same programme as Girls day but make presentations shorter and then have separate focus groups for discussion for boys and girls. The venue has been booked for 9 th June which would hold approximately 40 attendees however Mrs Clayton will contact venue to see if there was additional break out area to facilitate separate sessions as above. Dr Aparna Sastry will ask Sarah Crighton to attend specifically to facilitate discussion on male fertility. Mrs Clayton will contact Ellie Magritte of DSD Families about promoting the event. 4. Pathway Development The latest draft of the adolescent referral pathway was sent to Dr Paula Midgley with comments from the group and others consulted on the content. The draft will be revised by Dr Midgley and will be sent to the network members for final sign off before January. The final version will be presented at the SPEG meeting on 25 th January Dr Midgley advised there may need to be changes to the first tier tests highlighted in the neonatal referral pathway and Dr Midgley will liaise with Mrs Clayton to make these changes in the document.

4 Action: Dr Midgley At the previous steering group individual care plans were discussed as a resource to provide to patients on discharge from specialist services which would support primary care clinicians in understanding the specific conditions when consulting DSD patients in future. Dr Rebecca Crawford highlighted the hospital passport system for patients with long term conditions running across sites in Scotland as a good starting point and would share with the steering group. Dr Paula Midgley suggested that patients should be asked to provide input on drafts of this passport through focus groups facilitated by the network. Mrs Clayton would incorporate this objective into the work plan. 5. Educational Symposium Dr Rebecca Crawford confirmed that a male patient representative is happy to deliver a talk on the day however she would confirm the time he was available and the order of day can be adapted to accommodate availability. There will again be a segment on MDT cases. Mrs Clayton will request for network members to submit cases for discussion. The event will be publicised through the Royal College of Gynaecologists, SPEG, SDSD, BRITSPAG and related networks and speakers. Mrs Clayton will issue the draft programme and save the date in November. 6. Patient Information Leaflets MRKH: Barbara Warhaugh had provided some additional comments on the leaflet which were approved. Dr Deeny would add a sentence concerning a communication issued through the network on cervical screening and no cervix exclusion. On completion the final version would be shared with the steering group for sign off and uploaded to the website. Attending the Gynaecology clinic - What to Expect?: Dr Sastry to make some minor amendments and issue for final approval to the steering group, the leaflet will then be uploaded to the website. Leaflet for extended DSD Clinic: Dr Martina Rodie will be asked to draft this leaflet with a draft to be brought the next steering group in January Educational Presentation Videos Action: Dr Rodie Dr Driver to update the steering group on progress. Dr Aparna Sastry will look into an E- learning module for adolescent females. Action: Dr Driver, Dr Sastry

5 8. AOCB SDSD 2017/18 Work plan: The group highlighted changes to be made to the work plan objectives. Mrs Clayton will make these changes and share with the steering group for sign off. Report - I want to be like nature made me : Dr Midgley advised that she had been made aware of a report which may be of interest to the steering group and Dr Midgley would send to Mrs Clayton to circulate to the steering group. SDSD Programme Manager Cover: Katie Clayton will be starting maternity leave on 16 th November and will be replaced by Martina Mungall who is due to start in NSD on 21 st November. A specific programme support officer is yet to be assigned to SDSD, after 16 th November all requests should be submitted to Martina Mungall or to the SDSD generic mailbox nss.sdsd@nhs.net 9. Date of next meeting: 29/01/2018 A room to be booked at QEUH for the next steering group meeting