Minutes / Area 062
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Subject: SPAIIN Steering Group Minutes
File ref: K:\07 Health Support Ser\Specialist & Screening\NMCNs & NMDNs\Networks\SPAIIN\Steering Group\Mins\2015-01-13
Author: Robina Collins
Date: 2015-01-13
Present:
Professor Jacqui Mok Consultant Paediatrician (retired), Chair
Mrs Liz Blackman Senior Programme Manager, NNMS, NHS NSS
Miss Robina Collins Programme Support, NHS NSS (Minutes)
Dr Conor Doherty Lead Clinician, NHS GG&C
Dr Rosie Hague Consultant Paediatrician, NHS GG&C
Dr Laura Jones Consultant Paediatrician, NHS Lothian
Ms Lynne Williamson Children and Families Project Worker, Waverley Care
Miss Alison Murray Programme Manager, NHS NSS
Ms Vicki Price Immunology Nurse Specialist, NHS GG&C
Mr Gavin Moir IT Programme Support, NHS NSS
In attendance:
Angelene Barton-Cunnell Family Link Worker, Terence Higgins Trust (for agenda item 13)
VC:
Ms Lorraine Currie Child Health Commissioner, NHS Grampian
Dr Helen Mactier Consultant Neonatologist, NHS GG&C
Dr Adilia Warris Consultant Paediatrician, NHS Grampian
Apologies:
Dr Sarah Cooper Consultant Obstetrician, NHS Lothian
Dr Rhona Hughes Clinical Director, NHS Lothian
Dr Margaret Peebles Consultant Paediatrician, NHS Tayside
Ms Sarah Thomson PID Parent Representative
Kate Templeton Virologist, NHS Lothian
1. Welcome, Introductions & Apologies
Professor Mok welcomed all to the meeting. Round the table introductions were provided. Apologies noted as above.
The group were updated on the recent handover in Programme Support. The new contacts are as follows Alison Murray (Programme Manager), Robina Collins (Programme Support Officer) and Gavin Moir (IT Programme Support Officer).
2. Minutes of last meeting
The minutes from the last Steering Group meeting which took place on 23rd September 2014 were approved by the group.
3. Matters arising
The following matters arising are not covered on the agenda:
· Annual Report
Dr Doherty advised of a meeting which took place with Catriona Johnson, NSD. Miss Murray had reformatted the report, which was submitted to NSD. NSD are content with the annual report which can now be uploaded to the SPAIIN website, and will be circulated for information.
Action: Miss Collins
· Patient annual reviews
Dr Warris advised that there are ongoing discussions re annual reviews in Aberdeen. The next Telemed clinic is to take place on the 31st March 2015. The group agreed that this meeting would be used to discuss any outstanding issues with annual reports in Aberdeen and Inverness. Dr Hague and Dr Warris are to invite Helen Freeman to the Telemed clinic scheduled for 31st March 2015.
Action: Dr Hague / Dr Warris
· Genetic testing and PID
Miss Murray advised that any requests for Genetic testing should be submitted through local genetics laboratories. Should they be unable to provide these, and the tests must be done out with the UK, test submission forms can be requested from NSD, who should then be able to approve funding for non-UK tests.
Dr Hague advised of problems with a recent test request. Miss Murray reiterated the National Commission Service should fund the tests, but would revisit this with the commissioning team given the concern raised. Dr Hague is to send details of the genetic test which was refused in order to review the method of payments for tests.
Action: Dr Hague
It was agreed to discuss this further under agenda item 7.
4. Data and Information
Dr Doherty reminded the group that all annual reviews must be completed and entered into CAS by end of April 2015. Any issues with completing annual reviews on CAS should be reported at the earliest opportunity, so that issues can be resolved to ensure that CAS is up-to-date.
A CAS information Governance document was circulated in advance of the meeting, which had been shared with Dr Mike Winter, Medical Director NSD, and Caldicott Guardian for CAS. Dr Doherty relayed comments from Dr Winter, who advised that it would seem to be relevant to share anonymised information with the research projects noted.
Prof Mok noted that the paper had mentioned both “core data” and “some data”, and asked Dr Doherty to provide clarification on the definition of both of these in an updated version of his paper.
Action: Dr Doherty
The group discussed the use of CAS for research projects and agreed the following:
· Clarification is needed on what is meant by using CAS
· Clarification is needed on what meant by using identifiable data
Dr Hague asked how this related to people who have not consented to being on CAS, as their data is often sent to research projects without going through CAS. The group discussed where information was being sent from clinicians to research projects, and agreed that as this was coming from clinical notes, rather than CAS, therefore the question about sending data from CAS may not be relevant.
Dr Doherty agreed to circulate the email from Dr Winter and the CAS consent form, so that these could be discussed, and the consent form could be updated with consent to use the data for research projects.
Action – Dr Doherty to circulate email from Dr Winter and CAS consent form
Action – all to inform discussion by email
It was re-iterated that the use of any data from CAS needs to be submitted to and approved by the Steering Group.
5. Education and Training
· Education Event – 27 January 2015
The Education Event is scheduled to take place at Stirling Management Centre on Tuesday 27th January 2015. This has been popular, and registration is expected to be closed after the Steering Group meeting.
Miss Murray highlighted that non clinical people have queried about attendance and added that registrations would be checked to ensure clinical staff only in attendance.
Action: Miss Collins / Miss Murray
The group agreed that this event was not appropriate for non clinical parties but highlights the need for future events tailored specifically for patients and families.
It was highlighted that promotions should be more specific in future to reduce the risk of attendance by non clinical staff at clinical events.
The nurses’ education day has been scheduled for 24 February 2015 at RHSC Edinburgh. Victoria Khan has been organising this with support from NSD.
6. Patient , Parents and Carers / Communication and Engagement
· Support Groups for different conditions
The network has limited representation from patient groups, and it is proposed that a sub group is established for PID and HIV patients/parents/carers to ensure that patients have a voice in the network.
Parent, Sarah Thomson has asked to step down from the Steering group which will result in a gap in representation from PID which should be filled. Miss Murray agreed to seek representation through the creation of a patient engagement sub group involving charities representing both HIV and PID patients. The group discussed whether setting up separate subgroups would be beneficial, and Ms Williamson highlighted the importance of ensuring that setting up separate subgroups does not result in a reinforced stigma but rather the patient representative groups should all work together. It was agreed that a single subgroup be set up in the first instance.
Action: Miss Murray
The SPAIIN website was discussed briefly but considered to be a low priority task at present.
· MiTuu Surveys
Dr Doherty reported that an iPad with MiTuu is currently being used to survey education feedback from patients and families. Linda Watson had carried out MiTuu surveys at Glasgow clinics, and will work with Edinburgh staff to roll these out at Edinburgh clinics.
In order to allow the survey to be carried out in both Edinburgh and Glasgow simultaneously, it was queried whether it was possible to obtain more than one iPad to speed up the survey process. Mr Moir thought this was possible, the challenge being the collation of results on different iPads but would investigate this further.
Action: Mr Moir
The use of paper based surveys may provide an alternative option. Miss Murray and Dr Doherty are to explore this further as confidentiality needs to be considered.
Action: Miss Murray / Dr Doherty
7. Pathways of Care
· Whole genome sequencing of patients with PID
Information has been received from Genomics England regarding planned research, and the possibility of Scottish patients being included. Dr Hague advised that ongoing discussions are taking place, two different studies are underway including a Bridge study, a meeting is planned and an update will be provided to the group in due course.
Dr Doherty informed the group that the University of Cambridge want to construct a cohort of 150,000 patients with rare diseases, PID being one of them. The group are to consider whether it would be appropriate to take part in this and the practicalities involved as the university would have to go through each individual Health Board with an aim to recruiting 20 patients from each. This would mean that adult services would also need to be included in order to make this target number achievable. Dr Doherty advised the benefits to taking part in the cohort included the expertise it brings and cost savings. The group agreed that a provisional interest should be registered with the Cambridge group and that Dr Doherty discuss further with adult services in Scotland whether a combined approach might be useful.
Action: Dr Doherty
It was identified that there was a clear requirement for a guidance document and Genetic Testing Policy to be developed which should include:
· How we make a diagnosis
· How we prioritise testing
· How is testing done
· Who is genetic testing offered to
Action: Dr Hague
The group discussed and agreed that entering genetic diagnosis onto CAS could be beneficial if possible and would need to be explored.
Action: Mr Moir
· PID Transition
Dr Doherty reported that PID transition is not clearly defined and there is a clear requirement to investigate the clinical services being offered to adolescents. Lessons learned previously show that an indicator for the transition process needs to be identified and that an interim PID transition indicator be adopted namely, patients over 15 years of age, with hypogam, should be asked whether they have met with the adult immunology consultant who will take over future care. In future formal indicators can be developed.
It was highlighted that there is currently no adult immunologist in Lothian. Dr Jones has been highlighting this at various forums and offered a job description. If this is not resolved within NHS Lothian, Dr Jones has advised that Dr Aileen Keel (Chief Medical Officer) will be approached if necessary to progress this requirement.
· HIV Transition
Initial meetings have recently taken place to discuss proposals of how to progress with transition work with teenagers and young adults moving from the care of SPAIIN clinicians to adult HIV services.
Focus groups are being established to determine the pros and cons of the transition experience which Ms Williamson is to facilitate. It is hoped that this will result in a better understanding of any gaps in terms of support throughout transition.
Ms Williamson advised the group that Waverley Care have been approached by Edinburgh University who are currently researching a project on transition. A survey targeted at 16-25 year olds who have gone through the transition process recently is being developed which seeks to investigate what it is like growing up with HIV in Scotland today. The project is to be supervised by Edinburgh University and applications are open from January with an aim to starting in April 2015.
Action: Ms Williamson
· Epidemiology of PID
Documenting the epidemiology of PID was highlighted as a large piece of work to be carried out. Dr Doherty noted that this work might be of interest to a junior doctor, and may lead to publication. Dr Jones noted that there may be interest in Lothian to support this, and agreed to advise Dr Doherty and Miss Murray if there was. Epidemiology resource would also be required, and Miss Murray agreed to contact HPS to seek assistance for this project.
Action: Dr Jones / Miss Murray
Mr Moir suggested the use of tableau as a means to map the geographical research, and any data, and agreed to provide support if this was required.
· DiGeorge Care Pathway
Dr Jones advised that this pathway has now been drafted, and will be ready for presenting to the Education Event on Tuesday 27th January 2015.
· HIV Perinatal Care Pathway
Dr Doherty had circulated the HIV Perinatal Care Pathway which will be presented to the Education Event. Dr Mactier noted that the neonatal feeding link was not leading to the correct guidance.
· HSCT Pathway for PID Patients
Dr Hague developed a HSCT pathway for PID patients, which was circulated in advance of the meeting. The group were asked to feedback by Friday 16th January 2015.
Action: ALL
8. Quality and Outcomes
· 2014-15 and 2015-16 Workplans
Miss Murray circulated draft workplans for 2014-15 and 2015-16 for discussion. Dr Doherty advised that the workplans had been drafted identifying the priorities for the network.
Following discussions regarding genetic/genomic testing, it was agreed that a genetic testing strategy for PID patients should be developed and entered onto the workplan.
Action: Dr Hague / Miss Murray
Prof Mok asked whether there should be plans / named leads in place for each of the tasks, as they were all currently marked as “N” under the “plan available” column. Miss Murray advised that there would be some tasks that would not require plans, and that where one should be developed that she would do that and share with the responsible lead. It was agreed that named leads would be noted on the workplan next to each task.
Action: Miss Murray
· Continuous Quality Improvement
Dr Doherty advised that NSD has appointed Dawn Moss as Clinical Lead for Quality Improvement and Education, who will work with the networks to use quality improvement (QI) methodology when implementing changes. Mrs Moss is working with Dr Doherty and Miss Murray to look at how the QI methodology can be used to support SPAIIN work.
9. Budget