Lymphoedema Network
Northern Ireland
NOTES OF BOARD MEETING HELD ON: 17th June 2014 AT: 10.30am IN: Seminar Room 3, Cancer Centre
Present:
 Attended
 Apology received
Ms Clare McGartland (Chair)
Ms Jane Rankin
Dr Graeme Crawford
Mr Joe Magee
Ms Jill Hamilton
Ms Pippa McCabe
ISSUE
 Ms Lynne Whiteside
 Ms Gillian McCollum/Jill Lorimer
 Ms Elaine Stowe
Ms Tara Murphy
 Ms Carolyn McKeown
Ms Myra Perrot
 Ms Sharon Dean/Ms Irvonae Glassey
CORE POINTS FROM DISCUSSION
1.
Welcome and apologies as noted
2.
Minutes from December 2013 agreed.
JR to upload to website.
Ms Peggy Moore/ Mr Ian McPherson
SMT NHSCT- Karen McMaster
representing Megan West
SMT WHSCT – Paul Rafferty
SMT BHSCT – Gillian Traub
SMT S HSCT – tbc
SMT SE HSCT - Margaret Moorehead
ACTION
JR
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Lymphoedema Network
Northern Ireland
Leads
3.
3.1 Continued rising incidence
and prevalence rates
Vacancies held by the small
trust teams
3.1 Both incidence and prevalence rates are continuing to rise causing
additional pressures to all teams. Prevalence is currently more than double
anticipated by the CREST 2008 report and the 2004 DHSSPSNI Review
(which agreed the funding for the current staffing levels).
Referral rates are continuing to grow year on year. (as per attachment)
Maternity leaves with no backfill are causing problems in BT and ST. CMcG
informed leads that each trust receives 50-60% of wte funding to pay for
backfill. Leads to take this info back to service manager. There is however a
problem with the lack of lymphoedema trained staff to fill these acting up
positions. Training will only be agreed if person has this is PCP which is
difficult to predict one year + ahead of vacancies.
CMcG agreed to ask Michelle Tennyson how this can be managed and to
advise service managers re mat cover and issues regarding education/skills
required for small specialist teams.
CMcG
ST has 1 long term sickness. Another long term vacancy has just been
recruited. NT and WT teams stable.
3.2 Discharge practice
3.2 All teams have developed improved shared care skills for the
management of this long term condition. Traditionally, all patients would have
remained on a caseload recognizing the lifelong nature of the need. The
teams have been developing increased skills to encourage and support the
use of more patient self-management. In line with Transforming Cancer
Follow Up and other LTC model, patients who are recognised as stable and
ably skilled, are discharged to the care of their GP for future review and
garment provision. The GP can refer the patient directly into the service if
required (other than due to lack of concordance).
The teams are also completing joint working with DN and TVNs.
The project is currently developing a new discharge pathway with audit
embedded to record re-referrals back into the service.
Project Team
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Lymphoedema Network
Northern Ireland
4.
5.
ISSUE
CORE POINTS FROM DISCUSSION
ACTION
Commissioning arrangements
for the future
No change regarding commissioning arrangements. CMcG continuing to
follow up the issue re where to place the network:
- Cancer
- Vascular
- LTCs
JM agreed to support Clare with these discussions.
CMcG
5.1 Trust Reports
5.2 LNNI Board Report
5.1 Combined Board Reports (to be circulated with minutes)
- BT, SET and ST all with vacancies and having to modify treatment pathway
to aim for 9 week AHP access target.
- All team posts in ST have been reduced across the board for savings –
despite the LNNI funding being ring fenced. CMcG to discuss with Michelle
Tennyson and Service managers.
-All teams continuing with education and development work for team and
referring groups including undergrad levels.
JM
CMcG
JR
5.2 LNNI Board Report
The report was agreed by the Board. The Board congratulated the project
team on all the progression made in 2013/14. JR to place on website.
JM suggested a new cross border initiative which might mean opening
services across Ireland. JM to provide further information regarding same.
JR
JM suggested a strategic review of the 2004 document with up to date data
and recommendations. JR to take forward.
JR/CMcG
JM suggested involving the CMO at the next family day autumn event.
JR/CMcG to investigate.
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Lymphoedema Network
Northern Ireland
6.
Clinical Practice Discussion
6.1 Pilots of activity programme (WT and BT). Both showing high dropout
levels. BT in partnership with the Active Belfast fitness services. Pilot to be
reviewed and re-run autumn 14.
6.2 DVT/Doppler work continuing slowly. JR meeting with lead GP and
relevant acute leads to progress. Potential for a new “Leg Clinic” which would
review our discharged patients re Doppler and safely fir garments plus review
TVN discharges. Supported as a pilot in BT by GP lead and Co-director
nursing. To aim for an LCG bid.
BT Lead
JR
6.3 Slow progression but continuing to work towards education programme
and info provision.
6.4 Board agreed in theory that this was necessary in rare cases and out of
area cases should be considered via GP. Leads to keep a case study of
each case put forward to enable future planning.
6.5 Two Deep Oscillation machines are already in use and getting mixed
reviews (from fantastic effect to no effect). JR to order 2 more machines.
6.6 Two genetic clinics were held in April/May 14 to begin gathering more
genetic information regarding the regional caseload (primary patients). An
information base has been developed with international guidance. There are
no recognised paediatric courses at the moment, so skills are learnt from
experienced others. JH and JL to attend Foldi clinic later in June and will
present a case study re same; learning to be shared at next project team
meeting.
6.7 Continuing to populate Lymphdat. A new internal electronic data set is
being established. LNNI has been approached regarding possible transfer of
anomymised data onto it. Board agreed in principle but recognised workload
involved.
Leads and JR
JR
JL and JH
JR
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Lymphoedema Network
Northern Ireland
7.
8.
Bariatric project
Progress updates:
8.1 Complex Clinics-role of
surgery
8.2 Research projects
Data collection on-going and reflecting that our pt population has a much
greater BMI score that the UK population I general. LNNI working with BLS
now at national level to embed pathways and continue to develop tools to
support staff.
8.1 (as per 6.4)
The February clinic was cancelled as we had no non-surgery patients for the
list; the clinic is therefore now an annual event. However surgery is now an
acceptable and effective treatment (lymphoedema liposuction) albeit only
available in the UK in Dundee and by one surgeon. He will accept out of area
referrals for lymphoedema but not lipoedema. In principle, the Board agreed
to suggest this as a treatment option for the 5-6 patients per year that is
would be suitable for by GP referral. The low numbers make it not plausible
to consider creating a regional surgical service. Leads to construct a basic
case study for each patient referred by GP; JR to collate and report at board
meetings.
8.2
- Pre/post surgery screening project with editorial team for publication.
- Psychology student has taken a year out, so this study is on hold again
- Orthopedic study being written up and outcomes refined.
JR
Leads and JR
JR
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Lymphoedema Network
Northern Ireland
9.
Additional work streams
9.1 Education
- JR has submitted requests to AHP ECG for consideration; this has already
funded the Casley Smith update (March 14), however a request for all leads
to attend the BLS conference has not been decided to date. This is
considered a key education requirement for the leads to ensure that services
are being continually developed in line with international research and
models.
Project Team
- on-going generic and specialist education
- undergrad multi-professional project stalled due to UU ICT issue but should
be on timetable for winter 2014/15.
9.2 Communication
- Continuing work with BLS. Now also invited to consider joining ILF as a full
member (currently associate). Agreed by Board to follow up.
-New “return to work” leaflet completed and available to use.
- 3 ministerial questions. Two were liked to cross team (TVN) work and one
mainly to services for lipoedema.
- LW developed a leaflet for care assistants working in homes; this has been
shared with all trusts for use.
9.3 PR Campaign
- 1 presentation at ILF (June 14) and 2 potential at BLS (Oct 14).
- Continuing liaison with LTCANI and attending party conferences as part of
this.
10.
AOB
JR
JR
All leads to ensure the following message is included on all Primary care
letters: “ Lymphoedema should be coded as G86”
Leads
Following the ILF conference the team has become aware of some new Apps
being developed for both physio (exercises) and lymphoedema. The Board
agreed for the project team to develop a partnership with the University of
Glasgow to investigate taking forward.
Project Team
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Lymphoedema Network
Northern Ireland
11.
Date of next meeting
Tuesday 9th December 2014 (10.30am), The Larkin Room, Post Graduate
Centre, Belfast City Hospital.
All to note
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