Lead Clinicians Group

Minutes from the Lead Clinicians Group Meeting
20/05/2009
St Mary's Hospital, Manchester.

Present:
Maggie Barrow, Jackie Cook, Carol Gardiner. Carol Chu, Bronwyn Kerr, Angela Brady, Angela Barnicoat, Alan Fryer, Tessa Homfrey, Ajoy Sarkar, Michael Wright, Mandy Collins, Carole Brewer and Cyril Chapman
Apologies: Sarah Smithson and Shelha Mohammed

Discussion
Service Designation
Local discussion and negotiation is required to decide what type of service will be required for different populations. It is not in the interest of SCG not to designate services and the groups will meet with services to discuss what is achievable and what is not with a plan and timescale to achieve objectives.
There is a new version of the document which has gone out to Commissioners. At Gencag there was a comment by Jackie Westwood that if more than one relevant individual was in the consultation, they could be counted as separate activity. This was being clarified.
The staffing levels in the new document have been changed. The Consultant staffing levels per million population are to be 2 consultants per million plus one Cancer Consultant..

Joint Clinics
HRG 4 will have a combined clinic tariff for multi-disciplinary clinics. The service which gets the tariff will be expected to arrange the clinic and pay for any genetic testing which arises from that clinic

Clinic Costss
Some services are being asked and are paying for peripheral clinic space. The cost can be from £50-£100 per clinic. Sheffield are having to pay for clinic space and stated the importance of being clear what you are paying for and asking the clinic co-ordinator to break down costs so the service only pays for what it needs e.g. not a clinic nurse but only the room and reception for meeting and greeting patients. Services that use phlebotomy services at peripheral clinics are not being asked to pay for them. They may be asked to take samples back to the central hospital

PAS
Still only about 7 services on PAS and all but GOSH have to double enter data (Liverpool, Manchester, GOSH, Kennedy Galton, St George’s, Bristol and Exeter and KGC are working towards this but not on PAS at moment) –

Telephone Contactt
Unfortunately there was no representative from the Royal Marsden to discuss how they are currently managing their cancer patients. Liverpool, Kennedy-Galton, Sheffield, Nottingham, Birmingham and Southampton use telephone contact and at KGC if they do a telephone clinic to patient lasting 20 mins or more and then a letter then they count that as a telephone appointment. Michael informed the group that despite what is stated in the Service Designation document there is a move to create a non face-to-face tariff as it is realised by the commissioners that it is not helpful to bring patients to a clinic if the work can be performed over the telephone.

Cancer Referralss
All the Service leads discussed how they managed cancer referrals in their region. There was a lot of variation.

Southampton:
Only accept appropriate referrals, guidelines available on website for GP’s etc.
Referrals from GP’s must come in with questionnaire or they are not accepted. For other referrals the clock is paused until the questionnaire is received.
Clinically relevant telephone contact by cancer work-up team stops the clock for 13 weeks – an appointment with date and time for this is sent out when referral received and failure to be there / call requesting different time etc is treated as a DNA. Clinic appointment will be booked in advance to meet 18 week target when capacity allows.

Liverpool
Letter sent to patients requesting contact after referral. If no response, second letter sent out and if no response after 2nd letter discharged. If respond they are offered a telephone clinic to collect information. Over 90% have first contact by 11 weeks. Release of Information forms are sent out to obtain medical information about relevant individuals. These are returned to secretaries in the department. Once information is gathered from notes or cancer registry, a face-to-face clinic appointment is offered – with a GC if diagnostically straightforward or with a medic if complex. GCs run separate “predictive testing clinics” for those referrals where there is a known mutation in the family.

Kennedy-Galton
Minimal data set required for referrals. When receive referral send out a Questionnaire. Once receive questionnaire back then triage. If meet guidelines seen. If do not meet guidelines, not seen. If not sure then sometimes use a telephone appointment to clarify and then write or arrange to see

Manchester
Minimal data set required for referrals if not sent, referral rejected. Band 5 Administrator who confirms diagnoses. Consultation after diagnosis confirmation

GOSH
Minimal data set required for referral if not sent, referral rejected. Seen in Clinic by GC or Doctor and then confirm diagnoses

St George’s
Referrals are reviewed and if accepted a questionnaire is sent out and the patient is then invited to clinic to be seen by GC. Confirmations after clinic appointment

Exeter
Referrals received, some dealt with by letter at that stage but for the majority a FH sheet is sent out. Reminder sent at 3 weeks, and if no response after another 2, case closed. All are reviewed by consultant individual comments re screening etc added to standard closure letter as appropriate. Once the sheet is returned an Administrator will confirm the diagnoses that require confirmation. Mainly Band 3 secretary to this stage. Review in clinic when all information back. Do breech 13 weeks to first contact

Sheffieldd
Minimal data set for referrals or rejected. FH questionnaire. Pedigree drawn by Band 5 Administrator who confirms appropriate diagnoses. Some further referrals rejected at that stage. Once all information back, allocated to GC and seen once. Do breech 18 weeks

Leicesterr
Receive referral and send out questionnaire. No response 3 weeks reminder sent, no further response reminder sent 4 weeks. Diagnoses confirmed by Band 4 Cancer Co-ordinator and reviewed by doctor with all the information within 18 weeks

Leeds
Minimal data set for referral. If no response to FH questionnaire two reminders at 4 weeks and then 2 weeks after that and then if no response off WL 4 weeks later and letter generated to referrer.
With questionnaire, Band 3 confirms diagnoses and passes to GC to decide on managementt

Birmingham
Direct referral and GP provides patient with questionnaire that is returned to Band 4 administrator. No return of questionnaire - reminder letter generated at 6 weeks and then again at 12 weeks. Once questionnaire returned, appropriate diagnoses confirmed. Regardless, triage at 8 weeks after receipt of questionnaire. 1/2 referrals dealt with by letter or by GC only. There is a direct referral route for the Consultant Oncologists which are dealt with within 10 days.

Newcastle
Minimal data set for referral. Moderate/High Risk are seen initially by the FH Clinics but some direct referrals. Triaged by Band 5, confirmations and then reviewed by GCs.

Nottingham
Referral from GPs or FH Clinics. In areas where there are site specific FH clinics, referrals are re-routed to these services.
FH questionnaire. No response 4 weeks reminder, after 4 weeks then further reminder and then if still no response discharged.
Questionnaires received and reviewed by GC who decides which diagnosis require confirmation and once appropriate consent is received, if relevant, a Band 3 secretary requests and chases information. Once confirmations are back, patients reviewed in clinic by GC or doctorr

One service had audited the return of information by patients and 84% of patients return requested information in 2 weeks.

Genetic Testing
There is a move to shift some of the costs for testing for Genetic Conditions into mainstream medicine and there are concerns about that due to the inappropriate use of testing. Concerns were expressed about what would happen with funding the Molecular and Cytogenetics Laboratories if the pathology model was used.
Concerns were also expressed as with the UKGTN new gene dossier, the costs of introducing new tests is identified for each Commissioning Group. The problem is not all Commissioning Group approve this expenditure and therefore where is the funding coming from for the appropriate use of these genetic tests in patient management

Service Definitions Sett
Comments sent from the Lead Clinician group and other individuals about this document are being reviewed

Service Planning
It was helpful to know how services went about delivering a Clinical Genetics Service.
Some services do not have pre-clinic contact but bring patients directly to clinic. Particular patients are reviewed by the GCs and other patients are reviewed by the Medical Staff but both work for the majority of the time independently. In one service there is a Band 3 Healthcare advisor in some clinics to take on some of the administrative roles
Some services have guidance on which patients require preclinic contact and co-counselling and GC and Consultants work together and independently
These different service set ups need to be taken into consideration when a tariff is being plannedd

Activity
For a 10PA Consultant a number of services work with an expected activity of 350-400 independent interactions annually. Interactions where the Consultant either supervises a GC or medical trainee to perform the interaction would not be included.
One service has a fairer way of reviewing interaction which is based on the number of DCC PAs with a specific patient number per DCC PA for 43 weeks.
These figures are important for services not on a block contract as it allows services to plan Establishment based on activityy
New to follow up ratios were also discussed. They appeared to vary with an average of 3 new to 2 follow up

Budget
Trust overheads vary with different services from 20-40% average 25-30%.
How services are commissioned is also different with some services still being on block contracts
It was agreed that it would be a useful exercise to repeat the survey where we all reviewed our budgets. This would need to include:
CIP
Sendaway Budget
Last time we did this we used our total budget, identified if that included, excluded or we did not know about Trust overheads and whether that included the sendaway budget

It was also decided that for services that had been successful in obtaining Service Developments bids for new technology this would also be useful to share with the groupp

Inherited Wait
Affecting some services. Patients are being referred and the 18 week RTT has started and the patients have a set time in which they need to be reviewed. Newcastle and Leicester reported receiving such referrals

Self-Referrall
It has been agreed by most commissioners self referral means someone who walks in off the street wanting genetic advice. A member of a family who is seen in clinic with another family member and who is at risk would not be regarded as a self-referral
Strategies for getting referral of patient include sending them back to their GP with an information leaflet/letter stating referral is indicated or a retrospective letter to their GP after consultation saying that they have been seen and why and suggesting if the GP objects they need to contact the service. Each family member reviewed therefore needs at a minimum collection of demographic data including address, DOB and GP
For out of area patients, if the individual is alive, it may be helpful for them to be reviewed by their local genetic centre but if the individual is dead or dying with consent samples can be obtained but the local PCT or genetic service will have to pay for any genetic testing

Rare Diseases
The group agreed to support the GIG initiative for rare diseases

SpR
Shortage of applicants. 7 for last National appointment for 11 posts and only 4 were appointable. There needs to be a national response to raising awareness of Clinical Genetics as a speciality

Actionss
Meet again at BSHG in August. Decide on how we wish to collect and analyse Budget data
SWOB data has been collected on audit and Governance so it was discussed it would be helpful to circulate this information to the group

New Chair. Bronwyn Kerr to take over from 03/07/20099