Haematology Advisory Group Meeting

Transcription

1 Haematology Advisory Group Meeting 19 November 2003 Meeting Room Velindre NHS Trust Corporate Headquarters Parc Nantgarw Present Dr HW Habboush Chairman Dr A Al-Sabah Consultant Haematologist Cardiff and Vale NHS Trust Prof AK Burnett Professor of Haematology Cardiff and Vale NHS Trust Dr V Devalia Consultant Haematologist Bro Morgannwg NHS Trust Dr A Goringe Consultant Haematologist Cardiff and Vale NHS Trust Mrs V Harvey Patient Representative Dr D Jackson Consultant Radiologist Gwent Healthcare Trust Dr H Jackson Consultant Haematologist Cardiff and Vale NHS Trust Dr J Kell Consultant Haematologist Cardiff and Vale NHS Trust Prof TS Maughan Consultant Oncologist Velindre NHS Trust Dr E Moffat Consultant Haematologist Gwent Healthcare Trust Mr H Morgan SE Wales Cancer Network Manager Mrs S Nicholls Data Manager Cardiff and Vale NHS Trust Dr C Poynton Consultant Haematologist Cardiff and Vale NHS Trust Ms S Rennie Patient Representative Dr C Rowntree Consultant Haematologist Cardiff and Vale NHS Trust Dr K Wilson Consultant Haematologist Cardiff and Vale NHS Trust In attendance Sue Davies SE Wales Cancer Network Administrator Steve Cousins Cytogenetics Cardiff and Vale NHS Trust Mark McKinley Cytogenetics Cardiff and Vale NHS Trust 1. Apologies for Absence Dr G Robinson Mr C Bacon Dr C De-Alwis Dr C Hewlett Ms U Mehmet Dr K Myers Dr R Attanoos Dr S Dojeinov Dr Al-Mokthar Mr R Maclean Dr W Bashi Mrs A Stephenson

2 2. Notes of the Meeting 21 May 2003 The notes of the meeting were accepted as a true record with corrections to spelling of names. Action 3. Matters Arising Staffing Professor Maughan informed the group of the need to appoint a clinical oncologist. Dr Devalia was concerned at the increase in bone marrow requests, and asked his colleagues if they had encountered problems regarding this issue. The group felt that the increase maybe be attributed to clinical trial requests/or the reduction in junior doctors hours. Chemotherapy Information Dr Wilson felt that information should be given to patients by haematologists and not the pharmacy department. The group felt that the Helpline Service did not have the full resources to provide chemotherapy information, and a better approach should be adopted. Transport Dr Habboush has written to Gwent and UHW patient transport services, however replies are still outstanding. Patient Information In line with the NICE guidance, patients should have access counselling support. The group felt this could be addressed with every MDT having a clinical nurse specialist who could provide counselling support to patients. This could be highlighted in the Service Development Plan. Prof Maughan suggested publicising the Tenovus helpline. However the group felt that the helpline nurses were generic and they may not have the information to fully support the patients. Bone Marrow - nurses The group discussed the issue of increased requests for bone marrow procedures. It was agreed to look at developing the role of the nurse to undertake bone marrow procedures. It was agreed to discuss developing this role with nurses and discuss the development of competencies. Radiology Services/PET Scans Hywel Morgan informed the group that BUPA were providing a PET Service in Cardiff, he agreed to contact BUPA to find out the costs involved. The lead radiologist is Dr John Rees. Prof Maughan informed the group that Lister were sponsoring a mobile PET scanner based at Velindre on 8/15/22 December 2003, with 4-5 slots allowed for referrals from Velindre based consultants. The lead radiologist is a nuclear medicine physician trained at the Middlesex.

3 Dr Rowntree suggested that PET was a south Wales wide issue and needed to be addressed across both networks. Dr Rowntree agreed to audit those patients who have had their PET scan at St Thomas s hospital, including travel costs. Dr Poynton informed that group that he has a print-out of all patients sent from SE Wales. He agreed to provide this information for the network. CR CP Lymphoma Panel It is hoped to role the lymphoma programme out to other hospitals. 4. Information from the Network Board Mr Morgan informed the group that the network would be advertising for a patient involvement officer which is funded for 1 year. Dr Jane Hanson had meet with Jane Hutt and emphasised the need to take forward the CSCG plan, however there is no funding at the moment. The network has had meetings with the Local Health Boards and Geoffrey Carroll from Health Commission Wales with regard to commissioning of services. 5. The patient Journey in Lymphomas Presentation by Dr Moffat Unfortunately only 4 responses had been received to the questionnaire, all from DGH s (20 patients were evaluated). The audit looked at time from referral through the patient journey for lymphoma patients, to find out what were the delays. The audit showed that overall those patients with diagnosed with high grade were dealt with very swiftly. There were delays in the patient journey for those patients who had undergone a bone marrow procedure, the main cause being the delay in receiving the formal bone marrow report. However on the whole patients received their treatment within the minimum standard guidelines. 6. Newer Drugs (Uses/Findings) Rituximab Dr Poynton felt that the Bro Taf model for the management of Rituximab was appropriate. The multidisciplinary team agree the allocation of the drug within the allowed budget. The group discussed the network setting the principles for the use of drugs and policed by the multidisciplinary team, this approach could be audited. Erythropoietin Dr Wilson will be attending the review meeting for use of Erythropoietin in December, it is hoped the review will look at specific

4 areas and agree a consensus of opinion. The review will provide a report to the Welsh Assembly Government to make a decision. It is hoped to look at the role of Erythropoietin can play and how effective it could be in haemo-oncology. Dr Wilson agreed to forward a copy of the consensus to Dr Habboush for circulation to the Haematology Advisory Group. KW G-CSF Dr Habboush circulated guidance and would welcome comments. Campath Campath is used for T-cell pro-lymphatic leukaemia, the drug is used very rarely and usually on a named patient basis. 7. Cytogenetic Services for CLL/MM Dr Habboush welcomed Mark and Steve to the group CLL The group discussed the costs, manpower and impact on the cytogentics service for CLL patients who undergo cytogenetic studies. Dr Habboush asked if Mark could ask how many CLL patients undergo cytogenetic studies per year. Mark felt that a sudden influx on patients for cytogenetic studies would impact on their service. He agreed to look at the number of patients who have undergone cytogenetic studies for CLL and the manpower involved. Dr H Jackson informed the group that the CLL Trial asks for cytogenetic studies to be undertaken as part of the trial. Dr Jackson felt that the multidisciplinary team could refer those patients they deemed appropriate to have cytogenetic studies as part of their management plan. Dr Jackson felt that there was a need for a defined protocol to be agreed for referral to the service. Dr Rowntree agreed to undertake a literature review to clarify referral of CLL patients for cytogenetics studies. MMc HJ CR Myeloma The group agreed that without the results of the Myeloma Trial, cytogenetic studies, at present, should not be requested for myeloma patients. 8. New registration forms To standardise registrations of haematological cancers throughout SE Wales Mrs Nicholas circulated registration forms. Dr Habboush welcomed comments. 9. Referral Forms Dr Habboush circulated a SE Wales referral form to be used by GP s for referral directly to haematologists. The consultant haematologists

5 felt that this would give GPs open access to the haematology service flooding the service with inappropriate referrals. 10. Myeloma IX Trial/Thalidomide The trial is up and running in Cardiff, however there are excess treatment costs. In Gwent the trial is with R&D awaiting approval. The ongoing cost for those patients in the Thalidomide programme needs to be addressed on an All-Wales basis with the Cancer Trials Network. Dr H Jackson agreed to liaise with Lucy Branston, Clinical Trials Network to discuss this issue. HJ 11. Group Reports MDS The MDS group have discussed the use of a registration form from the central review panel for peripheral blood and marrow for MDS. Myeloproliferative Disorders No meeting Lymphoma All Wales Lymphoma Panel to look at PET and invite SW Wales to the meeting in late January. Acute Leukaemia No meeting Partners Shelagh Perrett has left the NHS and would be missed by the group. Dr Habboush thanked Shelagh for her work with the Network. Angela Stephenson and Noreen Lewis have joined the group. The group are looking at a leaflet The Right Questions to Ask your Doctor they need to ask more patients for their comments. Mr Morgan informed the group of a Macmillan project Cancer Voices which offers training on how to work with patient groups. 12. AOB Professor Maughan updated the group on the Patient Notification Exercise for those patients who received radiotherapy above the diaphragm for Hodgkin s disease. Professor Maughan has invited those patient s identified to attend clinic in Velindre. There is a 1:3 risk of these patients contracting breast cancer, these patients will be entered and managed by the screening programme at Breast Test Wales.

6 Should the group have any questions about any of their patients please contact Professor Maughan. 13. Date and Time of Next Meeting DATE: Tuesday 23 March 2004 TIME: 2.30pm, VENUE: Cedar Room, The QED Centre, Main Avenue, Treforest Estate, Treforest CF37 5YR