MINUTES 1. INTRODUCTION

Transcription

1 Name of Group / Meeting: Network Service User Partnership Group Date: 20 May 2014 Time: 1:30 3:30 pm Venue: Evolve Business Centre Present: Tony Branson, Medical Director, NECN Sheila Brown, Sunderland Helen Douglas, Network Admin Officer, Clinical Networks Alison Featherstone, Network Manager, Clinical Networks Jean Gardiner, Northumberland & North Tyneside Nicole Kirby, Macmillan Involvement Co-ordinator, Macmillan Marjorie Leckonby, Teesside Pat Luckey, Northumberland & North Tyneside Norman Mackey, Teesside Anne Richardson, Network Delivery Facilitator, Clinical Networks Margaret Rowe, County Durham and Darlington Chris Walker (Chair), Northumbria Kath Wall, County Durham and Darlington Margaret Warner, Gateshead In Attendance: Adrienne Moffett, Network Delivery Team Manager, Clinical Networks Apologies: Jim Allan, Cumbria Pauline Bagnall, Urology Specialist Nurse, Northumbria Val Davison, Northumbria Jo Muter, Cumbria Anne Page, Sunderland Liam Ryan, Macmillan Claire Singleton, County Durham and Darlington Debra Spraggon, Macmillan Cancer Information Support Centre Manager Chris Wood MINUTES 1. INTRODUCTION Enclosure 1.1 Welcome & Apologies CWa welcomed all to the meeting and apologies were noted as above. 1.2 Previous Minutes KW noted that in any other business professional panel should

2 be replaced by expert panel. With this amendment the minutes were accepted as a true record. 1.3 Action Points from Previous Minutes AF informed members that Mathew Crowther has been appointed to the Survivorship Project Manager post. It was agreed that he should be invited to attend a future meeting to give an update. AF Consultation on End of Life Care Toolkit AM discussed the context of the end of life toolkit which is being developed to as part of the replacement for the Liverpool Care Pathway. She asked for the views of the group regarding this document. There was a general group discussion and members made various suggestions. AM thanked members for their contribution and left the meeting. Wig Service Evaluation updated the group regarding the evaluation report. Return rates for this were very poor with only 42 out of 180 returned. No responses were received from Cumbria. My New Hair is going into partnership with Macmillan however it is not known what the details of this are. There was a group discussion and it was agreed that it would be best for this to be dealt with in the localities rather than a Network approach. A small group will be formed to consider the approach each locality could use. Five Senses Survey AF reported that the questions as to which areas to survey had been discussed at the Senior Nurse Group. Most units would like this carried out in the radiotherapy and chemotherapy areas, however Gateshead would like a survey of some outpatient areas. AF asked for any volunteers to do this and will liaise with the Lead Nurse for Gateshead to arrange this.

3 NSSG Representatives update discussed the representation list and the vacancies. Claire McNeill has been asked to approach the chairs and members of the group to find out if they can identify a representative. Third sector groups have also been approached. It is hoped that on each group there will be a representative from this group and a user representative with more recent experience or a third sector representative. AF asked members to ask anyone who is interested to contact the network. ALL Development of local groups update AF informed the group that the funding has been granted for a two year project manager to work with the groups. 2. SPECIFIC ISSUES ISING 2.1 Local Update Northumbria VD, CWa and JG attended the Brain and CNS support group at the Maggie s Centre and gave a presentation about the locality groups. Maggie s runs a programme of support groups on other cancer areas and CWa, VD and JG have been invited to speak to these groups. Maggie s has also issued an invitation for the premises to be used for meetings which could be at night. A representative from Maggie s was invited to this group meeting; however she was unable to attend today. JG and CWa attended meetings given by Healthwatch regarding the new hospital. David Evans, Director of the project gave a presentation about how the new hospital should work and the possible impact on other hospitals. JG attended North of Tyne Strategic Locality Group. Judith Woodruff, Complementary Therapist, has funding to give acupuncture to men who have hot sweats after hormone treatment. However, she is encountering problems with rooms being available.

4 Cumbria No representation from Cumbria but CWa reported that three panels have now merged into one. County Durham and Darlington The next meeting is on 29 May 2014 when Jill Salkeld, The Patient Experience Manager will speak. Claire Singleton (CS) and KW attended NHS North Durham CCG s first Patient s Congress on 14 May This event comprised various speakers and stands, including the Service User Group. Their stand included information about what the group does, its role in the Network and promotional material. The group have commented on the North Durham CCG Dementia Strategy and there was a Dementia Consultation on Thursday 15 May which was open to the public. County Durham and Darlington Foundation Trust have set up a new quarterly meeting Cancer Services Group. CS attended the first meeting on 19 May 2014 where various issues were discussed. CS was invited to attend an Access Support Directory Workshop on 15 May at the Northern Centre for Cancer Care. The aim was to create a tool to enable consultants, GPs and users to access information and support services. South of Tyne and Wear There is currently no patient locality group however Rachel Bannister-Young had attended the Northumbria group to gain information on how the group runs. Gateshead: MW was unable to attend the CCG meeting in March; however she received the minutes and gave some feedback. The next meeting is 29 May which MW hopes to attend. Tees JM A group has now been established at North Tees. There

5 was a meeting this morning where it was acknowledged that it may take some time for the group to be fully organised. There was a query about training for Chairs; NK confirmed that Macmillan is committed to providing training for North Tees. ML went to the clinical locality group which was well attended. A draft cancer strategy has been drawn up and ML has been asked to comment on this. There was a discussion regarding regional campaigns and the effect on trusts; there has been an increase in referrals. ML has been asked by Macmillan to attend a Fuel Poverty group. ML is attending the South Tees Cancer conference. 2.2 Work Programme gave an update regarding the Needs Assessment. The data is not quite ready to carry out the 3 rd mapping exercise against baseline; however the report should be available by the next meeting. There is no local data available from the National chemotherapy survey. Linda Wintersgill is to ask if this can be provided. The document is available by clicking on the enclosed link: Enc The work programme will be updated following discussions at the group today and re-circulated with the minutes. 2.3 NSUPG Relationship chart discussed the relationship chart. 2.4 PPI Strategy The PPI Strategy was ratified by the group. 2.5 Election of Vice Chair VD had previously been put forward as Vice Chair and JG agreed to assist in her absence. The group agreed with this.

6 2.6 Working Together Macmillan Event CWa updated the group on this event which some members of the group had attended. It was agreed that this was a good event. Members noted that there seem to be difficulties in other geographical areas compared to services in this Network. The Project Manager post is part of the action plan for this area. 3. REGULATORY 3.1 Clinical Governance Issues None raised. 3.2 Any Other Business David Oxenham, Joint Chair of the Network Palliative and End of Life Care Group, joined the meeting to ask for the opinion of the group on wording for talking to people in their last days and hours of life in a clear manner. Members agreed with ill enough to die. ML expressed concern that the George Hardwick Centre has closed and there is now no patient information centre at North Tees. The locality group are aware of the problem. NK agreed to liaise with Stephen Guy regarding this. NK KW informed the group that Healthwatch are concerned that the Breast Clinic on a Tuesday has been moved from Darlington to Bishop Auckland. KW noted that some outpatient clinics at Darlington have been revamped with a colour scheme designed specifically to assist dementia patients. KW highlighted the issue that the only M & S store which stocked a bra with pockets is the Metro Centre. It was suggested that this should be taken to the Breast NSSG to find out whether this is a problem across the Network. KW is involved with the planning of a cancer event in Darlington scheduled for Friday12 September. AF informed members that there are vacancies on some Network Peer Review, Internal Validation Panel: Teenage and Young Adults on Friday 6 June All

7 The Children s group on a date to be confirmed. Anyone who would like to volunteer to sit on these panels to contact the Network. 3.3 Date of next meeting It was agreed to go ahead with the meeting on 12 August MEETING CLOSE