NOTES OF THE MID AND WEST WALES PPI NETWORK
WEDNESDAY 4 th MARCH 2009
AT
HAFEN DERWEN, ST. DAVID’S HOSPITAL, CARMARTHEN
Present:
Anna Tee (Chair)
Alison Johnstone
Delyth Evans
Leanda Wynn
Hywel Dda NHS Trust
NHS Direct Wales/WAST
Ceredigion LHB
Carmarthenshire CHC
Marcia Buchanan
Norma Owen
Bridgend LHB
Abertawe Bro Morgannwg University NHS Trust
Paul Jones Abertawe Bro Morgannwg University NHS Trust
Barbara Bowness NLIAH
Carol Clarke Patient Experience Team, WAG
Steve Gregory Patient Experience Team, WAG
Apologies:
Kevin Duff
Leanne Hawker
Natalie Harris
Nicola O’Sullivan
Neath Port Talbot LHB
NHS Direct Wales
Mid Wales Regional Office, WAG
Hywel Dda NHS Trust
Tracey Roberts-Jones Neath Port Talbot CVS
Jackie Wilding Powys LHB
Joanne Lane
Marylin Wilkinson
Swansea LHB
BSC
Natalie Harris Mid & West Regional Office
Zoe Wallace Bridgend LHB
Notes of the Last Meeting
The notes of the last meeting were agreed.
Anna welcomed Barbara Bowness from NLIAH
Matters Arising:
Reward and Recognition Protocol
Anna said Dr Chris Riley is happy with the protocol as it stands. It was agreed that the final version of the protocol should be circulated to the North and
South East Wales PPI Networks. Paul Jones suggested that the protocol be kept on future Network agendas. Carol had contacted Janet Whiteman, Welsh
Assembly, who has experience of voluntary organisations and she had made further comments on the protocol which Anna would insert. The final version will be presented at the next meeting in June. Once the Network has signed off the protocol it would also be published on the PPI website.
Patient Stories
Anna informed that these are now available on the 1000 Lives Campaign website.

PPI Website
Steve updated the meeting regarding the PPI website. Work is continuing on the internet site to make it more user friendly. Work on the intranet site is on hold due to the CHC consultation and possible reorganisation. When this is complete it is hoped that the CHCs will be able to access. Barbara Bowness asked if she could be sent the web link.
Action

Steve Gregory to send website links to Barbara Bowness

Carol Clarke to include Reward & Recognition Protocol on next agenda
Digital Story Telling
Alison Johnstone told the meeting that digital storytelling was a powerful tool for gathering information and educating. The Welsh Ambulance Service was in the process of purchasing equipment to use in digital storytelling and will be teaming up with GAVO and a patient group for a pilot run.
Paul Jones said that the Royal College of Nursing have been using digital storytelling for a while and he suggested that Paula Elson, RCN, attend the next meeting to give a presentation.
Alison also mentioned that one of her staff had attended the Breaking Barriers training course. The course gave practical advice on putting patients at ease and how to spot an appropriate patient story. Feedback had been good and
Alison is looking to promote the training on the WAST/NHS Direct website.
NLIAH Determining Patient Priorities
Barbara updated the meeting on the Determining Patients & Carers Priorities workshops that NLIAH are running in conjunction with the Welsh Assembly
Government. These will consist of 3 workshops being held in May 2009 with the Mid & West being held on either the 18 th or 19th May. Concerns were raised by Anna Tee regarding the non invitation of PPI leads to the workshops. There was also a general concern that the workshops would duplicate work undertaken previously. Barbara said that she would feedback concerns/comments to Marcus Longley.
Barbara also asked if anyone had any good practice guides to citizen engagement to forward to her as she was thinking of developing a toolkit as a guide to good practice.
Action
● Network members to forward examples of good practice guides to
Barbara Bowness
Dignity & Respect Campaign
Paul Jones gave an update on the campaign. A steering group had been set up to look at the standards of the fundamentals of care. Swansea University will be evaluating the campaign and will feedback to the steering group. Paul

and Norma are still doing ward walkabouts in the Trust and receiving good feed back. A dignity and respect patient’s charter has as also been developed and Paul will email a copy to Network members.
Anna said that Hywel Dda Trust had been working on a Dignity Ten Point
Challenge that was based on a similar Department of Health model. She suggested that she give a presentation on this at the next Network meeting.
Action
● Paul Jones to send to Network members the dignity and respect patient’s charter
● Anna Tee to give a presentation at next meeting on the Dignity Ten
Point Challenge
Patient Information Leaflets
Anna reported that definitive instructions had now been issued by the Minister which states that no advertising can be used on patient information leaflets
(not just personal injury lawyers). Anna asked for members’ views on this.
Alison Johnstone said that she had now received confirmation that the patient information on the NHS Direct website could be downloaded but with a disclaimer. Alison would speak to Anna at a later date about Hywel Dda Trust producing information this way as a pilot project. Anna asked for this to go onto the next agenda (June).
Action
● Carol Clarke to include patient information leaflets on next agenda
General Update
Marcia Buchanan reported that 19 GP practices have been piloting deaf workshops using sign translators. Also some of the surgeries were now using a text messaging service for deaf people to make appointments. Marcia will report back at the next meeting.
Paul Jones reported that he and Norma Owen now have responsibility for patient experience for the whole of ABM Trust area.They are looking at ways of linking areas of work (citizen engagement and patient experience).
Volunteering is still attached to his remit and the Trust has a list of 150 volunteers. Seventy volunteers attended the first Conference for Volunteers which was a great success.
Leanda Wynn reported that she had been working on the CHC consultation response and that the first consultation workshop will be held soon to discuss issues in the Carmarthenshire area. She has also been working with a health and wellbeing service group linking into the local authority.
Alison Johnstone reported that there had been structural changes in WAST and that health information now came under the remit of Partners in
Healthcare. WAST are also undertaking deaf and hard of hearing consultation events across Wales. Alison also informed on developments on the NHS

Direct website including a health and wellbeing directory and DIY information prescriptions.
Delyth Evans had been involved in a project looking at the provision of community facilities in rural areas
Barbara Bowness explained the work of NLIAH, how they are set up and their relationship with the Welsh Assembly. She asked that if any of the Network members had any projects that NLIAH could help with to let her know.
Anna Tee reported that she should know the outcome of her lottery bid for the
Volunteering for Health project by 7 th April. She had also been working on a patients choice project that would inform patients whether they needed to go to a GP or A and E for treatment. A thermometer had been devised as an information tool for patients use. Anna would update at the next meeting.
Date of Next Meeting
The next meeting will be held on 3 June 2009 in Carmarthen .