West Midlands Renal Network

Patients & Carers Forum

Date: Friday 11th February 2011, 10.00am

King’s House, 127 Hagley Road, Edgbaston, Birmingham, B16 8LD

Minutes

PRESENT:

Carol Willis (Chair)Lead Nurse – Renal Network

Dawn RoachUniversity Hospital KPA

Judith SidawayDudley Group of Hospitals KPA

Nick Flint University Hospital of Birmingham KPA

William WithersHome Dialysis Patient QE

Jan CooperTelford

Loulla ConstantinouRenal Network Administrator

ACTION
1. / Welcome & Introductions
2. / Apologies:
Nanette GrantRenal Network Manager
Hugh RaynerWest Midlands Renal Network
Denis CawdronNational Kidney Federation
Peter Jones Shropshire & Mid Wales KPA
Carol SidawayHeart of England FT KPA
Sue WeaverSouth Worcester & Malvern KPA
3. / Minutes of the Last Meeting
The Minutes were taken as a true and accurate record of the meeting held on 8th October 2010.
4. / Matters Arising
Patient Information - CW checked with the Senior Nurses as to the pre-dialysis material they have available but a limited response was received. The material available at UHB is company driven and the QE KPA has been involved in reviewing this material. CW suggested the Patient Carer Forum review the generic material from all units. These can then be adapted to meet local needs.
Data Protection–CW spoke with the Senior Nurse at Shrewsbury who will be speaking directly with Peter Jones to resolve his concerns locally.
Website – The patient information leaflets discussed at previous meeting are now available on the website –
Senior Nurses Forum - CW will check the dates of future meetings of the Senior Nurses Forum with a view to inviting William Withers. / CW
5. / Kidney Care Plans
National Kidney care provided a template for Kidney Care Plans with the purpose of each unit adapting it to meet their needs.
The group agreed the Care Plan should be patient led to allow for patient empowerment and to include individual personal goals.
Action 1: CW will send to the group a set of headings for comments and then work on the content for each heading.
Action 2: CW to speak with NG to submit an expression of interest to NHS Kidney Care to support this work. / CW
CW
6. / Patient Information
Guidelines for haemodialysis abroad suggest isolation for a period of time on return to the UK and more regular blood testing. In practice it is quite difficult to have an isolation area. CW produced a leaflet outlining the risks of haemodialysis abroad.
Whilst the group approved the leaflet it was felt that further leaflets should be drawn up to include more holiday related issues. CW will look at producing 2 further leaflets:
(i)Insurance – pitfalls and benefits.
(ii)Specific holiday information.
A transplantation leaflet is also in the process of being produced. DR will review transplant document and feedback to CW.
Action 3: CW/WW to produce 2 further holiday leaflets.
Action 4: CW/DR to produce transplantation leaflet.
WW shared with the group a matrix he had created to show various measures of quality of life on different modalities. He hoped it would create an online resource with patient feedback.
Action 5: WW to share the matrix with CW. / CW/WW
CW/DR
WW
7. / World Kidney Day – 10th March 2011
The theme for World Kidney Day 2011 is “Protect Your Kidneys – Save Your Heart”.
On the 9th March an all Party awareness day is being held at the House of Commons and patients have been asked to lobby their MPs. Further details can be found on the NHS Kidney Care website.
QE KPA –A stand will be in the Atrium of the QE Hospital.
HEFT - A stand will be inside the hospital carrying out blood pressure checks. A recording of results will be given together with advice to contact GPs if necessary.
DGOH – Having a display in the local charity shop.
8. / Patient Transport
PTS was discussed at the WMRN Board meeting held on 10th February 2011. Funding for PTS is held by the PCTs, therefore, local dialogue is required with PCTs and include providers and the ambulance service.
9. / Any Other Business
At the WMRN Board meeting Hugh Rayner proposed that a letter is written routinely to patients following each appointment with a copy to GPs. Although this was agreed in principle, some felt it may be costly to do so. The consensus from the Patient/Carer representatives at the Board was that having a letter would empower patients and put them in control of their treatment. It was suggested that patients/carers express their support of this.
Action 6: DR will liaise with members of the group to construct a letter on behalf of the Patient/Carer members of the Forum. / DR
Date of Next Meetings
Friday 3rd June, 10am, Room 2 King’s House
Friday 23rd September, 10am, Room 2, King’s House

Patient Carer Forum 1102111