Welcome! We will start shortly, but are waiting for people to join. You will not be able to hear anything until the e-seminar begins. Before we start we will be going through some E-Seminar housekeeping items, so that everyone can participate fully in the online meeting Please can all participants enter their name and who they are representing into the chat box (this can be found to the right of this slide). If you are having difficulties joining the meeting please call Joan Dobson on Home Therapies (formerly Improving Choice)

During the E-Seminar we may mute delegate’s lines during presentations. This is an interactive session, please add your comments, and thoughts into the chat box as we go through the presentation. If you would like to ask a question during the Q&A session please use the raise hand button (this can be found on the right hand side of the screen below the list of participants). We will un-mute your telephone line if you wish to ask a question. If you are having any technical problems, send a message to the Host via the chat panel or call Amy Arora on Tips for using WebEx

Home Therapies Project Leads e-seminar e-seminar 30 th April 2012 Chair: Clare Beard, Programme Lead NHS Kidney Care

Agenda ItemTopicSpeaker 10.00Welcome and IntroductionsClare Beard 10.05Yorkshire and Humber updateRebecca Campbell 10.15Reading updateLeo Bailey 10.25West Midlands updateMandeep Jagpal 10.35Brighton and Sussex updateCristina Osorio 10.45St Helier updateGinny Quan 10.55EvaluationClare Beard 11.05Project AssuranceClare Beard 11.15CommunicationsClare Beard 11.20AOBAll

Home Therapies: Yorkshire & Humber update e-seminar 30 th April 2012 Rebecca Campbell Network Manager Yorkshire & Humber Kidney Network

6 Yorkshire & the Humber Renal Network Improving Choice Rebecca Campbell Network Manager, Yorkshire & the Humber Renal Network 30 th April 2012

7 Background NHS Kidney Care Problem-Solving Funding (£25k) – Clinical Lead appointed Y&H Home Therapies & Self-Care Forum established Y&H Home Therapies and Self-Care Strategy – includes 17 recommendations Health Foundation ‘Closing the Gap through Changing Relationships’ Funding (£400k) for 2.5 year programme – to implement ‘Shared Haemodialysis Care’ NHS Kidney Care Improving Choice Funding (£43k) accessed to appoint a Nurse Educator (South Yorkshire) Programme Manager & 2.2WTE Nurse Educators in post Initial pilot in Sheffield & York

8 Progress to date Shared Haemodialysis Care Programme Project Plan – next phase agreed: spread to Hull & Leeds Staff Training Course – formal evaluation undertaken following the first course undertaken for York & Sheffield in September, further dates agreed. 3-tiered approach agreed Patient Handbook – printed and piloted in 2 Units Qualitative Research – interviews completed, report drafted Further work to develop stakeholder engagement – Stakeholder Communication & Engagement Strategy agreed Spread & Sustainability work stream established

9 Progress to date (2) Shared Haemodialysis Care Programme

10 Measures (1) Shared Haemodialysis Care Programme Outcome Measures - Directly related to the aim of the project : % of haemodialysis patients undertaking all aspects of their haemodialysis care % of haemodialysis patients undertaking at least five aspects of their haemodialysis care % of renal unit staff who have completed the purpose- designed training programme

11 Measures (2) Shared Haemodialysis Care Programme Process Measures - Measuring the activities/processes introduced to achieve aim; measures of whether an activity has been accomplished : % of staff who are enrolled on the training programme % of patients who have been asked about participating in shared haemodialysis care % of patients able to establish access (putting needles into their fistula)

12 Measures (3) Shared Haemodialysis Care Programme Balancing Measures – Measuring any unintended consequences : % of patients satisfied or very satisfied with their dialysis care [score 5 or above] % of staff satisfied with providing dialysis care [score 5 or above]

13 Run Charts (1) Shared Haemodialysis Care Programme

14 Run Charts (2) Shared Haemodialysis Care Programme

15 Other Developments E-Seminar on developments in York and visit to Jonkoping, Sweden Draft Support Manual under development HQIP Funding for multi-centre audit of PD catheter function Yorkshire Dialysis Decision Aid (YoDDA) – trial phase Advancing Quality Alliance (AQuA) – Shared Decision Making Collaborative Y&H Home Therapies & Self-Care Forum –29 th May Care Planning – NHS Kidney Care Funded Project (applications for further funding)

16 Next Steps ‘Roll-out’ to Hull & Leeds, and develop plans for Doncaster & Bradford Further course sessions – 5 courses (of 3 days) planned up to July 2012 Printed course curriculum and materials Stakeholder Communication & Engagement – ongoing work, including patient stories blog, posters, leaflets & newsletter Develop sustainability plans Learning Event – 26 th June in Leeds

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18 Dr Martin Wilkie Rebecca Campbell Renal Network Manager Yorkshire & the Humber / Any questions or comments?

Home Therapies: Reading update e-seminar 30 th April 2012 Leo Bailey Renal Matron Royal Berkshire Foundation Trust

Home Therapies Project Royal Berkshire Foundation Trust NHS Kidney Care Leo Bailey Dr LC Barker Barbara Dollery, Michele Ismay, Angela Clarke April 2012

Presentation title here 21 Background  Initial submission at launch of the NHS Kidney Care project  First meeting of 3 centres in June 2011  Joint submission with funding shared by Reading, Oxford and Portsmouth  Problem of lack of stakeholder engagement in original objectives  Objectives of 3 units related but differed in outcome. Presented problems in clarity  Project lead role change  Project not progressing – new direction needed Dec 2012

Presentation title here 22  April Funding equally divided between the 3 centres  Revised Project Profile submitted  Agreed way forward with the 3 centres  New lead and project team at RBFT  Simplified and clear set of outcomes/goals identified  Complements work already being done at RBFT in aAPD and HHD within ‘Home Therapies Team’  Project close now set at December 2012 with a clear timeline Where are we now?

Presentation title here 23 Project Objectives  To offer an expanded and sustainable full range of home RRT therapies  Increase the number of patients on aAPD (10) and HHD (5 with funding for 7)  Increase aAPD by expansion of HCA hours  Deliver education and training to patients at off-site facilities in satellite units  Embed the culture of services ‘Closer to home’ with patients and staff  Promote patient involvement in making informed choices  Widen the training and increase staff/MDT awareness  Produce a full and varied range of educational material (including making own DVD)

Home Therapies: West Midlands update e-seminar 30 th April 2012 Mandeep Jagpal Commissioning Projects Manager for Renal Services West Midlands Kidney Network

Mandeep Jagpal

 Develop a regional service to improve access and facilitate the development of Home Therapies ◦ Increasing patient numbers for home dialysis ◦ Shared decision making ◦ Review and Improve Education

 Worked with renal units to develop a service Home Therapies service specification  Communications issued and started discussions re. procurement routes with units  Identified work groups to push forward the work within the units and scheduled meetings to kick start the process  Establish working relationship with the HIEC to review education programmes

 Health Trust Europe (HTE) ◦ Specification developed for tender ◦ 5 Units engaged and ready to go ◦ Procurement Specialist Lead  Issues ◦ Gaps in specification ◦ No Patient Representatives

 Working closely with HTE ◦ Restricted procurement ◦ Evaluations ◦ Patient Rep ◦ Gap analysis of specs ◦ Framework Contract Award envisaged May 2012 ◦ WMRN liaised and recruited and additional unit with 2 others interested  SDM – AQuA programme ◦ First meeting in May ◦ Working with Clinical teams to encourage patients to be involved in choosing appropriate treatment and mgt options  HIEC ◦ work underway with 3 demonstrator sites, we await further update

 Procurement award in May  Transfer of c patients (Excl figures from latter unit)  Obtain an update from HIEC  AQuA meeting in May to kick start the SDM project

Mandeep Jagpal West Midlands Commissioning Projects Manager for Renal Services Tel:

Home Therapies: Brighton and Sussex update e-seminar 30 th April 2012 Cristina Osorio Matron for Renal and Imaging Brighton and Sussex University Hospitals NHS Trust

Improving Choice e-seminar Cristina Osorio Sussex Kidney Unit 30 th of April 2012

Home Therapies : Improving Choice e-seminar Sussex : April Update Modular Programme has enabled patient discharge with recall to finish specific module, i.e. buttonhole cannulation after access matured 5 days / week short training sessions, proving popular with patients and staff Staff cross-training will take on a more formal structure, starting 1 st of May with and update on buttonhole cannulation Patient survey agreed and being rolled out in 1 st week of May. It invites follow up on carer and peer support. Focus on patient recruitment into home dialysis

Improving Choice in Sussex Continuing development Expert patient groups and 21 st century network Further enablement of informed choice for patients and relatives

Home Therapies: St Helier update e-seminar 30 th April 2012 Ginny Quan Consultant Nephrologist St Helier Hospital

Initially: self care based and homehaemodialysis training based around one satellite unit The option for homehaemodialysis rarely discussed once patients start dialysis pd discussed with most pre-dialysis patients but not homehaemodialysis Aim:To ensure equal access for all our patients to home based therapies To increase the number of home haemodialysis patients so all patients who want to dialyse at home can do so. Home Therapies At St Helier

Patients on homehaemodialysis patients April 2012 yearNo of home hd Leaving home hd total

Patients training for home haemodialysis April 2012 Currently 3 training due home May, June and July Currently 5 referred for training and assessed as suitable 3 predialysis, 1 awaiting fistula, 1 waiting home conversion 4 patients on dialysis awaiting assessment

Expansion of home haemodialysis, improving choice at St Helier What have we asked NHS Kidney care for? Development of the DVD to educate both pre-dialysis and current dialysis patients in home therapies –Carry out workshops/roadshows promoting home therapies in the satellite units to engage both staff and patients Update our homehaemodialysis protocols Funding to improve the efficiency of our home haemodialysis nurses –Centrifuges Funding to help with the safety of homehaemodialysis patients especially solo patients –Enuresis alarm Funding to help with the buttonholing program –Doppler and bioplugs

What have we done ? DVD filmed! first cut delivered this morning Doppler purchased, first training day completed and date identified for 7 further dialysis nurses to train Bioplugs and needles purchased and in use Enuresis alarms purchased-one training patient expressing an interest in nocturnal haemodialysis Sessions for our expert buttonholers set up to train other nurses in the technique

What have we not done ? Still need to update our protocols and written material Roadshows for self care and promotion of home therapies hope to start in May/June Given up on centrifuge purchase Main issue is home haemodialysis nurse time

Evaluation update Home Therapies Project Lead e-seminar 30 th April 2012 Clare Beard Programme Lead, NHS Kidney Care

To ensure consistency and allow NHS Kidney Care to make an overall assessment of the impact of each/all of the Improving Choice projects it is proposed that a list of measures which, with the agreement of project groups, can be collected at least twice within a six month period by each of the kidney units involved and included as part of the evaluation from each project in their final report. Evaluation aim:

Data measures Percentage of patients undertaking at least one aspect of self-care. Percentage of patients in hospital and satellite units dialysing independent of nursing support. Percentage of haemodialysis patients with established button hole access. Number of Improving Choice training sessions / courses planned for staff before the end of February Percentage of staff who will have completed Improving Choice training by the end of October Percentage of planned start patients who have had an opportunity to discuss dialysis options. Percentage of un-planned start patients who have had an opportunity to discuss dialysis options Number of patients about to start dialysis identified for home dialysis / self-care training in the last 4 months Number of patients about to start dialysis who have completed or are in home dialysis / self-care training over the last 4 months Percentage of patients dialysing at home. Patient satisfaction survey use.

Baseline data

Project Assurance update Home Therapies Project Lead e-seminar 30 th April 2012 Clare Beard Programme Lead, NHS Kidney Care

March monthly reporting Risks: Maternity leave Need to agree project mandates Key learning: Need to develop joint working across network Positive patient feedback Stakeholder engagement

Communications update Home Therapies Project Lead e-seminar 30 th April 2012 Clare Beard Programme Lead, NHS Kidney Care

Communications BRS poster Ideas for future external e-seminars and how to guides Future events

Peer support Making peer support work for your patients e-seminar Wednesday 23 rd May, Register via NHS Kidney Care website

Key links NHS Kidney Care website: Home therapies project lead forum: networks/improving-choice-for-kidney- patients-learning