Welsh Renal Clinical Network (WRCN) Board Meeting

Welsh Renal Clinical Network (WRCN) Board Meeting Minutes of the meeting held on Tuesday, at Training Rooms 1 & 2, Bowel Screening Wales, Llantrisant (VC links from North Wales & Morriston) Present Professor John Williams Dr Stuart Robertson Ms Elizabeth Baker Ms Jane Lucy Ms Melanie Wager In attendance Mr David Heyburn Mr Jonathan Matthews Mr Michael Stephens Mr Nick Wilson Mr Stuart Davies Ms Caroline Lewis Ms Catherine Wood Ms Helen Harris Ms Kate May Ms Kim Williams Ms Lynne Callow Ms Nell Brown Apologies Dr Ashraf Mikhail Dr Chris Jones Dr Kieron Donovan Mr Berwyn Owen Mr Bill Morgan Mr Bob Evans Mr Brent Roberts Mr Bruce Whitear Mr John Reever Ms Janet Williams Ms Nell Brown Ms Pam Wenger Ms Toni Hamlett Renal Network Chair Lead Clinician in the North (BCU) Renal Network Lead Nurse (South Wales) Lead Nurse, North Wales Kidney Wales Foundation Renal Network Manager Renal Network Coordinator All Wales Transplant Lead Deputy Renal Network Manager Director of Finance, WHSSC Policy Lead, Welsh Government Directorate Manager, Cardiff and Vale Financial Accountant Renal Network Transport Manager Renal Network Performance Analyst National Kidney Federation Directorate Unit Manager (ABMU) Renal Network Lead for Clinical Governance / Clinical Director (ABMU) Medical Director of NHS Wales Renal Network All Wales Clinical Lead and Clinical Information Lead (Acting Chair) National Renal Pharmacy Advisor Patient Representative Transport Project Director of Finance, BCUHB Chairman, WKPA Interim Director of Planning WKPA Representative of WKPA Directorate Unit Manager (ABMU) Committee Secretary, WHSSC Directorate Unit Manager (BCU) Page 1

Professor Aled Phillips Professor Jean White Professor Paul Dummer Clinical Director of Nephrology, Cardiff and Vale Welsh Government Chief Nursing Officer Non-office member LHB Representativee Agenda Item Action log WRCN14/54 Welcome, Introductions and Apologies for Absence The Chair welcomed attendees to the meeting. Apologies of those members unable to attend were noted. WRCN14/55 Declarations of Interest The Chair INVITED members to declare any personal or pecuniary interests, direct or indirect, in any contract, proposed contract or other matter that is the subject of consideration on any item on the agenda for the meeting. None were noted. WRCN14/56 Minutes of the previous meeting Members RECEIVED the minutes from the Board meeting in December 2014. Members RESOLVED to RATIFY the minutes as a true and accurate record. WRCN14/57 Matters Arising Clinical Review of Networks in Wales Stuart Davies reported that the findings of the review had not yet been presented to the Joint Committee. Catherine Wood anticipated there would be one common model across all of the Networks. David Heyburn advised there would be two workshops held in March to discuss further. WRCN14/58 Action Log See Appendix 1. WRCN14/59 Report of Chair The Chair INFORMED members that the purpose of the report was to provide a general update to the Joint Committee meeting. It is often supported by the financial update, dialysis expansion document and risk register so that the Health Board CEO s have sight of the key issues of the Network. WRCN14/60 Dialysis Expansion/Re-provision Programme Page 2

The Board RECEIVED the expansion programme. Noted comments included: Hywel Dda It has been made clear to both Hywel Dda and Welsh Government that the VAT problem that was raised at Hywel Dda will remain an internal issue for the Health board to deal with. The Network had no involvement or responsibility for this and a briefing has been issued to Welsh Government in respect to the matter. Padarn The unit is expected to open by 9 th March. South East Wales Tender On track to be finishing its first phase of dialogue by the end of March and after this we will have an idea of the subsequent timescales. David Heyburn is comfortable with the procurement processes and contract arrangements. Action: UHW schedule to be revised and expandedd now that the water treatment plant has been completed. Act. 20 Morriston The HealthVision Swansea development has been subjected to delays on account of cabling. This will impact on the replacement of the renal annex causing a knock on effect for the refurbishment of the main unit. David Heyburn didn t anticipate the new annex to be complete until May at the very earliest. There is nothing more the Network can do to influence the timescales. WRCN14/61 Finance Review Helen Harris PRESENTED the finance review to the Board. Immunosuppressant Repatriation Cardiff and Vale are on target to repatriate all of their patients. There are an unexpected number of patients in the Hywel Dda and ABMu areas that are still directed into the Cardiff service. Forecasts to date have only considered the main localities so these additional patients represent a furtherr 200,000 risk to the Networks savings. This has been included within the January position. There have been non-recurrent savings within the English LTA s. Activity in Liverpool, Shrewsbury and Birmingham is unusually low. This has offset the Immunosuppression costs. Stuart Davies hoped the financial plan/forecasting for Immunosuppression would be much improved in the next year. Action: David Heyburn and Helen Harris to refresh the Immunosuppression plan considering patient numbers etc. Act. 21 The Chair advised that from a Network perspective the priority is to Page 3

fully repatriate funding; the location of where the patient is cared for is an internal issue for Health boards. On completion of repatriation the Chair advised that Network would need to consider how far over 600,000 the Network has spent and how much of this Cardiff and Vale Health Board will need to contribute. It was reported that the secondary care costs at ABMu are 70,000 per quarter equating to the projected cost. It is too early to consider the Cardiff and Vale costs. Further monitoring work also needs to be undertaken at BCU to ensure accuracy. Home Therapies Helen Harris reported that the ongoing costs of the Baxter home therapies consumables will have ended as at the end of December due to the National Home Therapies contract having come online. David Heyburn advised that Baxter will be challenged on some of their assumptions; the current financial plan represents a worst case scenario leading up to December. Forecast Nick Wilson highlighted the under spend listed on the financial report and asked if this will remain within the plan. Stuart Davies advised that the Network would not set out to spend the remaining balance. The under spend is a welcome position in what has been an extremely difficult year for NHS Wales. The under spend will be placed back within the WHSSC budget to partly offset their over spend. It is hoped this will be reinstated at the start of the next financial year. Liverpool Activity Nick Wilson challenged the presumption that Liverpool activity will return to contracted levels thinking it was unlikely over the next year. Stuart Davies advised the Network only become aware of activity on discharge hence the importance of accounting for any patients that may be in the system. Michael Stephens advised there have been clues for some time that kidney transplant numbers would fall, the main clue being the number of patients on the waiting list. Caroline Lewis added that NHSBT have scaled back their predictions of donor numbers for the next three to four financial years quite significantly. The Chair cautioned there had to be equality in the North/South divide and that there shouldn t be a service in North Wales that is less effective or efficient than South Wales. WRCN14/62 Quality & Patientt Safety The Chair advised that Dr Ashraf Mikhail had submitted a letter addressed from ABM to the renal registry regarding mortality figures for information further to submission to the QPS Board. Stuart Davies advised that in terms of process, the Network is picking up Clinical Governancee structures. Responses to such correspondence Page 4

should always be via the clinical governance process. WRCN14/63 Dialysis Transport The Chair reported that Dr Kieron Donovan and Mr Bill Morgan would be Chairing a Transport Workshop on the 12 th March. Kate May remindedd the Board that two members of the WAST modernisation project attended the last meeting. Since that time, the Network has formally written to WAST to set-out a formal arrangement that the Network will lead the developments of renal transport within the overall modernisation project. A draft agenda has been prepared. The key objectives of the event are to present the case that the WAST KPI s are not appropriate for dialysis transport. There is good evidence to support this and it is hoped more suitable KPI s will be agreed. The event will also consider options around commissioning and finance and convey the complexities of the current arrangement. A report will be prepared concluding the workshop. Nick Wilson reported that North West England are rapidly transferring to a contracted out-service and thought we may increasingly see service providers changing throughout the UK. Bill Morgan responded that WAST accept there will be more than one provider. Bill Morgan asked that two/three patient representatives attend the WAST transformation meetings (occurring once every three months). Melanie Wager advised that she would attend in the capacity of Network QPS representative. WRCN14/64 AKI Kate May informed the Board that work is progressing against each of the workstreamss for the AKI project. Two outstanding workstreams that are in the process of being set-up are the community element and the Nephrology group. Guidelines are in place for the management of AKI for which we need formal endorsement from Welsh Government. These are currently in use around Wales and the AKI Steering Group has agreed them. The Data Analyst has been appointed and will be working on the data collection workstream to help establish a baseline of AKI in Wales and some ongoing data systems that allow the ongoing monitoring of AKI across Wales. Nick Wilson highlighted that a patient safety alert had been issued in England. Following discussion, the Steering group has agreed that we would defer doing something similar in Wales. In the next several weeks the sixth and final LIMS system will go live. Page 5

There s a concern that BCU are not engaging as fully as the Steering Group would like. Caroline Lewis is expected to have discussions with representatives at BCU around this. Stuart Robertson advised he was aware of the BCU participation issue but as the project needs to be non-nephrology lead there is a resistance for Nephrology to take the work. The lack of engagement appears to be between the AKI Champion and the Steering Group. Caroline Lewis confirmed she would be meeting with the medical director of BCU and will be discussing this area. WRCN14/65 CKD Nick Wilson highlighted three issues: NICE guidance was issued in July of 2014 and included some issues around the categorisation of CKD. Whilst the lab systems are being prepared to address this, Nick felt it would be helpful for the Network to provide direction and leadership. There could be some cost implications. HQIP audit and quality improvement project has gone through it s pilot year. Within Wales it is expected that dataa will be available at the end of the financial year. A project that may cover 12 labs in England and Wales will provide EGFr graphs to GP s and possibly patients to see their decline in their function. There may be some limited costs associated with this. The Chair remindedd members that whilst the Network is not specifically commissioned in the area of CKD, it has ventured into it in a number of different ways. A CKD group was once meeting regularly and the Chair felt it appropriate to reactivate this group in order to get clinicall views on the areas Nick Wilson had raised. Health Board representatives could also be involved. David Heyburn agreed stating the Network needs to consider its strategy over the next two years. Caroline Lewis added that Mr Andrew Goodall has directedd a shift of focus to Primary Care. Stuart Robertson highlighted the difficulties of getting Primary Card engagement in North Wales. Without this engagement it was thought we will not be able to progress the work. It was AGREED a collective view would be obtained from the CKD group to inform/advise primary care. Caroline Lewis advised that Welsh Government were in the process of recruiting an all Wales Primary Care lead. WRCN14/66 Vascular Access Michael Stephens advised that the Vascular Access Group meets biannually to discuss issues on an all Wales level. In 2014 Swansea representatives invited Michael as Chairman of the group to visit Page 6

their access unit to provide views on specific problems they were experiencing. The process was found to be extremely valuable both for bringing back good practice to Cardiff and Vale and also for the visited unit. A report was written and shared with the wider Vascular Access Group whichh resulted in beneficial changes for all concerned. Based on this Swansea visit, the opportunity was offered to other localities to be visited by an Access team. BCU accepted this offer and were visited in February. The team spent two days visiting Bangor, Glan Clywd and Wrexham units to assess their programme and identify areas of good practice to share with the rest of the community. Michael conveyed how valuable it was to see how different units had set up their access service. There isn t an agreed or accepted way of setting up the service. There are some areas were certain units are excelling and thesee could easily be translated into other units without big changes in resource input. The visits overall will enable suggestions for change and raising the profile of vascular access generally at executive level for each of the Health Boards. Michael Stephens stressed that Vascular Access was hugely important for renal programmes. A report has now been drafted and will be finalised within weeks. This will be submitted to the Network Board and BCU for information. A third visit to Cardiff and Vale will take place in April which will conclude all units having been visited. Michael Stephens finished by stating that a genuine all Wales clinical community has been formed where each member is interested in improving practice; all are listening to each other and willing to accept comments from colleagues in different Health Boards. It has been very positive and all have engaged. Stuart Davies felt this was an important opportunity as it s an important precursor to everything that goes on in dialysiss and the success of dialysis. Stuart Davies asked how we could turn this report into something the Network could use. Michael Stephens felt it was a fine line stating that the clinicians have taken on the work and there s a genuine opportunity for Wales to become world leaders in Vascular Access. Nick Wilson advisedd that the service specifications once agreed would create a vehicle for discussions around these areas. Nick Wilson felt that commissioner and clinician to clinician engagement were not mutually exclusive and both could be done at the same time. Stuart Robertson advised that he d initially been resistantt of such a visit as BCU wanted to see what they could adopt internally in the first instance beforee getting an external view. Tours of this nature around different units used to be commonplace 15 years ago. This type of internal inspection could be useful in other areas such as Page 7

Transplant Assessment and Transplant follow-up. Nell Brown added that the visit to Swansea was an extremely positive experiencee and there was a lot gained; but it was a reactive visit. Nell Brown felt we should be more proactive with scheduled visits in the future. WRCN14/67 Service Developments Technical Services Document David Heyburn advised that in 2013 the renal technical services in Swansea submitted a business case which detailed the anticipation of expansion of the service, both for the roles and the expansion of territory. The business case was supported and included within the financial plan but has not yet been agreed by the Board. The business case is well structured, supports stronger leadership, increased capacity and the inclusion of an apprentice for the whole of South Wales. The business case is also linked to the Home Therapies contract. Approval is sought from the Board to agree the business case for submission to Joint Committee. Stuart Davies wanted to understand the benefits and asked how we could ensure this was protected and delivered. Stuart was unclear on how much of the business case was due to non-replacement of previous posts and how much was new. David Heyburn responded that none of the business case related to non-replacement of posts and clarified that the business was solely about developing the service. The new structure proposes to reappoint a band 6 post and add an 8a post as head of service. There would also be a band 4 trainee or band 3 assistant technician added. Nick Wilson advisedd that the band 4 post was omitted from the costing schedule. The Chair advised he was in no doubt that Swansea required additional personnel looking at the way the service has grown and considering the increasing amount of work the technicians have taken on board. The Chair fully supported expanding the service particularly seeing as the money has already been set aside within the budget. The only concern was that by appointing an 8a it gives assurance that someone is present to direct the service but doesn t cover additional technicians to work the increased service. David Heyburn advised that the 8a would also be covering technical work areas in addition to providing leadership. Stuart Davies felt this may get the Network into difficult territory in that we would be nfluencing exactly how a service is provided and not focusing on buying the end product or output. We are very much specifying how the individual service is run down to the very detailed staffing structure and this does set a number of precedents. Page 8

Nick Wilson added that on the basis of equity, there may be an equivalent proposal from BCU. Nick asked if this would be affordable and would the Board support a similar plan for that region. David Heyburn felt we should consider if the business case links to the Network s priorities. If it does and it is affordable, we should proceed. The Networks intention is equity and this needs to be achieved bit by bit. The Chair finalised by asking for clarity on how the changing structure would ensure an improvement in what is already delivered other than the increase in personnel before progressing. Action: David Heyburn to further develop the paper and the Band 4 is to be costed within the schedule. Act. 22 Renal Youth Worker David Heyburn advised that this post had been discussed for some time within the service. There is a common problem amongst young adults in accepting they have a long term condition and being compliant with treatments that will provide the best outcome for their wellbeing. At the Audit meeting in September it was found that such patients do not take their medicines, do not engage with the service and as a result lost their transplants and had to return to dialysis. This has also happened in other parts of Wales equating to four transplant losses within this group of patients. This also occurs elsewhere in the UK and other units have trailed youth workers as a means to providing peer support and to assist growing into life with a long term conditionn and the management of this. The proposal is to trial a youth worker for South Wales. When discussed at Management Team there was support in principal but a request for a framework of measuring its success. It was suggested that the service should provide outcome measures and to consider an appointment for a fixed period of time in order to evaluate whether funding should be continued. Graft survival within the patient cohort would be one of the main specifications of evaluation. The submission for funding is for a whole time band 5 renal youth worker. A graft costs on average 35,000 in the first year so if the post is able to save just one transplant per year then the post becomes cost neutral. Keeping one patient from non-adherence, loss of treatment etc would also impact on the value of the service although not necessarily cash releasing. Melanie Wager questioned the targeted age rage (14-25). Melanie asked if 14-18 would come under paediatrics and therefore a different budget. Stuart Davies confirmed that WHSSC commission paediatric nephrology. Catherine Wood confirmed that the application for funding has been discussed with the paediatric nephrologists. Stuart Davies asked if there was hard evidence behind the graft Page 9

failure because it seems to be very specific and surprising the numbers are so great. Secondly, in measuring success, we move from the very specific which is monitoring graft failure and patient compliance to something which is something very input based. Stuart felt there should be harder measures of graft failure and compliance to measure the success of the programme. Melanie Wager felt that if a patient attends clinic they are more likely to engage in their own care, take their medication and be compliant. Measuring attendance at clinic is therefore just as important. Michael Stephens agreed and stated it would take years to change behaviours to save grafts. A youth worker would more likely be a longer term gain. The timing of the benefits need to be clarified along with review points. The Chair asked that the job description be very specific that the post covers the entirety of South Wales and applied to Swansea as much as Cardiff. This is not very clear at the moment. Secondly we could see a similar application from BCU. With all the changes proposed the Network Board would be happy to support the submission. Provisions at North Wales will need to be considered along with what the Liverpool service do with reference to youth work. Action: David Heyburn to further develop the paper. Act. 23 WRCN14/68 Lead Nurse Post Liz Baker advised that since the conception of the Renal Network there was an appointment of two Lead nurses on a part time sessional basis for both North and South. Although the Network has changed and developed during that time, it s thought the roles for the lead nurses has not necessarily changed though it is clear it does need to change. Both roles are working alongside operational issues making it increasingly more difficult to fit Network duties in tandem with an operational role. Discussions around having a full time lead nurse for the Network have taken place with Professor Jean White. Professor White was very supportive of the fact that there should be a strongerr role within the Network to link into areas such as Healthcare Standards. Professor White was keen that the role looks at educational issues and nursing research. There are issues in these areas currently. More and more clinical work is being dedicated to audit. This role is thought to be pivotal to those areas and mechanisms. Nursing is the biggest workforce within the renal setting and therefore it makes sense there is a full tine lead within the Network. Jane Lucy echoed the difficulties in maintaining time for the Network whilst working at an operational level. Page 10

A draft description and job specification has been prepared but recruitment processes such as banding would need to be followed as this is a new post. The documents will be checked with the lead nurse at WHSSC in the first instance after which we can seek approval. The Chair added that there was a need to check the post with HIW to ensure it would recognise any inspection process that the Network organise. Action: The business case is to be submitted at the next Act. 24 Network Board meeting. WRCN14/69 Home Therapies David Heyburn advised that the implementation of this has not gone as smoothly as anticipated. There was a rush for ministerial approval to ensure the deadline was met. There are some issues around the ordering process using the oracle system. Along with procurement, the Network are now looking to finalise all of the paper work and instructions. Most of the contracts have been dealt with. All of the prices will be retrospectively applied from the 1 st January. Procurement should be contacting all of the teams to establish the first monitoring meeting. WRCN14/70 Any Other Business David Heyburn asked Caroline Lewis about the delivery plans and whether the Network was expected to prepare another one. Caroline Lewis advised that a paper was being considered by the executive directors group and Welsh Government about where we go post the next election. If there is a strategic policy position to consider, this can be discussed on a case by case basis. WRCN14/71 Details of Next Meeting The next meeting will take place on the 5 th May 2015 at Bowel Screening Wales. WRCN14/16 Signed Professor John Williams (Chair) Date Page 11

Appendix 1 Action Log following the previous Network Board Meeting: 18 th December 2014 Action Page Background: Ref. Act. 13 3 The Lead Nurse job description has almost been prepared. Act. 14 4 The HealthVision Swansea development has been subjected to delays on account of cabling. Act. 15 5 Michael Stephens added that Cardiff & Vale are audited regularly by NHS BT externally and are likely to be the only unit in the UK now fully following the NHS BT guidance. Act. 16 5 Board members are asked to consider the paper and send back any comments by the 24 th December. Act. 17 7 Factual inaccuracy on page 6 of the Dialysis Transport paper under standards and performance. Dialysis frequency appears to be listed as 6 times per week. Act. 18 11 Schedule of meetings has been drafted for 2015. Act. 19 11 Chris Brown has looked at the three main therapeutic areas for medicines for renal and is working with shared services to decide what should go out for tender. Action: To be discussed further at the Programme Team meeting in January. Update paper/response to be submitted to Board on the progress of HealthVision Swansea. Mike Stephens to be invited back to Board to present a paper describing the safety and quality of the performance from the transplant program in South Wales. A similar paper should be prepared in the North. David Heyburn coordinated a response from the Network and submitted. Update: On the agenda On the agenda David Heyburn to make the alteration. Complete Jonathan Matthews to circulate a letter Complete to Board members detailing the structure of Network meetings. David Heyburn to circulate a document written by Chris Brown detailing the work of the Medicines Group. Mike Stephens has agreed to present a paper at the next Network Board meeting. DH advised he d not yet had a response based on the content of the report. 17th February 2015 Page 12

Appendix 2 Action Log concluding the current Network Board Meeting: Action Page Background: Action: Ref. 20 3 South East Wales Tender UHW schedule to be revised and expanded now that the water treatment plant has been completed. 21 3 The financial plan/forecasting for Immunosuppression needs to be much improved for next year. David Heyburn and Helen Harris to refresh the Immunosuppression plan considering patient numbers etc. 22 8 Proposal to expand Technical Services in Swansea and David Heyburn to further develop the paper and the West Wales. Band 4 is to be costed within the schedule. 23 10 Proposal for Renal Youth Worker for South Wales. David Heyburn to further develop the paper. 24 11 Proposal for full time Lead Nurse for the Network. The business case is to be submitted at the next Network Board meeting. 17th February 2015 Page 13