Scaling Up Improvement Round 2

Final Implementation report

Project Title:

To Implement and Evaluate a Programme of Shared Haemodialysis Care (Dialysis Self-management Support)GIFTS Ref: 7664 Lead Organisation: Sheffield Teaching Hospitals NHS Foundation Trust Partner Organisations: Kidney Research UK, Yorkshire and Humber CLAHRC Project lead: Martin Wilkie Date of report: 21st December 2018

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FINAL Progress Report

21 December 2018

1. Abstract

Kidney failure has a major impact on quality of life and survival. Most dialysis patients spend many hours every week in hospital where dialysis is delivered in an institutionalised setting.

Shared Haemodialysis Care (SHC) supports people to be involved and take more ownership of their care with a range of treatment tasks. This person-centred approach of providing choice gives people the confidence to learn at their own pace, improves the care experience and can lead to home or independent dialysis, which is associated with better quality of life.

The SHAREHD programme has been led by Sheffield Teaching Hospitals NHS Foundation Trust and evaluated by the National Institute for Health Research (NIHR) Collaborations for Leadership in Applied Health Research and Care (CLAHRC) Yorkshire and Humber Region via a cohort questionnaire-based study (SHAREHD IRAS ID 212395) supplemented by interviews with patients, carers and staff members.

Objectives were to scale-up and sustain an established regional quality improvement initiative. Teams of patients and staff at 19 sites across the UK attended collaborative learning events (LEs) that share and test different ways of increasing patient engagement in their dialysis care. In wave one 6 teams participated (from Jan17), in wave two (from July17) 6 further teams joined with wave one into a single collaborative. A third wave of 7 trusts attended 3 learning events (from June to Dec18) and joined the shared care movement.

Key to progress has been bringing together different trusts in quality improvement collaborative workshops, a strong core team, robust independent evaluation, an effective program framework, as well as the growing importance of the person centred care topic. Challenges have included establishing formal research protocols and understanding why some trusts have found engagement more difficult than others.

Shared Care did not start or end with this programme but we believe that by providing the framework to articulate the intervention and an opportunity to collaborate, share ideas for how to deliver and develop several robust outputs the programme has helped to draw together those implementing this patient centred approach into a cultural change movement that is supported by the NHS 5 year Forward View to advance patient centred care.

2. Project journey

SHAREHD launched publically 22Sept’16 at the Manchester Home Therapy Forum and will have its final event in Leeds 22Jan’19. Its objectives, core team, participating teams and timelines have remained pretty stable but it has nonetheless evolved to become more confident in the shared care approach over the programme period.

Prior to the formal launch we established the organisational framework identifying and involving the key stakeholders and visited all 12 trusts. We wanted to understand our partner’s goals as well as ensuing that the research was correctly established.

The programme board discussed and agreed plans and continued meeting every 6-8 weeks to ensure that direction and progress was regularly monitored. We did not always stick rigidly to plans if the original intentions were no longer valid but ensured these were group decisions

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e.g. the communications plan was extensive but costly, so we agreed to start simple (pull up posters, lanyards, pencils) until we had a better idea of what was really required by the programme and participating trusts . Over time we recognised that big central spending was not appropriate and local initiatives using local resources was much more effective.

Core to the quality improvement (QI) collaborative were the learning events and action period telephone calls. These opportunities could not be wasted so we planned and reviewed every detail carefully via weekly workstream meetings reviewing the feedback evaluations to inform the next event. We found that the collaborative itself was the key enabler with QI being the language to share ideas and approaches. We involved patient partners in the teams and remembered to celebrate team successes no matter how apparently small.

Such was the ground swell of interest and enthusiasm for the programme from other trusts that the Health Foundation agreed to fund a 3rd wave bringing the total to 19 formally involved trusts.

For wave3 we consolidated into 3 focused learning events, supported by monthly logs and pre and post patient and clinical questionnaires. We used the Kirkpatrick model to define our objectives, documented each session and tied them to evaluation forms. We now had a repeatable format to be tested by the 3rd wave and available to re-use.

We know that many other teams would like to start SHC. A final event is planned that is open to all interested in SHC maximising the spread and providing opportunity to network and share ideas. Via Facebook and the website there is a growing ‘faculty’ of practitioners who share ideas, and encourage others to evolve partnering care with patients. In order to capture SHAREHD experiences a roadmap and toolkit was developed and tested by Wave 3 teams.

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Relationships and enablers: Being part of the wider kidney community was essential to ensure the required culture

change is embedded. Bodies such as Kidney Research UK, Kidney Care UK, KQUIP, National Kidney Federation, British Renal Society and the UK Renal Registry all helped to include SHC into specifications and guidelines including NICE and the Renal Association. This is an ongoing process to strengthen shared decision making.

Co-production with our patient partners at all levels has been a critical component of the programme

We have lost SHC friends due to ill health, new jobs or growing families. We are always very sad when this happens but are then delighted when others have stepped forward to take an active role.

The SHC leaflet has been repeatedly used by the trusts updating to include local photographs and logos.

A new, streamlined competency booklet has been developed alongside the programme which gives an, updated version of the competencies for staff and patients.

Bringing the teams together into a central location has been key to team building and collaboration in a relatively informal setting. Facilitating teams to travel together gave additional team time.

Main challenges Shared Care needs to be promoted until it is the normal way of working and self-

perpetuating. Priorities, staff and patients change and SHC has been shown to be one of the first things to stop when the ‘going gets tough’ so active sustaining is required to not slip back

Co-production will always be a challenge, we recognise that this is still a new concept for many and is often dependent on individual enthusiasm. This became second nature to the core team but units need to explore their own ways of developing co-production to best respond to and utilise local patient partner skills.

Time taken to achieve research approvals is significant but is worthwhile. We continue to face approval challenges for NHS Digital data to complete research analysis. The lesson is to keep requests clear, submit as early as possible and be tenacious.

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Reflection and learning – to implement at scale

Research study cohort recruitment varied between sites and was not as straightforward as expected despite simplified questionnaires and captive patients. Consents for 2nd level patient/carer interviews were minimal as their numbers were not protocol targets. Learning is not to underestimate the time and tenacity required to recruit for effective research activities.

There were varying levels of implementation and event attendance and some teams couldn’t spend time together between events due to many factors outside the programmes control. We found little real resistance to the ideas rather other priorities got in the way. We recognised this but still kept them involved and celebrated their successes no matter how small.

Many trusts found that being involved and seeing other teams doing similar activities really made them feel part of a movement which enhanced motivation.

Unintended consequences Delivering articles and workshops helps to grow and evolve the understanding of the

intervention and re-inspire action for both deliverers and receivers. Size and constitution of the learning events is important; 12 teams were too many and

created more of a conference feel. Having approx. 6 trusts with 5-7 members within each team allows everyone to have their say and not feel overwhelmed.

We have tried to support networking rather than just assume that it will happen. Asking teams to present to the 3rd wave or support at conferences not only recognises the successes but also builds their confidence. Filming in ‘different’ units also has the same effect

We minimised the use of technology to teleconferences which gave staff an additional skill and showed that it was possible to keep in touch without traveling.

Given the varied environments and allowing local adaptation meant that teams could build on what they already did well often enabling SHC to take off quickly.

Knowing that we only had minimal time with key stakeholders at the Advisory and Dissemination Board meant we focused on 2 predefined questions to answer we delivered some really valuable insights and did not ‘drift’ off topic.

Use of WhatsApp was an extremely powerful teambuilding tool. It was used by the patient group, the core team and trust teams. It enabled relationships to grow and information to be shared in a safe environment. See the paper “Using social media for programme theory development: the role of emerging technology in complex programme evaluation” for more information.

3. ImpactPage 6 of 20

Individuals and teams have learnt and developed through this process. The primary beneficiaries being haemodialysis patients offered partnership in their care where previously that wasn’t facilitated. With over 19 trusts involved well over 2000 patients are now offered choice.

Providing patients the opportunity to get involved locally to a level that suits them both with their care and, if they wanted, in helping progress the programme has allowed patients to grow at their own pace and be supported by other patients in the focus group.

In addition we have seen the benefit on staff. Working together in partnership changes the dynamic of the working environment and gives staff an opportunity to grow themselves. Staff gain the confidence that they can teach, and patients gain the confidence that they can support themselves. It’s a win/win situation.

The impact on organisations can be seen in the infographic produced below as shared care supports many other measurable objectives

The diagram below shows the internationally reach of the website borne out by a team from Canada attending the All Hands event in Jan2019.

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Total attendance at the initial 12 learning events was significant with over 120 different staff and 13 patients. Some sites sent core teams and others took the opportunity to “spread the buzz” to different staff. We learnt to be flexible in our delivery approach ensuring each event stood alone but also built on the overall whole.

We found that the collaborative, including patient focus groups, sharing ideas and identifying realistic goals (PDSAs, #whyidosharedcare or team pledges) itself facilitates mind-set change as this feedback states “it’s really useful to come together and continue to learn from each other, very motivating”.

We took the opportunity to highlight the importance of staff supporting patient activation/shared care by including a CS-PAM study in wave 3. Over 111 surveys were returned giving teams the opportunity to understand their wider teams and how efforts to influence could be focused.

We have many quotes and experiences from patients and staff as seen in videos from Leeds and RUBISQi and backed up by Realist, Health Economic and Qualitative evaluation to be delivered in January 2019.

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Patient experiences are the most important impact of this work. Our patient lead felt that he was meaningfully engaged with the programme which he believed has been patient centric. He described this in Henwood et al. Co-production: learning from the Shared Haemodialysis Care programme. British Journal of Renal Medicine 2018; Vol 23 No 2

Original plans for patient engagement included setting up a Patient Advisory Group (PAG) and encouraging patients and staff to develop a ‘partnership of co-produced care’ such-as including patient champions within each team. However recruitment of patients has been difficult at times and although the PAG started well it was difficult to maintain in the format it was intended and ceased. Having patients attend learning events with their teams was crucial and ‘Patient only’ sessions during Learning events has been meaningful and impactful

It was key to understand the meaning of ‘partnership’ and ‘co-production’ and to ensure that individuals locally adopted the most appropriate approach or a tool for them. We learnt that dictating a particular approach was counter-productive.

4. Sustainability

Starting sustainability planning early during the programme was vital. Research evidence will be published in 2019 after the programme is concluded so waiting untill it is released would miss a huge opportunity. We reviewed previous programmes of this nature and concluded that simply providing trusts with additional resources could be counter-productive and imply that SHC was ‘additional’ work that required additional staff. Our approach was to work with teams to advise they built it into local systems (procedures working practices) so everyone was responsible. Coordination would be required, which may take additional resource, but this is to ensure everyone is focused on achieving the correct patient centred goals.

We recognised that sustainability is not one thing rather it is a multiplicity of initiatives. The mind-map below, and associated document, helped us understand what we meant by sustainability and what could be achieved within the programme timeframe.

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We advocated openly that SHC required a cultural change with participants being movement members with individual #whyidosharedcare motivations. This constant thread has been used in communication, twitter, posters, articles and built on for the RubisQI video and written personal experiences.

Sustainability Steps taken :‒ Sustainability plan written and reviewed.‒ Production of SHC aides (roadmap, local plan, toolkit document) and monthly log.

These have been updated and reviewed within wave 3‒ Ongoing faculty of staff and patients supported by the website, local hubs and the

nurses Facebook page.‒ The “All Hands” event (Jan2019) to reach beyond SHAREHD participants making it

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open to everyone.‒ RCN accreditation for the associated SHC Course and creation of a repeatable set of

Trust level learning events.‒ Use of standard NHS Sustainability Tools‒ Some trusts developed local training courses with support from the SHC course lead or

linked shared care to other initiatives such as TP-CKD or the Liverpool new starter pathway

‒ At learning events have worked with teams to develop their own local shared care plan including regular collection of local data and communications such as regular presentation of numbers and developments at directorate management team meetings and other QI initiatives

‒ The importance of encouraging Shared Care earlier in the patient journey/pathway as part of holistic “Patient Activation” is increasingly being understood. e.g. Liverpool /York’s initiatives ‘pre-dialysis’ particularly after the Haemodialysis treatment route/decision has been decided.

Biggest Risks/Challenges and Plans to overcome:

‒ Measures building on existing data collection to minimise burden are critical along-with recognising that what is relevant for national bodies is not necessarily appropriate for individual care plans. Working with the UKRR we hope to enhance the annual PREM (Patient reported experience measure) to ensure that the ‘Shared Decision Making’ domain also measures SHC choice

‒ Local performance indicators/audits continue to be promoted to show that choice is offered to patients is more important than number of tasks being performed. We will work with wave3 teams who have been collecting their data monthly for the last 6 months and also with the Welsh Renal Network to test and evolve these tools.

‒ When the programme finishes energies naturally refocus to other projects. We plan to maintain SHC profile using the current focus of patient centred care in the NHS and presenting the publications over the next 12-18mths

‒ Co-production remains a challenge, It is hoped that the new Kidney Patient Involvement Network (KPIN) initiative will support patients to get involved more widely and promoting shared care as a partnership/aka co-production will reduce this barrier.

Wider support for SHC has come from the following sources:

‒ NICE guidelines on Renal replacement therapy & Conservative Care‒ Shared Care is now included in Renal Association/Haemodialysis guidelines‒ Welsh Renal Network is rolling out SHC with support from the SHC course lead‒ The Renal “Get it Right First Time (GiRFT)” team will enquire of SHC at their trust

visits.‒ SHC is a Case Study within the 2018 “Spread Challenge” Health Foundation

Publication‒ Commercial Organisations are showing a willingness to invest in SHC both in-time, in-

kind and financial support.‒ SHAREHD is included in the planned HF supported “Renal QI learning report” as it

draws threads of learning across 4 projects.

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Communities targeted and contacts made?

Each trusts gained Executive commitment via a signed agreement which was followed up mid programme with a status report letter. A follow up letter will also be sent to show the progress individual trusts have made. The @sharemydialysis twitter feed has been registered with the Patient Information forum as a link for ongoing involvement between the two areas.

Some collaboration ‘hubs’ where SHC ideas are shared are in place such as the Midlands and the North. We hope to encourage more regional hubs of this nature such as The Welsh Renal Network.

‒ A team from Ontario Canada are attending the January Event to get ideas as to how to implement SHC.

‒ Working with charities, grant bodies or NHS Education to maintain the Nurse training course and possibly rerun learning events at the trust level.

5. What’s next?

The final programme event “All Hands Together Shared Haemodialysis Care” is on 22Jan19 in Leeds. It will announce initial findings from the research study, celebrate with all 19 participating trusts and give an opportunity to share all out outputs, tools and learning along-side charities, commercial organisations and other stakeholders. The goal is to continue the cultural change that is required to make shared care not seen as separate and the way dialysis is delivered. This event is open to anyone interested in SHC - those who are already doing it and those starting their journey. We are broadening the agenda to explore how related initiatives can link with shared care (such as the New starter Pre-dialysis Pathway) to broaden cultural change beyond centre-based haemodialysis. We are very excited at the reach this offers us and expect attendance from all parts of the UK.

The remainder of 2019 will be taken up with completing the evaluation work and developing relevant reports and publications. We are planning several peer reviewed papers in our publication plan in order to spread what we have learned as widely. The goal is to give the research given sufficient space to explore findings in detail in reputable academic journals. We recognise that writing and publishing such papers takes time so have spread this work out over the next 12-18 months.

The next 5 years we hope to continue with some of the key shared care faculty teaching that evolved out of the Closing the Gap programme and has, to date, been maintained through various charity sources. Our ideal funder would be NHS Education since this will allow us to spread the training nationally as well as into other similar long term conditions that would benefit from a similar cultural change to that described by SHC.

We hope that the January event will become an annual ‘academy’ along with local coaching Page 12 of 20

workshops/study days that will allow teams to come and gain new ideas or simply to refresh their ways of working to continue to nourish shared care within their unit.

That the NHS 5 and 10 year plan has patient centred care at its heart truly supports the message that shared care delivers and we therefore hope will ensure this culture change is permanent.

6. Communications, resources or tools

External Support and Recognition : The planned Renal Association Haemodialysis Guideline will include SHC Changes to the NICE guidelines on renal replacement therapy and conservative

management (www.nice.org.uk/guidance/ng107 October 2018) reference existing NICE recommendations on Patient Experience in adult NHS services (section 1.3 'Tailoring healthcare services for each patient' and section 1.5 'Enabling patients to actively participate in their care').

We have been invited to speak at the EDTA/ERA (European Renal Association) in June 2019 title “Shared-care improves patient outcomes: What is the evidence?”

Several nominations for awards have been achieved by the teams including one by Leeds for the Nursing Times Awards

We have discussed at the learning events that communication is multifaceted and can be one to one, within units, within trusts and external to the trust. Some teams have grown tremendously and have become 2nd leader advocates of the concept presenting and meeting with other teams. We have not tried to keep a handle on this rather allowing it to grow organically. – below are some examples of the work they have done both individually and co-produced with patients:

Sunderland presented at UK Kidney Week and at EDTNA in Genoa (Sept 2018) 3 posters relating to Shared Care were included at UK Kidney week 2018

(Wolverhampton, Heart of England *2) and Andy Henwood presented SHAREHD within the KPIN presentation on NIHR guidelines

Wolverhampton Patient & carer open day (96 patient and carer attendees – 8th September 18)

Heart of England Shared Care achievement awards (13th September 18) Liverpool Shared Care Launch (25th September 18) Liverpool Patient Presentation on SHC to their Board (Sept 2018) Belfast Shared Care launch (3rd September 18) Shared Care mentioned in the BBC Matron Medicine & Me documentary with Dr

Ranjan Chaterjee revisiting the Manchester Royal Infirmary Renal Department. Summer 2018)

Local Articles at the following sitesPage 13 of 20

o Belfast (NHS website)o Sunderlando Wolverhamptono Heart of Englando Leeds Bulletin Spring 2018 (attached for information)o Kilmarnock Local Press Release (attached for information)

Kilmarnock radio Interview at West FM Other videos were produced by Omagh and Kilmarnock

Links to External materials including publications Website (https://www.shareddialysis-care.org.uk) Videos

o Rubis QI Video 1 (https://www.youtube.com/watch?v=uexo0zE6rpM)o Rubis Q1 Video 2 (video in draft awaiting final edit and publication)o Health & care Videos * 9

(https://www.shareddialysis-care.org.uk/shared-care/training-videos)o Liverpool Launch (facebook) https://www.rlbuht.nhs.uk/staff-blogs/patient-

experience-blog/the-person-who-knows-your-body-most-is-you-shared-care-launch-event-empowers-patients-in-their-own-treatment/ Or https://www.shareddialysis-care.org.uk/sharehd/sharehd-news/liverpool-launch-shared-care-1

o Leeds - or #whyidosharedcare (https://youtu.be/Rc5LwtvzLG8) Articles / Abstracts

o Protocol publication Dec 2017 (BMC Nephrology : Fotheringham J, Barnes T, Dunn L, Lee S, Ariss S, Young T, et al. Rationale and design for SHAREHD: a quality improvement collaborative to scale up Shared Haemodialysis Care for patients on centre based haemodialysis)

o BJRM : Barnes et al. What I tell my patients about shared haemodialysis care. British Journal of Renal Medicine 2017; Vol 22 No 2)

o Henwood et al. Co-production: learning from the Shared Haemodialysis Care programme. British Journal of Renal Medicine 2018; Vol 23 No 2)

o Henwood et al. Take Control,,, Shared Haemodialysis Care (SHC) IS Patient Partnership Kidney Life Winter 2018 2 Abstracts and Oral Presentations were included at the Heath Service Research UK and European Evaluation Society :

‒ Combining Realist with Developmental and Utilization-Focused Evaluation Methodology: conflict or symbiosis?

‒ Using social media for programme theory development: the role of emerging technology in complex programme evaluation

External and Internal Presentations and Artefacts

To be found on the websiteo All Learning Event presentationso Key conference presentationso Marketplace of ideas from other teamso Newsletters

Learning Event Documentationo Wave 3 Course content & Objectives

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o Workbook and Local Plan Inputs v18o Sample Learning event playbook (from Wave 3 event 3)

Frameworkso Roadmap v1.1o Co-production framework Document v1.4o Monthly Wave 3 Log Template v1.5 and sampleo Toolkit Document v1.1

Infographicso WHY bother with Shared Care – managers infographico MCA/UKKW postero Celebration Certificateo Individualised Pop up banned for sites

SHC Sustainability Document v1.1 Renal Association / Kidney Care UK - Patient Information Leaflet on Shared Care

(draft)Core Team Programme Conference Activities

Risk Register Project plan Lessons learnt log

Post evaluation presentations and publication plan :

Theme / Title Summary Target journal(s) Target submission

Rationale and design for SHAREHD: a quality improvement collaborative to scale up Shared Haemodialysis Care for patients on centre based haemodialysis

https://doi.org/10.1186/s12882-017-0748-6

BMC Nephrology Published 24/11/2017

Primary End Points

Following a randomised stepped wedge implementation of an intervention to increase patient completed tasks on the haemodialyis unit, what is the change proportion of patients completing five or more tasks, home haemodialysis, patient activation, hospitalisation & vascular access complications

Clinical Journal of the American Society of Nephrology

Wed 01/05/19

Economic Evaluation of shared haemodialysis care

Detailed ground-up costing of training and implementation of shared haemodialysis care and the associated savings as assessed through decreased nursing time, improved quality of life, decreased hospitalisation and increased home-haemodialysis uptake for the lifetime of the patient.

Value In Health Wed 01/05/19

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High level programme summary

How I treat : Shared HD Care.An invited submission for the CJASN Kidney Case Conference series.

Clinical Journal of the American Society of Nephrology

Fri 01/03/19

Sympton Burden according to Dialysis day of week

Currently patient reported outcome measures are the high value currency for haemodialysis patients, but the methods surrounding their measurement are not established. SHARE-HD has shown that the day of the day of completion in relation to a patient's dialysis schedule affects responses to the symptom questions in the Your Health Survey, highlighting the importance of standardising the assessment process.

Nephrology, Dialysis and Transplantation

Sun 01/09/19

Residual barriers to home-haemodialysis following a complex intervention to increase participation in haemodialysis tasks

Following an 18-month complex intervention to increase participation in haemodialysis tasks which could decrease patient-perceived barriers to home-haemodialysis, what residual barriers remain and what interventions could reduce these?

BMC Nephrology

Sun 01/09/19

Co-production learningsWhat is the formula for co-producing change in self care practices on dialysis setting

British Journal of Renal Medicine - diverse readership including doctors, nurses, managers and patients.

Summer 19

Patient Activation, Clinician Support for Patient Activation and complex interventions in self-efficacy

Recognising NHS England's prioritisation of PAM and CS-PAM the relationship between the two in chronic disease will be formally explored in Wave 3, determining if increases in PAM and self-efficiency are conditional on high CS-PAM levels, and if quality improvement collaboratives improve CS-PAM

BMJ Quality and Safety

Wed 01/05/19

Variation in PROMS and PREMS over time and relevance to economic evaluation

Time of day, day of the week and time of the year have all been shown to affect responses to patient reported outcome

Value In Health Sun 01/09/19

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measures. If these variations need to be considered in the evaluation of interventions which are conducted over the medium to long term is unknown.

Qualitative / Realist Findings

Following established guidelines for reporting Realist Evaluations: Wong et al. BMC Medicine (2016) 14:96DOI 10.1186/s12916-016-0643-1. e.g. "Present the key findings, linking them to contexts, mechanismsand outcome configurations. Show how they were used to further develop, test or refine the programme theory" & "Summarise the main findings with attention to the evaluationquestions, purpose of the evaluation, programme theory andintended audience"

Implementation Science

Wed 01/05/19

Realist/U-FE/Developmental combined Evaluation Methodology

This is likely to be a paper with a wider focus that the SHD project, but will potentially use it as a key case study.

Evaluation Sun 31/12/18

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7. Finance updateAny underspend will be retained against the following activities :

o Costs of travel to conferences where we have been asked to present findings or learnings from SHAREHD such as where we have been asked to talk at the ERA June 2019 on “Self-care improves patient outcomes: what is the evidence?".

o Publication costs for Articleso Support of website costs for further 12 monthso Any additional funding will contribute to a shared care workshop days and an

event in 2020 along the same lines as the All Hands Event in January 2019.

7.2 Authorisation from finance department

Signature

Name

Role

Date

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8. Additional information and feedback to the Health Foundation

Other Questions / Reflections:

We have found the support and reporting requirements from the Health Foundation an excellent balance for us as a mature team. The Health foundation team and Rubis QI team also gave us superb guidance and helped our networking and spread of ideas. Culture change programmes need to be continually renewed, fed and watered – a single initiative or idea will not achieve the long-term success without ongoing development. QI is a key component for that however where the change is subtle them QI needs to also be light touch and natural otherwise the process can become overwhelming and eventually not actioned.

The programme experienced varying levels of energy, support and priority from different organisations involved both within the NHS and outside. This was not seen as unusual and difficult to control even with effective programme management as there was often little or no influence that could be exerted.

We really appreciated the opportunity to run a third wave. This allowed for the consolidation of learning as well as increasing the spread of SHC An example of this is the round robin marketplace during the final learning event. This was cited as an “excellent opportunity to hear about the direct experience of other units and the sharing of our experience was really rewarding”. This was an incredibly successful 60 minutes but was only so because of the previous experiences we built upon such as the logs the teams had been completing during the wave, giving the teams a clear ‘mandate/ ask’ i.e. recommending a poster rather than leaving teams to decide for themselves and finally making the session a semiformal ‘round robin’ with teams presenting their display rather than an informal ‘walk-around’.

The Hints and Tips identified in the April 2018 report still hold true for other teams looking scale-up and spread an initiative so are replicated below ;

Hints & Tips : Have a plan and someone who is making sure you are always working towards the

plan Don’t try to do everything – start small and focus on what you are good at but that

does not prevent you from aiming high Include patients from the start, provide forums to build their confidence in this new

environment of working with health care professionals and be clear about what you expect of them

Identify programme patient representatives and where appropriate, educate, develop and support patients/carers

Regular patient gatherings are important and worthwhile Be clear about what your project means by sustainability - think about it from the

start but keep reviewing what it means and ‘how’ you are getting there. Don’t worry about going over the same ground again. This is actually reinforcing

the key messages, just try to keep the mode fresh but the message consistent. Formalising a research protocol is an excellent discipline to support a solid project

plan as it ensures that you think through what you want to achieve, why and how you are really going to do it. It is recommended to keep it simple and to minimise areas where decisions are deferred to later as this inevitably will results in additional unexpected work.

Finally we have agreed to continue working with the Health Foundation on a follow-on Renal initiative with Bryan Jones which will contribute to maintaining the spread of

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SHAREHD as well as other HF funded initiatives. This initiative will also facilitate on-going liaison with KQUIP on delivering sustainability.

GLOSSARY OF TERMS:

A&DB – Advisory & Dissemination Board

CLAHRC - Collaborations for Leadership in Applied Health Research and Care

ERA – European Renal Association

EDTNA – European Nurses Association

GIRFT – Get it Right First Time

KCUK – Kidney Care UK (Charity)

KRUK – Kidney Research UK (Charity)

KPIN – Kidney Patients Information Network

MCA – Microsystems Coaching Academy

NICE – National Institute for Clinical Excellence

NIHR - National Institute for Health Research

UKRR – UK Renal Registry

UKKW – UK Kidney Week

PAG – Patient Advisory Group

PKD – Polycystic Kidney Disease (Charity)

RA – renal Association

SHC – Shared Haemodialysis Care

SHAREHD – Shared Haemodialysis Care Scaling Up Programme

TP-CKD – Transforming Participation inn Chronic Kidney Disease

QI – Quality Improvement

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