Improving Kidney Care: Engagement report, October 2021

Introduction

This report sets out the main findings of the engagement activity which ran between 27 July and 07 September 2021 relating to a clinically-led proposal to improve care for kidney inpatients at St Helier and St George’s hospitals. The purpose of this report is to bring together a summary of the key communication and engagement activities, and make recommendations based on feedback for consideration in the Decision Making Business Case.

The proposal was put forward jointly in 2020 by the clinical leads for the respective renal services at Epsom and St Helier University Hospitals NHS Trust and St George’s University NHS Foundation Trust.

The proposal and the engagement activity have been undertaken on behalf of the trusts and the wider NHS by a programme team from South West London Clinical Commissioning Group.

The delivery group for the proposal consisted of colleagues from:

• Epsom and St Helier University Hospitals NHS Trust
• Frimley Clinical Commissioning Group
• NHS England & Improvement  – Specialised Commissioning
• St George’s University Hospitals NHS Foundation Trust
• South West London Clinical Commissioning Group
• Surrey Heartlands Clinical Commissioning Group

The proposal: summary, context and background

By 2026, St Helier hospital will no longer provide inpatient (overnight) care for kidney patients. This is because in 2020, the NHS got approval to build a brand new £500m specialist emergency care hospital in Sutton.

Six major services will move to the new hospital from Epsom and St Helier. These services include a major emergency department; critical care; emergency surgery; acute medicine; specialist paediatric care and; births.

Under these plans, St Helier’s inpatient kidney service would also move to Sutton in 2026. There would be no changes to kidney outpatient services at St Helier or at other hospital clinics or kidney units in Surrey or South West London.

In their response to the 2020 Improving Healthcare Together consultation, renal leaders from St George’s and St Helier submitted an alternative proposal for kidney services which said: “…as the newly appointed clinical leaders we are firmly convinced that we could make a further step change in improving the care we offer if we could formally combine forces and locate all our tertiary renal medical and surgical practice in one new purpose built facility…(and) that the right place for a combined renal service should be at St George’s.”

Under this new proposal, instead of continuing to have inpatient kidney care at two hospitals, inpatient care would be brought together in a single new £80m unit at St George’s Hospital.

A small number of outpatient appointments would also change to the new unit at St George’s. This would mean patients who may need extra support and advice, for example after a transplant, would go to St George’s. Some outpatient appointments would also move to St Helier, like training for home dialysis.

All other kidney services will remain as they are. This means that 95% of contact with kidney services will stay the same. There will be no changes to existing dialysis services and clinics in local hospitals, units or at home.

The £80m funding for the new kidney unit has been agreed by the NHS.

The proposals also take into account the impact of COVID-19. This is very important as kidney patients are considered vulnerable or extremely vulnerable patients. The new unit would be designed to provide safer services in any future pandemic. Infection control and social distancing are easier to implement in new buildings.

More information on the proposal

Key dates in the development of the proposal

The engagement plan was shared and discussed with a range of stakeholders prior to the launch of engagement. This early engagement with patient representatives, clinicians and stakeholders helped to shape the overall approach and material ahead of launch.

Key engagement included:

• June – the St Helier Kidney Patient Association and the St George’s Kidney Patient Association
• Tuesday 22^nd June 2021– Committees in Common
• Wednesday 23^rd June 2021 – Community Engagement Steering Group  – (Membership – SWL Healthwatch and Council for Voluntary Services)
• Wednesday 7^th July 2021 – South West London Governing Body
• Wednesday 7^th July 2021 – Joint Overview Health & Scrutiny Committee (South West London & Surrey)
• June – August 2021 – joint NHS communications and Patient & Public Engagement group covering SW London, St Helier and St George’s hospitals and the Surrey Heartlands and Frimley clinical commissioning groups.

Engagement strategy

We developed an engagement plan which was shared in June 2021 which set out a programme of robust engagement with relevant and interested stakeholders, especially patients and staff.

The plan was explicit that we would be honest and open on the impact of the changes, both positive and negative and that we would comply with best practice, work with NHS and other partners to maximise impact and value, and draw on experience of the Improving Healthcare Together consultation of 2019/20.

The plan, and accompanying material, was shaped throughout by engagement with clinicians, expert patients and stakeholders. The plan was shared, scrutinised and agreed with communication and engagement leads across South West London and Surrey and with the Committees in Common and Joint Health Overview & Scrutiny Committee (meetings on 22nd June & 7th July).

Engagement objectives

Engagement is key to a successful outcome, improving the quality of care and experience for renal patients in South West London.

The overall objective of the plan was to offer all individuals, communities, groups and representatives, who will or may be impacted by the proposals, equal opportunities to engage and share their suggestions, concerns and comments.

We were particularly keen during the engagement to understand:

• the extent to which the new proposals would support better care and experience for patients compared to current arrangements and;
•  if the new unit would support recruitment and retention of staff.
• We were also keen to hear views on how a new unit at St. George’s may impact travel time for patients and carers.
• Another important aspect was hearing from patients how they thought the design and environment of the new unit at St. George’s could best meet their needs, and those of their family and/or carers.

Summary of engagement activities and key audiences

The engagement ran from Tuesday 27^th July to Tuesday 7th September targeted at three main audiences across SW London and Surrey:

• Those directly affected by the proposals, such as kidney patients and their families and carers and staff working for, or aligned to, kidney services
• those who might be interested by proposals – wider NHS staff, community groups and stakeholders
• those with a wider interest – the general population with an interest in health.
• To capture patients, staff, families and stakeholders views on the proposals, an engagement questionnaire was shared online and in hard copy format.

Full details of the engagement activities and demographics can be in appendix one and appendix two.

Between 27th July and 7th September we:

• wrote directly to 3369 kidney patients to share information about the proposals
• spoke to 750 kidney patients via 25 visits to 10 kidney clinics and units
• worked closely with local kidney patients
• Held 10 independently run focus groups with equalities groups and 14 telephone interviews with those who are digitally excluded
• drop in sessions for staff at St Helier and St George’s hospitals
• shared updates with key stakeholders and engaged with local groups
• held two public listening events on 9th August and 3rd September
• shared information on social and traditional media including and animation, vox-pops and the images of the proposed new unit
• information available online including updated Q&A

Summary of responses and key themes

Survey response rate headlines

We received 400 responses to our questionnaire on the improving kidney care proposals:

• 81% were directly from kidney patients
• 8% were from a members of the public
• 1% were from a voluntary sector or faith organisation
• 4% were from a family member or carer
• 5% were from staff working at St George’s or St Helier hospitals
• 2% were from other organisations/groups

The following is a summary of responses and feedback from the engagement. The independent research analysis report provides a full and detailed breakdown of the engagement activity, responses and findings, and also includes demographic and geographic factors.

Summary of feedback

• 74% of overall respondents felt that the proposals were either a very good or good idea
• 79% of kidney patients felt that the proposals were either a very good or a good idea
• 70% of overall respondents felt that the proposals would mean better care for patients
• 73% of kidney patients responding felt the proposals would mean better care for patients
• 55% of respondents felt that the proposals would mean better recruitment of staff

There were high levels of support overall among patients, even when the impact of travel and transport is considered. Patient representative groups were broadly supportive of the proposals but they would like more detail on how services would change.

Feedback from focus groups and tele-depth interviews with members of the public not currently receiving care is more mixed, although broadly supportive. Staff who responded to the survey were positive in their views of the proposal with 17 of the 18 who responded feeling the proposal is good or very good. Staff feedback from meetings that took place suggest there was support for the proposal and many staff are keen to understand more about the details of the proposal and how they can help to shape future plans.

Geographical responses

Respondents living in South West London were the most positive with 82% saying the proposals were good or very good, followed by Surrey Heartlands (78%) and then Frimley residents (68%).

Support for the proposal

• Almost eight out of ten kidney patients who completed the questionnaire (79%) feel the proposal is either very good or good, and almost three quarters of all respondents to the survey (74%) felt the same
• views on the proposals from those who completed the questionnaire do not significantly differ across demographic groups and those patients most positive about the proposals were those from the South West London CCG area, Croydon patients and patients from ethnic minority backgrounds

• access to centralised and specialist renal care, better patient care and health outcomes and modern up-to-date facilities were the top reasons given for supporting the proposals.

Better care

• Seven in ten respondents who completed the questionnaire feel that the suggested way of delivering kidney care will likely mean better care for patients (70%), and this increases slightly among kidney patients to 73%

• those from ethnic minority backgrounds who completed the questionnaire were even more positive about this with 77% feeling the suggested way of delivering kidney care will likely mean better care for patients.

• around two thirds of respondents who completed the questionnaire, feel the proposed changes to kidney care services would be better for patients compared to now (65%). Around one in six felt services will be worse (16%). Results among kidney patients are slightly more positive with almost seven in ten (69%) feeling the proposed changes will be better for patients.

• common ways mentioned to make visits and stays as comfortable as possible at a new unit include; improving parking, locating the unit more locally, having private rooms or small wards.

Better for staff

• Over half of all respondents who completed the questionnaire feel that the suggested way of delivering kidney care will likely mean better recruitment of staff (55%). Views are slightly more positive among kidney patients with around three in five feeling this will lead to better recruitment of staff (58%). Around a third feel unsure about this across both groups.
• The majority of participants attending the focus groups believed that staff will be attracted to the new unit due to the opportunities to train in renal care and learn from specialists.

Alternative options

• A similar proportion of all respondents who completed the questionnaire either feel there is no better option (44%) or don’t know (37%) if there is a better proposal. One in five feel there is a better option (20%). When analysed by different groups of patients, results did not generally differ substantially from the average.

• suggestions for better alternatives included having somewhere with fewer travel related issues, modernising St Helier or having two specialist units.

Travel and transport

• Around three in five respondents who completed the questionnaire feel that their journey will be longer (59%) with a similar result among kidney patients (58%). Most likely to feel their journeys will be longer are those living in Surrey (70%).

• the most common travel and transport concern was around improving parking, followed by improving transport links and having some services more locally based.

Full details of the responses and themes can be found in the independent analysis report.

Engagement in action

Before and during this engagement, we adapted our approach and material based on feedback from patient groups, clinicians and NHS colleagues and stakeholders. A mid-point review update was issued to stakeholders and partners to provide oversight and progress, encourage further engagement at local level, and ask for feedback.

At all times, COVID-19 infection control protocols were followed, and specific permission and advice was sought before engaging with kidney patients in local clinics as they are a particularly vulnerable patient group. These restrictions were also the basis for the decision to make the two listening events ‘virtual’ rather than face-to-face.

These points below demonstrate the impact of our approach in terms of reach, and also our responsiveness to feedback.

• Good demographic mix across live event and questionnaire responses
• high levels of engagement with primary audience – kidney patients
• live events gave plenty of opportunity for discussion and feedback
• we adapted our website following feedback to make it easier to find and navigate
• we included more detail on the Improving Healthcare Together 2019/2020 consultation for context
• updated the Frequently Asked Questions online to reflect feedback from live events and other sources.
• created new content to drive awareness via traditional and social media and stakeholders
• additional outreach work at local level to ensure further opportunities for people to be involved.

Recommendations from engagement for consideration by the DMBC

• St George’s should proactively explore the option of providing additional and/or dedicated parking spaces for patients using the new kidney unit.
• More detail should be provided on the rationale for choosing St George’s as the location for the new unit when both trusts currently have large renal services.
• The design of the new unit should include more single rooms for patients than currently available.
• The continuity of care, and high standard of compassionate care, should be maintained and strengthened through this proposal.
• Opportunities to support more patients to have home dialysis should be actively explored.

An additional area for the trusts to consider, but outside the precise scope of this engagement, are the views of kidney dialysis patients on the current effectiveness of the respective patient transport services. While dialysis will continue to take place as now, patients consistently raised the issue of Patient Transport Service as an issue, and the trusts should consider this feedback when reviewing current operation of this service which is relied on heavily by these patients.

Engagement lessons learned

Throughout our engagement on these proposals we have summarised the lessons we have learnt to help take forward in our future engagement work:

• While digital and online channels have a significant and growing role in engagement, there is no substitute for face-to-face meetings
• if the proposal goes forward, local trusts need to reinforce with their local patients that the vast majority of their contact with kidney services will not change location
• writing letters directly to patients appeared effective
• patients and members of the public can find it hard to speak up in public events
• constantly check that language and graphics are easy to understand for all audiences
• test and adapt communication methods e.g. website
• proposals which are clinically-led encourage public confidence
• despite the complexity of the issue, the public and patients need sufficient detail, in sufficient clarity and a multi-layered approach may be helpful here
• constantly check that language and graphics are easy to understand for all audiences and benefits explained as clearly as possible.

Read the appendices for this report