Appendices – Improving kidney care engagement report

Appendix One – Engagement activity and feedback in more detail

Those directly affected by the proposals

Letters directly to patients

We wrote directly to 3,369 kidney patients registered at St George’s Hospital and St Helier Hospital. These patients were identified using criteria defined by the kidney clinicians and assured by each trust’s Caldicott Guardian. Letters were addressed to each patient individually and signed by the lead renal clinician from the respective trust. Following receipt of the letter, the team received:

• Five phone calls directly from patients in support of the proposals
• five letters directly from patients – three in support of the proposals and two wanting further information or an alternative solution
• three emails directly to [email protected] inbox in support of the proposals, but highlighting  concerns over parking costs
• many patients, as mentioned below, referenced the letter during engagement at local clinics.

Engagement at kidney clinics and units

The team ran 25 sessions at dialysis units and outreach clinics to raise awareness of the proposals and speak directly to kidney patients. The team attended each clinic twice, to capture specific established patient groups. Sessions ran from 8am till 8pm to ensure there was an opportunity to speak to those patients receiving dialysis at the morning, afternoon and twilight sessions.

A number of patients reported being familiar with the proposals as they had received the letter in the post mentioned above. There was also a pop-up banner at each clinic, encouraging patients to visit the website to find out more information and to complete the questionnaire online using a QR code to aide access.

Materials were handed out at each session including the questionnaire and freepost envelope for people to complete. In total 613 questionnaires and leaflets were handed to patients and the team had 750 face-to-face conversations. The team also made sure materials were available in an ‘easy read’ version and in a number of different languages. Following on from the engagement at the clinics, the team received 235 questionnaires directly in the post, including 1 ‘easy read’ version.

Overall, the majority of the conversations were positive and supportive of the proposals. The main questions during this activity related to parking and journey times, continuity of care and the possibility of changes to the location of their regular dialysis sessions. Many patients spoke highly of their experience at their local dialysis clinic and the positive rapport with nurses, consultants and other patients. 

Those units further out in Surrey felt a specialist service should be built closer to them. A clearly shared negative experience was of waiting times for patient transport, and many patients wanted this looked at as a priority.

Feedback from 1:1 conversations with patients at dialysis clinics

17/08/2021, Colliers Wood Dialysis Unit

Overall, people were very positive. At least 90% of those spoken to had received the letter and felt that the proposals were a good idea. Parking came up in discussion a number of times and people were very interested in where the unit would be. People wanted to make sure that the clinics they attend now, remained where they are. Most people were happy to take the survey away and complete at home rather than on the spot – lots of people felt tired and didn’t want to have full conversations.

14/08/2021 Farnborough Dialysis Unit

Questions asked by kidney patients:

• Why can’t the unit have been considered further down into this end of Surrey?
• Is there a congestion zone charge now in the STGs area?
• Will there be any consideration to cover any extra costs that the patient’s main carer may face due to the slightly further journey/mileage?

23/08/2021, Farnborough Dialysis Unit

Theme: Transport – issue around Surrey and is a concern for patients when having to travel further into London.

23/08/2021, North Wandsworth Dialysis Unit

• It was felt that there were issues at current renal ward at St George’s (Champneys) including overcrowding, understaffing and outdated building
• One patient spoken to supported the proposals but would like improvements at current satellite clinics and nursing quality is variable
• One patient spoken to asked if multi-storey car park viable?
• One patient said that dialysis patients feel like they’re being forgotten – pumping money into a new clinic when they could improve existing dialysis units
• Overall: overwhelming support from staff and patients

11/08/2021, West Byfleet Dialysis Unit

Parking and distance was raised.

• Q: Has there been any consideration for visitors if an inpatient?

23/08/2021 Kingston Dialysis Unit

No questions or feedback received

20/08/2021, Sutton Dialysis Unit

Questions asked:

• Impact on new Sutton hospital? Parking for relatives?

24/08/2021, Sutton Dialysis Unit

Questions asked:

• £80m is too much money to spend on us. Where is the money coming from?
• Concerns about travel to St George’s.
• General acceptance that they may have to travel further but willing to for better treatment.

26/08/2021 St Helier Outpatients Department

Questions asked:

• Will there be parking?
• How will patients get to St George’s if they are at St Helier and become unwell?

27/08/2021, St Helier Outpatients Department

Questions asked:

• Will there be dedicated renal only parking for the new hospital?
• Will I have any choice in where I am taken to if an ambulance is called and I live in between two areas such as Brighton/St Georges?
• Has transport infrastructure been taken into account and what planning has been done?
• Has Brexit been taken into account and will the budget be enough to complete the build now materials have become more expensive?

25/08/2021, Epsom Dialysis Unit

Feedback from patients:

• Travel feels too far
• Parking costs will be too much

25/08/2021, Outpatient Clinic – St Georges

One person said they were interested, too much money being invested and not worth it. Won’t be around to care.

26/08/2021, Outpatient Clinic – St Georges

One person said – food is really bad at St George’s and a lot better at St Helier.

26/08/2021, Outpatient Clinic – Vascular St Georges

Questions asked/feedback from patients:

• Will they consider more parking spaces? Travel will be inconvenient for those who live right by St Helier
• Won’t really affect me – only if outpatients also moves to St George’s

26/08/2021, Croydon x 2 Dialysis Unit

Questions asked

• Will there be access to patient records if seen across sites

26/08/2021, Kingston Dialysis Unit

No questions or feedback received

Meeting with local kidney patient associations

Before the official launch of the engagement, we established a strong relationship with the respective Kidney Patient Association (KPA) based at each trust. Each KPA kindly helped the communications and engagement team to shape and develop materials, and also gave their opinion on the appropriateness of whether live listening events should be face-to-face or virtual, as both options were viable at the time under Covid-19 social distancing guidelines. The KPAs also endorsed the proposals publicly.

During engagement, we shared regular updates via email and had one-to-one conversations with each KPA Chair. Each KPA included information on the proposals on their websites and encouraged their members to share their views by completing the questionnaire.

Those who might be interested by proposal

Focus groups

Under the Equality Act 2010, we have a duty to consider the potential impact of any potential service change on people with protected characteristics. We have extended this to include those classified as carers and those living in deprived areas. To preserve the objectivity of responses, we commissioned an independent company called ASV to run ten focus groups and 14 telephone interviews covering these populations:

• Older people, aged 65 and over
• young people, aged 16 -24
• people with a disability (including learning disability)
• people from a Black, Asian or minority ethnic background
• people who are pregnant or have had a baby in the last two years
• people living in deprived communities
• carers
• people living in South West London
• people living in Surrey Heartlands
• people living in Frimley
• telephone interviews with those living across the three CCG areas who were digitally excluded.

ASV independently recruited and incentivised participants from across the CCG areas to join the focus groups and telephone interviews. Each session ran for 1.5 hours in the evening via Zoom during 10^th August – 19^th August 2021.

Each focus group started with participants watching a short animation on the proposals, followed by discussions based on the questionnaire. After sharing information about the proposals, the moderator asked each group the following questions:

• Having listened to the proposals, what are your first impressions of the proposed change?
• Do you think that, based on the examples given, that the proposed changes will make care for kidney patients better, worse, or will it stay?
• Do you think this proposal will see benefits for the staff delivering the services (e.g. doctors/nurses/health care assistants) that are likely to make it easier to recruit people to the team?
• From your personal perspective, and from what we’ve talked about so far, can you think of any other ways the renal services could be organised?
• If you were to need NHS Renal Services after the proposed move to St George’s Hospital in 2025 would this make your journey more or less difficult?
• The proposal is to bring together specialist kidney care services under one roof, from your own viewpoint do you think this will improve or worsen access to services for patients?
• If this new kidney unit at St George’s Hospital were to be built, how could the unit and the service be designed to make patients visit or stay as comfortable and stress-free as possible?
• In your opinion and from your own experiences, are there any other solutions or adaptations to the current proposals to make the service better that haven’t been considered and should be?

Overall, participants at the focus group felt that having specialist care in one centre was a good idea but identified a number of challenges:

• Parking and transport – specifically for those with a disability and participants felt that renal patients should have their own parking bays “…underground parking, maybe, if it’s a new building…”
• investment – younger people felt that £80m was a large amount of money to spend on a small service and the money could be spent better elsewhere “high price potentially for a small change…just my first thoughts…”
• continuity of care – patients might like to see specific clinicians and consultants and if services are disjointed, then this could be an issue. “Some people might like to see specific medics and consultant, which could be an issue.

Feedback from each focus group has been incorporated into the full analysis report.

Dates and details of each focus group

• Tuesday August 10th, 16:00-17:30, Group 1: All must be ages 65+
• Tuesday August 10th, 18:00-19:30, Group 2, All must be aged 16-24
• Thursday August 12th, 16:00-17:30, Group 3, All must have a disability, can include a learning disability
• Thursday August 12th, 18:00-19:30, Group 4, All must be from a Black or other minority ethnic background
• Tuesday August 17th, 16:00-17:30, Group 5, All must be currently pregnant of have given birth in the last 2 years
• Tuesday August 17th, 18:00-19:30, Group 6, All must live in deprived communities – see excel grid for exact locations
• Wednesday August 18th, 16:00-17:30, Group 7, All must live in South West London CCG area,. Ensure mix of ages, genders, ethnicities and locations within CCG area
• Wednesday August 18th, 18:00-19:30, Group 8, All must be carers for a friend or family members. None to be professional carers. Ensure mix of ages – include some young carers
• Thursday August 19th, 16:00-17:30, Group 9, All must live in Surrey Heartlands CCG area. Ensure mix of ages, genders, ethnicities and ocations within CCG area
• Thursday August 19th, 18:00-19:30, Group 10, All must live in Frimley CCg area. Ensure a mix of ages, genders, ethnicities and locations within CCG area

Staff engagement

The clinical teams across St George’s and St Helier hospitals ran four drop-in sessions for their renal staff and colleagues with an interest. Materials were delivered to each hospital site to aid discussions. Material was also provided to raise awareness through regular staff communication channels.

There was broad support for the proposals at each session.  However, if the proposal is approved, additional engagement needs to take place with supporting teams such as dieticians and radiology.

The South West London Clinical Commissioning Group also included information about the proposals regularly in their daily update which is circulated to every staff member. The Improving Kidney Care proposals were also discussed at the South West London CCG Team Talk, hosted by Sarah Blow, the Accountable Officer. 

Community outreach delivered by CCG engagement teams

Each CCG borough team reached out to local communities and groups with an interest to explain the proposals and seek feedback. Patient & public engagement leads for each borough across South West London, Surrey Heartlands and Frimley CCG approached the following groups identified in the Impact Assessment:

• Long-term-condition support groups e.g. Diabetes UK
• Black and Minority Ethnic groups – with a focus on Croydon, Merton & Sutton
• older people’s groups e.g. Age UK
• groups that support people with a disability
• groups supporting people with a mental health condition and/or a learning disability and/or autism.
• carers
• groups linked to deprived areas and seldom heard community – e.g. Street Watch Merton.

Each borough patient & public engagement team shared regular briefings with their voluntary sector stakeholders and offered to attend their existing meetings or provide additional information. Due to COVID-19 restrictions, opportunities to engage were offered virtually.

Following the Joint Health and Overview Scrutiny Committee meeting in July, councillors shared suggestions of groups to engage with. These suggestions were shared with the relevant local borough team who proactively approached and offered opportunities to engage.

Interest in the proposals and take-up of engagement opportunities varied across each borough. Groups across South West London were keen to find out more and offered their views on the proposals. Many of the groups also included information in their local communications such as weekly newsletters and across their social media channels.

In total, the teams met with 27 key interest groups during 27^th July – 7^th September.

The response to this community outreach overall was one of broad support for the proposals, with the majority feeling the plan to have specialist services under one roof was a good idea.

Other feedback from this outreach activity included concerns and challenges around travel, particularly for older people or those who are seriously unwell and; if the funding for the Improving Healthcare Together plans would be compromised by this new specialist unit.

Detailed analysis of the feedback from these events can be found in the full analysis report.

Regular updates with stakeholders & governance (including the letters received)

To ensure key stakeholders were kept informed and had an opportunity to share their views, regular updates were sent to the following stakeholder groups across South West London, Surrey Heartlands and Frimley:

• Members of Parliament and Councillors
• Health & Wellbeing Board Chairs
• Overview & Scrutiny Committee Chairs & Deputy Chairs
• Council Chief Executives, Directors of Adult Social Care and Directors of Public Health
• Primary Care Network leads
• Trust staff
• Local Medical Council /GP Federations
• Healthwatch
• Council for Voluntary Services
• Voluntary sector organisations 
• CCG governing body members.

In total, four updates were circulated to stakeholders including:

• Invitation to Committees in Common (22^nd June)
• launch of engagement following JHOSC decision
• midpoint review and an ask for stakeholders to encourage their peers/constituents to share their views
• close of engagement update and next steps.

Stakeholder responses received

The team received seven emails directly from stakeholders to the [email protected] inbox.

Four responses were directly from Councillors including Merton and Sutton Council. One response received was from the MP for Mitcham & Morden, and one response was from the Leader of Merton Council. The team also received a letter directly from a resident in Merton.

Of the seven emails received, four were not supportive of the proposals. The key themes from the letters and emails related to concerns relating to finances, continuity of care for patients, travel and the future of the St Helier Renal Research Unit building and staff which was funded by patients. 

Each letter and/or email was responded to by the programme lead and also shared with the independent analysis team to include in the engagement analysis. Full details can be found in the independent analysis.

The team also received one media enquiry from the SW Londoner who asked for further information on the proposals.

Those with a wider interest including communications activities

Listening events

To enable those with a wider interest to have their say and find out more about the proposals, the team held two listening events on 9th August and 3rd September.

In total, 63 people signed up to both events (31 people for 9^th September and 32 people registered for 3^rd September).
Both events were an open invite and widely promoted regularly across social media and on CCG websites. Due to ongoing COVID-19 restrictions and concerns around the new Delta variant, and having also sought the advice of the Kidney Patient Associations, each event was held virtually. Participants were asked to sign up via Eventbrite and had an opportunity to ask questions before the meeting.

Questions received via Eventbrite were varied and included:

• Will anything improve kidney health? What will you do to improve kidney health?
• I am very worried about parking. St George’s already has a very limited space for staff and patients. There is regular disruption to the public highway on Blackshaw Road with queues for the main car park. How will this be addressed with the limited transport links?
• How can you improve chronic kidney disease?

Each event was independently facilitated by Paul Parsons from The Consultation Institute. The panel for each event was a mixture of clinicians from St George’s and St Helier Hospitals and programme staff, and a British Sign Language interpreter was present.

At the start of each event, participants had an opportunity to hear from the panel who set out a short presentation on the proposals. Participants were given an opportunity to ask questions and share feedback. At the end of each event, participants were encouraged to complete the questionnaire.

Comments from each event were wide- ranging and included reference to the following:

• Investment – where the money is coming from, if it is sustainable and whether it will affect the Improving Healthcare Together proposals
• continuity of care – concerns around separating outpatients and specialist care across sites could mean patients do not always see the same clinician
• travel and transport – parking issues at St George’s Hospital
• concerns around the future of St Helier Hospital and services for local people.

The reports from both listening events can also be found on our website.

Social media and website

A social media plan was developed by the programme team and shared with communications and engagement colleagues. The host for the Improving Kidney Care social media messages was the @SWLNHS twitter page and Facebook page.

The aim of the social media campaign was to raise awareness of how to access information, have their say and complete the questionnaire.

During pre-engagement and engagement the @SWLNHS twitter and Facebook page shared 44 messages across the channels, including the six boroughs in South West London and Surrey Heartlands.

Social media messages were retweeted, shared and liked by a number of partners’ stakeholders including local councillors, Age UK Sutton, Sutton Council and Richmond CVS.

To ensure the content was informative and interesting to local people, the team adapted the content regularly and shared pictures, draft images of the hospital and short films from clinicians.

The best performing tweet was on 20^th August with 3056 impressions, four retweets and 16 likes.

The best performing Facebook post was on launch day – 27th July and 4th August which shared details of the listening event on 9th August.

Information on the proposals is hosted on the SWLCCG website. Following feedback from stakeholders that the website was difficult to navigate, the team adapted the site and ensured it was easier to find key documents, event information and the questionnaire.

Materials – ensuring our communications were accessible to all

We worked with a range of stakeholders including renal clinicians and the St George’s and St Helier Kidney Patient Associations to co-produce our engagement materials which included:

• An engagement summary leaflet
• an engagement questionnaire (online and hard copy)
• three case studies
• posters
• pull up banners for the dialysis units
• draft images of the proposed kidney unit
• frequently asked questions
• dynamic media and social media content – including an animation and vox pops from clinicians.

To ensure we met the needs of people with additional requires we:

• Produced an ‘easy read’ engagement summary leaflet and engagement questionnaire
• produced an engagement summary leaflet and engagement questionnaire into the three most common other languages across the geographies Tamil, Urdu, Polish and in addition for Frimley, we produced both the summary and questionnaire in Nepalese
• had British Sign Language interpreters at both listening events
• disseminated information on the proposals and signposted people to the documents via multiple channels including
  • Improving Kidney Care website
  • partner websites
  • stakeholder updates – including messages to Voluntary Sector organisations
  • local media
  • social media (Twitter and Facebook)

Materials were distributed to each dialysis unit, each CCG and the trust sites to aid discussions.

Appendix Two: Demographics

Survey – respondent profile

The online self-selecting survey opened on 27^th July and closed on 7^th September 2021. The survey received 400 responses. A breakdown of the profile of responses can be found below. Four in five respondents are kidney patients.

Type of respondent

Kidney patient – 323 (81%)

Family or carer – 15 (4%)

Member of the public – 33 (8%)

Member of staff – 19 (5%)

Member of VCS/faith – 4 (1%)

Other (6 (2%)

Borough

Croydon – 83 (21%)

Merton – 42 (11%)

Sutton – 37 (9%)

Wandsworth – 23 (6%)

Woking – 17 (4%)

Gender

Male – 199 (50%)

Female 136 (34%)

Age

21-44 – 33 (8%)

45-59 – 81 (20%)

60-64 – 45 (11%)

65-74 – 94 (24%)

75-84 – 72 (18%)

85+ – 16 (5%)

Ethnicity

White – 225 (56%)

Asian – 55 (14%)

Mixed – 3 (1%)

Black – 46 (12%)

Other – 7 (2%)

Disability

Yes – 211 (53%)

Carer

Yes – 34 (9%)

Demographics from other engagement activities

Listening events

Target groups

• All
• Older people
• People with a disability including learning disability and/or autism
• People with long-term health conditions
• Political stakeholders and interest groups 2 events 63 signed up

Engagement undertaken

2 events

Numbers reached

63 signed up

Clinical pop-ups

Target groups

• All
• Older people
• People with a disability including learning disability and/or autism
• People with long-term health conditions
• Deprived communities
• People from ethnic minority populations
• People with a mental health condition

Engagement undertaken

25 visits

Numbers reached

750 signed up

Community outreach – via Patient and Public Engagement Leads

• Long term condition support groups e.g. Diabetes UK
• Black and Minority Ethnic groups – with a focus on Croydon, Merton & Sutton
• Older people’s groups e.g. Age UK
• Groups that support people with a disability including physical
• Groups that support people with a mental health condition and/or a learning disability and/or autism.
• Carers
• Groups that are linked to deprived areas and seldom heard community – e.g. Street Watch Merton.

Engagement undertaken

27 community sessions

Focus groups

• Older people, aged 65 and over
• Young people, aged 16 -24
• People with a disability (including learning disability)
• People from a Black, Asian or minority ethnic background
• People who are pregnant or have had a baby in the last two years
• People living in deprived communities
• Carers
• People living in South West London
• People living in Surrey Heartlands
• People living in Frimley
• Telephone interviews with those living across the three CCG areas who were digitally excluded

Engagement undertaken

• 10 groups
• 14 telephone interviews

Numbers reached

• 89 people
• 14 people

Demographics from the focus groups and tele depth interviews

One-to-One Interviews

There were a total of 14 one-to-one interviews conducted with people who identified as digitally excluded in line with the NHS Digital definition. The demographic information provided by participants is shown below.

Sex

Female – 12 (86%)

Male – 2 (14%)

Total – 14 (100%)

Age

25-34 – 3 (21%)

35-44 – 3 (21%)

45-54 – 1 (7%)

55-64 – 1 (7%)

65-74 – 5 (36%)

75-84 – 1 (7%)

Total – 14 (100%)

Status

Economically inactive – 1 (7%)

Employed – 7 (50%)

Retired – 5 (36%)

Self employed – 1 (7%)

Total – 14 (100%)

Ethnicity

Asian Indian – 1 (7%)

Mixed heritage – 1 (7%)

White British – 11 (79%)

White European – 1 (7%)

Total – 14 (100%)

Disabled

No – 14 (100%)

Total – 14 (100%)

Residence

Bracknell – 1 (7%)

Croydon – 1 (7%)

Elmbridge – 1 (7%)

Maidenhead – 2 (14%)

Slough – 2 (14%)

Surrey – 2 (14%)

Wallington – 2 (14%)

Wandsworth – 1 (7%)

Windsor – 1 (7%)

Winkfield – 1 (7%)

Total – 14 (100%)

Focus Groups

In total 89 people took part in the 10 online focus groups. The demographic information they provided is shown below.

Sex

Female – 64 (72%)

Male – 25 (28%)

Total – 14 (100%)

Age

18-24 – 2 (2%)

25-34 – 32 (36%)

35-44 -18 (20%)

45-54 – 17 (19%)

55-64 – 9 (10%)

65-74 – 11 (12%)

Total – 89 (100%)

Status

Economically inactive – 1 (1%)

Employed – 67 (75%)

Retired – 9 (10%)

Student – 8 (9%)

Unemployed – 1 (1%)

Unemployed due to health – 1 (1%)

Total – 89 (100%)

Ethnicity

Asian Chinese – 1 (1%)

Black African – 5 (6%)

Black Afro Caribbean – 1 (1%)

Black British / Caribbean – 1 (1%)

Black British – 5 (6%)

Black British/African – 1 (1 %)

Black Caribbean – 2 (2%)

British Asian – 2 (2%)

British Indian – 1 (1%)

Chinese – 1 (1%)

Half Arabic and half English – 1 (1%)

Indian – 3 (3%)

Mixed heritage – 2 (2%)

Mixed White and Asian – 1 (1%)

White Asian – 1 (1%)

White British and Indian – 1 (1%)

White British – 57 (64%)

White European – 2 (2%)

White New Zealand – 1 (1%)

Total – 89 (100%)

Disabled

No – 78 (100%)

Yes – 11 (12%)

Total – 89 (100%)

Reported condition

Arthritis – knee and joints

Autism/ADHD

Dyspraxia and Dyslexia

Dyspraxis

EUPD arthritis

Fibromyalgia cervical spondylosis

Heart disease and arthritis

MS

NEAD (Non-epileptic attack disorder)

Spinal ECT

Residence

Addiscombe West – 1 (1%)

Ascot – 2 (2%)

Barnes – 1 (1%)

Battersea – 1 (1%)

Bracknell – 4 (4%)

Bramley – 1 (1%)

Broad Green – 2 (2%)

Carshalton – 1 (1%)

Colliers Wood – 2 (2%)

Coulsden – 2 (2%)

Croydon – 6 (7%)

Egham – 1 (1%)

Guildford – 2 (2%)

Kingston upon Thames – 4 (4%)

Maidenhead – 3 (3%)

Merton – 3 (3%)

New Addington – 3 (3%)

Old Windsor – 1 (1%)

Reigate and Banstead – 1 (1%)

Richmond – 1 (1%)

Rowledge – 1 (1%)

Runnymede – 3 (3%)

Selsdon – 5 (6%)

Slough – 11 (12%)

Spelthorne – 1 (1%)

Streatham – 1 (1%)

Surrey – 3 (3%)

Sutton – 4 (4%)

Twickenham – 2 (2%)

Waddon – 2 (2%)

Wandsworth – 6 (7%)

Wimbledon – 2 (2%)

Windsor – 5 (6%)

Woking – 1 (1%)

Total – 89 (100%)