The 2013 Health Conversation - Tower Hamlets CCG Health Conversation 1910… · The 2013 Health...

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The 2013 Health Conversation Patient and public involvement event Whitechapel Idea Store 19 October 2013 Event report Contents Page(s) 1. Introduction 1 2. Event format and logistics 2-3 3. Evaluating the event 4-5 4. Analysis of feedback provided by attendees: 6 Maternity services 7-8 Helping children and young people to be healthy and safe 9-10 Urgent and emergency care 11-14 GP referrals to specialist health services (‘Planned Care’) 15-17 Joining up services to meet individual needs (‘Integrated Care) 18-19 Long term conditions 20-21 Mental health 22-23 Supporting people who are in their last years of life 24-25 GP services 26-27 Get involved with the NHS 28-29 ‘Wild Card’ questions 30-31 IT 32-34 5. Conclusions and next steps 35 Appendices: 1 Content of event stands

Transcript of The 2013 Health Conversation - Tower Hamlets CCG Health Conversation 1910… · The 2013 Health...

Page 1: The 2013 Health Conversation - Tower Hamlets CCG Health Conversation 1910… · The 2013 Health Conversation Patient and public involvement event Whitechapel Idea Store 19 October

The 2013 Health Conversation

Patient and public involvement event Whitechapel Idea Store

19 October 2013

Event report

Contents Page(s) 1. Introduction 1 2. Event format and logistics 2-3 3. Evaluating the event 4-5 4. Analysis of feedback provided by attendees: 6

Maternity services 7-8

Helping children and young people to be healthy and safe 9-10

Urgent and emergency care 11-14

GP referrals to specialist health services (‘Planned Care’) 15-17

Joining up services to meet individual needs (‘Integrated Care) 18-19

Long term conditions 20-21

Mental health 22-23

Supporting people who are in their last years of life 24-25

GP services 26-27

Get involved with the NHS 28-29

‘Wild Card’ questions 30-31

IT 32-34 5. Conclusions and next steps 35 Appendices:

1 Content of event stands

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1. Introduction NHS Tower Hamlets Clinical Commissioning Group (THCCG) aspires to put the voice of local people at the heart of everything we do. Services should be based on local need and focus on the priority issues for our community. Involving patients and the wider public is central to service planning and provision, vital for service improvement and leads to a more positive experience of care. Involving local people gives them a greater sense of ownership of the health services they use and their own health. On October 19 2013, THCCG organised a large patient and public involvement event with the aim of getting people involved in our annual commissioning process. The event invited participants to tell us their experiences of using local health services and provide feedback to a number of questions that are central issues to each of our programmes which aim to improve commissioned services in the borough. Feedback gathered at this event and presented in this report will be used to inform the development of our plans for each of the CCG’s programmes for 2014/15. The event was formatted as a fair and along with the feedback stands, also hosted a number of health-related activities and health information, as well as activities for children and adults. This report presents:

Information on how the event was formatted and an evaluation on how it worked, with suggestions for future events.

An analytical summary of the responses received for each of the areas we invited feedback on.

Reflections from staff and programme leads.

Overall conclusions and next steps.

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2 Event format and logistics Venue The event was structured as a fair and ran from 11am – 3pm at the Idea Store, Whitechapel Road, E1 1BU. The Idea Store is a large learning space which functions as a library but also has space for events, activities and training opportunities. Run by the London Borough of Tower Hamlets (LBTH), they have broad a focus on improving health through education and learning. THCCG stands THCCG had a number of stands which were staffed by staff or members of the THCCG Governing Body. People were stationed on stands for areas which they lead on. These stands provided a summary of each area, what THCCG is doing and posed two or three questions for people to respond to. The poster content for these stands can be seen at Appendix 1. THCCG had 10 stands covering the following areas:

1. Maternity services 2. Helping children and young people to be healthy and safe 3. Urgent and emergency care 4. GP referrals to specialist health services 5. Joining up services to meet individual needs 6. Long term conditions 7. Mental health 8. Supporting people who are in their last years of life 9. GP services 10. Get involved with the NHS

One further stand covered two broad and overarching questions:

What are your ideas for improving health services with less money?

Is there anything else that you would like to tell us? Questions were asked about IT by approaching people directly with a tablet computer. In total we therefore invited feedback from attendees across 12 different areas. Partner stands Partners from Barts Health NHS Trust (BH), the Public Health Department (PH) at LBTH, Healthwatch and Social Action for Health (SAFH) also had stands at the event, presenting patients with information about the following areas and services:

Sexual Health - BH

Diabetes - BH

Smoking Cessation – BH

Patient membership - BH

Health lifestyles (including weight management and healthy eating advice) – PH, provided by the Healthy Trainers programme.

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Healthwatch – find out more and get involved.

SAFH – find out more and get involved. Each of the stands had a sign-up sheet, where attendees could leave their contact details and get involved further in the work of THCCG, BH and Heathwatch. Activities and offers The fair also offered a range of health related and generic activities and offers to encourage people to come in and get involved. These were:

Health checks with a local nurse.

A free fruit and vegetable gift voucher worth £1 - awarded once people had provided feedback and usable at the market stall outside the venue.

A children’s entertainer.

Face painting.

Henna.

A ‘smoothie bike’.

A voucher offering a 10% reduction in the price of a flu vaccination from a nearby pharmacy.

Lunch and refreshments.

A children’s drawing area – children were asked to draw what ‘being healthy is’. Publicising and communicating the event The event was publicised in many different ways at different times, with a strong ambition to publicise the event well to the local communities of Tower Hamlets. The promotional activities were:

An advert (quarter-page) in East End Life (EEL) newspaper, one week before the event.

Press releases in the local press, including EEL.

Digital advertising on screens in the local Idea Stores and in the four local One Stop Shops.

Information and adverts on the THCCG website and intranet.

Promotional outreach via local partners who work directly with residents – such as Healthwatch, the voluntary and community sector and housing associations.

Messages from local councillors, who were asked them to tell their constituents about the event.

Posters and fliers in various locations and venues such as GP surgeries, pharmacies, children’s centres, community venues, mosques.

An encouragement message given out by the imam at the East London Mosque and fliers were given out on the Friday before the event, after prayers.

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3 Evaluating the event People who worked at the event were asked to provide feedback about any elements of the organisation and delivery of the event and any general reflections they had about how the event went. This information is combined below along with evaluation from the core event management team. Attendees The Idea Store Manager estimated that around 200 people attended the event. Despite being on the fourth floor, the format of the event worked well and having to come up to the event didn’t seem to be a significant barrier. Giving out fliers and balloons outside the venue worked well and families in particular were encouraged in by the activities for children. Families were therefore well represented as were people from a range of different communities, including many Bangladeshi people. There were higher numbers of families in attendance than younger or older people which may reflect the need to tailor events to these groups. As the event was formatted as a drop in fair we were unable to gather detailed monitoring information on the attendees to get a rich picture of their demographics and see if any groups people were under-represented. This could be done at other forums in the future, where this is possible. As the event was located in Whitechapel, it may be useful to think about doing similar activities in other parts of the borough to involve different people. One idea was to do another event at the Asda car park on the Isle of Dogs. Activities and offers The smoothie bike, henna, face painting, children’s entertainer and children’s drawing table were busy all day. The smoothie bike ran out of sachets of fruit so it would be worth ordering more for future similar events. Food and the children’s’ activities seemed to be what drew people in from the street most readily, as well as free fruit and vegetables. Having children leaving the event with painted faces and holding THCCG balloons helped to ‘advertise’ the event further. People were very enthusiastic about the quality of the food and refreshments which shows how valuable it is to prioritise quality of food as opposed to choosing based on other factors, such as convenience. People did not use the flu jab discount voucher at the local pharmacy so this did not work as an incentive in this instance. This may be due to many factors such as the fact that a local supermarket was offering jabs at a cheaper price or that as an incentive, this doesn’t appeal to many people. The health checks needed to be publicised more, with clearer information about what checks people would get from their 10-15 minute session. The Health Trainers booked encouraged people to uptake the health checks. If we ran the same offer again at future events, we should work a little closer with the Health Trainers and the health check nurse so that they each are clear on what they are promoting to attendees and what benefits they would get from having a health check. The Health Trainers could also have been positioned in a different location so that attendees found out about these as they walked in.

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Set up and information SAFH provided an informal interpretation service for THCCG at the event, approaching people to interpret information for them and speaking to them in their first language. They provided interpretation in Bangladeshi and this worked for attendees. However, for future events it would be important to have a larger number of interpreters, who were clearly labelled as people who could help. One THCCG Governing Body member commented that it would be useful to have more Bangladeshi women who would interpret as a number of Bangladeshi women came to the ‘children and young people’s’ stand and needed help understanding what it was about and how to get involved. Having people to interpret and talk in languages other than English at the ‘entrances’ would also be something to improve on for future events. We provided information about how people can make complaints about local NHS services and one staff member commented that this information could have been easier for people to understand and more explicit. For further events where we want to involve patients and members of the public in our work, we may want to choose a more open format where people are able to ask their own questions as opposed to answering the ones we have set. This is a good reminder that we should always consider why we want to involve people and who we want to involve before we decide how we will do it. Related to this, one person commented that it would be a good idea for future events to consider how we can work with the voluntary and community sector more closely and knit our events with engagement that they are doing. A summary of recommendations for future events can be found in section 5: conclusions and next steps. See page 35.

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4. Feedback provided by attendees Pages 7 to 34 provide an analysis of the feedback received from attendees across each of the 12 areas to which questions were posed. Each section presents a ‘word cloud’ based on what people told us and this gives a good graphic representation of the themes that arise in that area. This is followed by a thematic analysis of the comments along with examples of some of the feedback received for each question. Comments provided by attendees are formatted in italics and contained in quotation marks. The section ends with reflections from the THCCG Governing Body and management leads that operated the stands on the day. Due to the nature of the event and amount of feedback provided, we cannot say that this feedback is representative of the local community or of the totality of feelings and experiences, but it does give a good reflection of the people who attended the event and the feedback that they wanted to give us at that time.

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Stand 1: Maternity services

Feedback from event attendees Question 1 If you were expecting a baby where would you and your partner like to have your baby, and why? Six responses were received for this question and they were varied. Three people said the Barkantine Birthing Centre, two the labour ward at the Royal London Hospital (RLH) and one at home. The Barkantine was commended for its “natural ethos” and kind staff approach, one person commented that transferring to the hospital (if required) is easy but another said transport to the Barkantine is difficult which may reflect peoples’ desire to use maternity services that are near home. Both people who said the maternity ward said they chose it for safety, one commented that they didn’t know any alternatives. The woman that chose a home birth did so to be in “comfortable surroundings”. Question 2 What would be important to you in making that decision? There were only a three responses to this question with people stating: safety, comfort and control and distance to travel from home. Question 3 If you had a baby recently, what was your experience?

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More people responded to this question, with nine pieces of feedback received. Responses were very varied, with more negatives (7) pieces of feedback than positive (2). The positive responses were: - “Community midwives were good, they came when they said they would and gave choice of

times.” - “The in-patient experience and delivery of baby in labour ward was good” Amongst the negative pieces of feedback, three focussed on the variable experiences of midwives: - “Community midwife was ok but didn‟t help with social problems and didn‟t help to sign post

to the right people who could help. Need this information from midwives as its difficult find on the web”.

- “Midwives in postnatal wards were generally not good. Midwives were a mixed bag – some good but some no good at communication”.

- “Midwives in the hospital had a bad attitude especially to Bengali women”. Further comments mentioned the provision of information and the importance of information and support being tailored and delivered in way that works for people: - “I‟m a mum new to the country; my first baby was born in my home country. My second

baby I had here with little support as I have no family here. I didn‟t know about maternity mates but would have liked to have that help.”

- “First time mums need a lot of information but can‟t go to day time meetings due to work. Need more evening and weekend meetings. Information best coming from midwives and GPs”

Reflections from staff and programme leads The THCCG Governing Body lead for maternity who worked on the stall felt that they uncovered some interesting patient stories about poor experience and outcomes and the variability of care. One patient told them that the service was so bad at the RLH, that although she had a life threatening condition, she would rather avoid her appointments than go to the RLH.

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Stand 2: Helping children and young people to be health and safe

Feedback from event attendees Question 1 How do we help children and young people be healthier? Only three pieces of feedback were given for this first question and two for the second question. However, people left a lot of feedback to the third question suggesting that they were either more interested in this question or they were directed to this question. In answer to the first question ‘how do we help children and young people to be healthier’, people said: - “Encouraging healthy eating in children.” - “Parents need to be educated.” - “More opportunity to engage with children centres to help support better health in children.” Question 2 How can we support children with disabilities and or complex health needs better?

Two suggestions were made in answer to this question, one about assessing quality of services and another about adapting environments for children with specific needs:

- Mystery shopping for voluntary sector to assess quality.

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- Need for autism friendly environment.

Question 3 What are your experiences of using services that are for children and young people?

Thirteen pieces of feedback were given to this question and most of the feedback was likely to have been given by adults vs. children or younger people, based on who attended the event. The feedback was broad and hard to classify into themes, however, predominantly the feedback was not positive. Four people mentioned issues with referrals from GPs to specialist services and this feedback ranged from people feeling they should have been referred when they weren’t, to not being able to book appointments for services they have been referred for. Services being slow were mentioned three times and other issues such as consistency of care, general skills and gaps in provision were also mention. The feedback given presented a strong sense of experience and knowing how something should work and therefore what didn’t work for these people in these instances. As the feedback was varied, many of the comments are presented here:

- “It took a long time to access a Special Educational Needs (SEN) assessment.” - “There seems to be a gap in provision of intervention for school age children with

behavioural problems at home and school.” - “Changes in staffing is really difficult, the trust goes. Difficult for children with disabilities

when they are attached to the staff.” - “There are challenges for children who speak English but their parents don‟t, especially in

relation to safeguarding.” - “My child has two long term conditions (skin condition and asthma). We have multiple

appointments on different days which causes my child to miss school and the school is not being very supportive. My child‟s confidence is affected due to their different appearance.”

- “I couldn‟t make an appointment over the internet; the system didn‟t seem to work.” - “I was referred to hospital by the GP to see a dietician but wasn‟t able to book the

appointment over the phone and then the hospital wrote asking why the appointment hadn‟t been made “

- “My young child was referred by the GP for a scan and we had problems with booking at RLH and poor communication. My child became too old for the scan and therefore new needs arose. Should have been referred to an orthopaedic doctor.”

- “My child had terrible eczema and the GP wouldn‟t refer, in the end I had to go privately.”

Reflections from staff and programme leads The Governing Body lead for children and young people provided two piece of feedback based on their experience of fronting the stand at the event:

I got a greater understanding of the practical issues parents face e.g. balancing

appointments.

It’s difficult to engage people in conversations that result in practical input into strategies.

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Stand 3: Urgent and emergency care

Feedback from event attendees Question 1 Tell us why you think people go to A&E when their condition is not urgent or life threatening?

The urgent and emergency care stand received a high level of feedback, which is not unexpected as it is a service used by most people at some point. Forty-eight individual pieces of feedback were gathered against this first question. The predominant theme was about access to GP services. Long waiting times for GP appointments were mentioned 17 times. Following this, GP practices not being open during evenings and weekends was mentioned next as a reason why people go to A&E. Around five people said that they didn’t have a GP and this is why they go to A&E. Some of the feedback was: - “I‟m ill now and need to see my doctor. There is one week waiting time. If I could see my

GP today I would not go A&E.” - “I cannot get an appointment to see my GP I have to wait up to 2 weeks.” - “I feel uncovered on weekends. I don‟t want to keep ringing out of hours/NHS Direct.”

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- “GP opening hours are limited and have difficulty getting an appointment.” Following this theme, people were then most likely to mentioned the level of (good) service that they feel they receive in A&E or in ‘hospital’, suggesting a confidence in this service to cover all of their needs: - “My five year old son went to A&E several times. He is a receiving palliative care and is on

oxygen. I go to A&E because I don‟t have confidence in my GP (Mission Practice). The GP told me that my son had a cold but next day A&E admitted for chest infection. I just wanted the GP to look down his throat but she didn‟t, so now I only go to A&E.”

- “The doctors are very good and you can come at any time to see someone. Very good service, excellent doctors and radiographers at A&E.”

- “Hospitals have better doctors and specialists who can help me.” People then talked about their children and their need or want to see people more urgently when their child’s health needs attention. A couple of people who responded had children with high health needs and another couple of people felt that they did not want to talk about their child’s health over the phone or with a GP reception, so they went to A&E for more confidentiality. Some key comments were: - “With babies and younger children you can panic. My husband took my son to A&E and

there was some family pressure.” - “I am happy with the surgery I had at Spitalfields but when my children are sick (I have five)

I need urgent medicine.” - “I don‟t want the reception at my GP surgery (Whitechapel Health) deciding what is an

emergency. Reception is a barrier so we don‟t disclose symptoms or the reason for our call.”

There were also a few other pieces of feedback linked to not knowing where else to go or what other available services will meet their needs. One person said “I don‟t think A&E is only for life threatening conditions” which could link to the feedback above that A&E is viewed as a generalist place where you will get treated comprehensively and in a way that meets your or your family’s needs. Question 2 How can we support people to user other services than A&E? When responding to this question, attendees were most likely to suggest that people should be given more information about what services are available, that the services and use of the services should be promoted more and that patients should be educated about ‘how best’ to use them and how to look after their own health. Thirty-four pieces of feedback were gathered for this question, 21 of which were about or in part about information, promotion, communications, understanding behaviour and education. Respondents also gave varied suggestions about how this should be done, from providing information at GP practices and at the front of A&E to via people’s own ‘life’ networks, showing the importance of communicating with people in ways that work best for them. Some of the comments were:

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- “Drop leaflets in people‟s houses before it gets cold to tell them how to look after themselves and advertise in newspapers.”

- “There is confusion about what service to use and little knowledge. 16-25 year olds need to know more, link in with University students.”

- “Find out who the people are who use A&E the most and talk to them face to face to explain – not with letters.”

- “More advertising of „pharmacy first‟ – why go to the GP when you can get medicine and advice from the pharmacy for free.”

- “Promote the use of 111.” - “Social Action for Health - target patients who frequently attend A&E to engage in training

and education.” - “TV adverts – big billboards – buses.” - “The role of the patient facilitator in the GP waiting room to both navigate and educate

patients “ - “Residents don‟t value Patient Participation Groups much; GPs must attend Patient

Participation Groups give information there. Administrators should be trained and empowered.”

Following from this theme, people talked about GP services and how this links to A&E use. Comments were linked to: weekend and out of hours access, waiting times, numbers of GPs, quality of GPs and information that GPs could give to patients about which services they should use. Comments included: - “Always being able to speak to a doctor I know on the phone.” - “Would like weekend access to GP.” - “Shorter waiting times, I wait over 30 minutes for GP Out of Hours service. They should

explain the issues with waiting times.” Finally, three people suggested that people should be penalised for using A&E when they could have been used other services: - “Need to introduce a penalty. If people attend twice, give warning of a penalty, if they attend

a third time then give them the penalty.” - “Charge people who are drunk who come to A&E.” Reflections from staff and programme leads The THCCG Governing Body member provided the following reflections from taking feedback on the urgent and emergency care stand:

People don’t know the system or what alternatives there are to GP and A&E (they don’t know 111, pharmacy etc.)

We don’t communicate our messages in their ‘language’.

It took a long time to explain the system to people.

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I gained a greater understanding of some behaviours – e.g. mums with young children would prefer to go to A E at the weekend as know they will be seen. They don’t want to wait until Monday or Tuesday to see a GP, they want reassurance.

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Stand 4: GP referrals to specialist health services (‘Planned Care’)

Question 1 What is your or your family‟s experience of specialist services in Tower Hamlets? Twenty two pieces of feedback were received for this question. People told us their experiences of being referred to and using different specialist services and their experiences varied. Around half of the comments provided by people reported good experiences of using services they have been referred to (including Trauma and Orthopaedics, Neurology, Audiology, Endoscopy and Community Specialist Services) as well as good experience of the referral process being initiated by their GP. For example: - “I had a good experience of the Endoscopy Service, two female nurses were kind and had a

sensitive nature, I felt at ease.” - “I was seen very quickly and received a good service from the Audiology Services at RLH.” - “Once waited to be seen, happy with the Trauma and Orthopaedics department at RLH,

doctors are friendly and put you at ease.” - “My GP with a special interest was effective in managing a health condition in the

community.” About half of the comments told stories of when people had not had good experiences of being referred to and using specialist services. A lot of this feedback was related to the service being slow/having long waiting times and couple of people mentioned a lack of information about the

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services or their associated waiting times. Additionally a few people reported poor experiences of referral decisions, the referral loop and the provision of information. Poor experiences were reported about Ear, Nose and Throat services, Physiotherapy, Optometry and Audiology. The following comments give a good flavour of the feedback: - “My GP is excellent Bethnal Green Health Centre but Physiotherapy referral is very slow. I

paid for it after months of waiting.” - “I have language issues with my GP and have had a long wait for a referral to be sent.” - “Unhappy about being referred for a procedure then back to GP only to be referred back to

outpatients.” - “I‟ve had problems around sending the hospital test results from the GP.” - “Patients feel that they have to push for an explanation as to why they are not being

referred.” Question 2 Do you have any suggestions as to how we can improve these services? Nine pieces of feedback were given to this question with range of suggestions as to how these

services could be improved. Three main themes arose around having control of care and

decision making, information and communications and waiting times. These themes were

interlinked. People fed back that they want to be more informed about their choices and

options, to be put at the centre of their care and be given information and communicated with in

ways that help them make decisions about their care. They want their information to be better

shared between primary and secondary care and the want to know about waiting times, be

referred to the services with the shortest waiting or for there to be an explanation about why

waiting times are long. The following suggestions were provided:

- “I am confused as to what conditions should be managed in primary care and when care should be provided in a hospital.”

- “Patients want to feel at the centre of their care, in particular around decisions in care, GPs need time to explain and do this.”

- “Send patients to hospitals with shortest waiting times.” - “Feedback from consultant teams for the family.” - “Information needed on waiting times in a department.” - “Need good communication between GP and patients, especially if English is not the first

language.” - “Improve communication between hospitals and GP; I don‟t want to have to explain again.” Reflections from staff and programme leads The THCCG Governing Body member who was stationed on this stand provided the following three pieces of reflective feedback:

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People don’t know what ‘planned care’ is.

The most common area of concern is it takes so long to get an appointment with Barts Health services.

People want speedier referrals.

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Stand 5: Integrating care to meet individual needs (‘Integrated Care’)

Feedback from event attendees Question 1 What is your experience of services working together in Tower Hamlets? Eleven pieces of feedback were given to this question and there was a lot of variation in the response. A couple of people said they had good experiences of coordination and a couple said their experiences were not good. The need for better coordination and communication were mentioned twice as well as experiences of care at home, one being positive and one being negative. The importance of carers was mentioned, as was how complicated people found the complaints process. People told us: - “As a carer I feel that if I wasn‟t around she wouldn‟t be supported. I need someone to

coordinate care.” - “My patient requires support from multiple services. Need more domiciliary care e.g.

podiatry for people who are house bound.” - “Good services for my deaf daughter.” - “No connection between health and social care.” - “Home care available.” - “I had to fight for basic help from the council.”

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Question 2 How can we encourage people to allow us to share their personal information between different organisations? Although only four pieces of feedback were provided to this question, three of them said that people assumed or thought that information was being shared already for example “Probably everyone is „in‟ unless they „opt out”. The feedback could suggest that people are happy or confident in different organisations and services sharing their information, although this is an assumption. It suggests that people don’t know they will need to consent to organisations sharing their information so this needs to be clearly presented to people. Similar feedback was provided to the questions asked about IT; see page 32. Question 3 How can we help people to use services outside of hospital to support their health? Event attendees gave five pieces to this question. Two of them mentioned the use of volunteers and ‘befrienders’ and another two mentioned knowing what services are available to help people. One person knew what was available but didn’t find the services useful. Some comments were: - “Encourage volunteering/befriending and offer training to enable volunteers to correctly

support the physical needs of patients.” - “Ensure patients who are „socially excluded‟ are aware of local services e.g. age concern.” - “I know these services exist but they do not offer the right support.”

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Stand 6: Diabetes, high blood pressure, chronic breathing problems – ‘long term conditions’

Feedback from event attendees Question 1 How can we support patients to take greater control of their long term condition? Attendees provided twelve pieces of feedback to this question, suggesting a range of different ways in which patients can be supported to take greater control of their long term conditions. The most predominant themes to come out of the feedback were linked to education, advice and programmes of support to help people manage their conditions. Learning about nutrition and healthy eating was mentioned a couple of times and people suggested different channels for communication and reaching people, such as via the radio and via the community and voluntary sector. Additionally, a couple of people mentioned that the quality of support that they get from their GPs (linked to the time they have in their appointments, access to appointments and communication) would help them to manage their conditions better. One person talked about understanding peoples’ motivations and then basing a programme of education around this. Some of the feedback provided for this question was: - “Self-management programme is really good and useful programme for long term

conditions.” - “Use the radio, a good way to reach people and educate them. LBC did programmes on

health education.”

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- “To think about non-medical services that patients interact with community and voluntary sector and use them to help patients manage their conditions.”

- “Be more positive about the difference we are making. It‟s about the quality of people‟s lives.”

- “Quality and accessibility of GP services is a doorway to patient engagement and education.”

- “Group sessions to help with practical issues around medication. Understand why people are non-compliant, what their behaviour is and what motivates them.”

Question 2 Tell us what you think would help you lead a healthier life? Eight pieces of feedback were given in answer to this question and the suggestions varied which could reflect the fact that different things will help different people to be healthier, depending on their lives, health and conditions. Exercise and advice was mentioned most, as well as reminders about appointments, better rehabilitation for conditions, eating well and finally having a home! Some of the feedback to this question was: - “Exercise on referral.” - “To get a roof over my head.” - “Would like more „healthy lifestyle‟ advice from my GP.” - “Community centres for health advice.” Question 3 Do you think your health is your responsibility and why?

No attendees provided feedback to this question. It may have been that this question was not visible enough or people were not directed to it. Reflections from staff and programme leads The Governing Body member who took the feedback on this stand provided a few strong reflections based on their experience of talking to people throughout the day:

Health messages are not getting out there; people don’t have an understanding of key health lifestyle messages.

People are not taking responsibility for the own health.

If you are homeless; you can’t begin to tackle or take control of your conditions.

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Stand 7: Mental health

Feedback from event attendees Question 1 How do we ensure that people have a good mental and physical health? Twelve pieces of feedback were provided for this question. Some of these do not seem to wholly fit the question suggesting that people may have been providing their general feelings or experiences of mental health services in the borough. However, some themes did arise. The most common response was about the service provided by MIND and all of this feedback was negative. Four pieces of feedback related to bad experiences of the MIND service with people mentioning poor quality, lack of information and delays. In two of these pieces of feedback people said that they had made formal complaints. Following on from this theme, people were most likely to respond with comments about information, support and combatting isolation, although again, these comments often reflected negative experiences. Some of the comments that people provided were: - “My sister has learning difficulties and uses a wheelchair and has PEG feeds. No day

centre is suitable for her so she is stuck at home.” - “Discount scheme to help people with mental health problems to eat a balanced diet in local

cafes.” - “Have a joined-up service to ensure that when someone is diagnosed, appropriate action is

taken.”

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- “The drop in session as the Bromley by Bow Centre had no one from MIND to help and give information.”

- “I have sent a complaint to the head office of MIND and had no satisfactory response. They give very poor service and no continuity. Need more intensive, more expensive services as a result and these are also unsatisfactory.”

Question 2 How do we reduce stigma and discrimination in relation to mental health? Unfortunately no feedback was provided for this question at this event. Reflections from staff and programme leads The stand was operated by two staff leads for mental health who both provided reflections on their experiences of talking to local people who attended the event:

I was struck by the number of Bengali women of around about middle age, who came to talk about how to access help for depression.

My experience was that carer’s assessments (for people who could apply for them) and services for young people with autism came up more than once.

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Stand 8: Last years of life

Feedback from event attendees

Question 1 What are your wishes and expectations for when you reach the last years, months and days of life? Fourteen pieces of feedback were given for this question and there were a number of strong themes that emerged from this feedback. Support was a theme that was mentioned by half of the respondents, with this being support in a broad sense from friends, family, carers and the wider community, as well as from health professionals. Being able to control care and being empowered with choice and freedom was also mentioned a lot and these comments linked to the provision of information which was also mentioned by respondents. Information in this instance would be something that helps you to be empowered with choice and control in your last years, months and days of life. In particular one person mentioned the use of ‘Advanced Directives’ which is a way of having control and choice and that this should process be promoted. Four respondents fed back that they would like to die at home and these comments were linked to the need for support, control and safety. One respondent said that they would like to die in hospital and this was perceived as a place where they would suffer less. .These are some of the responses given in answer to this question: - “To be surrounded by those I love at home, the ability to control my care and how I receive

it. To have the freedom to determine how much / little care I receive.”

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- “To die at home if possible. To be given the minimal amount of drugs possible. For my carer(s) to have support both from friends and from professionals.”

- “Families would want their loved ones that are dying to be in hospital where they could get professional care and suffer less. It gives them more hope.”

- “I spoke to my GP (Dr Ali at Bethnal Green Health Centre) about Advanced Directives and drew one up; he didn‟t seem to know about what they are. We should promote them to patients and GPs.”

- “Hospital signpost to bereavement services - information pack”. Question 2 How can we help carers in their role of supporting those in the last years of life? Less people responded to this question in comparison to the first, which may be due to the emotive nature of the first question or this second question being more linked to knowing, having or being a carer. However, nearly all of the feedback given to this question linked to support, information and training, as follows:

- “Carers befriending service.” - “Carers need counselling.” - “Give them as much or little training and knowledge they want and need.” - “Need to think about „community‟ when targeting those in „carer‟ roles.” - “More information and training.” Reflections from staff and programme leads The THCCG Governing Body member felt that it can be difficult to engage on this subject matter and that there are many links to the ‘Long Term Conditions’ programme, so for future public involvement events, one idea would be to merge these two areas together.

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Stand 9: GP services

Feedback from event attendees

Question 1 What is your experience of using your local GP? Despite this area often being very important to people and as a consequence, people often providing a lot of feedback about their experiences of their GP services, at this event, feedback for this area was quite limited. Six pieces of feedback were given for this question and they were mixed, some people reporting good experiences and others reporting more negative experiences. Where negative experiences were reported, the feedback linked to access and support for people with more complex needs. Some detailed examples of feedback were: - “I am a mother with child with complex needs and I have changed from a practice which

gave good access, now I‟ve moved to another practice where access is very difficult and there are long waiting times.”

- “Docklands GP Surgery has very good service. Appointments are generally available and if not available they take time to explain why they aren‟t available. They have given me advice on lifestyle change.”

- “As a carer, I feel that large GP practices are not looking after complex patients properly. They are not being referred and complaints not listened to, people go to A&E rather than GP.”

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- “Great GP service – good access, telephone triage, automated telephone appointment booking service.”

Question 1 What is your experience of using your local GP? Only one suggestion was given for this question and it was about access – “I wish they were open on Saturdays once a month.”

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Stand 10: Get involved with the NHS

Feedback from event attendees Questions 1 and 2 How would you like to get involved with the NHS? What would make you want to get involved with the NHS? Only a small amount of feedback was provided to this stand as well as the ‘Wild Card’ stand and a staff member reflected that this could have been due to the location of the stands at one of the main entrance points; staff who were operating the stands were often introducing people to the whole session or directing people to different areas or activities at the event. A single piece of feedback was provided to each question: - “More resources for community to come up with their own ideas to stay healthy.” - “More time – don‟t know how to get involved.” Questions 3 What helps people to get involved with the NHS? Five pieces of feedback were provided to this question. Three of those pieces of feedback were about listening to patients better; this was related to listening to individuals in their consultation and more broadly listening to feedback, suggestions and ideas. People also mentioned the

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value of volunteering and the voluntary and community sector to help people get involved in the NHS. Specifically, the feedback was: - “Encourage local people to speak up about their experiences and listen to them.” - “Listening to exactly what the patient is saying, go along with it, don‟t assume, listen and

diagnose.” - “Don‟t think you know better, everyone has the right to be listened to.” - “Encourage volunteering.” - “Need to get the third and voluntary sector more involved.” Reflections from staff and programme leads One of the members of staff who was stationed at this stall reflected that along with the logistical issues mentioned above, this may be an area that people are less likely to gravitate to at an event like this. Therefore, for future events that are similar in format, it might be useful to ‘roam’ with these questions and think of ways to bring this area to life more readily.

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Stand 11: The ‘wild card’ questions

Feedback from event attendees Question 1 Is there anything else that you would like to tell us? This stand gave patients the opportunity to make any other comments, suggestions or tell us their experiences that they hadn’t done so far. People were also asked to provide feedback about how the NHS should operate with less funding. As with the ‘Patient and Public Involvement’ stand, this stand was a little harder to access as the staff who were stationed on it were often dealing with other queries rather than engaging people in the questions. However some feedback was provided. Four pieces of feedback were provided to this question and most of these were positive and supportive in nature for the NHS. The feedback given was:

- “I am here because I am very happy with my GP and health services and I have come to

support you.” - “Make it very clear about what can and can‟t be provided by NHS. Good luck.” - “The mind set of community can be negative around accessing healthcare and GPs and

hospitals. Need to be more positive in sending messages about success stories.” - “Be positive.” Question 2

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What are your ideas for improving health services with less money? Three pieces of feedback were provided to this question and these were: - “Put all the money in one pot and boil down to the point where you have a realistic,

affordable and easy to understand service plan. Then start again to put it together.” - “Stop the roundabouts. Set off and think.” - “What we really need for comprehensive services? What can be afforded? Ask people and

patients what they want, need and expect.”

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Roaming stand 12: IT

Feedback from event attendees Question 1 How can IT help you manage your healthcare? There were a few more questions posed for IT as this feedback was gathered on a digital tablet and could therefore the leads for the area could move around the event. Nineteen pieces of feedback were given in answer to this first question, with people suggesting many different ideas. Five comments were linked to training/learning/education and IT literacy. People suggested good examples of training, how training and e-learning could be applied and that people may need training to help them use IT. Examples included: - “The national centre for smoking cessation and training is a good example of good e-

training.” - “Older Bengali people for example are not computer literate.” - “Extend e-learning for health behaviour change to families.” - Kids use the web on behalf of parents, how could we educate them about where to go for

health information?

People talked about the need for health websites to be linked better so that they share information and signpost people to other services and information, for example someone suggested that “Patient Participation Groups (PPGs) should have a presence on CCG website”

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and another person said “link GP websites to other health sites”. Related to this, a couple of people suggested that they use IT to help them find out about GP services and how ‘good’ they are, for example “there is information on GPs on the MyHealthLondon site”. Practical tools for engaging people to help them manage their health were mentioned by a number of people, with ideas including apps, texts and social networking. One person commented that the current available health apps need improving as they find them “boring”. Other examples of ideas provided were: - “Text reminders for example for HepA boosters.” - “Healthy eating and alcohol awareness reminders.” - “Social networking is a good way of engaging the young.” A final theme that emerged was around barriers and not thinking to use IT in relation to health: - “My son has a computer but he wouldn‟t think about using it for health.” - “I am IT enabled but it wouldn‟t occur to me to use it for health.” - “Frustrating to use, with broken links and missing pages.” Question 2 Where would you go for information? Seven pieces of feedback were given in answer to this question and the majority of people said that they would use the internet for information. One person said they would go to their GP and another mentioned using health information leaflets to direct them to digital information. In terms of the digital locations that people would actually go to access the information they needed, two people said their practice website, two said NHS choices and one said the ‘hospital’ website. Comments included: - “GP website first but it needs to be good.” - “Would use hospital site first as they know local stuff.” - “Signposted to sites from leaflet usually at GP practice.” Question 3 How can you provide feedback? Three comments were provided for this question and these were:

- “Via a PPG, how do we get it up and running?” - “Using service ratings online, but would people bother? Younger people wouldn‟t be

interested.” - “Twitter groups prompt sharing re health”.

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Question 4 Who should be able to see your health records? Four people answered this question and most of the comments suggest that people are happy with their information being shared or think it is shared already and that this sharing should happen in a secure fashion to help clinicians and them to manage their health. The comments were: - “Yes share, it is a non-issue.” - “I would like secure access to own health records.” - “Why are you not doing already?” - “There should be seamless, post hospital procedure information provided to GP, results,

next steps, etc.” Question 5 What do you think about online appointments? Six people provided feedback to this question and the general feeling was positive, with people suggesting that this service would need to be promoted so that people knew that they could chose to book appointments in this way. People told us: - “GP online booking should be publicised in local newspapers.” - “Get the message re GP online appointment booking out to health trainers and using other

signs and posters.” - “I had no idea that this possible, I would like it.”

Reflections from staff and programme leads The Governing Body member and staff lead who asked the IT question said that they took away three strong messages from talking to people at the event, which are linked closely to the feedback:

People assume that we are already sharing their information so they are surprised when we ask them. They don’t know that the need to give us consent to share their data.

We need to use smart phones more to engage.

We need to advertise booking online; people don’t know it is available.

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5. Conclusions and next steps There was a general sense that the event was a success, the format worked well and the turnout of around 200 people was good. The event proved to be a good way to involve patients and members of the public in our annual planning process. Each of our programmes now have a good level of feedback from local people, which can be used to inform the development of updated plans for 2014/15. The input of this feedback into the plans for 2014/15 will be clearly shown and in time we will be able to show people what has happened as a consequence of what they told us. Some essential recommendations for future public involvement events and activities are:

Extend the activities to involve people in our annual planning to different locations and to different formats, to suit and involve different types of people.

Assess the health related activities and offers that we provide and how they are organised and promoted. Test ideas out with local people to see what would appeal to them most.

Increase the number of interpreters and make sure that these people are clearly identifiable and are positioned at important locations, such as at the front of the venue attracting people in (if the event is formatted like this) and at the venue entrance to welcome and sign-post people.

Provide people with clear information about some of the important areas of the NHS and health and care services that we know they need to learn more about. For example complaints processes and alternative services to A&E.

Work closer with local partners, such as the voluntary and community sector. If you would like any further information about the event, this report or the CCG’s approach to patient and public involvement please contact:

Nicola Weaver Engagement Manager

NHS Tower Hamlets Clinical Commissioning Group 2nd Floor Alderney Building Mile End Hospital Bancroft Road London, E1 4DG 020 3688 2545 [email protected] www.towerhamletsccg.nhs.uk

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Appendix 1: Content of event stands

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