Weight Management after Stroke Project Report

Julia Clifford July 2017 Contributions from Dan Wolstenholme, Cheryl Grindell, Catherine Homer

Contents:

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LAY SUMMARY

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SECTION ONE Overview

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(i) Introduction

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(ii) Aims

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SECTION TWO Staff, patient and carer consultation

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(i) Methods

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(ii) Sample

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(iii) Findings

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SECTION THREE Co-production event

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(i) Methods

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(ii) Sample

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(iii) Findings

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SECTION FOUR The future

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(i) Further work/projects

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(i) How learning is shared and outcomes sustained

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Acknowledgements

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References

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Appendices

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Lay Summary

Introduction: Recent research shows that weight-gain is a problem for some people after stroke. This project considered how to improve weight management services for stroke survivors in Sheffield. The aim was to identify interventions, actions or products that could improve current provision and patient experience. Method: The various groups involved were stroke survivors and carers; staff from the stroke pathway; and public and third sector service providers. Firstly, we met to discuss the current stroke services and develop a map of weight management stroke service. Secondly, co-production took place. Two workshops were held to collaboratively generate ideas for services and resources. Outcome: In the consultation, people identified several areas for development. Staff and stroke survivors wanted more accessible resources to help stroke survivors access weight management information. They expressed a need for education on diet and weight management. Staff said that training was needed to build their own confidence and skills in addressing weight management. Specific areas for training were: nutrition, facilitation of behaviour change, and understanding stroke impact for staff not trained in stroke care. Staff also reported that increased knowledge of current services would help them signpost patients more appropriately and wanted clear ways to refer stroke survivors for services. In the co-production, these ideas for changes in service delivery were discussed. This included longer-term services for post-stroke lifestyle. Health trainers, and the voluntary sector support services could be sources of this service provision. More information could be in the form of a ‘cook book’ containing advice, recipes, and educational material for stroke survivors and their carers. A lifestyle questionnaire, based on Motivational Interviewing principles, might support staff and stroke survivors in identifying goals and facilitating lifestyle changes. Dietetic input for weight-gain on the stroke pathway was also an idea. Further work/project development: This consultation generated ideas about future stroke service development for managing weight after stroke. A strategy to address the training needs of staff across services is recommended. More work on

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developing accessible weight management resources using the principles of codesign is also identified. We are seeking funding to develop resources and evaluate their impact.

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SECTION ONE Overview (i) Introduction This report outlines the project that took place between October 2016 and May 2017 into weight management after stroke, specifically focussing on weight gain. Previous research conducted as part of CLAHRC South Yorkshire indicated that long-term weight gain was a problem for some people after stroke (Homer et al 2015). Following on from this study, a CLAHRC Yorkshire and Humber (CLAHRC Y&H) project funded through the RCF within the Translating Knowledge to Action (TK2A) theme was established. The project took place in two parts. First, stakeholders, including service users and service providers were consulted. A co-production event followed, with the overall aim of exploring the implications of the initial research results for current service provision.

(ii) Aims The project aimed to address three specific questions identified by the team: • •

•

What can be done to better facilitate weight management and prevent weight gain for stroke patients in Sheffield? Are there any potential interventions, actions or products that can improve overall patient experience of weight management through changes to current working practice and service provision? Are there any identifiable trigger points for intervention on the pathway?

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SECTION TWO Staff, patient and carer consultation (i) Method Patients, carers and staff were consulted for feedback on the initial research findings, and to address the questions outlined above. The process is illustrated in diagram 1. Staff consultation took place from October 2016 to December 2016. The consultation involved conversations with clinical staff across the stroke pathway, operational stakeholders, weight management service providers, and staff working into council, and stroke charities. Individuals were provided with a copy of the executive summary of the initial research (appendix one) and met the project worker to discuss their thoughts and views on current service provision and possible interventions at service and strategic level. The project team met at regular intervals to discuss the progress of the consultation. Information gathered from the consultation was used to create a process map of weight management on the Sheffield stroke pathway (appendix two).

Diagram one. Consultation process stage 1

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(ii) Sample Discussions took place with 17 members of staff, three stroke survivors and the Stroke Carers group from across the stroke pathway and sectors (see table one):

Table one. Consultation participants Role Stroke survivors (3) Re-ablement co-ordinator, Stroke Association Regional Director , Stroke Association Assistant regional manager – Stroke Association Active programmes manager Role Senior Lecturer, Nursing (Primary Care) Senior nurse Matron Occupational therapist Clinical Psychologist Clinical lead nurse Health trainer Weight management service manager Consultant Stroke Specialist Nurse Dietician Speech and Language therapist Stoke Carers group Commissioning Service manager

Sector n/a Voluntary Voluntary Voluntary Voluntary Sector Education Long term rehabilitation Day hospital – NHS Community- NHS Community- NHS Community – NHS Community – Council Community – Council Acute – NHS Acute – NHS Acute – NHS Community Strategic

(iii) Findings All individuals agreed with the outcomes of the initial research. In summary the outcomes were that: weight gain was a problem for a number of stroke survivors; it was not being addressed enough; the message of weight management was not being communicated effectively to patients and between services; and addressing weight management with patients was complex. Suggestions for service and staff development broadly fell into two categories: 1. Improvements to current practice 2. Approaching weight management

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1. Improvements to current practice

Addressing the educational needs of patients ‘I’m surprised at how little people know about food and diet’ ‘From the beginning to the end and beyond, information needs to be accessible to all’

Providing improved accessible information to all stroke survivors means making dietary advice accessible to those with aphasia and cognitive difficulties. Practical tools for explaining the clear link between food intake, exercise and weight gain would ideally be in an accessible form. These include weight management booklets tailored to the individual, weight-gain advice in the post-stroke discharge leaflet, and more variety in resources to help explain a healthy diet.

Addressing the training needs of staff ‘…train key staff members to give evidence-based advice and support ‘ Improved training of staff in the stroke pathway and longer-term services is a priority. Named staff on the pathway could be made available to give weight management advice. This might include specific training on motivational interviewing, nutrition, and individually tailored advice provision. Some staff felt they did not know what advice to give, at times resorting to discussing weight management strategies that were anecdotal.

Increasing the cohesion and collaboration on the pathway and between services ‘you need follow on and follow up’ Staff and stroke survivors agreed with the initial research, which identified a lack of understanding of what post-stroke services were available in Sheffield. Practical ways to improve staff awareness include In-Service Training, and up-to-date written information for staff and stroke survivors. Shared formal systems to monitor weight management in the pathway were discussed. Proposals included documented recorded discussions with service users passed on between services, and a weight measurement key performance indicator for all sections of the pathway. Staff wanted clear referral systems to services that could see stroke survivors in their own homes if required.

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2. Approaching weight management ‘Different approaches for different things at different times’ I don’t want to come across as lecturing people…I want them to know I’m on their side, it’s a sensitive subject’

Raising the subject of weight management Staff recognised that they can feel uncomfortable talking about weight management. and can avoid the topic. They need help to feel more confident about weight management conversations with patients. A personal, and personalised approach tailored to the individual rather than ‘one size fits all’ was required which could be achieved through the use of a goal-orientated booklet for service-users. The importance of a non-judgemental approach Staff worry about being perceived as ‘finger wagging’, ‘preaching’, ‘judging’, and ‘lecturing’ when addressing weight-gain with stroke survivors. Weight management can be complex, given overall stroke impact, isolation, and pre-morbid weight issues. Formal structures and assessments may ‘legitimise’ the conversation alongside training in how to approach the topic sensitively. Choosing the right time ‘You have to pick your moment and it only works for some people, but I certainly see the light bulb moment’

Generally, it was felt that patients should have the opportunity to consider weight management at any stage in the pathway, and beyond discharge from the pathway. Some stroke survivors wanted to be forewarned early that weight management could be an issue. Some staff said that weight management could be addressed further down the pathway and once patients had been discharged from the stroke pathway.

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SECTION THREE Co-production event (i) Methods Informed by the initial consultation, stroke survivors and stakeholders met for a coproduction event. The aim was to co-design interventions and actions in a collaborative partnership to improve overall patient experience of weight management after stroke (Rycroft-Malone et al 2016). The event took place over two workshops, and covered the first two parts of the ‘double diamond’ format (Figure one) devised by the UK Design Council (2016) by firstly exploring participants’ experiences, and secondly defining potential ideas for further development. Service-users were identified through existing stroke services, the Stroke Association, and existing Patient Participation Involvement groups locally and were contacted by phone, or initially via staff who had identified the person as a potential participant. Aphasia-friendly consent forms and resources were produced with advice from communication experts. Written consent to participate, and share the information and photographs was sought from participants. Carers and stroke survivors were given a £10 gift voucher in recognition of their time and commitment to the events.

Figure one. The double diamond approach ‘Better Services by Design’

Service providers across the stroke pathway, voluntary and public-sector services also participated. A venue was determined that met the needs of the stroke survivors attending.

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The two workshops ran on consecutive weeks. An outline of the event plan is illustrated in diagram 2.

Diagram two. Co-production event

ii. Sample Service providers, stroke survivors and carers jointly considered the design of current and future post-stroke weight management services. 31 people were involved in the workshops, with 25 attending the first and 26 attending the second workshop (see table two). Participants attended one, or both of the sessions.

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Table two. Participants from the co-production events Stroke survivor Carer Physiotherapist CSS/NCSEM) Occupational Therapist CSS/rotational post Clinical Psychologist CSS Rehabilitation Assistant CSS/carers group Speech and Language Therapist/Stroke Operational Manager Stroke Association Reablement Worker Dietician – community Dietician - acute trust Health trainer Health trainer manager Active programmes worker Nurse Sister ARC Stroke Nurse Practitioner Practice Nurse National Centre for Sport and Exercise Medicine Stroke pathway co-ordinator

9 1 2 2 1 1 1

1 2 2 2 1 1 1 1 1 1 1

(iii) Findings Workshop 1 The aim of the first workshop was to capture and understand experiences of weight management after stroke. The workshop began with a session for stroke survivors and carers. The afternoon session involved service providers. This was to promote a safe and open space for discussion. An overlap component between sessions allowed for feedback and interaction between the groups. The morning session with stroke survivors specifically focussed on capturing the experience of ‘weight management moments’ in the stroke pathway. A visual representation of the stroke pathway was developed from ‘before the stroke’ to ‘the present time’: Sentences starting with: ‘I remember’… and ‘if only…’ were completed to elicit specific information on experience of weight management. Service users also identified what would have helped manage weight and prevent weight gain.

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Image 1: The stroke pathway and ‘weight management moments’

The stroke survivors’ experiences were fed back to staff in the midday joint session. Staff members then completed two sentences, which were added to the visual representation of the pathway: ‘We do…’ and ‘I wish….’. All these comments on stroke survivor and staff experience were reviewed and grouped together by the project manager and worker. Four common themes were taken forward as the design briefs for the next workshop.

Workshop 2 The aim of the second workshop was to generate ideas and solutions to the problems identified during the first workshop. Following the first workshop, four ‘design briefs’ were identified and presented to the group: 1. Staff need skills and support to be confident to deliver weight management advice following stroke. What information, training, resources, do staff, across the stroke pathway need to support weight management following stroke? 2. New ways of working (new roles/services) could better support patients to manage their weight after stroke. What might these new ways look like? 3. The way we give information to patients about weight management following stroke is really important. How, when and in what form should we give this information to patients?

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4. The stroke pathway would benefit from being more ‘joined up’. How might we achieve that?

At the beginning of the second workshop, participants were given the option to raise any additional areas for discussion. At this point, a number of participants identified readiness to change as a key area for a design brief and the decision was made to adopt this as the fourth topic. Workshop participants were then asked to: • Choose one of the four topics (design briefs) to discuss in a group, facilitated by a member of the project team • Identify design ideas • Decide on one idea to further develop • Expand on the chosen idea using ‘blue sky thinking’ • ‘Pitch’ the idea back to the workshop

Table three illustrates the ideas generated by the groups.

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Table three. Group ideas

Topic

Background ideas

Chosen idea to develop

1. Staff need skills and support to be confident to deliver weight management advice following stroke.

1. IT sharing of patient records, and a flag for weight 2. Prescription given for diet and exercise on discharge from hospital 3. Dieticians in the Community Stroke Service

Dieticians in the Community Stroke Service

2. New ways of working (new roles/services) could better support patients to manage their weight after stroke.

1. GP Practice nurse healthy lifestyle checks and support 2. Team lifestyle – A new Stroke Specific Multi-Disciplinary Healthy Lifestyle Hub

Team Lifestyle

3. The way we give information to patients about weight management following stroke is really important.

1. ‘Pop-up’ Information centres Use of social media and websites 2. Different forms of communication to meet people’s needs 3. Standards set so staff do give information 4. Cooking support for stroke families and carers

The Stroke Family Cook Book

4. Addressing people’s readiness to change is required

1. The ideal pathway that monitors and addresses readiness 2. The weight management questionnaire

The weight management questionnaire

In order to capture the main idea developed by the group, facilitators wrote up the final idea giving it the context of a scenario. The four scenarios are presented below. Drawing on the group discussions and the overall co-production events, a rationale is given below by each if the facilitators to support the idea. Actions for further development are also given.

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1. Staff need skills and support to be confident to deliver weight management advice following stroke Community Stroke Dieticians (facilitator and author: Catherine Homer) Lisa had her stroke six months ago. Prior to her stroke she and her husband were always 'on a diet' and had tried various ways to lose weight including commercial organisations and fad diets. She lost weight but never seemed to keep the weight off and admits she does like sweets and cakes! Her stroke left her with some mobility issues and swallowing difficulties, in the first few months and weeks after the stroke she lost quite a bit of weight (one of the better complications she thought at the time!). However, over the last couple of months she has regained the initial weight loss and quite a bit more. Her mobility is such that she can't walk far and cannot get out unless her husband is with her to drive the car. Lisa has a lot of visitors to keep her company when her husband is at work, but they always seem to bring a treat, which is not helping her weight. She is becoming increasingly frustrated and upset with her weight gain and appearance, and is feeling more depressed and knows she is using food as a comfort. Lisa would like some help to improve her diet and lose some weight. In the first few weeks and months after the stroke Lisa recalled being visited by various health care professionals form the stroke service including physiotherapists and occupational therapists. At the time, all of the therapists spoke to her about her diet and her weight and offered to refer to a dietician for extra specialised support. Lisa didn’t think it was her biggest problem so dismissed much of the advice they gave her. Lisa's weight is increasing again and now she feels she is ready for some help and advice. Lisa calls the stroke service, explains her current situation to the support worker and the support worker arranges an appointment with a dietetic assistant. The dietetic assistant visits Lisa at home and they go through Lisa's diet. They agree that Lisa should complete a food diary for a week and arrange a further visit one week later. The following week Lisa and the dietetic assistant go through the food diary and they discuss improvements Lisa could make to her diet, taking into account Lisa's limited mobility and reliance on easy to make food, especially whilst her husband is at work. The dietetic assistant also arranges a referral to the health trainer team. The health trainers will visit Lisa every two weeks to take her out for a short work near the home and provide a motivational support to maintain her new eating habits. The dietetic assistant then agrees to visit Lisa in 12 weeks' time to see how she is getting on and check her weight. Lisa is managing to stick to her new eating habits and the meal planning she does every fortnight with the heath trainers is helping her and her husband to lose some weight. Lisa is back to her pre-stroke weight and is hoping to lose more weight as she gradually becomes more mobile.

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Rationale • We know from the coproduction events and research that dietetics support is scarce following discharge from acute care • Other allied health professionals feel uncomfortable raising the issue of weight with patients in case it ruins the clinician - patient relationship, particularly as they have limited knowledge in the types of advice to give and there is limited dietetics capacity to refer patients too. • Patients value and are more likely to act on advice from the appropriate health care professional • A community dietetics resource would support allied health care professionals to be more confident in having a 'weight conversation' with patients and patients would feel like they were getting advice from experts therefore aiding behaviour change • Additional support from health trainers would embed the advice and ensure patients have a longer-term pathway of care Actions • Establishing dietetics resource within the community stroke service would have considerable cost implications, however redistributing existing capacity of dietetics to have named dieticians for CSS to access may start the process • Look at other stroke pathways to ascertain the level dietetic input as examples of good practice • Offer basic nutritional, behaviour change and MECC training to all professionals currently working in CSS to increase their confidence • Health trainers can provide some basic level weight management and behaviour change support and already exist within Sheffield. Consultation with the health trainer service manager may facilitate assigning a health trainer to the CSS

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2. New ways of working (new roles/services) could better support patients to manage their weight after stroke. Team Lifestyle (Facilitator and author: Cheryl Grindell) Bob is a patient on the acute stroke unit having recently had a stroke. Once Bob is medically stable he is referred for a weight and healthy lifestyle assessment, part of the new stroke specific healthy lifestyle pathway. Bob’s named nurse generates an electronic referral to team lifestyle HQ where it is picked up by Jim a stroke specific health educator who heads up a multidisciplinary team (MDT) of allied health professionals, clinical support workers and Sheffield leisure services staff. Jim attends Bob’s next MDT meeting and assesses Bob’s current support needs in terms of his diet and physical activity levels and agrees a plan with Bob and the relevant members of the MDT. A copy of the plan goes in Bobs electronic record and a copy is given to Bob and his family along with Jims contact details and the team lifestyle website address. Prior to Bobs discharge, Jim visits again to reassess any change in his requirements and puts in place a package of care specific to Bobs post stroke needs. Bob doesn’t feel up to going out and about straight away once he is discharged therefore the team lifestyle health professionals relevant to Bob’s needs come and visit him at home. He has therapy to help with his mood, exercise and cooking in the home environment. When Bob feels ready his therapy is continued at his local healthy lifestyle hub at Graves where Jim is based. Bob can no longer drive since his stroke so attends his sessions at Graves using the team life style complimentary taxi/mini bus service. As Bob’s physical and mental health improves he no longer requires one to one support and can choose a number of healthy life style groups to attend at the hub (cooking classes, walking football, wheel chair aerobics etc). 12 months after his stroke Bob is feeling happy and more adjusted to his new life. He has made new friendships, enjoys new hobbies and is maintaining a healthy weight. Jim and the Graves healthy life style hub have provided invaluable support and guidance to Bob and his wife throughout his post stroke journey. Rationale • We know from our workshops that stroke survivors felt that services were not joined up enough. • Both stroke survivors and staff were not aware of all the services already out there relating to weight and healthy lifestyle nor how to refer to them. • Although there are many services already available in Sheffield for health and weight management none of them are sensitive to the specific needs of stroke survivors. Actions • Although this service requires a redesign of the current stroke pathway and therefore has cost implications some resources are already available that could be easily adapted to be stroke specific. • Health trainers already exist. Consultation with health trainer managers re: training of stroke specific health trainers is a feasible option. • Facilities already exist for example at Graves and Concorde. • Some elements of the healthy life style hubs could be incorporated into the stroke association’s new purpose-built premises in Fulwood.

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3. The way we give information to patients about weight management following stroke is really important Stroke Family Cookbook – ( Facilitator and author: Dan Wostenholme) When Dot first had her stroke the memories of hospital were all a bit of a blur. John, her husband had tried to keep on top of everything but there were so many changes to think about it was all rather overwhelming. On the day of discharge, John and Dot were given the “Stroke Family Cookbook”. It had gone into the bottom of the suitcase and had stayed there for a few days while Dot had adjusted to being back at home. A week later when John had caught up with the washing he spotted the book and put it on the coffee table in the lounge. When Dot’s son visited he spotted the book and looked through the first few pages, there was a forward from Andrew Marr about how things had changed for him following his stroke and the introduction had some general information about life after stroke. Dot’s son had heard bits of information about what the stroke meant, but hadn’t read anything himself. John read the book that evening and found himself asking Dot what she thought about the information but he could tell it was still a bit too soon for Dot to really take even more information on-board, John found the section on Stroke specific diet and the “New Cooks” section particularly interesting as he historically had never cooked before, that had always been Dot’s job. A few months down the line the Cookbook, although slightly moth eared, and has pride of place in the kitchen. It’s been a source of inspiration not only in the kitchen but the reflections of other people adjusting to life after stroke have reminded John and Dot that they are not alone. Dot had always been a fan of Mary Berry’s cooking, and she has found that the recipes with, simple to follow instructions allow her to keep her hand in in the kitchen, and that John now makes a mean bolognaise. The advice around portion sizes and healthy diet have supported Dot and John to consider how much they should be eating with Dot not able to do quite as much as she would have done in the past. • • • •

We know that information resources are often in leaflet form and tend to get lost or put away at the back of drawers, the cookbook would be a visible and high-quality resource Following stroke our participants told us it can take 12 weeks before they are ready to take on new information The cookbook could be created in digital forms to work with screen readers Peer support is crucial and the reflections from other people who have had a stroke is a powerful way of supporting people.

Actions • ‘crowd source’ stroke survivors’ favourite recipes and reflections • work with the aphasia standards to produce recipes and content • Work with dieticians and stroke survivors to describe contextually appropriate healthy eating advice

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4. The stroke pathway would benefit from looking at patients’ readiness to take on the lifestyle changes needed to lose weight. The weight management questionnaire – (Facilitator and author: Julia Clifford) Omar had his stroke a year ago. Someone on the ward had asked him about his weight immediately after his stroke as it had been identified by staff as affecting how Omar was progressing in therapy. At the time, Omar felt it wasn’t appropriate, as he had so much going on with all the changes after his stroke. While in hospital, a nurse had filled in the weight management questionnaire with Omar which helped him see that weight loss wasn’t his main focus. The weight management questionnaire covered a number of areas including possible changes to weight and lifestyle, the benefits and barriers of changing, and what would happen if changes weren’t made. The information from the questionnaire was passed on to the staff in the community stroke service via system one. Omar was also given a leaflet of organisations that could help him with his weight if he wanted to talk to someone. While with the community stroke service, Omar was asked about his weight again as part of a routine assessment. Jen, the nurse completed the questionnaire to see if Omar’s thoughts about weight management had changed. This time things had settled down and Omar thought losing weight may help him to feel less tired when doing therapy. Jen was trained in motivational interviewing, and used techniques to help Omar consider ways to overcome the obstacles he faced. Omar was pleased he didn’t feel judged and felt it helped to think about things. When finishing with community stroke service, Omar felt he wanted to think about what he ate and getting out more. Jen passed all this information to Pete, his health trainer. When Pete saw Omar, he re-did the questionnaire, which Omar thought was useful in reviewing how he was doing, and identified the challenges he was having finding exercise classes he could attend and family cooking healthier meals. Pete identified local activity groups Omar could access to support him and supported family members to consider a menu that would help with weight loss. Omar found it particularly helpful that everyone involved in his care knew what had been discussed and he appreciated that staff helped him to look at the problems he had to managing his weight. Rationale • We know from staff that when they raise weight management with patients, it may not be the ‘right’ time and patients are not always ready to address their weight. • A questionnaire would assist in identifying patient priority, readiness to change, benefits and barriers to change and provide a focus for difficult discussions. • Motivational interviewing supports people to make behaviour changes • Staff report that communication between services about patients’ weight and discussions on weight management require improvement. Action • Devise a questionnaire based on Motivational interviewing principles to trail on the stroke pathway and with Health Trainers • Motivational Interviewing training for staff who address post stroke weight management

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SECTION 4 The future (i)

Further work/projects

The co-production workshops covered the first two stages of the co-production process. Further work is required to develop the ideas generated by the workshops. These interventions will then need to be evaluated for impact on collaborative working between weight management and stroke, and services across the stroke pathway as well as impact on healthy weight following stroke. Areas for service and staff development identified from this project include:

Patient information and education. Developing weight management resources for stroke survivors is a priority. Possible funding sources and collaborations involving the Stroke Association and Sheffield Teaching Hospitals could generate weight management information and education resources.

Staff Training Staff feedback after the workshops was that staff valued the opportunity to think and talk about weight management. It helped to build confidence and knowledge when discussing weight management with stroke survivors. Suggestions for training include motivational interviewing, behaviour change and nutrition training across the pathway. The need to train staff in non-stroke specific services is a priority. The possibility of Community Stroke Service staff delivering training to Health Trainers and Active Programmes staff is currently being explored.

Service delivery As a result of the consultation, discussions at strategic level are planned. These are with the Stroke Association Regional Director, the manager of the Health Trainer Service, and the Sheffield Teaching Hospitals Stroke Operational Management Team. Topics will include resource development, such as access to dietetics support, and bringing in representatives from non-stroke specific organisations to be stroke ‘champions’. The Stroke Association funded ‘Life After Stroke’ Centre could be a resource as the centre aims to meet the long-term needs of stroke survivors. A list of all agencies involved in weight management has been developed. This will be disseminated to agencies involved in stroke survivor care (appendix three). A questionnaire to monitor stroke survivors’ thoughts on weight management and

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weight change is also recommended. With funding, a motivational interviewing questionnaire could be developed and trialled in the pathway.

(ii) How learning is shared and outcomes sustained The outcomes of the consultation will be shared locally and nationally. Everyone who took part in the consultation can receive a copy of this report. A presentation is planned for the Stroke Education day in Sheffield. Discussions at strategic level are intended with the Stroke Association Regional Director, the manager of the Health Trainer Service, and the Sheffield Teaching Hospitals Stroke Operational Management Team. An abstract has been accepted to present a poster at the National Stroke Forum Conference in November 2017.

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Acknowledgements Thanks, and gratitude to: All the staff and service users involved in the initial consultation and co-production events. The project team: Professor Angela Tod, Dan Wolstenholme, Professor Tony Ryan, Catherine Homer, and Cheryl Grindell.

Disclaimer This project was supported by the NIHR Collaboration for Leadership in Applied Health Research and Care Yorkshire and Humber (NIHR CLAHRC YH). www.clahrcyh.nihr.ac.uk. The views and opinions expressed are those of the author(s), and not necessarily those of the NHS, the NIHR or the Department of Health.

References Design Council. (2016) A Study of the Design Process. [online] http://www.designcouncil.org.uk/sites/default/files/asset/document/ElevenLessons_D esign_Council%20(2).pdf

Homer, C. et al (2015) Weight Gain following a stroke in Younger age (below 70) men and women: Challenges and opportunities for prevention and action. NIHRCLAHRC Yorkshire and Humber Rycroft-Malone, J. R. et al (2016) Collaboration and co-production of knowledge in healthcare: Opportunities and challenges. International Journal of Health Policy and Management,5(4), 221-223

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Appendices Appendix one. Executive Summary: Weight Gain following a stroke in Younger age (below 70) men and women: Challenges and opportunities for prevention and action. (Homer, C et al 2015)

Introduction This report presents findings from a study to explore the incidence of weight gain in working age adults aged men and women in South Yorkshire. The research was funded by Research Capacity Funds from the National Institute for Health Research, Collaboration for Applied Health Research and Care South Yorkshire (NIHR CLAHRC SY). The project was developed following a research prioritisation event focused on obesity. The event was conducted with staff from a range of stakeholder organisations including health, social care, and voluntary sector.

Methods

Data collection took place between August 2013 and March 2014. A survey was sent to respondents of the South Yorkshire Cohort (Relton et al 2011) who were under 70 years old and had had a stroke. In-depth interviews (n=12) were carried out with patients responding to the survey living in Sheffield and participants from a local volunteer run stroke support group for working aged people. In-depth interviews were also undertaken with professionals (n=18) working across the stroke service pathway in Sheffield. Framework analysis techniques were adopted.

Findings The research demonstrated that long term weight gain is an issue for some patients following their stroke. Interviews with patients highlighted a range of lifestyle related challenges that people face following a stroke. Reduction in activity levels was reported as a key influence on weight gain. The health care system and stroke pathway currently provides short-term support to patients to aid recovery and rehabilitation. Longer-term support is harder to access. Existing and new support networks provided by health services, family and friends are essential in recovery and prevention of weight gain. Interviews with staff revealed gaps in their knowledge of their colleagues' roles across the stroke care pathway. Communication between health care professionals across the care pathway was also limited. The presence of patients who gain weight following a stroke was not evident across the entire stroke pathway for example staff in the acute setting were less likely to notice weight gain. Not all staff gave health promotion advice to patients, however all staff thought health promotion advice should be offered to patients, at a time appropriate to the individual and in a manner that will engage the patient in behaviour change. Staff highlighted the need to engage family members in a patient’s rehabilitation to prevent long term weight gain.

Key Messages • • • • •

The long-term effects of stroke on weight gain are complex. Eating and activity behaviours and social isolation all play a part. Reduction in activity levels was a key influence The long-term physiological and psychological impacts of the stroke challenge patients in controlling lifestyle and diet change following their stroke The presence and nature of families and social networks before and after a stroke influence weight gain Timing of health promotion advice needs to be patient centred Integrated care pathway can play a part to improve communication between health professionals and patients

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Appendix two. Process mapping the management of weight on the Sheffield stroke pathway. This map identifies current service provision to stroke survivors in Sheffield. It goes from the point of admission (L1/2, Q2, or the Rapid Stroke Assessment Clinic), to community rehabilitation (CSS) and day hospital rehabilitation (ARC). All stroke patients are reviewed at 6 weeks at clinic (RHH) and 6 months (ARC or CSS). Services outside the stroke pathway with a potential role in post stroke weight management were: Active programmes, Health trainers, Why Weight, the Stroke Association Reablement Service, and the Stroke Education group. The map indicates difficulties exist in recording patients’ weight measurements. This is both on the ward when bed-dependent, and also in patients’ homes if the patient is wheelchair dependent.

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Weight Management and Stroke pathway Sheffield

6 week review from time of hospital discharge weight recorded

Rapid Stroke Assessment Clinic

S T R O

1 / .

K Start

6 month review ARC telephone review, CSS face to face review (Aphasia/cognitive deficit)

Pts not ‘routinely weighed’ – no criteria for recording weight

HOME BASED REHABILITATIONCommunity Stroke Service (up to 12 weeks)

E / T I A 2 .

Admission (HASU) L1/L2 (HyperAcute and acute inpatient facility) Weight taken, difficulties noted with weighing bed dependent pts Stroke information pack issued

iii) Stroke Association Reablement coordinator Sessions on managing weight if identified as a problem. Group healthy cooking sessions Will see in own home to monitor and advise •

Stroke Unit RHH (ASU/SRU)

Weight recordeddifficulties weighing non-mobile pts Lifestyle/health promotion advice given. Resources used include: stroke association and dietetic leaflets, internet resources

Q1/Q2

D I S C H A R G E P R I M A R Y

ASSESSMENT AND REHABILITATION CENRE (ARC) (Day hospital attend one day a week, 6 weeks-2 years) Weight recorded, Initial nurse Ax includes nutrition and lifestyle question. Life after stroke group includes dietary advice (not all pts attend)

C A R E

Stroke Information pack issued

(GP)

COMMUNITY BASED AND EDUCATION RESOURCES (referrals can be made from any stage in the pathway)

Sheffield City Council/CCG Health trainers 8 intervention sessions (up to three months) Smart goals on lifestyle change ‘experts in the local area’ Signpost into local resources

SIV Activity groups/exercise referrals 12 week scheme (can be seen twice a week) 5 venues across the city Self-funded- £3.75 a session

Stroke Education Group Session on healthy eating within stroke education programme RHH Q2

Why Weight Tier two and tier three weight management service 12 week programme

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Appendix 3. Agencies involved in weight management in Sheffield

Would you like support with losing weight and having a healthy lifestyle after stroke? Here is a list of agencies that offer help: Stroke Association Reablement co-ordinator Contact: Jane Hammond Tel: 2310882 Venue: group and one to one sessions. The Stroke reablement worker will see you in your own home to monitor and advise. Service: Sessions provided on managing weight if identified as a problem. Group healthy cooking sessions Cost: no cost Sheffield City Council/CCG Health trainers Contact: email: [email protected] Telephone: 0114 293 0682. Venue: In the local community Service: 6 - 7 sessions on a one-to-one support (each session can last 1 hour). Support, encouragement and motivation in changing or leading to healthy lifestyle change Set smart goals on lifestyle change – weight, smoking, alcohol, exercise & Diet etc. Accompany you to first appointments if needed Signposting provided into local resources – e.g. exercise classes Providing support with isolation Cost: No cost The SIV Exercise Referral Scheme Contact: Email- [email protected] Telephone 0114 2574426 Venue: 6 venues- Concord, Hillsborough, Ponds Forge, Springs, Heeley and Westfield. Service: 12 week scheme- minimum of 4 hours contact time with own instructor- more if required. Specialist stroke sessions delivered across the sites. 12 week scheme (can be seen twice a week) 5 venues across the city Concord -private training gym working with stroke survivors Cost: self-funded £3.75 per day pass, or £63 Upfront or £23per month. Access to the gym, pool and all classes. Why Weight The city weight management service Contact Email: [email protected] Referral: Tel: 3211253 or speak to your GP Venue: A number of sites throughout Sheffield, dependent on demand. 12 week group programme Cost: No cost Stroke Education Group Referral: From the ward, or health professional Venue: Q1 ward day room - every Tuesday 2pm-3 pm Service: a range of talks by health professionals including one session by a dietician. Open to everyone including carers and relatives

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