Participatory Evaluation of Bowel Cancer Uk Project by Vikki Hilton

A participatory evaluation of the development of the Bowel Health and Screening Resource for People with Learning Disabilities, carried out on behalf of Bowel Cancer UK carers guide

Hilton Associates March 2011 - January 2013

This project was supported by:

Contents Acknowledgements Acronyms For more information contact Bowel Cancer UK - an introduction How this all happened Aims and Objectives Project aim The objectives were What people are saying about the project What happened Why Evaluate? How it was done The Working Group The aim of the working group was The remit of the group was The membership of the group was Evaluations from the working group Working group final evaluation Project Leads final evaluation Health Advocacy Group evaluation The training Results of the evaluation immediately after the training Post training evaluation Summary and recommendations arising from the training evaluation The Launch Recommendations arising from the evaluation General Training specific Key learning Overall Key learning from the project from the project lead Next steps Conclusion Appendices Appendix 1: Example of methods Appendix 2: Training report

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Acknowledgements Thank you to everyone who was involved in the Bowel Cancer UK Project and participated in the evaluation by sharing their ideas and opinions. Thank you to the Project Lead from Bowel Cancer UK who enabled this to happen and through her enthusiasm has made this an engaging process. Thank you to Awards for All Scotland for supporting the work with an award to Bowel Cancer UK.

Acronyms CHCP = Community Health and Care Partnership LD = Learning Disabilities PWLD = People with Learning Disabilities PAMIS = in partnership with people with profound learning disabilities and their carers. SCLD = Scottish Consortium for Learning Disability

For more information contact: About Bowel Cancer UK Emma Anderson Scotland Operations Manager T: 0131 225 5333 A: 20 Queen Street, Edinburgh, EH2 1JX E: Emma.Anderson@bowelcanceruk.org.uk

About this approach: Vikki Hilton A: 3 Priory Grove South Queensferry EH30 9LZ E: vikki@hiltonassociates.com

Bowel Cancer UK – an introduction Bowel Cancer UK aims to save lives and improve the quality of life for all those affected by bowel cancer.1 For 25 years the charity has raised awareness of bowel cancer, campaigned for best treatment and care and provided practical support and advice. The charities headquarters are in London, England. They also have offices in England, Scotland & Northern Ireland. This project was run from the Edinburgh office. They are a charitable organisation, almost completely dependent on voluntary donations. Early diagnosis of bowel cancer in the UK is a problem because people either find it uncomfortable to discuss the symptoms of the disease or simply do not know what they are. Survival rates in the UK are amongst the lowest in Europe, with 15% more patients being diagnosed at a later stage of the disease in comparison with most other European countries. This is why Bowel Cancer UK’s work - to encourage people to recognise the symptoms of the disease and to act on their concerns so that they have the best chance of survival - is so important.

How this all happened: It became clear from conversations between members of the NHS in Scotland, People with Learning Disabilities (PWLD), their care providers and Bowel Cancer UK staff that there was a lack of resources available to help people with learning disabilities and their carers take part in the bowel screening programme, and inform them about the importance of good bowel health . In March 2011 Bowel Cancer UK and NHS Greater Glasgow and Clyde Health Improvement Team invited a wide range of people with an interest in working with people with learning disabilities to a meeting. From this initial meeting people emerged who were interested in being part of a working group to develop a resource and training programme.

Aims and Objectives Project aim:

• to develop an appropriate resource for people with learning difficulties and their care providers to help people engage with the bowel screening programme and to understand the importance of good bowel health

The objectives were:

• to bring together a group of people to guide the development of an appropriate resource that meets the needs of people with learning disabilities and their care providers • to involve a wide range of people with learning disabilities and carers in the development of the resource • to develop and deliver training days about the new resource for those who care for people with learning disabilities 1

http://www.bowelcanceruk.org.uk/

What people are saying about the project “That’s a great thing because when I got mine through I never knew how to do it and my carers had to get me another one. Some people might not know how to do it.” A woman with learning disabilities “I think that this is an important project to continue with as the incidence of bowel cancer is high in Scotland and a lot of people with Learning Disabilities will not access the national screening programme due to a lack of understanding. Also the ones that do may not complete the test appropriately, thus making the test null. Some of the education and training may also help the carers to access the test appropriately - when speaking to some carers while gathering information from the focus group it was evident that there were areas that the carers were unclear about. So given that early detection results in a positive outcome, I think that the more people we can encourage to participate in the screening and training programme the better it is for everyone.” Community Learning Disabilities Nurse “Please keep paying for us to get information that we can understand and look after our health. We are just as important as everyone else and can get sick like everyone”. “All this information is very good and it helps me look after private things about my body and it stops me having to keep asking for help all the time” “The pictures help me look after myself and let me be independent like all other people I know it may cost lots of money but it means LD people may save their own life” All quotes from people with learning disabilities.

What happened? To begin, the project leads Emma Anderson (Bowel Cancer UK) and Claire Donaghy (NHS Greater Glasgow and Clyde) decided that a collaborative approach would enable the aims and objectives to be met and that engaging with the people most in need of this resource was very important. They also decided to integrate an evaluation process into the project which would evaluate the project at different stages of development. In March 2011 a group of people identified as associated with or interested in health and learning disabilities were invited to an initial meeting. Those interested helped form a working group which met on a three monthly basis to advise and help with the project. Each meeting was evaluated individually by the participants. As the resource was drawn together, six focus groups were held in December 2011, January and February 2012. Four groups were attended by people with learning disabilities and two were attended by carers to evaluate the material and advise on changes that could be integrated into the resource to improve content and presentation. A launch of the resource and training programme was held in September 2012 which 78 people attended. Training was seen as an integral part of the process and two pilot training events were held June 2012. They were evaluated as very successful and a further four training courses were held, two in November and two in December 2012.

Post- project evaluation meetings were held with • the two project leads in November 2012 • the Steering Group in December 2012 • the Health Advocacy group steering group members in December 2012 • the Health Advocacy Group in January 2013 • post training telephone conversation evaluations carried out in January and February 2013 after completion of the December 17th training

Why Evaluate? It was decided that an ongoing evaluation, rather than an end of project evaluation, would ensure changes could be made throughout the process. As a result participatory methods were used throughout in meetings, to evaluate all stages and as part of the post project evaluation. This helped improve the engagement process as changes could be integrated into the process in response to the needs of the project. Often projects are evaluated at the end of the project when it is too late to implement changes. With the approach adopted in this project each meeting, event and activity was evaluated by participants and facilitators reflecting on what worked well, not so well and what could be improved and how. The evaluations were taken account of and changed to improve the process throughout.

How it was done At the end of meetings and focus groups attendees were asked to record on the following method sheet (displayed left) how they felt about the meeting from not so good to very good and to give reasons for their score. This method is called an evaluation spectrum and encourages open answers. It was also used in the final evaluation. A more detailed method, the Moving-On diagram,2 was used by the facilitators to evaluate how they felt the event went and was also used in the final evaluation for more in-depth answers. This method encourages people to reflect on the process and come up with solutions or ways of improving the project.

Moving-on diagram ©Vikki Hilton

The Working Group Sixteen people came to the first meeting in March 2011. From this a group emerged which varied from nine to twelve people who had the time and interest to help with the project.

The aim of the working group was: To increase awareness of bowel cancer and bowel screening among people with learning disabilities and their carers. This was done by researching, creating, designing and producing a resource pack to assist people with learning disabilities in having a better understanding of bowel health and the national bowel screening programme. Alongside of which, a training programme for care providers was created to assist them in addressing bowel cancer and the screening programme with their clients.

The remit of the group was: 1. to identify consultation and involvement opportunities with people with LD to develop appropriate resources 2. to Identify local opportunities to increase awareness and promotion of key messages to people working with or caring for people with LD 3. to take a multi-disciplinary approach to maximise uptake of screening programmes through promotional campaigns 4. to identify training opportunities and develop a dissemination/communication/implementation plan for the resources 5. to contribute to the development of the LD resource pack by providing feedback on its scope and contents

The membership of the group Emma Anderson, Scotland Operations Manager, Bowel Cancer UK Claire Donaghy, Health Improvement Senior, NHSGGC Other members were co-opted on to the group as and when required.

Evaluations from the working group The initial meeting in March set the tone for the meetings and was evaluated well as can be seen from the scoring below:

At all the meetings attendees’ comments were noted by the facilitators and each time the process was modified if required in response to comments. This enabled the group to work well together in a collaborative manner because their needs were responded to in a transparent manner. People liked the structure of the meetings, the relaxed atmosphere, the clear direction and focus and the opportunities for discussion. Comments were made that they were productive meetings, everyone’s voices were heard and there were lots of ideas. The project leads and meeting facilitators also evaluated each meeting and used each evaluation to improve the way they facilitated the meetings. A meeting once every quarter was decided at the beginning of the project so people could hold the day in their diaries. This worked well for the group and was commented upon during the end evaluation.

Working group final evaluation The working group end of project evaluation meeting took place on Tuesday 20 November 2012 with seven members, (including two students) participating. Two other members who were unable to attend shared their ideas on 17th December at a separate meeting. Their views are included in this summary. “The project is a good example of good practice”. “I’ve done something worthwhile; it’s why I came into nursing”

Title of Evaluation Session:

“How it’s been” from March 2011 to November 2012-11-23

High points and the skills they brought to the project

The evaluation started with people talking about the high points and the skills people bought to the project.

Summary of peoples high points:

Planning from initial meeting and the fact Inverclyde would get recognition in working with this important project in March 2011. Realising as a result of the focus group there was a need for the resource Identified need for PWLD and seeing it published for people with LD with an aim to improve health outcomes. The meeting when we made the final plans for the launch in August 2012 and ring the draft resource with the group, and hearing the feedback from the focus groups (August 2012) Team motivation, enthusiasm, multi-dimensional input and sharing of thoughts and being involved in a project that was so clearly focused on health. Reminded me of why I came into nursing. Strong users and carer input and networking from carer to carer Opportunities for further training to carers, providers, health and social work, families Well planned and ability to have regular contact and endorsement by NHS Scotland. The two student nurses participating in the evaluation said: An easy read; visually stimulating; colour coded; features individuals with LD that can encourage others and the DVD is helpful for people who can’t read. Also it had an easy to understand evaluation form which can involve both carers and individuals with LD.

The qualities of each other - what is most appreciated by colleagueâ&#x20AC;&#x2122;s inputs:

This included peopleâ&#x20AC;&#x2122;s specialist knowledge of health, social work and local areas; organisational skills; enthusiasm and optimism and patience. People also appreciated memberâ&#x20AC;&#x2122;s personal experiences of working with PWLD and knowledge of how to develop a resource.

How effective has the process of developing the resource been? Participants were asked to rank their experience of the process from not so effective to very effective. As can be seen in the chart people thought the process was very effective. They then recorded their reasons for why they thought it was an effective project and what challenges there were as well as any improvements for future projects.

A. Things that worked well:

The working group The people involved with wide expertise and experiences, interagency working i.e. community nurses rather than management and the involvement of student nurses. The project is an example of best practice. The involvement from the health advisory group worked well. People enjoyed having the opportunity to see the final resource completed, watching the programme from inception to completion. The resource was created from the group up rather than top down, i.e. from service users rather than management. Some members of the working group did have senior management buy in. The way the working group opperated: People liked being involved in the project because all decisions and actions agreed from each meeting were followed through and communication between meetings was good; the meetings were chaired well, staying in line with the agenda and all group members were enthusiastic and committed. The GANNT chart and the evaluation were appreciated. There was a breadth of experience within the group, the group worked well together in partnership and everyone had the opportunity to contribute and share their opinions. The ongoing review of the resouce worked well. Being involved at the start was very important and positive and being part of resource and working closely with people with learning disabilities was highlighted. Also working with Bowel Cancer UK developing from health improvement groups with PWLD identified need. There was a feeling of professional pride having their name attached to the project and people felt they managed to get to most of the meetings despite time constraints due to their desire to be involved. Someone also felt it was easier to deliver the training because of the ownership of the material/ professional assistance from the project leads.

Skills People thought communications were effective, that they learned project development skills, it was good for their C.V. and networking was effective. Focus groups People thought the focus groups were effective in involving a range of people and hearing their views. Training Bowel screening training - very good! Well accepted by carers.

B. Things that have been more challenging

Working group One person felt the group could have benefited from more participants and from more varied experiences. Also there were a couple of comments about the availability of car parking at the meeting venue. The way the working group opperated Someone felt that things got a bit personal/territorial with Renfrewshire team and their similar project. Felt a bit awkward as both resources are excellent and this should be recognised. Someone else was disappointed at the participation levels from whole working group mailing list (same 10ish people were involved and engaged) as some people did not respond. Also sub-group involvement was very lacklustre, nothing was particularly achieved. Time constraints both own, group and focus group members as well as negotiating time with management to attend meetings. Focus Groups One person said that there was no one available to support them - had to record information and listen to what was being said and would have liked guidance on how to co-ordinate focus groups

C. Things that could be done differently in the future

Some suggestions include possible representative from each member of service user group as well as involving service users from the beginning so service user would have more ownership. Engage with senior management in early stages to ensure buy-in and that staff are given the necessary time to attend. Senior managers need to support project and staff involvement, so it would be a good idea to involve them more. Better planning and management of sub-groups, or consider whether they are necessary at all? Perhaps it would be easier for individuals to take on particular roles, rather than committing to meeting with others. More thought put in the development of running focus groups, more support and planning. Someone said on a personal note they had â&#x20AC;&#x153;Learned more about project development and used it in other projects alreadyâ&#x20AC;?. Someone also thought projects should get buy-in from Glasgow Caledonian University or other universities to include student participation. On a practical point people suggested better car parking facilities.

Partnership working: Whatâ&#x20AC;&#x2122;s worked really well?

People said the knowledge and experience of all the professionals and the shared learning with everyone contributing worked well and made for good networking as well as improving interagency working. Also working with PWLD as part of the process was valuable as part of the partnership working.

What difference will the resource make? (from not much difference to a lot of difference) People thought the resource would make a difference because: It was a starting point for health improvement/screening and delivered presentation to carers this then allowed for opportunity to present on other health issues around screening. It is also something tangible to offer people when they come with specific queries, i.e. people seeking something to help them help the people they care for. It raised awareness and changing the views of users and carers who might have previously not participated and now are. It has helped with further development of current projects in placement and being able to implement this e.g. role of the LD nurse. It also generated interest and motivation and will become embedded in practice in time

Being involved in the project has made a difference to the way I work

Reasons for the scores were: People enjoyed seeing the resource come together and were more likely to look at being involved in developing other resources; the experience helps when mentoring students - explaining why the pack is important. One person said â&#x20AC;?I am a lot more aware of the importance of seeking alternative opinions when I am considering a particular course of actionâ&#x20AC;?.

Also the model used for this steering group met expectations and contributed to continual involvement and was a good model to follow - from chair to evaluation. It provided more confidence in leading and managing other projects and motivated someone to want to take part in other projects that promote and improve the health needs of people with learning disabilities (PWLD) For someone else it “Renewed my enthusiasm and increased my motivation/confidence to do more health promotion focused work”. People said they would use the skills in other projects and some had already taken on new projects because of increased confidence. Two student nurses came to the evaluation meeting and had been involved in parts of the project they said being involved had made a great difference to the way they worked because it had increased their knowledge and understanding.

Summary

The working group experience was a very positive one with people feeling that they were respected and listened to and valued as members. People also said they learned a lot from their involvement and were using the new skills in other work. People talked about making time for the meetings even if they were very busy. There were suggestions for widening the membership, although most people felt the right people came to the meetings. Out of sixteen people who participated in the first meeting in March 2011 nine to twelve people participated consistently. The project leads wanted people who had time and enthusiasm to attend, not those who had been pressured into it. This meant the group was enthusiastic and committed to the project because they chose to be there.

Project Leads final evaluation A similar process for evaluating the project was carried out with the two project leads, on November 23 2012, as was used with the steering group members.

Title of Evaluation session:

“How it’s been” from March 2011 to November 2012-11-23

High points and the skills they bought to the project

High points for the project leads were Health Scotland’s agreement to take the resource on for the future print run in August 2012, the resource launch event in September 2012 and the photography event in May 2012 (meeting the people the project will help).

The qualities of each other - what we most appreciated by our colleagues inputs

Claire: “Was the lynch pin, her NHS knowledge, continued support from the beginning and couldn’t have done it without her.” Emma: “I loved working with Emma because of her commitment to the project and her enthusiasm throughout.”

How effective has the process been for developing the resource? (from not very effective to very effective)

One gave a score of 9/10 and the other 8/10 but agreed after sharing their ideas on an overall score of 8/10.

They recorded their reasons for why they thought it was an effective project and what challenges there were. They then grouped and similar ideas and came up in what might be changed / improved in the future and any key learning.

Summary of positive comments by the project leads:

After discussion they made ten key points summarised as: 1. LD working group members who were committed, enthusiastic, the right people from a variety of disciples and representation from a wide geographical spread with knowledge of local areas and the experience of working with LD 2. involving people with Learning Disabilities and their care providers throughout in consultation, resource development and launch has been rewarding 3. training programmes: The development of the training session was exciting and has worked well in supporting the roll out of the resource. It’s been an excellent way to really add impact and develop the project further 4. the finished pack, great resource and great feedback 5. Really appreciated the involvement of Glasgow Team Leader for LD as she has been fundamental in communicating the project to others 6. profile: It’s really enhanced Bowel Cancer UK’s presence as a charity worth taking notice of in Scotland. Our Network has been widened and people know about the Bowel Screening programme 7. on-going evaluation - helped enhance the project experience 8. project management - it enhanced skills in managing joint projects and given Bowel Cancer UK new confidence to apply for funding 9. working with Claire - joint responsibility, someone to talk to - I have huge admiration for her work and have thoroughly enjoyed working with her

B. Things that could have been done better/differently

1. time - I would have budgeted more of my time, not taken so many other things on or outsourced a project lead/manager 2. behaviours: learning to manage the behaviour of individuals within group and timescales of people. 3. working group: Some LD working group members did not contribute as expected, a lot of resource production was left to the two project leads. The input from SCLD was disappointing, they didn’t entirely do what they were commissioned to do

C. Things that could be done differently in the future

Improve communications with Senior Management Team. at NHS, better planning from the beginning and having more administrative support. Making more time for including stakeholders throughout the process, and firming up expectations from Working Group members early on by agreeing some sort of contracts or agreement.

Partnership working: What’s worked really well?

Everyone and their contributions were valued and there was open and honest, continuous communication throughout the project. Throughout the process relationships improved and they extended new and existing working relationships. In addition there was a sense of ownership and pride in the work and the results. People were willing to get involved and “do the work”.

What difference will the resource make? (from not much difference to a lot of difference)

The two project leads agreed that in the bigger picture a score of 7/10 was appropriate. Because there are lots of issues for people with learning difficulties and different priorities and the younger LD population might not realise the relevance of the resource. Individually, with access to resources and training for appropriate personnel the score would be 8/10. This was because individuals who have access to the resource will find that it is useful to finally have a single Scottish resource that is relevant and evidence based. Also the resource will give carer’s confidence to discuss bowel health screening. This confidence will be even higher for people who attend the training. They also felt that if a similar resource was developed they should see “challenges as opportunities and not threats”

Being involved in the project has made a difference to the way I work

Scores of 4 and 5 out of 10 were given for this because: The project has improved skills of delegation, given more confidence in working with external partners and increased maturity in leadership. It showed good facilitation skills and made them think more about inclusion and who needs to have buy-in to a project from the beginning.

Health Advocacy Group evaluation

The Health Advocacy Group was keen to meet and do a post-project evaluation. Four of them met the evaluator in January in Glasgow. They all enjoyed being involved with the project. Their involvement was through their community workers who were both on the Steering Group. With monthly meetings they were involved from August 2011 through to the Launch in September 2012.

High points of being involved were: • • • • • • • • • • • •

It was good to know about the bowel screening getting more people involved met new people the Launch was good enjoyed it, good to be involved knowing about the bowel screening and not being scared people would listen to me felt valued and important involved with different people challenge played a big part in the decisions enjoyed the company and loved the end result

The skills the group brought to the project: • • • • • • • • •

I knew about bowel screening and was able to share my knowledge confident to carry out the test knew about it before the launch knowledge of challenges for everyday practical skills we gave our opinion on pictures, colours and words working on the bowel project was easy due to past experience good at looking at things and making comments good at communication work experience in using pictorial aids

Doing more analysis of being involved in the project the group said the process of developing the resource scored ten out of ten and also said: • • • • • • • • • • • • •

feel great when people tell you you have worked well sticking up for our rights treated with respect getting to meet lots of different people it was easy getting involved, we were listened to and things were changed i.e. put in pictures and words to make it easier was okay about it, happy to talk about bowel screening good being part of it builds confidence valued learnt a lot I felt good about being involved experience letting other people know

They also said they would have • • • • • • •

liked the opportunity to ask questions at the launch to answer questions at the launch or to say something about their involvement to have been part of the play more involved at the launch to have spoken at the launch to have been more involve more attendance at group meetings

Their suggestions if a similar project is run in future would be: • • • • •

involve us at the launch to be involved right at the start of the project take a representative from each group to create a final launch/ role play being part of the bowel screening training from the launch the group want to be involved in producing a play about bowel screening involving more people that will be involved in the persons care

Partnership working: working together with other groups • • • • • • • • •

meet people you have not met before to listen to what they say telling people what I knew about getting more people involved to get the message across to others it’s a good experience to meet other people share views and experiences get ideas to take forward feel important as we are asked to plan, talk and give your direction to the project right people involved

Asked the following

Being involved in the project has made a difference to the resource; my involvement has made a difference The group said their involvement had made a difference with a score of 10. They said it • was a good resource • getting involved is a good experience • getting involved with other people • the pictures in it • the new challenge was good • we just took it and went with it • our attendance at our group four weekly meetings was excellent.

Summary

The group felt their involvement was very important and had made a difference to the resource. They felt valued and respected for their views but would have liked to be involved at the start and involved more in the launch as well as getting involved in the training.

The training

(for full report see Appendix 2) Training was seen as an important and integral part of developing the resource to ensure that it was really useful and people were confident in bowel health screening. “When I was first asked to go on the course and was told it was about bowel cancer I thought “Oh, my God” but when I came out of it I thanked my manager because it was such an interesting course. The amount of information was amazing and it was very informal which was very good”. Participant on the 18/6/12 pilot training. Two pilot training courses were held in June 2012, one on the 11th June in Clydebank and one in Glasgow on the 18th June. The courses were advertised through the working group contacts and were aimed at those who care for people with learning disabilities, both professionals and family member care providers. A further four courses have been run, two in November and two in December 2012. In total 68 people took part in the training; twenty two in the pilot training and forty six in the four training courses in November and December. Actions plans and course evaluations were obtained by everyone giving the project a clear understanding of where the information learned would be cascaded, how effective and enjoyable the training courses had been and if any improvements needed to be made.

In addition they were asked if a follow-up evaluation by an external evaluator could be carried out to reflect on the training. This was done with three participants chosen at random from each training group, a total of 18 telephone interviews. Participants were asked, on reflection, how useful the training was for them. The course took place over one day at the end of which the attendees would: • know the basic facts about bowel cancer: statistics, symptoms, risk factors, prevention and the screening process • have a greater understanding of the barriers people might have when talking about bowel cancer, good bowel health and the screening programme • have increased confidence in talking about good bowel health • have identified clear next steps for using the Good Bowel Health resource to help the people/ person they care for understand the importance of good bowel health and engage with the national screening programme if appropriate The training takes one day and includes a tea and lunch break.

Results of the evaluation immediately after the training

The evaluations given at the end of the training were similar for the pilot training evaluations; in the charts below the responses have been amalgamated. Training participants were asked 5 questions: (please note not all questions were completed by every participant)

1. How would you rate the training overall?

The training was scored as good or excellent by the 65 participants who evaluated this question. No one rated the training poor or average.

2. Please rate the following specific aspects: Poor Average Good Excellent Total Presentation style Ease of understanding Pace of delivery Activities Opportunities to ask questions

2 3 -

25 20 20 23 12

43 47 45 42 55

68 67 67 68 67

4. Has the training given you confidence to pass on information about …… Not at all Yes, a little Yes, a lot Total igns and symptoms of bowel cancer? Risk factors for bowel cancer? Bowel cancer prevention? Bowel cancer screening?

6 6 8 9

62 62 60 59

68 68 68 68

5. After today’s training will you confidently use the Good Bowel Health resource? All training groups responded YES to this question. In addition people added comments, examples are recorded below:

About the training:

People thought the training was very informative, worthwhile, invaluable in assisting understanding of the resource, how to promote it and will encourage uptake of bowel screening. Many people noted that it increased their understanding of the signs and symptoms of bowel cancer and prevention as well as healthy eating around bowel cancer prevention.

Training approach:

People particularly liked the relaxed atmosphere and mix of PowerPoint, group work and one to one. They found the information well presented and easy to understand with loads of information and excellent delivery.

About the trainer/trainers

Someone noted that “it was one of the best courses that I have been on, due to the two ladies. They made us all feel very comfortable as their bubbly nature made it easier to listen and learn. Thank you”. People generally found the facilitators very professional and informative as well as friendly and open. The trainers met the learning styles of the group by using a variety of approaches and this was commented upon by a lot of the participants.

Suggestions for improvements:

One person felt there could be more discussion on prevention and another that a sample bowel screening kit would be most useful as part of the pack for demonstrating and familiarising service users to the kit. Someone also felt it would be useful having short sessions aimed at older people with learning disabilities to raise awareness as not all older people are in receipt of support, therefore might not understand the process.

Post training evaluation

Three people were chosen randomly from each training group and asked for their reflections on the training by the external evaluator. A total of eighteen people shared their views. They were asked to score from 1-10 how useful the training had been for them

Things that people found useful and liked about the training:

People felt they learned a lot from a professional and personal point of view. The information and way it was put across was very good; it raised awareness of what can be a difficult topic and taught people how to deal with a topic that can be embarrassing. Someone said “it was really good seeing the kit and talking through step by step how to use it and now more confident to help clients”. People also enjoyed the training and said everyone participated well. “The training was light hearted but still got the point across about serious issues”. Someone else commented that they “Enjoyed it, it was very relevant to what I am doing and nationally it is something we have not done. From a policy point of view and good practice I needed to go on it and relevant from bowel health point of view”.

About the trainer/trainers

People found the trainers very good and a comment was that “training can be tedious but this was very good - the trainer and the way she spoke and light heartedness of a serious topic”.

Training approach:

Someone said “It was one of the better courses I have been on and kept my attention all the way through. It’s a hard job to keep the training that interesting and she managed it”. This was a common thread with people finding the mixture of styles from presentation, to activities, small group work and one to one approach worked very well. Training was reported as “light hearted and fun even though it’s a serious topic”.

Cascading the information:

It was clear from the comments that people had shared the information with their teams and other colleagues, either by talking and showing or by leaving in staff rooms. In a few cases the DVD had been shown.

Things that were not so useful, missing, or gaps:

Most people said there was nothing missing, there were just a few suggestions; one person wanted a few more ideas for catching samples and another felt the facts and figures section was a bit flat. A couple of people commented on the size of the venue.

Things that could be changed or improved to make it more useful:

People generally thought the trainer was very good/excellent as it was and nothing needed changing. There were a couple of suggestions that more information be available electronically via email or on the web to help people cascade the information either through informal sharing or in-house training.

Summary and recommendations arising from the training evaluation

People clearly rated the training highly both in terms of content, training approach and the knowledge and confidence they acquired. People particularly liked the style and attitude of the trainers which took account of peoples different learning styles. People also felt the subject was well covered and gave them more confidence. There were a few suggestions about things that could be added to the course or further supports under the section immediately above. People also expressed a need for more training both within organisations and “open” training. Most people had shared the information with colleagues, some had already found it useful with clients and a couple of people shared how it had been useful in their personal lives. It is clear that the training should be repeated with most people advising that it is good in its present form with no changes. It is recommended that the training be offered as in-house training with support for train the trainers and “open” access courses for individuals. Further it would be useful if Bowel Cancer UK has the resources to work with colleges to investigate the feasibility of integrating the training into relevant modules or as a stand alone “offer”. A couple of people asked for more training resources to be available on-line to help them cascade the information in their organisations.

The Launch The official launch of the resource was held in September 2012. There were seventy eight attendees made up of care providers, people with learning disabilities, health improvement teams, NHS health Scotland representatives, Scottish Bowel Screening Programme representatives and the third sector. The aim of the day was to introduce the resource and training programmes and the highlight was a performance from the Good Life Group who highlighted some of the challenges people with learning disabilities might have when faced with the bowel screening kit through a short play.

Recommendations arising from the evaluation General

There were some key points arising from the evaluations which it is recommended are incorporated into any project hoping to engage a wide range of stakeholders in a similar project: • involve senior staff from the beginning to ensure management buy-in at the very start of the project • some people felt that senior management failed to appreciate the value of their involvement in the project • • • • • •

the expert group of people with learning disabilities would have liked to be involved: at the very start of the project on the steering/working group i.e. a representative or two feeding back to the Health Advocacy Group more at the launch have opportunities to answer questions, with support, at the launch participate in the play

• • • •

get dates and venues in the diary at the beginning of the project: people liked this as it meant they made an effort to participate as they knew the commitment realistic expectations of peoples time commitments consistency with venues, easy access and parking and or public transport links

• enjoyment: • people are more likely to actively participate if they enjoy the meetings, feel they are focused, wellstructured and run, • participatory and • that they are valued and respected

Training specific

• training enjoyment: keep the training fun, informal but informative. Participants said they enjoyed the training because it was: • fun - it’s a serious topic but the facilitators kept it light hearted • good facilitators, easy style • well-structured and run • fun and informal • mixture of styles with good discussions and activities • a mixture of facts, information and discussions • that they are valued and respected • involve people with learning disabilities in the training

Key learning Overall

• On going evaluation works and helps a project move forward constructively learning and developing as it goes rather than at the end when it’s too late to change. • The project is a good model of how to run a project - steering group members said they had learnt a lot which they were using in their own projects • Working collaboratively and in a participatory approach works • Involve, from the start senior management • Involve from the start the people most affected by the project i.e. the people the project is aimed at. • Student involvement worked well, students felt part of the process, listened to and respected. Their involvement helped cascade the resource to new nurses. • Focus groups to evaluate the resource need clear guidelines and support.

Key learning from the project from the project lead

The main learning is that: • Although the resource feedback is excellent the people that have attended the training day and received a resource are much better equipped to put it into practice. Some feedback from carers has been that although the layout of the resource and language is excellent, carers still had to help their clients with the screening test. It was never thought that the resource could just be handed over to someone with Learning Disabilities and they then left to understand it on their own. • This is why it is so important to be able to offer the training day alongside the resource so that carers will then feel confident about addressing the subject of bowel health and be able to support with the screening kit when appropriate. For this to happen we need additional staff to deliver the training programme and to roll it out across all health boards in Scotland

Next steps

During the post-training evaluation people were asking for more training because it was so useful, engagingly run and they learnt a lot. The following suggestions came from the post -training evaluations: • • • •

offer training to open groups offer training to in-house groups train and or support in-house trainers to cascade the material make supporting material and training material available electronically and/or on the web

If the resource is to be fully utilised it is important that the training be rolled out to support the resource. It is important that carers have the confidence to help people with LD; it was clear from the training evaluations that attending the training increased confidence to help with the bowel screening tests. To ensure that further training can be carried out Bowel Cancer UK needs to seek funding to support the recruitment of staff to carry out a planned programme of both open and in-house training as identified by participants trained in November and December 2012. Finally continue to evaluate training and events associated with the resource on an on-going basis to ensure they continue to meet the needs of participants.

Conclusion

This project has, by the way it has been managed to include a wide range of people with LD, their carers and professionals, been successful in producing a relevant, usable resource that meets the needs of the users. It is evident from feedback that being involved in the project has been worthwhile, inclusive and an exemplar of how similar projects could be run. On-going participatory evaluation has helped create a reflective ethos and improve practice throughout.

Appendix Appendix 1: Examples of methods A

Evaluation spectrum

Moving-on diagram

Appendix 2: The training report

Appendix 1: Example of methods Both these methods are adaptable to different questions and encourage participants to focus on the positives, any issues and solutions so moving a project forward. A. Evaluation spectrum3 : This was modified to provide a focus for people to reflect on the steering group meetings as during the final evaluation session to focus on how being involved in the project had effected their work.

3 4

Moving-on diagram4 : This was modified in a number of ways including “What’s it like being involved in this project?”

Appendix 2: The training (LD =Learning Disabilities)

“When I was first asked to go on the course and was told it was about bowel cancer I thought “Oh, my god” but when I came out of it I thanked my manager because it was such an interesting course. The amount of information was amazing and it was very informal which was very good”. Participant on the 18/6/12 pilot training. Two pilot training courses were held in June 2012, one on the 11th June in Clydebank and one in Glasgow on the 18th June. The courses were advertised through the working group contacts and were aimed at those who care for people with learning disabilities both professionals and family member care providers A further four course have been run, two in November and two in December 2012. In total 68 people took part in the training; 22 in the pilot training and 46 in the four training courses in November and December. The course took place over one day at the end of which the attendees would: • know the basic facts about bowel cancer: • statistics, symptoms, risk factors, prevention and the screening process • have a greater understanding of the barriers people might have when talking about bowel cancer, good bowel health and the screening programme • have increased confidence in talking about good bowel health • have identified clear next steps for using the Good Bowel Health resource to help the people/ person they care for understand the importance of good bowel health and engage with the national screening programme if appropriate Twenty-two attendees took part in the pilot training sessions, actions plans and course evaluations were obtained by everyone giving the project a clear understanding of where the information learnt would be cascaded and how effective and enjoyable the training courses had been and if any improvements needed to be made. The training ran from 1000 – 1500with a lunch and tea break. At the end of each training session participants were asked to evaluate the training and prepare an action plan which Bowel Cancer UK staff would follow-up on after three to six months. In addition they were asked if a follow-up evaluation by an external evaluator could be carried out to reflect on the training. This was done with three participants chosen at random from each training group, a total of 18 telephone interviews. Participants were asked, on reflection, how useful the raining was for them.

Results of the evaluation immediately after the training Training participants were asked 5 questions:

1. How would you rate the training overall?

The training was scored as good or excellent by the 65 participants who evaluated this question. No one rated the training poor or average.

2. Please rate the following specific aspects: Poor

Average

Good

Excellent

CPT

Presentation style

Ease of understanding Pace of delivery Activities Opportunities to ask questions

1 1 -

1 2 -

2 3 -

6 5 7 3

14 15 16 9

20 20 23 12

15 15 14 18

32 30 28 37

47 45 42 55

P= pilot training

T= Training

CP/T = Combined data from pilot and training

3. Do you now feel confident to discuss good bowel health with the person/s you support? All training groups responded YES to this question. One person didn’t tick yes but wrote “I need a bit more training but getting there”. Has the training given you confidence to pass on information about …… Not at all Signs and symptoms of bowel cancer? Risk factors for bowel cancer? Bowel cancer prevention? Bowel cancer screening? P= pilot training

Yes, a little

Yes, a lot

CPT

T= Training

CP/T = Combined data from pilot and training

5. After today’s training will you confidently use the good Bowel Health resource? All training groups responded YES to this question. In addition people added comments, examples are recorded below: About the training: pilot comments in green • I feel that I have more knowledge and a better understanding of the signs and symptoms of bowel cancer and the preventions • good information well put over • very interesting and informative • excellent well-presented course • good to know there is a follow-up programme. • good training, have learnt a lot today • informative on bowel cancer signs, symptoms and key messages was invaluable in assisting understanding of the resource and how to promote it • fantastic resource which I feel confident to use with clients to promote and encourage uptake of bowel screening • very good course will be good for other people to attend • very easy to take in, not too long a day, good location, close to workplace • good training, have learnt a lot today and will take this away with me today – excellent • good training I found it useful for my personal health and also for some of my older service users. • excellent, informative and very engaging • thanks, very informative and interesting. I feel I have learnt new knowledge which I can now share and feel confident to do so • thoroughly enjoyed the bowel cancer screening training which provided lots of information for me and information that I will pass onto others I support and family • good idea to give out packs and contact details • informative and interesting day • very worthwhile and informative course Training approach: • liked the relaxed atmosphere and mix of power point, group work and one to one • good light-hearted training • informative, thought provoking yet relaxed class • I found the presentation easy to understand with loads of really useful information. • excellent delivery and presentation of information About the trainer/trainers • the training was one of the best courses that I have been on, due to the two ladies. They made us all feel very comfortable as their bubbly nature made it easier to listen and learn. Thank you • I found the facilitators very professional and informative • Claire and Emma very good and friendly • Claire D was an excellent trainer – her pitch, tone and style lend themselves to an easy delivery. All learning styles met – she encouraged interactions within the group. Learning outcomes were met. • the trainer was friendly and easy to understand • very good trainer open and friendly

Suggestions for improvements: • could be more discussion on prevention • feel would benefit having short sessions aimed at older people with learning disabilities to raise awareness as not all older people are in receipt of support, therefore might not understand the process • I think there could be more support and strategies for screening for people with learning disabilities. • sample bowel screening kit would be most useful as part of the pack for demonstrating and familiarising service users to the kit

Summary of evaluations immediately after the training:

As can be seen above the training was very well received and rated highly both in terms of presentation and content. People particularly liked the style and attitude of the trainers which took account of peoples different learning styles. People also felt the subject was well covered and gave them more confidence. There were a few suggestions about things that could be added to the course or further supports under the section immediately above.

Results of the telephone evaluation carried out in January/February after all the training was completed Three people were chosen randomly from each training group and asked for their reflections on the training. A total of eighteen people shared their views. They were asked to score from 1-10 how useful the training had been for them

Things that people found useful and liked about the training:

• making people more aware of it • didn’t know what to expect, but got a lot of information and presented in a way I understood • I thought the way everyone participated and the training was very good. It was light hearted but still got the point across about serious issues • I went away feeling I had learnt a lot and the pack was very good • enjoyed the presentation and found it very good, after that I went to have a colonoscopy and endoscopy, they didn’t find anything. I told my brother in Australia about it and he went and had a test. • I thought the course was marvellous • when I was first asked to go on the course and was told it was about bowel cancer I though “Oh, my god” but when I came out of it I thanked my manager because it was such an interesting course. The amount of information was amazing and it was very informal which was very good • cards about indicators of bowel cancer useful to start discussions • the discussion in groups was useful • helped me to help my son, who has LD • thoroughly enjoyed the training • didn’t realise how serious it was to do the test • clients were really embarrassed, it taught me how to talk about it without being embarrassed, it taught you it was very important • gave me more confidence and I was able to approach clients. • enjoyed the training, using it and forming a steering group to do more training, making up training packs to deliver training from March/April. Got the packs all ready and hope to train in excess of 30 people in East Renfrewshire (paid position) • showed us how to use the tester kit which was very useful • people got a better knowledge and understanding of what you put into your body and how it affects you • great information, stuff I hadn’t known before • good training • quite interesting – learnt new things • enjoyed it, it was very relevant to what I am doing and nationally it is something we have not done. From a policy point of view and good practice I needed to go on it and relevant from bowel health point of view • relevant • enjoyed it, there were things I didn’t know about personal and professional • really good, very informative. It was really good how it covered the biology side of it, talking about the bowels and preventable stuff and the workshops • very informative course highlighted the importance very well of the subject area. The prevention side was good • really beneficial, because I am doing something linked to it for one of my degree modules in a related subject • useful for working with people with LD • enjoyed the training, very informative. I knew some of it through public information but the training highlighted areas I didn’t know • some clients had had kits but found it confusing, the training met my needs in helping • enjoyed it, knew something about the resource as I had been involved in the early stages but didn’t manage to make the steering group but had all the emails so kind of kept in touch and went to the launch • It’s a really valuable resource, good for people to find out more and know the history of the project and bowel cancer background

• the training worked well but top heavy with Cosgrove Care, it didn’t affect the quality of the training but not good in terms of spreading the message • the awareness of how serious it can be and the ins and outs of it • enjoyed it, it was very good, interesting – how they do the samples, I learnt a lot • enjoyed it, really good seeing the kit and talked through step by step how to use it now more confident to help clients. Much more armed to help clients • I have already started telling them what to expect, have also started a conversation about health issues, cancer, like breast and testicular • well presented and informative and opened up new conversations on cancer and death. • other colleagues have been on the course at another venue, all thought it was good. • the venue was good; the overall experience was well worth while so would like to get more staff on it. (cosgrove care) • very good because I didn’t realize a lot about bowel cancer and it highlighted a lot • surprised with some of the foods that don’t help and lead to cancer. With service users it helps to provide healthy living for clients About the trainer/trainers • training can be tedious but this was very good – the trainer and the way she spoke and light heartedness of a serious topic • trainers were very good; they put it very clearly and answered any questions that were asked • very good trainers who were open • really enjoyed the training and the trainers • trainers were approachable and a good mixture of approaches • good day, trainer very nice and explained everything Training approach: • it was one of the better courses I have been on and kept my attention all the way through. It’s a hard job to keep the training that interesting and she managed it • enjoyed it, it was well presented, easy to understand and for a delicate subject easy to discuss. That was partly the trainers and partly the group who all worked with LD • better than other training • kept your attention all day • varied training with a good balance in training styles in terms of group work, power point and discussion • interesting with visual materials • training approach was good • training was light hearted and fun even though’ it’s a serious topic • good balance in training style and good handouts • very informal, chatty, broken up mixture of serious; group sessions were useful to learn from others. • length of training was very good • the way the training was presented, not too much information and we were involved • the way the trainer presented the courses was good and she made it fun; so enjoyable that the time flew by • good venue • good presentation • I liked the way it was presented, informal, laid back and more involved. Very open-minded people on the course • all the questions were answered on the day • training style was good, informal, relaxed and interesting exercises

Cascading the information:

• put one of the packs in the office and it has been used and talked about • I left the information on a table and people have looked though it • made the pack available to staff in the office. It’s very helpful and there is more interest in the training in my organisation • I have passed the information onto the team of 12 colleagues – the DVD has been used • I shared it at work, talked about the kit, how to use it and watched the DVD. The DVD didn’t help but the staff being able to talk about it was better • discussed with family and shared with other students (student nurse) • I have not used it as such but have shared in the organisation and want to formally develop policies to support staff • shared with colleagues in department • I have mentioned the training to other people • we have discussed the training with other people who hadn’t been • I used the kit with a client before the training, the training helped update me • recommended it to line manager and would like the team to go on it • showed the information to people • passed on the information to others in my class (student nurse) • had a discussion about it at work, team meeting and with clients • passed the information on and showed it to staff on the project. We will try to get more people on the course • should be more training to capture a wider audience, should be a priority from a health perspective • passed on the information and showed people in team and how to do it with a test kit they had. • highly recommend the training, as a team leader would recommend others or an organisational training • enjoyed the training it was very informative and lots of stuff to take back to work. • have shown the materials to other people including the training officer (community life styles). Might be interested in more training

Things that were not so useful, missing, or gaps: • • • • •

most people said there was nothing missing, just four people made comments: some tricks for catching the sample, more suggestions one section was a bit flat, I think it was the facts and figures, it didn’t impact on me room was a bit tight, but not their fault venue was quite small (Drumchapel)

Things that could be changed or improved to make it more useful: • • • • •

don’t need to change anything pleased with training nothing needs changing spot on, nothing can’t think of anything because it works as it is now the only thing is, we were shown a brochure; the picture was of you speaking to a client regarding the bowel screening test and the client speaking to you. The client’s page should be in front of the workers page • it would be a help if bowel cancer UK could supply a training pack or webpage, a site where you could download material and general pointers / hints on training packs. The trainers did say they could be contacted but organisational things keep getting in the way of finding time. My priority is to get more help with the training

• handouts – a few more that would help us to train within an organisation i.e. power point, could be sent electronically or put on a web page • excellent in the way it was presented nothing to change One person said they didn’t get a pack neither did the whole group – this comment passed onto Project Manager.

Overall summary and recommendations arising from the training evaluation People clearly rated the training highly both in terms of content, training approach and the knowledge and confidence they acquired. People also expressed a need for more training both within organisations and “open” training. Most people had shared the information with colleagues, some had already found it useful with clients and a couple of people shared how it had been useful in their personal lives. It is clear that the training should be repeated with most people advising that it is good in its present form with no changes. It is recommended that the training be offered as in-house training with support for train the trainers and “open” access courses for individuals. Further it would be useful if Bowel Cancer UK has the resources to work with colleges to investigate the feasibility of integrating the training into relevant modules or as a stand alone “offer”. A couple of people in the reflective evaluation done several month after the training asked for more training resources to be available on-line to help them cascade the information in their organisations.