lime art - transitions evaluation report 2011

EVALUATION REPORT; ‘Transitions’www.limeart.org

arts in health through innovation and creativity

EVALUATION REPORT by Kim Wiltshire

‘Transitions’A creative project working with young people with Cystic Fibrosis to design a booklet, inserts and DVD film (with practical information, personal experiences, a drama/film, recipies and more) to be given to all young people leading up to their transfer from paediatric services to the Manchester Adult CF Centre.

supported by BBC Children in Need and the Manchester Adult CF Centre

Contents

Glossary of Abbreviations:

CF: Cystic Fibrosis

YPWCF: young person with CF

CMFT: Central Manchester University Hospitals

NHS Foundation Trust

HK: Helen Kitchen, Lime arts project manager

JS: Jacqui Symons, visual artist/graphic designer

KW: Kim Wiltshire, creative writer

MH: Mark Haig, filmmaker

MACFC: Manchester Adult Cystic Fibrosis Centre

RMCH: Royal Manchester Children’s Hospital

Introduction to the project

Introduction to the evaluation

Evaluation:

Participant Involvement

Project Aims

Addressing Issues

Creating an awareness of CF and Life Choices

Reducing a sense of Isolation

The Creative Process

Healthcare Professional response

Conclusion and Recommendations

Appendices:Appendix 1 – Questionnaire for staff and artistsAppendix 2 – Questionnaire for participantsAppendix 3 – Questionnaire for staff at LaunchAppendix 4 – Budget breakdownAppendix 5 – Participant LogAppendix 6 – Timeline summary

project partners:MACFC, CMFT, RMCH and regional paediatric CF centres in the northwest

[email protected]@limeart.orgwww.limeart.org

August 2011



Introduction to the Project

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The Cystic Fibrosis Transitions Art Project arose out of an established partnership between Lime Art and the Manchester Adult Cystic Fibrosis Centre (MACFC) (based at Wythenshawe Hospital, Uni-versity Hospital of South Manchester NHS Founda-tion Trust (UHSM)), a partnership that has been in existence since 1995.

Cystic Fibrosis (CF) is an inherited, chronic multi-sys-tem, life limiting disease with complex, wide rang-ing disorders. Living with CF is difficult and chal-lenging, involving a demanding, time consuming, intrusive daily treatment schedule. This can make it difficult for people with the condition to lead a ‘normal’ daily life, however this level of treatment can be necessary to slow down deterioration that shortens life expectancy.

Adolescence is a particularly vulnerable time of life for those with CF, as alongside the usual issues adolescence presents for young people making the transition to adulthood, those with CF also have to face transferring from paediatric to adult healthcare services, with possible changes in clini-cal regimes and leaving behind staff they have known their entire lives and so experiencing a sense of loss.

Because of cross infection issues, people with CF cannot mix with others with the same condition, and this can add to a sense of isolation and a lack of peer support. When in hospital as an inpatient, a strict segregation policy is adhered to, ensuring patients do not meet on the ward and become at risk of cross-infection. 1

Lime became aware (through discussions with the multidisciplinary team at MACFC) that MACFC were working collaboratively with colleagues from across the Northwest to improve the experience of transition for young people who would eventu-ally transfer to their adult centre.2 Surveys carried out by the CF adolescent support worker in 2006

of young CF patients at Booth Hall Hospital, Man-chester identified fears about the unknown practi-calities, trusting a new set of staff, and moving on from the known paediatric team. Based on this ini-tial feedback from young people, and working in partnership with paediatric nurses, staff at MACFC identified that there was a need for some sort of flexible pack for young people about to transfer from the Children’s hospital they have known all their lives to a new centre that could possibly be many miles from their home,3 with new staff and possibly new regimes. MACFC and Helen Kitchen (HK) from Lime began discussing in 2007 the idea for a pack and a DVD film (based on previous Lime packs around substance/alcohol misuse)4 that would be creatively led by young people with CF. This would be an ambitious project, creatively, process-wise and in the final output, and the pack would have around a five year shelf life. HK ap-plied for BBC Children in Need funding (submitted

1 For more information on CF go to: http://www.cftrust.org.uk/aboutcf/whatiscf/ last accessed July 20112 Expertise is shared at the annual CF transition events, attended by paediatric and adult staff from across the northwest.3 MACFC has patients from across the whole of the North West transfer to it as adults.4 Losing It (Manchester: Lime, 2008) and The Amazing Doctor Sober (Manchester: Lime, 2009)

completed Transitions Pack: folder, booklet, inserts, DVD with virtual tour of MACFC, interviews with older people with CF and film/drama



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Introduction to the Project

Jan 2009), supported by Lime colleagues and the steering group of CF healthcare professionals that was set up to support the project.

The BBC Children in Need bid was successful (noti-fied April 2009), and HK commissioned a writer (Kim Wiltshire – KW) and a film-maker (Mark Haig – MH) who had worked together before on the previous Lime DVD/info packs. Later in the process, visual artist and graphic designer Jacqui Symons (JS) was commissioned to design the booklet, inserts and folder.

Extensive project planning took place before the artists could begin working with young people with CF, and because of the heavy workload of NHS staff and needing to adhere to NHS protocols this took a considerable amount of time (May to October 2009).

Making links with paediatric CF teams and extending the Steering Group membership was one of the first steps. This project aimed to not only work with young people in Man-chester, but also those from the MACFC pa-tient catchment areas across the Northwest (including Preston, Stepping Hill, Burnley, Blackburn, Blackpool, Lancaster, Wigan and Macclesfield). Although Lime Art has had a long partnership delivering creative projects with the MACFC, they had not worked with CF paediatric teams prior to this project, so this necessarily involved identifying, working with and building trust with a new set of staff and NHS Trusts, who were all invited to nominate a CF specialist representative to join the project Steering Group.

The steering group worked closely with HK to iden-tify all young people aged 13 to 18 from the north-west who could potentially get involved in the project. Parental permission was necessary before the artists could contact/work with the young peo-ple. Letters explaining the project (with an opt out clause) were sent to parents by the NHS Trusts. In-cluded with the letter was an envelope addressed to the named young person with a postcard invi-tation ‘from the artists’ (designed by Lime Art).

As well as obtaining CRB checks through Central Manchester University Hospitals NHS Foundation Trust (CMFT), all three artists received Child Protec-tion and specialist CF training and orientation be-fore working with young people. The artists spent approx 1 full day with specialist CF staff at the MACFC and/or Royal Manchester Children’s Hos-pital (RMCH) in order to gain a better understand-ing of CF. The training ensured artists were aware of the health, social and emotional issues related to CF and so understood the reasons behind hav-ing to run individual one to one workshops with young people with CF, due to cross infection is-sues. This training also set in place protocols for art-ists working closely with young people on a one to one basis, where vulnerable young people might disclose information about themselves, their con-dition and/or their family situation.

MH and KW began to set up workshops with indi-vidual participants in November 2009. The aim was to make the film over the summer of 2010. This is when JS came on board as graphic designer and began to run visual art workshops with young peo-ple. The film was edited and approved by January 2011, and the packs were launched in May 2011. The packs were also given out at a presentation on the completed project at the 9th annual Man-chester Cystic Fibrosis Transition Event in July 2011, attended by over 50 paediatric and adult CF staff from across the northwest.



Introduction to this evaluation

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Because the nature of the workshops was so individual and often quite personal, the creative project team did not consider it appropriate to collect formal evaluation (through the use of questionnaires for example), as work with the young participants was often sporadic and quite spontaneous. Due to the nature of the condition it was impossible to know how many times the artists would meet up with the participant – it could be once, it could be many times, or all contact could be via email and text. It became evident early on that a set evaluation method from participants whilst in hospital would not be viable either, as due to the heavy workload of NHS staff it was not possible to set up a formal method of evaluation for in-patients. However, artists were required to keep an artist diary and participant log, which all did. Therefore this evaluation relies on mainly anecdotal evidence from artists, staff and participants, as well as some more formal evaluation carried out through questionnaires and interviews once the pack was completed. We recommend that this evaluation be read alongside the evaluation film CF Transitions: An Evaluation. 5

At the end of this evaluation report there are appendices that include examples of the questionnaires used to collect information for this evaluation.6 There is also an appendix detailing the budget and an appendix detailing participation.

The sections of this report will follow the main themes of the questionnaires and will also address the main outputs of the BBC Children in Need funding bid. At the end there will be a series of recommendations for future CF/participation projects in the conclusion.

‘Just wanted to say how much I love the pack! It’s amazing, I never imagined it looking so brilliant! I love the whole thing, the design of it and lay out etc. It’s a really great achievement and I’m glad to have been a small part of that. Seriously, I’m so impressed. Well done!’ 7

5 3 participants answered formal questionnaires, 2 members of staff at MACFC, 1 specialist CF nurse at Royal Manchester Children’s Hospital, CMFT, the project manager and all three artists. At the launch of the pack, questionnaires were also filled in by staff who attended – around 40 health professionals in total attended this event, 32 of whom completed questionnaires, the results of which are discussed in the Healthcare professional responses section of this evaluation.6 Appendices 1, 2 and 37 Email from SV, a young person with CF who participated, 3 June 2011



Participant Involvement Evaluation Report

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Working creatively with young people who have CF presents several challenges. Firstly, unlike the vast majority of other creative arts and healthcare projects, artists cannot work with groups of participants, because the condition prevents that due to the segregation policies mentioned above; this means that all ‘workshops’ have to be conducted on a one-to-one basis. This throws up issues for ways artists work with participants (see more on this below) as well as making continuity both in output and creative activity quite difficult. Another challenge is that whilst young people with CF are aware of their condition on a daily basis, it is not what defines them as young people, and very often they, understandably, do not want to be reminded of their condition when not in hospital

or in clinic. Finally, the unpredictable nature of the condition means that workshops could often be cancelled at very short notice (as the artist arrived at the venue occasionally) and this proved difficult emotionally for artists, as well as time-consuming, worrying and frustrating.

Initial ideas around methods and strategies for the one to one workshops involved both artists (MH and KW) visiting participants at home, in clinics, in hospital and outside (for example at the Lime studios or in a coffee shop). It became quickly apparent that clinics were not a suitable place for creative workshops, as patients wanted to be in and out as quickly as possible. Whilst a few home visits were carried out, this also proved



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unsatisfactory, as families felt the need to make sure the house was ‘presentable’ to ‘guests’ (participant comment) whilst at the same time MH and KW felt unable to make any sort of creative ‘mess’ whilst working in someone’s lounge or kitchen. However, some participants reported that they appreciated an initial home visit from an artist because it meant they got to meet the artist in a comfortable environment and therefore felt more confident in meeting up elsewhere for subsequent creative workshops. The Lime studios proved a very popular venue with some of the more engaged participants, as they reported feeling creative in a creative space.

KW and MH worked directly with a total of 20 young people with CF, and JS engaged with an additional 2 young people and their parents (2) as well as 1 older CF participant and several participants who had already worked with MH and KW. MH and KW also worked with 5 adults with CF and 4 family members of participants with CF. This totals 34 people in all who inputted into the project creatively. The creative team felt it was important, due to the isolation issues for YPWCF, that siblings, partners and parents were encouraged to join in, even if it was just a chat whilst a creative activity was happening with the young person (although we did not count having a chat as participation as such and so these do not count towards the figures). This underlined the importance of transition for those around the young person as well as the young people themselves, as the process can be difficult for parents who have been used to dealing with their child’s treatment up to the age of eighteen (or younger if transferred at an earlier age). Parents then find that the adult team, whilst still including them if the young person wishes so, direct treatment decisions to the young person with CF.

The issue of isolation and the lack of creative group dynamic was something the creative team were constantly aware of, and there was an attempt to virtually engage young people through an advertised MySpace page (discussed in more detail below), which an additional 17 people accessed, however we cannot confirm whether these were young people with CF, whether they were young people we had already engaged with or whether there were any repeat visits.

Most participants reported enjoying sessions to the artists, and seemed keen to continue work, although there were a few young people who did not engage again after the first session. Often parents were more enthusiastic about the project than the young person, and this was especially so in participants under 14 years of age. Participants for whom transfer to the adult unit was a distant issue did not engage fully unless they had a real interest in the creative aspects. Participants for whom transfer was about to happen engaged much more fully, recognizing that their younger selves might not have been as keen, and this added awareness to the creative output.

booklet page




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Artists would either contact young people directly through mobile phone calls/texts or via email (after parental consent obtained), or, if they were under 14, via parents. This meant that artists were reliant on participants being responsive to the idea of meeting up on an individual basis, something that could be seen as quite daunting for a young person of any age. To ensure participation, artists had to be very proactive in contacting the young people who expressed interest. This is again unusual for artists, who usually work with a specific group that has already been set up by the project manager/creative lead, at a specific venue and a specific time. Of course, on contracting all artists were aware of the unusual nature of the creative workshops, and they were assisted as much as possible by the CF specialist nurses, however much

more time than was expected was spent following up potential participants, trying to engage through initial meetings and consistent ‘chasing’ up of creative work and scheduled meets. To this end, a dedicated project email address was set up for young people to contact, however by the end of the project participants were often contacting artists’ individual emails rather than the Transitions email address (which was, however, maintained for the duration of the project). Whilst this was convenient for artists and participants, it also led to a much more personal relationship, with some participants who were very involved often

texting artists with small personal triumphs (e.g. exam results) or texting when upset or angry about something. This highlights the difficult professional line artists had to tread in terms of the level of access they allowed participants to their own lives, and this was also evident in the nature of the one to one workshops, where advice on other aspects of their lives was sought, some disclosure about worries or concerns over treatment or the condition, and even help with homework or boyfriend issues.

Staff at the Royal Manchester Children’s Hospital (RMCH), which is a regional and shared-care centre (including Manchester, Preston, Stepping Hill, Burnley, Blackburn, Blackpool and Lancaster), tried to set up a system whereby they would phone artists (KW as main point of contact) if there were potential participants on a hospital ward, however NHS staff workload often meant this wasn’t possible. KW therefore had to telephone staff on a regular basis to see if any patients in the target age range were in hospital.

‘Sessions were great and it was a luxury to work on a one to one basis, though they did lack a certain dynamic you get from a group working together. I found sessions tended to last longer and be much more relaxed without necessarily completing more work than you would usually! I also felt that more sessions were needed with each person as you had to explain concepts and look at inspiration, then move onto developing ideas before actually creating pages with each new young person’.8

8 Jacqui Symons, Artists Diary Extract

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The MySpace account (called CF Transitions) was set up to enable ease of access to the artists, however there were only ever 17 followers or viewers to the account9 and young people who were participants who did use social networking sites reported that they rarely used MySpace any more, because it had fallen out of fashion.

Suggestions were made to create a facebook account, however it was felt that as a personal profile needed to be set up for this, difficulties in maintaining a professional distance for the artists could arise. However, a participant did point out that keeping contact personal, via mobile phone and email was perhaps the best option because some people with CF would not want to join, for example, a CF facebook group, because they may not want to have to make their CF public to get involved in the project.

‘I spent a large amount of time in RMCH today, giving out journals and explaining the project, trying to get 6 patients inspired and ready to work. They all seem enthusiastic, but not much work has been done since I last visited, and also they’re very bored in the hospital, and it is a case of whether or not they keep the work up when they get home’.10

One of the objectives of the project was to set up a participant-led art direction team of 4-5 members and this was successful. The team knew of each other and although they worked separately and did not keep in contact with each other virtually (not one of the objectives but a nice idea) the group responded to reported ideas from each

other and took their responsibilities seriously (e.g. script editing, writing sections of the booklet, design consultation). This group ended up being the most consistent participants, each of whom had a vested interest in the project in that they were about to transfer to MACFC in the near future. It therefore made sense that it was this group who were most keen to input into the project as the experience of transition was more relevant and immediate for them.

Participants aged around 13 to 14 did not usually want to talk about issues relating to transferring to the adult cystic fibrosis centre and issues around growing older with CF, mainly because it did not seem to interest them, as other adolescent concerns were more important. Although they enjoyed the creative workshops, this age group found it more difficult to relate to something that would be happening to them in four or five years time, however some of them did disclose information about their concerns around growing older with CF and did contribute ideas for the script and the pack.

This was not one of our stated targets, but as a point of interest it is worth noting that it was more difficult than anticipated to interest young men in the project (7 males out of a total of 22 YPWCF participants). The creative team were disappointed that more young men did not participate, however work with male parents and male partners, gave a better gender-balanced perspective.

All in all, participation levels were around what was expected, and although lessons were learned about the way to engage young people with CF in creative sessions,11 the process was satisfactory to both artists, staff and, most importantly, the young people.

9An introductory video featuring Kim Wiltshire and Mark Haig was uploaded onto the account prior to the project commencing, and a blog was set up but there was very little traffic on this site. 10 Kim Wiltshire, Artist Diary Extract11 See Recomendations at the end of this document



Project Aims Evaluation Report

The first aim was the main aim of the project as it encompasses both the creative lead and the main output or product.

The three commissioned artists on this project have a great deal of experience of working with young people and they are highly skilled in their own artistic practice – creative writing, film making and graphic design/illustration. They took a truly collaborative approach which ensured quality of involvement for participants and quality of final ‘product’. Artists ensured participants were involved in every aspect of the creative process, and whilst healthcare professionals on the steering group were also involved in final approval (the pack is, after all, going to be given out by them) the young participants were encouraged to be as creative and innovative with both the film and the pack as they wanted to be. This is the standard way artists at Lime work, facilitating the creative ideas of the young participants rather than using a top down approach on participants’ creativity. The aim was always that every aspect of the pack would be informed and, where possible, created by young people with CF, and this aim was accomplished. Initially, the film was conceived as animation, however discussion with participants informed the artists that young people around the 14-18 age range (the group who will be watching and using the pack) would find this too childish or young for them, and it was suggested the film should show life as young people with CF found it, with more of a Skins/Hollyoaks/soap feel to it – one that tackled issues but also had humour. KW interviewed and met with 14 young people to discuss ideas for the script, sometimes only once but for several hours, others several

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times. All the young people were made fully aware of the reasons behind the film and many openly discussed their views on adolescence and CF. Many parents also contributed views during these sessions, especially when visiting their child in hospital. During these sessions, parents often mentioned how frustrating they found it when their child encountered people, often on a daily basis, who knew very little or had outdated information on CF.

KW decided that she wanted as much approval of the script as possible from young people and healthcare professionals, as it was important that there was a sense of truth about the drama, that it was respectful whilst having humour. Four of the 14 young people worked in-depth with KW, coming back with ideas and suggestions and acting as script editors. Every scenario and idea in the film came from a young person with CF, and these were woven together to create the dual-protagonist narrative of the film. MH and KW decided to work with a POV (point of view) type camera shot throughout the film, partly because some initial concerns were raised by the steering group, very early on, about the ethics around a young participant with CF appearing in the film, but also because the film had to engage with the young CF viewer, and a POV type style (similar to the Channel 4 comedy series Peep Show) could place the viewer in an ‘everyperson’ position.

Because of cross-infection issues, only one person with CF could work on the film at any one time, and in the end only one participant wanted to be this involved, choosing to act one of the protagonist parts.

There were three main aims to this project:

to create a transition pack for young people with CF, led by young people with CF to help make their • experience of transition a more positive one

to encourage young people with CF to engage with creative workshops, expressing their issues and • concerns around growing older with CF and improving their awareness of life choices

to foster a greater sense of CF community, reducing the sense of isolation young people with CF • experience because they cannot mix with each other



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MH also taught animation and film techniques to participants ahead of actually making the film in the summer of 2010, much of which were later used in the film. The young people also suggested the virtual tour of the MACFC and the interviews with older people who have CF.

KW and JS followed the same technique for the creation of the booklet and folder/inserts. Using the book 1000 Journals12 as a creative springboard, young people worked with both artists to create, edit and design all aspects of the pack.

‘As I had to work with the YP individually, I felt that a journal style pack would be great, allowing each page to be individual and different, without relying on a ‘house-style’ throughout the book. This also allowed much more hands-on creativity without too much heavy use of technology, computers and equipment, making it more accessible and allowing each person to continue / develop work outside of our sessions’.13

The script, film and pack were approved at appropriate stages of the project by the steering group of specialist CF healthcare professionals, but the creative team ensured that the young people’s suggestions and creative ideas were at the forefront of the process throughout.

In terms of engaging with the creative workshops and the final output product, young CF participants reported that they saw their input as:

Writing the introduction to the booklet• Offering advice and support on the content of • the bookletOffering advice and support on the design of • the bookletCollaboration• Giving insight into what it is like to live with CF• Helping KW with the script• Working with MH to learn how to use the • cameraHaving fun, learning something different, never • had the opportunity to do before

Healthcare professionals felt that: Whilst many young people did engage, it was • mostly whilst they were in-patients, and mostly because they were boredThe young people who were around transfer • age who engaged found it really useful being involvedA really brilliant pack for young people has • been createdWithout young people’s involvement, there is no • way MACFC would have produced anything that looked remotely like that pack – we had nothing for young people before thisThe pack is something that has been needed • for quite a while

The artists felt that:The young people working on the design got a • lot from the processWorking in hospital because participants were • ‘bored’ is not necessarily a negative thingIt was more difficult working on a one to one, • individual basis with young people with CF but that that the project achieved the aim of the whole process, i.e. being led by young peopleThe art direction team idea worked well, as it • gave an opportunity to be more consistently involved to those who had more of a creative interest in the project

12 Some Guy, the 1000 Journals Project (San Francisco: Chronicle Books, 2007)13 Jacqui Symons, Artist Diary Extract




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14 Participant response to KW


That certain young people who were interested in the arts would be the ones to engage most fully is clear, however workshops within the hospital worked well also, and helped young people have input into a product that would be aimed at them a few years down the line. The most effective form of engagement, as mentioned in the section above, was in the hospitals, but participants did report that the flexibility of venues was important to them.

Staff at the children’s hospital (RMCH) did not feel that the final objective had been met, and felt the young people did not have any greater sense of the CF community. However, artists noted that some young participants accessed the CF Trust’s website for the first time during this project, as research for an activity left for them by KW. Staff at MACFC suggested that the project enabled participants to engage with CF in a way that didn’t feel medical, and participant responses echoed this.

‘I think [the sense of a CF community is] a really important part of it, because of all those involved in this one thing gives a sense of community which is important – the illness doesn’t define your personality, but it does gives a bonding feeling. People without it struggle to grasp what it must be like – other people with CF completely get that’.14

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Addressing Issues Evaluation Report

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The main aim of the pack is to address issues around CF and the transition not just to the adult centre but also into adulthood that young people with CF may have. Initial work by the artists centred on this fact-finding with young people, and these interviews formed the basis not only for the script for the DVD, but also creative ideas, such as the interviews with older patients.15 This means that the young people involved in the project not only created the basic scenarios from which the DVD script was made up of, but also decided on the type of information they would like to see in the pack, the issues they face and the manner in which they would like to see these addressed. For example, many young people felt that much work around CF lacked humour, and that they would like to see something that had a little more comedy and fun about it, which the artists responded to.

Staff from both the Royal Manchester Children’s Hospital and MACFC believe that the pack addresses the main issues young people have about transition and CF, and that there is a good

balance between what staff thought should be included and what young people wanted included – for more on healthcare professionals’ reaction to the completed Transitions Pack, see the section below Healthcare Professional Response.

Participants thought on the whole that the pack addresses most issues. One participant thought the pack had been a little constrained by NHS staff involvement (in terms of what staff thought was and was not acceptable to put into the pack) but the general consensus is summed up by this participant response:

‘On the whole I believe it fulfills the expectations of highlighting the concerns that young people with CF have. By working in unison with myself and other CF patients the booklet offers insight from a genuine perspective and as such is reflective of many people who suffer with Cystic Fibrosis’.16

Artists also felt that the pack fulfilled its objective in addressing concerns young people with CF might have in this transition period, although they also noted some of the tensions between what young people suggested they wanted in the pack and what the steering group thought was appropriate (see more on this in Recommendations, below). Artists also felt that whilst having an overview of the issues around CF, what was helpful was not being ‘expert’ in the condition, which allowed artists to allow the participants to lead the process in all aspects.

15 As young people with CF were fully aware of the unpredictable nature of their condition, but wanted to hear positive and life affirming stories from adults with CF.16 Participant response to KW

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Through the creative process it became clear that young people felt that there was a need to have something they could show to friends/fam-ily/partners that explained some of the issues they faced. As mentioned above, the creative process involved some young people visiting the CF Trust website for the first time, and some young people faced certain fears around CF through talking to the artists. Two participants told KW (unsolicited) that they were scared about a possible trans-plant issues and about being so poorly (whilst in hospital). Even though they became quite upset during these discussions, they made it clear that they wanted to speak about their fears and issues because they felt they had no one to talk to. This information was passed on to healthcare profes-sionals after the sessions, but the fact that these participants felt comfortable enough to discuss these issues testifies to the relationships between participants and artists.

Through discussion with participants of ideas and experiences from other young people, collated during one to one sessions, it became clear to art-ists that having the space to allow young people to explore and discuss issues and life choices was as, if not more, important to some young people than engaging in the creative process. This was where the importance of the training and the protocols for the artists became clear, with artists knowing where to flag up issues with healthcare professionals and how to do so. This mix of inter-est from participants, partly creative and partly an interest in CF issues, was vital to the creation of the pack. However, it was also at times emotionally difficult for artists if they were working alone with a young person.

Members of the art direction team reported that they felt that they did have increased awareness due to being part of this virtual ‘team’ and becom-ing aware of what other members of the team were thinking/suggesting ideas for the pack.

‘As a teenager preparing to complete my transition to the Adult Centre, I have found that working on the project has helped me to gain a greater awareness of what will be expected of me during the process and how I can remain positive about the move with-out feeling anxious’.17

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Creating an awareness of CF and Life Choices Evaluation Report

17 Participant response to KW



Staff responses reported the feeling that the pack would have a wider remit, possibly in colleges or schools, but definitely with the CF community, in creating awareness.

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‘I think it’s going to capture a bigger audience than what we think – we showed it to some multi-professional people and looking at the DVD especially I think a lot of our families, especially newly diagnosed families, are going to want to watch that because I think the inspirational stories are brilliant, and even for me as a healthcare professional I found it exciting to watch them and to see how a lot of the adults are living ‘normal’ lives … I think it is something that can be expanded on and be shown to some of our young families who are worried about the future … I think it’s brill, when it comes out I think we’ll be using it a lot, I don’t think we’ll be waiting for transfer… I was really proud to show it to other professionals’.18

Artist responses mirror those of the staff and par-ticipants, with the belief that the pack has gone beyond its original remit and provided a useful re-source for CF specialist workers across the North West.

18 Staff questionnaire response

Creating an awareness of CF and Life Choices Evaluation Report

transitions book and DVD launch 23rd May 2011



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Reducing A Sense of Isolation Evaluation Report

One of the project aims was to foster a greater sense of CF community and reduce the sense of isolation young people with CF experience. The creative project team was very aware that the segregation policy in hospitals meant that young people with CF were not allowed to mix with each other, and even when not admitted to hospital, young people with CF are advised not to mix with their CF peers. This was a protocol the cre-ative team put in place for all their workshops. Whilst there are online forums and social network-ing sites, what became obvious was that some young people rarely got the chance to discuss their concerns, worries or issues around CF with their peers – especially if they chose not to go onto those sites. However, some healthcare pro-fessionals and young people with CF also sug-gested that sometimes young people with CF do not necessarily wish to be defined by their condi-tion and therefore do not feel isolated from a CF ‘community’ that they do not necessarily recogn-ise. In fact several participants made it clear that they don’t regularly use the CF forums that are set up. This was interesting for the creative team, as one of the main aims, it was suggested, was perhaps not an actual concern for many young people. More research would have to be done on whether the young people who engaged were more confident, therefore did not need the sup-port of a CF ‘community’ or whether those young people who have grown up with the idea of isola-tion and segregation from others with CF do not necessarily feel any need for that community.

A consequence of the segregation policy on CF wards, however, is a sense of more immediate, day to day isolation, meaning that young peo-ple are often extremely bored during their regu-lar Hospital admissions for IVs every three months. This boredom and frustration at having nothing to do can often affect mental health and well-be-ing, and as such some of the young people artists worked with often defied the segregation policy and would meet up to chat with other CF patients in ward corridors/hospital cafes. That the work-shops would provide some relief from this bore-dom and sense of isolation was part of the original

plan, taking HK’s experience from workshops run at MACFC with adults with CF. This meant that the creative workshops run in the hospital wards with participants often provided a relief from the lack of contact from other young people and the re-petitive nature of the clinical treatment regimes.

Discussion between artists and partici-pants that referenced other artist/partici-pant discussions were also useful in com-bating this sense. As one participant put it:

‘It can help to put your mind at ease knowing that you are not alone in dealing with the illness’. Artists particularly felt the difficulties of not being able to work with a group of participants, as this is how creative art and healthcare projects usu-ally work, with the piece of work being creatively led by participants through a series of group work-shops. Because the artists therefore also had to deal with a sense of isolation there was an em-pathetic relationship that grew up, and an un-derstanding of the frustrations created both by segregation in the hospital units and the isolation caused by having a condition that can often be debilitating when not in hospital. Artists also under-stood that, as the condition does not define the participant’s personality, whilst some participants were happy to work outside of the hospital premis-es on the project, some young people just wanted to forget they had the condition when they got home and get on with their day to day lives. This took a while for the artists to understand, but led to the idea that perhaps the hospital was the best place for the first point of contact for a CF cre-ative arts project (see Recommendations below).

What also came across to the artists was that whilst some young people were deeply involved in CF fo-rums and groups, many weren’t and the point was often made to artists by young people that they



page 15

Reducing A Sense of Isolation Evaluation Report

didn’t necessarily want to ‘advertise’ their condi-tion by joining such groups, and that in fact partici-pation in the project should not be dependent on joining such groups. Therefore, whilst there was some frustration that the virtual methods of creating a group workshop type environment didn’t work out, in actuality the young people involved were grate-ful that this did not form a core part of the project.

Isolation from other young people with CF is a reality of living with the condition, but as many participants explained, having CF is not neces-sarily a defining part of their personality, and so whilst they believed it was a good thing to hear or read other CF stories, and good to know that ‘you’re not alone’, isolation is something that some participants do not actually mind.

artist and filmmaker Mark Haig working with a participant



page 16

The Creative Process Evaluation Report

It was widely acknowledged by participants, staff and artists that this project was unusual because group workshops could not be carried out and all believed that despite this aspect the project creative team had done well to get as many participants and viewpoints as it did to creatively inform the pack. There were over thirty people who actively participated.

What was important to the participants was the forethought that had gone into having a travel and subsistence budget, so that they could travel, for example to Lime, and be fed (a very important aspect for young people with CF due to the amount of food they need to eat to keep healthy). All participants reported being happy with the way the artists positively responded to the way they wanted to engage. What also worked well was the support structure between the artists. There were concerns that artists would get emotionally attached to participants, that they would have to deal with very poorly participants or indeed participants who might die, and that this would be emotionally difficult. Indeed, this did happen to one artist, whose first participant passed away a few months after their first meeting. It was difficult for the artist seeing a young person so poorly and in such pain when first working together, and emotionally difficult when the artist was told of the passing over the phone. As this was very early on, the artist did not discuss her feelings with any healthcare professionals, but did discuss with the other artists and the Lime project manager, and this proved to be a valuable support system.

Artists also had to be mindful of how poorly participants were during workshops and during filming, as often work had to stop because a young person was not feeling well; this was especially difficult during the filming of the short drama, but artists were prepared and coped well with this, due to the extensive training around the condition that they had undergone at the start of the process.

The artists noted frustrations with the process, such as cancelled workshops/meetings, loss of contact and sometimes over-contact with participants. However, as the overall objective was met – a pack created by young people with CF for young people with CF – it was deemed to be a successful process despite the different way of working that the artists had to take on board. There is more information on this in the recommendations on page 18.



page 17

Healthcare Professional response Evaluation Report

The transitions pack was launched on Monday 23rd May 2011. Health professionals who work with young people and around CF were invited to the event held in central Manchester. Some of the attendees were interviewed by MH and KW for the accompanying evaluation film, whilst others filled in a questionnaire, the responses to which are detailed in this section.

Attendees were asked to describe the pack in one word:

Informative (10 responses)• Excellent (5 responses)• Brilliant (3 responses)• Fantastic (2 responses)• Funky (2 responses)• Inviting (2 responses)• Appealing (2 responses)• Fabulous• Wonderful• Inspiring• Amazing• Interesting• Professional• Reassuring• Contemporary• Dynamic•

Where appropriate, all respondents could see themselves using the pack19 and all respondents considered the pack to cover relevant and appropriate topics and that the pack was useful for young people with CF when making the transition from paediatric to adult services.

Other comments suggested the pack was appropriate, user-friendly, brilliant work, that the DVD was excellent, that it focused on a young person’s perspective whilst acknowledging parental anxiety, eye-catching, challenging to preconceived ideas about living with CF,

beautifully presented, exemplary, full of useful info, teenage friendly, with good Q&A section, a well targeted pack for a difficult gap, a really useful resource, very impressive, compact and easy to use. One respondent wished there was something more about CF and diabetes in the pack. (The steering group had made a conscious decision not to overload the Transitions Pack with too much information, and are planning to give additional information tailored to each patient as required)

Other respondents said:

‘Brilliant work, excellent pack, very informative and modern style – very useful that you’ve included stories – will make a greater impact on how patients and families consider CF and support they receive’.

‘The pack is very informative, set at a level that is interesting and stylistic for adolescents. It obviously has taken into consideration lots of experiences/views and opinions to make it completely relevant. Excellent’.

‘The Transitions booklet is a great achievement and will be a fantastic resource of information for anxious teenagers awaiting transitions. Well Done’.

19 3 said they would not use the pack because they did not work in transition

Recommendations Evaluation Report



page 18

This project was carefully planned from HK’s years of experience of working with CF patients and the multidisciplinary staff team at MACFC. However, this was the first time young people with CF not yet receiving adult care at MACFC had been targeted, and therefore there are a few recommendations that could be made, such as:

Initial home visits by artists to meet potential participants may work, however home • workshops do not. A better process is to run workshops either at the hospital during in-patient stays or at Lime studios (ensuring that the participant has been brought to Lime by an artist before the first workshop, so they know what to expect and how to find it)

Creative workshops alleviate boredom/tedium for participants whilst in hospital as in-• patients, making this a valid creative outcome that works on positive mental well-being

Participants particularly liked the fact that this was a project with an end product that had • such relevance to CF, and was structured in a way that enabled them to focus on particular creative aspects in the workshops at particular times.

It would possibly have been an advantage to bring in the graphic designer earlier on in • the process, so that she had time to work with the young people without the pressures of looming deadlines for the end product (Transitions Pack)

Trying to create virtual space for the project did not work (i.e. the MySpace page). Few • young people accessed this page and no one commented or responded to it, despite the blog and the introductory video. It might be that there are already well-established virtual spaces for young people with CF and that they do not need/want additional ones. Contact through mobile phone/email proved sufficient

An expert patient on the steering group might be beneficial, as the artists often had to be • the participant voice at these meetings

Consideration must be given to issues around securing funding to cover the cost of the time • it takes to set up and deliver, manage and support projects such as this including: careful negotiation with new project partners/paediatric hospitals, complying with NHS protocols around patient care and confidentiality, working in partnership with extremely busy NHS staff, securing parental permission. Artists cannot just walk in to a Hospital and start working with patients and/or staff

That protocols should be in place for informing artists about very ill participants, and about • the death of participants.

CONCLUSION Evaluation Report



page 19

‘I think everyone who is working on it is really invested in it, it’s not just something they’ve been assigned to, it feels really heartfelt’.

‘I think it’s been a really good project, I’m really looking forward to seeing the package’.

‘It was good talking to Kim and Jacqui cos they’re doing now what I think I’d like to do with my career, and Jacqui really helped me with my coursework, on photoshop, and I got a B’!

‘The pack contains inspiration and support for young people in a subtle manner – the inclusion of artwork and stories from young people with CF gives a real and believable tone to the Pack that I think would otherwise have been unachievable. I also think it is a great source of information for those that support, know or care for someone with CF and could certainly help with answering questions they may have’.

‘The end product has exceeded my expectations – I like all the pack. It was nice for the older patients to be given the opportunity to pass on advice to the younger generation’.

‘It’s come together really well and exceeded my expectations of what it’s going to be, and it’ll be a good resource’.

‘It’s that sort of normalising process, saying oh gosh, I thought I was the only one who thought this, but I’m not’.

‘Just watching the video of what others have gone through, I think its really really good’.

‘There is only really one thing I need to say, and that is, thank you! I have really enjoyed being a part of the project and it is humbling to know that my opinions and contribution are greatly appreciated and that I have played a role in helping to produce such a constructive resource. I have no doubt that the CF Pack will be a great success and I can’t wait to see the final result’!

‘A fundamental key to the success of the Transitions project has been working with a team of NHS staff including the clinical director who are open to the idea of working with artists, and value the role that they can play in healthcare contexts. Not a superficial role, but one deeply embedded in the holistic quality of care they want for their patients, as whole people/individuals. The excellent professional artists commissioned for this project brought their specialist skills and way of looking at the world to explore issues relevant to young people with CF and create a truly amazing piece of work, the Transitions booklet and film’.

‘One of our 16 year old female patients was very reluctant to partake in discussion about any future decisions/process, fearing the unknown, when transition was broached in her previous clinic meeting by the team. Along with our CF nurse we conducted a visit to her house and took with us the new transition pack. We spent a good couple of hours discussing the adult in patient & outpatient set up and explaining the purpose of the pack and its inserts. We also discussed the launch of the new website. By the end of our visit she was more openly questioning us and itching to watch the DVD and discuss the pack/transition with her mum’.

That the project overall was a success, broadly met all its aims and indeed surpassed some, can be seen throughout this document, so in conclusion, here are some quotes from artists, participants and staff that speak for themselves.


EVALUATION REPORT; ‘Transitions’www.limeart.orgpage 20

1. How were you involved in the CF Transitions Project?

2. Do you think the aims of the CF Transitions Project were met?(to create a pack for young people with CF lead by young people with CF, to help YPWCF engage with creative workshops, to foster a greater sense of CF community)

3. Do you think the pack articulate young people’s concerns and issues around growing older with CF? If not, why not – what else could have been done?

4. Do you think the workshops improved CF awareness for young people with CF and those who support them? If so, how? If not, why not?

5. Do you think the pack will improve CF awareness for young people with CF and those who support them? If so, how? If not, why not

6. Do you think involvement in the project did anything to reduce a sense of isolation for young people with CF?

7. Because we could not run workshops with groups of young people with CF, we had to find other methods to ensure the project was creatively led by young people – including face to face, MySpace, emails and texts – do you think this was successful, if so, in what ways, if not, in what ways?

8. Is there anything else you’d like to say about the CF Transitions?

Appendix 1 – Questionnaire for Staff and Artists



Appendix 2 – Evaluation Questionnaire for Participants

1. How were you involved in the CF Transitions Project?

2. Do you think the aims of the CF Transitions Project were met?(to create a pack for young people with CF lead by young people with CF, to help YPWCF engage with creative workshops, to foster a greater sense of CF community)

3. Does the pack articulate young people’s concerns and issues around growing older with CF? If not, why not – what else could have been done?

4. Did the workshops and/or the pack improve CF awareness for you or those around you?

5. Do you think involvement in the project did anything to reduce a sense of isolation for young people with CF?

6. Because we could not run workshops with groups of young people with CF, we had to find other methods to ensure the project was creatively led by young people – including face to face, MySpace, emails and texts – do you think this was successful, if so, in what ways, if not, in what ways?

7. Is there anything else you’d like to say about the CF Transitions Project?



Appendix 3 – Questionnaire for Health Professionals given out on launch event

We hope you have enjoyed looking through the CF Transitions pack and watching the film. Lime worked closely with a number of young people with CF to ensure the project was creatively led by them. Now you are seeing the finished product for the first time, we would be grateful if you would take a couple of moments to give us your thoughts on the pack by answering a few simple questions.

1. Name & email address(optional):

2. Could you describe the CF Transitions pack in one word?

3. Can you see yourself, where appropriate, using the CF Transitions pack?

Yes/No (please circle your answer)

If not, why not?

4. Does the CF Transitions Pack cover relevant and appropriate topics?


If not, what do you think is missing?

5. In your opinion, is the CF Transitions Pack going to be useful for young people with CF to make the transition from paediatric to adult services?


If not, why not?

6. Are there any other comments you would like to make about the CF Transitions Pack?

Many thanks for filling in our questionnaire! [email protected]



page 23

Appendix 4 – Budget/Costs breakdown

Total project budget £62,000

Funding from BBC Children in Need £49,534 covered the following:

Freelance Artist Commissions:Creative Writer . . . . . . . . . . . . . . . . . . . . . . . . . Film maker. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Graphic Designer / Visual artist . . . . . . . . . . . .

Supervision for artists . . . . . .. . . . . . . . . . . . . . . .

Arts Materials . . . . .. . . . . . . . . . . . . . . . . . . . . . .

Mobile Phone costs . . . . . . . . . . . . . . . . . . . . . .

Stationary . . . . . .. . . . . . . . . . . . . . . . . . . . . . . . .

Travel paid to participants + artists . . . . . . . . .

Documentation . . . . . . . . . . . . . . . . . . . . . . . . .

Hospitality . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .

Production Costs . . . . . . . . . . . . . . . . . . . . . . .

Transitions Pack quantity 2,000 copies: Folder £1,620 Perfect bound book £2,029 A5 inserts £484 A5 double gatefold map insert £585 Collating and inserting pack £384 Printing of 2,000 DVDs £918 House Hire – film set for DVD film £180 Film sound engineer £200 Post production audio+music for film £250

Evaluation . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .

12,60012,600

4,480

3,024

2,344

731

1,329

1,255

2,275

496

6,650

1,911

Please note that the BBC Children in Need funding did not cover Lime’s project coordination/management, lead artist costs and admin which were extensive in this northwest wide, complex project working with very ill and vulnerable young people. £10,000

In kind contributions included:

Specialist training in Child Protection and • CF issues provided by healthcare staff

CRB checks done by Hospital (CMFT)•

Venues for events provided by Hospital • (book launch and staff workshop)

The actors gave their time at no cost (travel • expenses were covered)

The sound engineers were only paid a • nominal fee



Appendix 5 – Participant Log

Patient Confidentiality means that we cannot provide names, home postcodes or their regular Hospital in this document. Use of participant’s first initial and location of workshop is permitted

Lime artist/project manager: Helen KitchenArtist Names: Kim Wiltshire, Mark Haig, Jacqui Symons (* indicates first workshop/visit)

Ethnicity: Please note because of the genetic basis of CF certain ethnic groups are unlikely to have the condition. For more info: www.cftrust.org

Date Location of session

Name (initial) of participant

Age Male/Female Ethnicity

NOVEMBER 2009

4th RMCH Z* 18 F Pakistani4th G* 13 F WB4th C* 14 F WB9th RMCH Z 18 F Pakistani9th G 13 F WB9th C 14 F WB9th K* 13 M WB9th A* 14 F WB9th L* 14 M WB11th patient’s

homeA* L 14 F MR

11th A’s sister* 10 F MR16th RMCH A 14 F WB16th Z 18 F Pakistani30th Little Hulton K & parent* 13 M WB







DECEMBER 2009

4th RMCH A 4th R* 13 F WB4th J* 16 M WB7th Partington

– patient’s home

S* 18 F WB

11th Stretford – patient’s home

A 14 F WB

14th Blakeley – patient’s home

G 13 F WB

JANUARY 2010

12th RMCH – MH S* 12th A* 18th RMCH –KW A 18 F WB18th A 14 F WB18th S 18 F WB18th S 18 F WB18th R* 18 F WB

FEBRUARY 2010

4th RMCH – MH A 15th RMCH – KW A 15th K* 15 F WB







MARCH 2010

3rd Blackburn – MH

J* 14 M WB

10th Cheadle – KW

S* 18 F WB

10th RMCH S 16 F WB10th G 13 F WB10th On the

phoneH* 18 F

10th L* 18 F23rd RMCH – MH J24th MACFU – KW D* 20 F WB

APRIL 2010

8TH RMCH KW & MH

A

MAY 2010

10th Lime with KW and MH

Z F AB

On email Contact through May

C* 18 F

12th Lime A 18 FOn email re: film

throughout May

A







JUNE 2010

8th Own home – filmed interview for DVD

K* 39 M WB

15th RMCH A21st On location

for filmA

28th On location for film

A

JULY 2010

16th RMCH A F WB

AUGUST 2010

12th RMCH Z F AB12th A F WB16th Lime with MH A16th Animation

workshop(A’s mum)*

17th RMCH Z23rd Lime with JS A23rd J (with A)*26th MACFU SV 18 F26th Own home

for DVD interview

C* 70 M WB







SEPTEMBER 2010

10th York - own home for DVD interview with MH

L* 26 F WB

21st KW home visit

O* 17 M WB

OCTOBER 2010

13th MACFU A20th Lime A20th RMCH AL27th Lime Z27th Home visit

For DVD interview

S* 40 F WB

Jacqui Symons’ participants 12 workshops SEPTEMBER 2010 to FEBRUARY 2011

Own Home O 15 M WBLime Z 18 F ABLime/MACFC A 18 F WBLime J* 15 M WBLime Js parentLime H* 15 F WBLime H’s parentOwn home C* Older patient M WB



Appendix 6 - Timeline Summary

Since 1995: Lime has an established on-going partnership delivering creative projects with the Manchester Adult Cystic Fibrosis Centre (MACFC) commissioning a wide variety of professional artists to work with adult patients during their often frequent hospital admissions.

2007: Helen Kitchen (HK), Lime arts project manager, and colleagues begin discussing potential transitions project with the MACFC. Through talking with staff, HK became aware that healthcare professionals in the northwest had been focusing on improving the transition experience of young people with cystic fibrosis (YPWCF) transferring to the MACFC.

2008: Existing CF Transitions Group made up of healthcare professionals begins to work with Lime Art • developing initial ideas for a creative, patient/young person led, flexible Transitions Pack. HK begins exploring potential funding streams and together with the specialist CF healthcare • staff and Lime Art colleagues writes a comprehensive funding bid to BBC Children in Need. As part of this process potential project partners (paediatric centres in the northwest) are • identified. Project artists are identified and approached about potential commission• Presentation about the potential project is given to paediatric and adult healthcare staff at • the 6th annual CF Transitions event in June

January 2009: Funding bid submitted by Lime to BBC Children in Need. •

April 2009: BBC Children in Need award £49,534 for 18 month/2 year project• Main aim is to create a Transitions Pack designed by young people with CF, for young people • with CF (target age range 13 to 18).Creative writer and film maker are offered commissions (to begin in August/Sept 2009)•

May to October 2009: Dedicated project steering group officially formed - includes staff from MACFC and the • Royal Manchester Children’s Hospital and regional hospitals. Additional members recruited – specialist CF staff from paediatric centres from across the northwest catchment area for MACFC. Steering group meets monthly for the duration of the projectHealthcare staff on steering group identify potential participants - all YPWCF aged 13 to 18 • in northwest. They send letters to parents for consent to participate (opt out clause) and also send Postcard invitations designed by Lime to named young people.Creative writer and film maker formally contracted• Artists are CRB checked through Central Manchester University Hospitals NHS Foundation Trust • (CMFT). Process takes approx 2 months.Artists receive Child Protection/Safeguarding Training at CMFT (artists are paid for their time)•




Artists spend 1 day with specialist CF healthcare staff at MACFC and/or RMCH in order to • gain a better understanding of CF as well as social and emotional issues. (artists paid for their time)Best way to recruit young people explored with staff and artists• Presentation giving transitions art project update given at the 7th annual CF Transitions event in • July

November 2009Creative writer and film maker set up project blog (MySpace)• Creative writer and film maker begin one to one creative workshops with young people with CF•

December 2009 to May 2010 Creative writer and film maker continue one to one creative workshops with young people • with CFCreative writer works with young people to develop script for DVD film drama• Paediatric and adult CF healthcare staff invited to day long drop in workshop with artists • (9th Dec 2009)Script for Film completed in May• Actors for film recruited in May•

June to August 2010Filming (begins in June) for the DVD drama takes place in different locations: rented house, • Manchester Metropolitan University at Crewe, outdoor scene at Lime studios.Visual artist/graphic designer commissioned by Lime. She begins working with creative writer • and delivers one to one workshops with young people to design the Transition Pack booklet, inserts and folder. (this artist is also CRB checked and receives same training as other two artists before working with young people).Interviews with adults with CF filmed for Transition Pack DVD• David Ramsden, CEO of BBC Children in Need visits project on 7th July and meets two of the • young people at RMCH who have been involved in the projectPresentation on transitions art project update given at 8th annual CF Transitions event in July• Year 1 report sent to BBC Children in Need at end of August•

September 2010Virtual tour of MACFC filmed for Transition Pack DVD• Interviews with adults with CF filmed for Transition Pack DVD• Visual artist/graphic designer continues working one to one with young people on design of • pack.Creative writer works with staff, YPWCF and graphic designer on text for booklet and inserts•

May to October 2009 continued:




October 2010 to Feb 2011Visual artist/graphic designer continues to work one to one with young people on design of • pack. Also liaises with Lime and key healthcare staff as design ideas progress.Creative writer continues to work on text with staff and liaises with graphic designer• DVD goes through editing process and is given final approval in January 2011•

March to April 2011Final design phase of transitions pack liaising with Lime and healthcare staff – visual artist/• graphic designer pulls all elements together doing the final design of booklet pages, inserts and folder, DVD print design and titles for DVD film.Transitions Pack and DVD go to print – 2,000 copies produced• Begin collating information and writing final evaluation/report•

23rd May 2011Transitions Pack launch – healthcare staff and other interested professionals invited and given copies •

June to August 2011Compete written evaluation/report of transitions art project with DVD of filmed interviews with • participants and healthcare staff for BBC Children in NeedPresentation on completed project given at the 9th annual CF Transitions event attended by • over 50 adult and paediatric staff in JulyNHS staff plan a future post project evaluation of Transitions Pack with new patients •

Transitions Pack distributed (as of end Aug) to:Healthcare staff begin using the Pack with young people with CF in the targeted age range • (main purpose of pack)Healthcare staff identify additional audiences for the Pack, for example couples with newly • diagnosed babies with CF (gives them some reassurance for future)Project participants • Healthcare staff in regional paediatric centres• Clinical Directors of each main CF Centre and shared care clinics across UK • MACFC staff• Healthcare staff working with YPWCF • Healthcare staff working with young people with other chronic conditions• CF Trust• Kings Fund• UK Psychosocial professionals in CF Group (over 100 members)• Manchester Mental Health and Social Care Trust clinical Psychologists – Burns and Renal services•

lime art - transitions evaluation report 2011

Documents

cystic fibrosis cf

awareness of cf

young people

regional paediatric

cystic fibrosisypwcf

life choicesreducing

life expectancy

adult healthcare services