Participants
Participants of the service are patients who are registered with a Clinical Lead at The Prince & Princess of Wales Hospice, their family and carers. Patients are referred to the hospice with life-limiting or terminal illness.
The Creative Arts Service accepts referrals from Day Services, Out Patients, IPU Ward, Community Team, Family Support and hospice Outreach Clinics. Most people who access art and creative writing at the hospice have had no previous experience, or have been forced to give up creative pastimes through ill health or caring responsibilities. Attendance might offer respite for the patient, family member or carer, and a therapeutic and focused activity with peers. It isn’t always easy for people to articulate why they might want to attend, however, especially if it is an activity they haven’t done before. It is important that the Arts Service is able to respond to these requests to ensure individuals are given the opportunity to try something new and to make their own choice whether to take this forward or not.
In 2015, we had 1137 patient contacts for visual art, 53 patient contacts for creative writing, 35 family contacts and 14 carer contacts.
Aims
The Creative Arts Service compliments the holistic and multi-disciplinary approach to care common within a palliative care setting. This approach treats the whole person and not just the illness, so each individual can live as well as they possibly can do. Creativity is recognised as a fundamental aspect of living a ‘good’ life and the Creative Arts Service offers and supports high quality, patient-led engagement with creative practices that enhance a sense of wellbeing.
The central aim of the service is to offer people the opportunity to develop their own creativity as a means of personal expression. The service aims to give people back some of the control they have lost through illness, disability and caring responsibilities. It also offers people the chance to try something new and to develop new skills, whilst engaging in a relaxing and meaningful activity during a difficult time in life.
The Creative Arts Service is currently developing an arts strategy which will sit within the hospice’s Vision and Values five year strategy for Clinical Day and Outpatient Services. The arts strategy will outline a commitment to maintaining high quality arts provision and ongoing critical engagement with wider arts and health practice as key to underpinning meaningful engagement for participants in a palliative care setting. In addition, the arts strategy will address the hospice’s strategic aims to increase wider access to services, in particular for young adults, those that are disadvantaged, people with learning disabilities, people from different ethnic minorities, and for people who are homeless.
Methods
Art staff work with individuals to tailor activities to each person’s interests and abilities to ensure the best possible outcome from each session. A process-led approach results in absorbing and rewarding experiences that help alleviate anxiety and provide relaxation.
Rather than structured group tuition, all sessions are practical, patient-led and supported by the artists and creative writer. Interventions with patients, families and carers promote independence and exceed expectations using a range of art materials, techniques or creative writing genres. The Creative Arts Service is motivated by therapeutic benefits centered round developing creativity as a route to a sense of wellbeing, rather than exploring or analysing issues raised in the creation of art work or art work itself, as would be the case in Art Therapy.
In the visual art sessions this approach can best be described as supporting participants to develop their own creative practice as artists in their own right, where ideas and skills can grow over time. It is important that all staff have an ongoing arts or creative writing practice of their own as this enables them to recognise the difficulties that can arise when making work, and to offer solutions as to how to move forward.
Good quality art materials play an important part in mediating the participant’s experience. For example, enjoying the sensation of a brush moving across the paper and its resulting mark can engage a person to move onto the next mark and so on. Over time people build skills in composition, colour and mark-making. This emphasis on practice is welcomed by participants as the outcome is immediate and focuses on creative expression and what is still possible, an important approach within palliative care.
Creative writing sessions allow patients the opportunity to explore autobiographical work, fictional writing or poetry during one-to-one private sessions. Others find comfort in knowing that someone can help them write a significant letter to a loved one. The creative writer works with each participant to help them to define his/her aims and the scope of their written project to ensure that the outcome is achievable within a given timescale. The ideas, words and content all originate with the patient, with the creative writer there as creative support and to scribe when appropriate.
As an integrated service, each patient, family and carer contact is recorded on Crosscare, with consideration to reviewing progress, care planning and any actions required. An artist also represents the Creative Arts Service at weekly Multi-disciplinary Team (MDT) meetings to discuss new referrals and to raise any causes for concern with current patients. This is important as the artists will often spend two to three hours with a patient on any given day and an MDT meeting provides an opportunity to make sure the patient, their families and carers are fully supported clinically, socially, spiritually and psychologically. The MDT meeting ensures the artist can refer a patient on to the appropriate member of staff for additional support if necessary.
An artist also attends regular Clinical Service Meetings where practical and strategic hospice wide developments are shared and where departments can ask for input, feedback or advice from the wider team. The service also offers biannual Staff Art Workshops and an annual Continuing Professional Development session on the aims and benefits of the arts programme for service users. This offers non-art staff the opportunity to experience first hand what the arts service has to offer patients, families and carers.
Artistic Outputs
Every word and mark created by participants is determined and made by them with support from the art team.
The majority of the visual art work produced by patients explores mark-making in its many forms but is in no way restricted to this. People have worked with photography, text, print-making, paper-making, book making and performance, alongside more traditional media such as drawing and painting, using a broad range of quality materials. There are plans to introduce animation, video and sound in the future to compliment more traditional media.
Written work takes the form of printed and bound documents, often combined with personal photographs or images of the patient’s visual art work. One example comprised a ‘photographic essay’ as a structure for a patient to write about her recollections of the moments surrounding a number of photographs she had taken of people and places important to her.
Evaluation Methodology
It is difficult to measure the impact of the Creative Arts Service using a formal test and evaluate model. Instead, regular feedback is sought through semi-structured interviews with patients, families and carers in which participants are asked to reflect on their experience and invited for comments on how we could improve the service in any way.
Across the hospice new services are developed in co-production with clients, and the arts service has been able to respond to identified demand to establish two new services over the last five years.
The Pattern of a Bird (2008) by Marielle MacLeman and Jeni Pearson documents and reflects on the artistic approach, visual art and creative writing made by participants during the first two years of the project (available from www.ppwh.org.uk). Marielle MacLeman also reflects on this pivotal period in the service’s history in ‘Arts in palliative care: the Prince & Princess of Wales Hospice’ (In Jarrett, L. [Ed.] Creative Engagement in Palliative Care, 2007, Radcliffe Publishing, pp.33-40).
The art team make workshop notes after each session and use a structure of assess, plan and review to reflect on and record sessions on a patient’s records in Crosscare. These are visible to all the clinical team as part of the chronological journey of the patient, family member or carer.
Evaluation Outcomes
The positive impact and benefits of the service are evident in the feedback from patient and families:
‘Developing my own art practice has opened up a whole new world for me. It is something for me to look forward to. Before coming I felt trapped; it is hard staring at four walls day in, day out. It means so much just to be able to do something normal and it has really helped me to build up confidence.’ – Out Patient
‘For me the art service is my time, something to look forward to. I look at my surroundings differently now, I look at the detail rather than just skimming over.’ – Day Services Patient
‘I worked with the Creative Writer on six photographic essays. At the beginning I did not know if I would manage it but the Creative Writer worked with me to help me draw it out. Sometimes I don’t know how I managed to do it all. I have achieved so much here and it has made me feel part of something again.’ – Out Patient
In co-production with patients and families, two new strands to the art service have been developed: Family Workshops and a monthly Carer Drop-in workshop.
‘I have always thought the arts service is a necessity and not a luxury. The benefit to the patients and families is immeasurable. As we’ve developed the service further we have involved families and carers. I think it has taken the fear out of what a hospice is and what a palliative care unit is, especially when you have three small children who are at school and they need to know where mummy is. They can come to a family workshop with their mum and it takes the fear out of coming here. That was one piece of feedback I remember from a patient.’ – Rhona Baillie, Chief Executive
‘Seeing dad being able to switch off and relaxed makes me happy. I enjoy seeing him totally involve himself in something and not to be in pain, and to be creative rather than thinking about everything else that is going on.’ – Family member
As a service we continue to invest time to educate staff about the benefits for patients of attending our service and to raise our profile within the hospice itself, specifically within IPU and Community Teams, with a view to increasing referrals from these clinical teams. We contribute professional development for staff in the form of biannual Staff Art Workshops with the aim of giving staff the opportunity to try first hand what patient’s experience, so they feel more comfortable making patient referrals themselves or in presenting the hospice’s work to potential funders and stakeholders. This also involves ongoing education that the therapeutic aims and benefits of the Creative Arts Service differ from those of counselling using Art Therapy.
‘Participating in the staff art workshop means I can better understand what patients’ experience, as I felt a calmness and unexpectedly a control over my session. I can imagine that for many patients, this allows them to feel in control over an aspect of their life.’ – Hospice Social Worker
‘I would absolutely recommend other staff to attend staff art workshops in the future. It widens your experience and better prepares you for client contact.’ – Hospice Social Worker
The art staff regularly meet the challenges involved in maintaining a balance between developing the creative practice itself, through strategy and creative interventions with participants, and the associated administration of being an integrated member of the multi-disciplinary team. This is addressed by safeguarding regular development time within the working week and meeting regularly as a department.
Often in palliative care there is a small window in which to respond to a patient and their family’s needs, and a fully integrated Creative Arts Service means we can respond to that need as and when it arises. The service’s foundation of high quality arts provision, accompanied by its ability to respond to patients’ and families’ needs, ensures a robust model for arts engagement within a palliative care setting, that can continue to grow and develop in line with the needs of those we work with.
‘It’s a core service and it has been from the minute I saw the benefits for patients myself. I think it offers a whole new arm to palliative care. It’s a place where the patients feel they can really express themselves. It offers relaxation and a totally different environment, one they wouldn’t find elsewhere in the hospice. I’m absolutely passionate about it and we would never let it go. It makes a considerable difference to people. We can look for all the outcomes we like, but I think art is hard to measure. It is when you speak to people that have never painted or drawn before that you see it gives them a great sense of pride. It’s also such a positive legacy for families.’ – Rhona Baillie, Chief Executive
Documentation and Dissemination
Current participants’ art work is professionally framed and displayed within the dedicated art room, and also around the day services lounge and the public areas of the hospice. Professionally framing and exhibiting patients’ art work is an important part of what the art service offers. The benefits of this extends to families, staff and visitors who see the work as an enhancement of the hospice interior.
At least once a year patients’ art work is exhibited in a public venue within the City of Glasgow or further afield. Previous exhibiting venues have included House for an Art Lover, Tramway, Kelvingrove Art Gallery and Museum, Scotland Street Museum, the Scottish Parliament and Aberdeen Royal Infirmary, in addition to national conferences on palliative care.
A collection of creative writing by patients has been documented in Foraging (2012), available from www.ppwh.org.uk.
Participants accessing the Creative Arts Service benefit from a sense of achievement and increased self-esteem seeing their work framed, published and publicly displayed. This reflects the commitment and value given to the work created by patients by the hospice as a whole.
‘The patients and their families are passionate about the service, and I think that says it all for me. It’s what they think, not what we think that matters.’ – Rhona Baillie, Chief Executive
Partners
Marielle MacLeman, Art in Hospital
