As a service, we are also committed to partnerships between patients and professionals. One of the ways we work to improve patient’s experience of iCope is by promoting service user involvement. Service user involvement in shaping mental health services and ‘patient choice’ are at the forefront of current issues in the NHS, and we have worked on developing ways in which meaningful service user involvement can be implemented in practice within our service. For example, at the end of treatment clinicians discuss with patients the importance of feedback and invite patients to provide feedback via our Patient Experience Questionnaire.
Co-Production
From start: Yes
During process: Yes
In evaluation: Yes
Evaluation
Peer: Yes
Academic: No
PP Collaborative: Yes
Find out more
Dr Lucy Wilson-Shaw - Deputy Clinical Lead, iCope; Camden and Islington NHS Trust
Our Improving Access to Psychological Therapies (IAPT) service in Islington, locally branded as ‘iCope’ provides psychological interventions and therapies for people with common mental health problems, such as anxiety disorders and depression within Islington GP practices and community settings. We aim to ensure that all patients receive a high level of professional, person-centred care and support, and continually strive to improve our patient’s experience of the service.
One case that highlights this is a female patient who referred herself to iCope for help with her lifelong phobia of butterflies. The patient’s butterfly phobia was causing her to put herself in dangerous situations, for example running into a road of oncoming traffic when a butterfly came near her, and she was also concerned about ‘transferring’ her phobia to her two year old son. An iCope psychologist worked with the patient using CBT, and took time and care over gradually helping the patient work through her fear by using ‘graded exposure.’ After taking the time to fully understand the patient’s fear, experiences and goals, therapist and patient worked creatively together, for example first looking at pictures of butterflies, then cutting out pictures of butterflies and throwing them in the air to simulate their flying, before progressing to watching films. Gradually the patient felt like the panic was easing and she could manage her emotions. In the final sessions, the psychologist accompanied the patient to a butterfly exhibition and with encouragement from her therapist, she was able to walk amidst real butterflies. The patient reported that her psychological therapy in iCope was life changing. She reported she now felt able to visit her family in the Philippines, and was no longer held back or separated from loved ones by her fear.
As a service, we are also committed to partnerships between patients and professionals. One of the ways we work to improve patient’s experience of iCope is by promoting service user involvement. Service user involvement in shaping mental health services and ‘patient choice’ are at the forefront of current issues in the NHS, and we have worked on developing ways in which meaningful service user involvement can be implemented in practice within our service. For example, at the end of treatment clinicians discuss with patients the importance of feedback and invite patients to provide feedback via our Patient Experience Questionnaire.
We also invite patients who have completed treatment within iCope to attend Service User Advisory groups run by iCope managers and clinical leads. Our Service User Advisory group allows the views, voices and opinions of the people who use the service to be heard in order to make real, sustainable changes to improve our service. People who have attended these groups have reported that they found them “productive, enjoyable and worthwhile” and felt their ideas were taken on board. Being involved in service improvement makes a difference to the individual service user: being part of the group can be therapeutic in itself and can help promote a sense of confidence, mastery and achievement. The iCope service and staff also benefit from the useful and relevant feedback from service users which can be put into practice. This year the group has (in collaboration with iCope staff) developed an Aftercare Leaflet, and a ‘Beyond Therapy’ section for the iCope website.
Another aspect of the service we have developed over the past year is the level of input service users have to the design and running of our therapeutic groups. We now employ 4 Peer Wellbeing Workers (all ex service users of iCope) who work together with our Psychological Wellbeing Practitioners to deliver groups and workshops that both draw on the psychological training of Psychological Wellbeing Practitioners, and also the lived experience of Peer Wellbeing Workers. A review of groups and workshops run with Peer Wellbeing workers demonstrated that service users found they connected more with these groups and felt more hopeful about the effectiveness of the interventions as a result of Peer Wellbeing Worker’s involvement. We feel that it is extremely valuable for services such as iCope to be able to recruit staff who have an understanding of mental health difficulties, both through lived experience as well as through training and education.
Through joining our Advisory Group, or by simply expressing an interest in future opportunities for involvement with promoting positive mental health, clients who have used our service have become involved in many areas of mental health promotion and research in Islington. Our clients have served as Service User representatives for research trials, played an active part in our Team Away Days, helped with training for NHS Graduate Trainees and become involved in local projects such as ‘Mental Health Champions’. They also now regularly teach on local training courses for Clinical Psychologists and Psychological Wellbeing Practitioners. We feels this shows that our team works in creative ways to help the local community reduce stigma around mental health issues and promote positive mental health in the community, as well as being successful in our core task of providing NICE recommended treatments for anxiety and depression.
We have been successful over the past year in finding a committed group of people who have used our service and have now trained with the Trust to be part of our recruitment panels. Thus all new staff experience from the very beginning of their employment here that the experience and perspective of our service users is at the heart of everything we do.
In terms of how our service makes a difference to staff who work in iCope, there is a real ‘family-feel’ to our service and employees are supported as individuals and as a team on professional and personal levels through supervision, reflective practice groups and team meetings. It is a wonderful environment to work in and an exciting team to be part of. We created a team ‘positivity jar’ where staff can put their positive reflections of the week – these are then read out at team meetings which always lift’s people’s spirits. We promote therapist self-care in our service. For example, our team come together for staff mindfulness, yoga and exercise sessions, which strengthen our bonds as a team and are good ways to help staff combat stress and stay well themselves.
Members of our team are continually developing creative within-service projects that benefit clinicians, patients and the service. For example, our service conducted one of the first reviews of Mental Health Apps, which has now been promoted by NHS England.
Staff report feeling like they are part of an innovative team, passionate about driving forward with positive change for patients and service. We are continually working together on creative ideas to develop individual roles, service protocols, and promote positive patient experience and staff wellbeing. For example, at our team meetings positive patient feedback is read out to the team, as well as constructive comments about areas for change or improvement. For example, a recent comment from a patient when they gave feedback to our service was: ‘iCope is a much needed support service for mental health. Therapists treat you with respect, compassion, understanding and empathy. Most highly appreciated. Therapists helped with setting goals, outlined resources and worked through strategies, which greatly restored a much improved self-image; this enhanced my overall wellbeing and restored my faith in the mental health services.’
Clinicians also frequently share ‘successful stories’ when they have completed a good piece of work with a client where they may have overcome barriers and the patient really benefitted from treatment. Staff have reported that sharing patient feedback is useful in terms of learning from service-users and other clinicians, and perhaps most importantly makes them feel proud about the work that we do together with patients within iCope. In summary, the Service is committed to inspiring a culture of compassion that values staff wellbeing and improves patient care.
Wider Active Support
Establishing links and working with other organisations in the community is another way that we seek to improve our patient’s experience of the service they receive within iCope. Depending on their individual situation, needs and preferences, we assist our patients to make contact and build relationships with other organisations that can help them to become more active in the community, socialise and share interests with others, or receive practical help with employment, housing or benefits advice.
We also cross refer to a large number of third sector organisations including Talk for Health, Community Development Workers, Mental Health Champions, Carers UK, Age UK and MIND, and signpost patients to local counselling services, community centres and volunteering or education schemes. We also find that through our Advisory Group clients are able to share what they have found helpful with others, and facilitate stronger links between services. For example, a client treated in iCope and linked in with a local gambling charity later attended the Advisory Group and our Team Meetings to share his experience of the service and help promote it to iCope staff and clients. We now have a stronger working relationship with this organisation and a much greater awareness of the issues of gambling and how to talk to clients about these.
To give another example, our strong links with Islington employment organisations ‘Remploy’ and ‘Twining Enterprise’ who support people struggling to stay in work or to get back into work, are particularly beneficial for many of our patients. One patient, who attended a Remploy assessment and worked with a key worker to update her CV and apply for positions, got a new job in a role that really suited and interested her. Upon completing treatment within iCope she commented on being impressed by ‘how iCope works with other organisations’ and was very appreciative of the linked-up working.
Our service user involvement initiative also involves working with other organisations. We regularly liaise with our partner service in Camden to discuss how we can improve the ways in which patients can provide feedback to our service. For example, both the Camden and Islington IAPT services now have an email address that we use specifically to contact service users about feedback and involvement in service improvement. In iCope, we have a ‘Get Involved’ section on our service website (www.icope.nhs.uk), where patients who have had treatment can provide anonymous feedback and comments about their experience of the service. We also actively try to get feedback from clients who have dropped out of therapy, by offering them the opportunity to talk to a member of staff over the phone to provide feedback about their experience of iCope.
Co-Production
Service users are at the centre of our thinking at point of referral, assessment and treatment, through to end of treatment and beyond. We have boosted our service accessibility; people are able to refer to iCope through their GP or self-refer by telephone, email or via our website. We also have several projects underway aimed at increasing access to the service for under-represented groups in mental health services such as older adults and BME groups by promoting our service within other teams that work closely with these cohorts.
For patients receiving therapy within our service, we always provide a high level of professional, supportive care which is tailored to individual patient needs. For example, one of our clinicians made creative adaptations when working with a patient with panic disorder who was also 95%-100% blind. Together they completed a panic cycle formulation by using touch sensation; mapping out the different components of the panic cycle on the wall. The clinician guided the patient from one part to the next highlighting the vicious cycle and his current safety behaviours, regularly pausing for the patient to associate objects to different parts of the model so he could remember and make sense of the formulation. The patient described this approach as extremely useful and reported a significant reduction in panic attacks by the end of treatment.
This case highlights the person-centred, creative and supportive approach we take to patient care in our service, where patients are viewed as real people, not just numbers in a mental health service. Indeed, another patient recently commented on their feedback form: “I have found this service exemplary – text message reminders, helpful and friendly reception staff, non-judgement psychologist with a commitment to helping me to feel better and manage the complexities of life. The best NHS experience I have ever had. Thank you to all!” As well as the high level of professional care we provide to all of our patients, our involvement of service-users in shaping our service also demonstrates how our patients are at the centre of our thinking in. People who use our mental health services are the true experts on how these services should be developed, delivered and improved. Our view is that we need to know what the people who have used our services think about them so together we can develop shared objectives to shape and improve iCope in way that patients, staff and commissioners find helpful, relevant and supportive.
Service users who have attended our service user advisory groups led by our managers and clinical leads have been involved in projects such as: generating ideas for the video content on the iCope website, and creating and editing a leaflet about the Advisory Group for clinicians to give to their patients and developing our Aftercare leaflet. Service users are able to discuss their experience of treatment within iCope and what aspects they think could be different or improved. Service Users are encouraged to tell us the story of their experience within iCope and think about how they would like this to be used to improve services. Our service users have help us develop the content and style of the groups and workshops we run, they have also helped us change the way in which we book first appointments in the service and produce content for our website. The advisory group also gives service users the chance to generate ideas for new projects they would like to be involved in and think about how to develop service user involvement going forward. We have also incorporated ‘patient stories’ from our own patient’s experiences and journey to recovery into our revised guided self-help booklets for anxiety and depression.
For example in the low mood booklet, service users provide examples of how they found different CBT techniques helpful in overcoming their depression.
We also work with service users in co-developing community projects that are important to them. For example, one of our advisory group members came to us with a wonderful idea to start a local walking group in Islington, drawing on his personal experience of the benefits of walking on his mental health and wellbeing. A group of clinicians are currently working with him to develop his idea, design & print promotional leaflets and think with him about how best to manage the administrative side of running the walking group.
Our Peer Wellbeing workers are perhaps the most clear example of co-production. They have worked alongside and in an equal position to Psychological Wellbeing Practitioners to redesign our groups and workshops to incorporate their lived experience of mental health difficulties and treatment alongside evidence based CBT techniques and strategies.
Looking Back/Challenges Faced
This project has taken a long time to develop, and will continue developing in the future. In hindsight in may have been helpful to talk to other departments in our Trust earlier on in the process which may have led to the project developing more quickly. I think this is particularly relevant to the issue of agreeing job descriptions, contracts and finance approval for service user posts.
There have been and continue to be challenges in developing this service user involvement project. While we have been very successful in increasing the level of feedback we receive from service users who engage with and complete treatment. We still struggle to receive good levels of feedback from service users who start treatment with iCope but do not complete treatment. We are continuing to think of ways to increase this – such as having ways people can give feedback through our website and in all our waiting rooms. We have designed a monthly poster for our waiting areas which shows the feedback we have received and how we have acted on this – which we hope acts as further encouragement to people to give us feedback.
We also now regularly undertake a telephone survey with people who did not complete treatment –offering them the opportunity to give feedback if they would like to (using a semi structured interview). This has led to very useful feedback for the service – leading to changes in how clinicians talk about our attendance policy, and also led directly to some patients re-engaging with the service. We have also faced some challenges in changing the wider culture of the Trust to make service user involvement central to our service. One of the challenges we did face was how to organise training for service users so they are able to and feel confident to be part of interview panels. By taking the approach of identifying a group of service users who were keen to take on this role and also collaborating with other services we were able to change this and interview panel training is now provided by the Trust on a rolling basis.
Sustainability
Care has been taken throughout this project to ensure that all changes are built into the protocols and policies for the service and just become part of routine practice. For example: SU involvement opportunities are written into Operational Policies ‘at the point of recruitment panel design a service user forum will be contacted to request additional trained panel member with lived experience of mental health’. In this way even if those leading the project move on, the positive changes to practice that have been made will continue. A further example here is that; using the PEQ in the final session with clients is now part of routine practice and written into protocols, and the document is included in ‘discharge packs’ that are always readily available for clinicians to use.
Discussion of feedback from service users now occurs at every team meeting, along with updates on levels of feedback received, and is a standing agenda item for meetings.
Funding has now been secured on a permanent basis for the 4 Peer Wellbeing worker posts after a one year trial with fixed term funding.
The service is also able to ensure that a clinician in the service will be designated as the lead for service user involvement, and one of the key roles of volunteers who give their time within our service is to collate and analyse the data from service user feedback and disseminate this to staff and to service users (via the notice boards in waiting rooms). By building up a dedicated and enthusiastic Advisory Group of ex-service users who are strong and vocal in their opinions, it is hoped that they will also play an important role in ensuring that service user involvement remains at the heart of iCope
Evaluation (Peer or Academic)
We continually monitor and evaluate our patient’s experience through our client satisfactory questionnaires. The iCope Service is also evaluated through Commissioning targets (KPI), through NAPT, the Trust Staff Survey, and through referrer feedback and various service-user surveys. These methods of evaluation cover all the above aspects: patient safety, patient experience and staff engagement.
The Peer Wellbeing Worker roles were evaluated by a service audit, which will be repeated in a year’s time to ensure that recommendations made were implemented and further review evaluate the impact of the roles for staff and service users.
Sharing
Within our service, we regularly share ideas and update our team about the service user involvement project and achievements at our team meetings. It is a great way to keep the team informed and to use people’s knowledge and ideas about ways to develop and move the project forwards. This project was initially started as part of the NHS Leadership Mary Seacole Programme, and was shared through the NHS Leadership Academy. This project has also been shared at various conferences (including at the Kings Fund, Camden and Islington Service User Conference and the APPTS Forum).
Outcomes
At iCope outcomes are routinely measured using the minimum data set. iCope has consistently achieve it’s target of a 50% recovery rate, and receives overwhelmingly positive service user feedback.
The evaluation of the Peer Wellbeing Worker roles, found that service users, Psychological Wellbeing Practitioners and Peer Wellbeing worker all reported finding the new roles beneficial: increasing engagement, building skills, developing confidence and inspiring hope.
