Health and Wellbeing for People Living with Heart Failure

Transcription

1 Health and Wellbeing for People Living with Heart Failure Duration of Project: November February 2014 Report submitted for publication: September 2015 Project Leader: Marcus Donnelly - Community Clinical Nurse Specialist - Cardiac Project team: Suma Kuriakose - Community Clinical Nurse Specialist Contact details: marcus.donnelly@nhs.net Summary Heart failure is a chronic long-term condition that affects 800,000 people in the UK and accounts for 141,500 hospital in-patient episodes a year. It impacts upon the person psychologically and socially due to the debilitating nature of the physical symptoms. Previously, care for people with heart failure had been provided by the secondary care sector, however, it was agreed by what was then known as the Local Implementation Team to move patients with heart failure follow up care, to the primary care sector. Under the community based cardiac follow up service, all new patients are given one hour for their initial appointment with a nurse, this, however, is often not enough time to provide them with the educational and emotional support that is required along with self-help information, explanations surrounding medication and different treatment options. One solution that was considered by the project lead was the introduction of a structured education programme. The aim of the project was to develop and implement an education programme for people diagnosed with heart failure, in order to promote choice, self-management and individual patient centred care. One of the first steps of the project was a staff focus group to engage key stakeholders among the nursing staff and then later among the wider multi-disciplinary team. Through a series of meetings, key stakeholders explored their values in relation to patient centred care. The project lead felt that it was important to allow the nursing team to establish common ground in relation to values when striving to achieve patient centred care and to support the creation of a programme that best supports patient centred care. It was agreed early in the project that it was important to understand what patient needs actually were and whether they were in line with nursing staff s perceptions. In order to achieve this, the project team invited patients to a focus group to discuss and share their experiences of being diagnosed with heart failure and living with the condition. Common themes emerged and it became evident from the language used that there was a lot of frustration from participants around their diagnosis, how and when it occurred. The education programme is still planned when staffing levels allow and is very different to the original vision. The plan is for the programme to be interactive, flexible to individual needs, and to promote support from peers and deliver practical consistent nursing support. Additionally, the 1

2 project has already had an impact on other areas of practice. Clinic letters have been redesigned with the patient perspective in mind, possible cognitive impairment and barriers to learning have been considered and innovative ways of explaining this condition have been introduced. Background Heart failure is a chronic long-term condition that affects 800,000 people in the UK and accounts for 141,500 hospital in-patient episodes a year (Townsend et al., 2012). Heart failure affects the muscle of the heart, which in turn impairs the pumping action leading to several different physical symptoms, which can include shortness of breath, fatigue and development of fluid retention (oedema). The British Heart Foundation (2015) explains: heart failure symptoms occur because the heart does not have enough strength to pump blood all the way round the body efficiently. This can cause fluid to pool in the feet and legs and if left unmanaged, it can build and spread to the stomach area and sit beneath the lungs. This reduces the lungs ability to expand and causes shortness of breath. This then also impacts upon the person psychologically and socially due to the debilitating nature of the physical symptoms. Psychologically the implications of living with a failing heart are the loss of independence regarding the social aspects of one s life, affecting the person. Currently there is no cure for this condition but there are treatments to help manage symptoms. The Community Cardiac Service (CCS) is made up of three teams of nurses based across three London boroughs; Barking and Dagenham, Havering and Redbridge. This project commenced at a time when the team in each borough were merging as part of the North East London Foundation Trust (NELFT), meaning that the cardiac nurses working across the boroughs would become part of the same organisation. Several years prior to this, care for people with heart failure had been provided by the secondary care sector. It was agreed by what was then known as the Local Implementation Team (LIT) run by the then Primary Care Trust (PCT) made up of stakeholders such as GPs, patients and secondary care consultants, to move patients with heart failure follow-up care to the primary care sector. These patients would be followed up by the specialist community nurses in a local centre rather than at an outpatient appointment in the hospital setting. Each borough had their own community based team of nurses that were stand-alone services prior to the NELFT merger. Provision was altered to allow patients to have local care provision so the secondary care specialist nurses could develop in-patient pathways to concentrate on in-patients, ensuring correct diagnosis and commencement of evidence based treatment for the condition. Following this alteration, there was an increase in referrals to the CCS. Some of these patients would have been recently diagnosed with heart failure after being admitted due to shortness of breath while others may have had investigations during their admission, such as an echocardiogram, which can confirm heart failure but may not have been reviewed by a specialist whilst in hospital. Others may already have had a diagnosis of heart failure but have been admitted due to an exacerbation of the condition. The increase in caseload referrals to the CCS had to be managed within current resources, which was extremely challenging as patients were previously seen 2-4 weeks post admission and require holistic support emotionally, psychologically and socially as well as the management of the condition. Under the community based cardiac follow up service, all new patients are given an hour for their initial appointment with a nurse. However, this is often not enough time to provide them with the 2

3 educational and emotional support that is required along with self-help information, explanations surrounding medication and different treatment options. One option that was considered by the project lead was the introduction of a structured education programme. The project lead was aware of guidelines that advocate the importance of this type of programme for people with heart failure (Scottish Intercollegiate Guidelines, 2007; National Institute for Health and Care Excellence, 2010). Multiple research studies have also confirmed the clinical effectiveness of patient education, models of delivery and the impact education has on reducing hospital admissions (Cline et al., 1998; Bjorck Linne et al., 1999; Jaarsma et al., 1999; Bjorck Linne et al., 2000; Stromberg et al., 2003; Koelling et al., 2005; Jarsma, 2005; Grange, 2005; Stromberg, 2005; Nicholls and Richards, 2007). Anecdotally, nurses in the team were aware that patients needed more information about looking after themselves, managing medication and self-care strategies that could be implemented, especially after a recent admission to hospital. This was not the first time that attempts had been made to instigate education sessions, however it had been difficult to run these regularly due to limitations of staffing. At the time the concept had been to see patients, whose condition was stable, on a group basis and to provide them with information to aid self-management and to enable them to recognise a change in symptoms. This programme had been developed with a small group of patients who were asked during their one-toone consultations what they felt they would need to feel supported when diagnosed with heart failure. Self-management strategies were identified along with education surrounding medication, causes and an explanation of the term heart failure. This was run twice monthly over the course of two months with around twenty patients attending over this time, however it had proved unsustainable long term due to other demands on the service, staffing issues, the structure of the service at that time and funding. With the re-organisation of the service, the project lead/team decided to try again. The community cardiac service submitted an application to the Patients First Programme. The programme provides support in terms of a bursary, external facilitation and workshop days to help clinically based nurses to lead local innovations that will improve patient care. The project lead was successful with the application to support the formal development of a patient centred heart failure education programme. Aim of the project The aim of the project was to develop and implement an education programme for people diagnosed with heart failure, in order to promote choice, self-management and individual patient centred care. Objectives The objectives of the project were to: Identify and engage with the key stakeholders Understand the patient experience through a patient focus group Use the patient experience to design a new patient education programme Implement the education programme Evaluate the programme Methods and approaches A number of methods and approaches were used during the project. 3

4 Engaging key stakeholders: nursing staff One of the first steps of the project was to engage with the wider nursing team. In January 2013, an extended regular team meeting was used, at which all nursing staff from across sites would be present. Firstly, the project aims and objectives were explained by the project lead and the nursing team was invited to ask questions so everyone could understand why the project had been started. The project lead felt that it was important to allow the nursing team to establish common ground in relation to values when striving to achieve patient centred care, allowing in-roads to be built to begin developing working relationships within the team and to start the development of a shared vision. In order to achieve this, the project lead facilitated a values clarification exercise around patient centred care (Warfield and Manley, 1990). While attending one of the workshop days as part of the Patients First Programme, the project team had been introduced to the concept of values clarification and the exercise developed by Warfield and Manley. It was decided by the project team to undertake this exercise with the nursing staff back in practice. The exercise was introduced by talking about what had been covered and experienced during the workshop days. The project team explained that this concept was relevant to the wider team in order to understand what we, as individuals believe in order to establish how this can then be translated into a shared team vision. The nursing team discussed the concept and the purpose of doing this and then as a group, brainstormed ideas using a flip chart and wrote points down so team members understood how the exercise worked. Everyone was given an individual response sheet (see Figure 1 below). This was to be completed and sent back to the project lead. These were then reviewed by the project lead and common themes were grouped together. 1. I believe the purpose of patient centred care is 2. I believe the purpose can be achieved by 3. I believe that the factors that will help us achieve this purpose are 4. I believe that the factors that will hinder us from achieving this purpose are 5. Other values I beliefs I consider to be important Figure 1: Values and beliefs clarification exercise (Warfield and Manley, 1990) The results of the values clarification exercise, based upon the responses, comments and thoughts, were fed back to the nursing staff at a subsequent team meeting in March 2013 (the FoNS project was an item on the agenda to be reviewed monthly). The results of this exercise demonstrated the team did share common values and beliefs. These included: choice partnership individuality safety being a competent up-to-date practitioner being open to communication between patients and the wider team This exercise and the subsequent discussion was the launch of the project and became the basis for a shared vision for developing patient centred care. An unintentional outcome of this exercise was that this also formed the beginning of the integration of the three teams as it helped to demonstrate that although individuals were from separate teams, they had shared values and beliefs around achieving patient centred care. The project lead and other nurses were surprised by the similarity in beliefs as this was not always demonstrated in practice by individuals. It helped develop a wider team vision and demonstrated wider team thinking. It was hoped by the project lead that this exercise would be the start of enabling the nursing teams to start developing into one large team 4

5 and change practice organically through reflection and discussion, allowing team members to be involved in any change to benefit patients and promote patient centered care. Identifying the wider stakeholder group Key stakeholders were identified at the third team meeting. Firstly, the term stakeholder was discussed and agreed as anyone who was relevant to the patient and the education group. The identification of stakeholders was done through discussion and a brain storming exercise using a flip chart facilitated by the project lead. The stakeholders highlighted were then contacted via and in person at forums and meetings. The project team attended meetings and events where key stakeholders were present, such as the local cardiac network forum and multi-disciplinary team meetings. The project aims and objectives were discussed with these stakeholders present. This was then followed up by an to give time for the stakeholders to think about the project and what they thought should be included in a patient centred heart failure education programme. It was agreed an would be the best way to gain a response as several key stakeholders were not based in the CCS location. The was also sent to all members of the internal multi-disciplinary team (MDT) often based off site at the local secondary care sites. The MDT consisted of specialist nurses, a consultant cardiologist, support workers, general practitioners with specialist interest (GPwSI) in cardiology and a clinical psychologist. The following two questions were asked: 1) Do you believe patients would benefit from a heart failure education programme? 2) What do you believe to be the main topics that should be covered? The project team received a response from most people via and other feedback came at local forums or meetings verbally in person. One consultant responded, both GPwSI cardiology responded and all of the secondary care heart failure nurses responded along with one support worker and the clinical psychologist. All those that responded described the benefit of patient education and felt that the session would need to be heavily influenced with information regarding the condition and how best to manage it. The perception from clinicians was patients would need to know about their condition in order to manage symptoms. To do this, patients would need an explanation of self-care strategies and know when to seek help and support. This view is supported by several studies in relation to living with heart failure (Cline et al., 1998; Jaarsma et al., 1999; Koelling et al., 2005). Other than the psychologist, this was very much based on a clinician centred approach. It was understood that there is a need to impart information due to the significant amount of time nurses spend discussing the condition in patient consultations so that patients can respond to symptoms at an early stage before deteriorating further, however it was also felt by the project team that for this to be truly patient centred, then it needed to address the condition on not only the physiological level, but also emotionally and psychologically, something that is discussed by Stromberg (2005) in her paper on the role of patient education in heart failure management. She also discusses the need to have patients involved in the design of educational materials and models, something the project team were very keen to do. After the psychologist received the , a meeting was agreed to discuss her thoughts and the project further. This led to the psychologist giving a perspective on how patients view illness and the impact this has on the person including motivation to make changes. The psychologist gave examples of how the Prochaska and Velicer change model (1997) could be used to understand if patients were ready to make the changes in their lives to support their health. This had recently been used in a weight management group developed by the psychologist and it was felt it could be useful tool for the project. 5

6 Having the psychologist as part of the project was seen as important as this encouraged the team to think about barriers to learning that patients might have and how the wider nursing team might have preconceived ideas about how patients should behave with regard to their illness. Setting up the patient focus group It was agreed early in the project at a team meeting that it was important to understand what patient needs actually were and whether nursing staff s perceptions were in line with them. The project team wanted the education sessions to be patient centered and developed with patient involvement, as highlighted by Stromberg (2005), so they truly addressed the issues that were important to patients. The project team wanted to gain a real understanding and insight into patient experiences of being diagnosed and living with heart failure on a day-to-day basis and felt this understanding could be a strong catalyst to promote change in current practice within the wider team. It is well documented in studies (Cline et al., 1998; Bjorck Linne et al., 1999; Jaarsma et al., 1999; Bjorck Linne et al., 2000; Stromberg et al., 2003; Stromberg, 2005; Jarsma, 2005; Grange, 2005; Nicholls and Richards, 2007) that good self-care education is essential to enhance patient empowerment and control over their condition. Firstly, the trust research and development team were contacted to see if ethical approval was required. The aim of the project and its methods were submitted by the project lead. The research and development team felt that the project constituted a practice development project rather than a research project and therefore formal ethical consent was not required. However, to follow good ethical principles, a consent form was developed (see Appendix 1) and signed by the patients to demonstrate evidence of written consent to contribute to the focus group. After that, the practice development facilitator from FoNS was invited to a nursing team meeting to meet the wider team and to discuss options on how best to move forward collecting patient perceptions and priorities for a heart failure education programme. Several methods were discussed including patient interviews, questionnaires and a patient focus group. The team was introduced to the concept of capturing patients emotional responses to situations that are unique to their own experiences using a modified emotional touchpoint tool and how this could be used in practice (Bate and Robert, 2007 cited by Dewar and Mackay, 2009). Initially templates for the invitations were sent to the communications team but it was felt that the result was too corporate and did not convey the theme of the day. Therefore funding from the bursary supplied by FoNS was used to support the project team to purchase what was needed in order to be creative and develop personal invitations. It was felt by the project lead that certain patients may find it difficult to participate in the focus group, because it was focused on feelings, so it was decided that in order to ensure all felt comfortable about participating, that the invitation would be worded as asking for ideas, experiences and valuable opinions relating to heart failure. It was agreed at a team meeting that patients would be approached initially by staff during a consultation and given background information about the focus group and asked if they would be interested in attending. Invitations were then sent in the post to patients that had expressed an interest across the three boroughs. One hundred invitations were printed and distributed across the three London boroughs, 13 patients attended. Refreshments were supplied taking into account the patients individual dietary requirements using the bursary money to fund this expense. Two weeks before the focus group, the project team met with the FoNS facilitator to organise the structure of the day and an itinerary for the morning was developed. It was decided that the group would last 2 ½ to 3 hours. We would divide the morning into two parts: The first part would use an adapted emotional touchpoint tool to discuss and share patients experience of being diagnosed with heart failure 6

7 The second half of the morning was to discuss and share experiences of living with heart failure The team believed the adapted emotional touchpoint tool could be very powerful and enable the project team to gain a true understanding of each patient s individual perspective. A series of emotion words were printed on cards and laid out on a table. The patients were asked to share their story and discuss the emotions they felt around aspects of their experience using the emotion words as prompts. The group was divided in two to make it more manageable and the facilitators asked the first person to identify with the emotion cards laid out in front of them. They then talked about why they had picked a specific emotion and shared their personal experiences, detailing what positive and negative emotions they had had and why. The facilitators wrote down the key emotion words that were being expressed. The facilitator also gave everyone an opportunity to talk and keep the focus on the topic in hand should it digress. The facilitators were also aware of the sensitive nature of the topics and people s reactions to what was being discussed. Key themes coming from patient stories and experiences would then be taken back to the team meeting. Common themes emerged about people s individual stories and experiences. It became evident from the language used that there was a lot of frustration from participants around their diagnosis, and how and when it occurred. It was evident that for many people, it was tied up with an acute admission to hospital and in many cases they were critically ill and experienced an extremely stressful time in their life. The day-to-day experience of living with heart failure, along with no clear understanding about the meaning of heart failure, were revealed. The use of this method allowed patients within the group to share their stories of being diagnosed with the condition and how this had impacted on their lives. It was seen as a tool to allow the psychological and emotional aspects of the condition to be acknowledged. This was essential and needed to be addressed within the education programme. The project team felt that the adapted method assisted the nurses to re-focus care back to patients and focus on their needs rather than the nurses and healthcare professionals own priorities, enabling the team to develop and deliver a programme that is responsive to the needs of the patient group. Subsequent team meetings and changes in practice This project began at a time of change within the services, with the amalgamation of teams. There was agreement at the staff focus group that monthly progress and challenges would be discussed at the regular CCS team meeting. This would be an item on the meeting agenda, to ensure timelines were tracked and allow a place for reflection and for the wider team to feel involved and be able to contribute. Discussion at these meetings established that the current services could be developed further. Through these discussions, areas where there was a need for change and where practice could be improved grew organically from the team. Not everyone saw this as a priority, however keeping the focus of the meetings on patient centred care enabled the basis for any change. At the start of the project, the team was unaware of the impact the project would have. However, it became apparent at team meetings, through discussion and reflection, that the team wanted to standardise other areas of practice and benchmark good practice from each borough by developing efficient processes and sharing information and resources. The project encouraged staff to look at other areas of practice and consider how nursing contact with patients impacted on patients. The reflection and discussion at team meetings resulted in changes in practice, which are described below. 7

8 Changing clinic letters An example of these changes was in the clinic letters containing clinical information from the patient consultation. Clinic letters sent to patients were different in each borough. Through reflection on how the team has contact with patients, letters became a focus for discussion. It was agreed that there needed to be a standardised letter format to ensure equity, quality and consistency. The new letter would include a self-management plan, rather than a stand-alone clinical management plan agreed by the clinician and the patient. The aim of this was to continue to reinforce selfmanagement of heart failure and increase awareness of the patient s ownership through another medium. Additionally, the team felt the word clinical encouraged the patient to believe the responsibility belonged to the clinician rather than themselves. The team also wanted selfmanagement information for patients to take home after reflection upon practice at the clinical meetings. Nurses could then also use this information in their clinic reviews to support patients further with jargon free literature. Developing patient information leaflets Another development as a result of discussion and reflection at the team meetings was the development of patient information leaflets. The project lead was committed to this idea and the CCS lead nurse developed the initial leaflet on one side of A5. This was sent back to the team and suggestions sought for development. The project lead felt strongly that the messages needed to be succinct, direct and in non-clinical language. After several weeks, an A5 leaflet was completed with seven tips on self-management on one side, and an explanation of common drugs on the reverse. The team wanted it to be jargon free and be in terms patients could understand and relate to. This is has now been passed by the governance team in the organisation. Using ipads to demonstrate the working of the heart Over several meetings, the project team and the clinical lead nurse discussed options for how the project was to be developed. It was decided amongst the project team that information would be better delivered using a variety of different mediums not unlike those used by Bjorck Linne (1999) in the randomised control trial. Members of the project team had used ipads and were aware of how applications (apps) could enhance and develop learning and make explanations and messages clear by using contemporary media. How people learn, barriers to learning and also the possibility of cognitive impairment due to the age group and illness were considered. The team therefore wanted to use other forms of media to support patients in addition to leaflets and written material. This was something that is also recognised by Jaarsma (2005) and Stromberg (2005) who state, for heart failure patients over the age of 65 years, 57% will have some degree of cognitive impairment, compared to 20% of that age range without heart failure. The team considered whether some of the funding from the FoNS bursary could be used to purchase ipads for the teams to use in their consultations to help demonstrate, in three dimensions, examples of the heart pumping and what was happening when the heart was impaired. However it was agreed to apply to the North East London Foundation Trust (NELFT) for this funding as the trust was running an initiative called Innovation Cave. Under this initiative, the trust board invited staff to put together a bid for funding to support current initiatives that staff were implementing to improve patient care. Two members of the project team submitted an application. As the team had been successful in the application to be part of the Patients First Programme, they had confidence to apply for further support and build upon existing success. A business case was submitted for the ipads and the team was short-listed and then asked to present the business case to members of the Trust Board of Directors. Two members of the project team delivered the presentation and were successful in securing 3500 to purchase the ipads, apps for the ipads and a pocket projector, so that they could be used during an education programme and in patients homes. The apps purchased are three dimensional and interactive and show the heart as a moving pump, the electrical circuits and 8

9 blood flow through the heart. They are used in daily consultations and will be used as part of the education programme going forward. Feedback from patients has been positive and it appears that using 3D images is more powerful than clinicians drawing simple sketches or using two-dimensional pictures and demonstrating the heart s movements with their hands. They allow patients to understand visually what is happening and why symptoms which they may be experiencing develop. This in turn contributes to understanding why self-management and taking medication are important. One of the Board members was the Director of Nursing who also had supported the team vision and their initial Patients First Programme application. Regular meetings with the Director of Nursing Regular meetings with the Director of Nursing were arranged to discuss progress and difficulties, allowing the project to maintain momentum. The project was also a regular agenda item at the monthly team nursing meeting which allowed an opportunity to discuss critical talking points with the wider team, allowing ideas to be developed and discussed. It also created an opportunity to agree plans of action to help with challenges and next steps and to evaluate successes and developments. Listening to all ideas from the team provided a forum for continued participation by team individuals. This was viewed as having a positive effect on the team and an opportunity to contribute to service development with time and space to think creatively about the care provided. Developing and implementing the education sessions The education programme is still in its early days of development. It is anticipated it will have an informal agenda but will still have a framework and structure to enable and teach self-management strategies, with peer support, as this may mean strategies are adopted more easily or listened to. The plan is to have a group session with a clinical psychologist and the clinical nurse specialist facilitating the session. Starting with discussing what the condition of heart failure is and what this means and why people have been invited to attend. This would then move to an open forum with support from the clinical psychologist to discuss what patients priorities are, what they are doing well or if they re struggling. The clinical nurse specialist can then advise on other issues depending on what is identified by the group. During the initial patient focus group it became evident that when individuals were talking about their emotions, there was a lot of support in the room from other patients. The plan is to encourage this support from others in the room to help individuals who are struggling to develop ways of coping with the condition. The patient will also have individual sessions with the nurse in their clinic appointments Implementing the programme into practice has been the principal challenge towards the latter part of the project. This coincided with staffing issues across several of the boroughs amongst the nursing team, which has severely limited time for the project. The blueprint has been developed and the groundwork has been done. Once the service is back to its full complement of staff, this will be recommenced and a formal evaluation of the sessions can be undertaken. The aim is to ensure the programme is not an add on but is incorporated into the patient journey from their first contact with the CCS. There is now a new clinical psychologist in post who is very keen to develop and work on the project. This has also given the project a new impetus. Key Learning During the course of this project, the project team have developed an understanding of approaches, tools and techniques used in relation to service development. They have grown in confidence and have developed a greater understanding of the experience of this particular patient group. The team has had practical experience facilitating and developing creative and innovative ideas and has put them into practice, having a real impact on practice 9

10 Approaches, tools and techniques Developing the education programme has been successful in terms of following a systematic approach engaging key stakeholders and increasing team awareness around service development. The team now have a concept, developed internally through engagement and dialogue with stakeholders, which has led to the programme being more than a taught education session. The team is now aware of tools that can be used to reflect upon practice and how to then implement this. Examples of this include the staff meetings and patient focus groups. It has empowered confidence e.g. submitting the application for other innovation initiatives. The project lead contacted the trust research and development department and submitted a short paper outlining the project, which would not have been possible while nursing on a day-to-day basis and without the confidence developed through facilitating this project. Growing confidence within the team after engaging with patients has been enhanced further having successfully secured funding for the purchase of ipads and their use during the consultations. Understanding the patient experience Holding the patient focus group and using the adapted emotional touchpoint tool was a very powerful way of truly identifying with the person who has been diagnosed with this condition and listening to their perspective. Collaboration with stakeholders has allowed clinicians greater insight into the enormity of this condition and how it affects patients lives and their daily experiences from the patients perspective. Nurses in the team always understood this anecdotally, now tools and processes have been used to engage patients and other key stakeholders to forge dialogue and demonstrate that a team that is listening and being open can produce a blueprint for a programme through a collaborative approach. The impact on practice The team has gained a greater insight regarding patient centred ideas, resource tools and processes and the contribution this has to service delivery. Small changes in practice have been achieved as a result of the project. Using tools to articulate patients individualised experiences and then to use these to develop an education programme has been an extremely powerful learning point with a ripple effect through practice. The project has also reinforced the importance of psychological insights into the condition and how closely psychological and physical health are linked. This has then led to support sessions from the psychologist for staff and clinical reflection with the psychologist present. The ultimate aim is to achieve both intellectual and emotional engagement with patients in order to facilitate both emotional and physical well-being and for them to understand and ultimately manage their condition to the best of their potential. Conclusion The education programme planned at the start of the project is very different to the original vision, as a result of being involved in the Patients First Programme and is different to what was previously trialled. The plan is for the programme to be interactive, flexible to individual needs, promote support from peers and to deliver practical consistent nursing support. It is planned that this will be implemented when there is a full complement of nursing staff to support its delivery. The project team and the wider nursing team have gained practical tools to support patient and stakeholder engagement rather than going ahead what they believed was right, resulting in a collaborative approach, working with all stakeholders leading to greater awareness of the concept that patients and staff are more likely to listen to you once you are actively listening to them. 10

11 Recommendations and Implications for Practice Reflecting upon the project, the team came to realise that it is very important to embrace support and advice from outside for example from the FoNS facilitator and from the other project teams who are on a journey The team learnt during the project not to be too focused on the end result and began to appreciate the process of reflection while being open minded to creative approaches to develop and analyse practice along the way. The team also celebrated both their own and other teams successes along the way The project lead was aware of difficulties recruiting a specialist nurse to backfill their role and allow them time to concentrate on the project. Progress made as part of the project has been in the main on top of existing clinical commitments. Therefore a recommendation would be to advertise for a secondment for a nurse to support the practice development role for the clinicians involved. This could be achieved from the bursary money awarded as part of the FoNS programme References Bate, P. and Robert, G. (2007) cited by Dewar, B. and Mackay, R. (2009) Using emotional touchpoints to learn about the experience of receiving care. Improving Experience Briefing. Vol. 4. February. Bjorck Linne, A., Liedholm, H. and Israelsson, B. (1999) Effects of systematic education on heart failure patients knowledge after 6 months: a randomised, controlled trial. European Journal of Heart Failure. Vol. 1. No. 3. pp Bjorck Linne, A., Liedholm, H., Jendteg, S. and Israelsson, B. (2000) Health care costs of heart failure: results from a randomised study of patient education. European Journal of Heart Failure. Vol. 2. No. 3. pp British Heart Foundation (2015) Heart Failure. Retrieved from (Last accessed 15th September 2015). Cline, C.M.J., Israelsson, B.Y.A., Willenheimer, R.B., Broms, K. and Erhardt, L.R. (1998) cost effective management programme for heart failure reduced hospitalisation. Heart. Vol. 80. pp Grange, J. (2005) The role of nurses in the management of heart failure. Heart. Vol. 91. (Suppl II). pp ii39-ii42. Jaarsma, T., Halfens, R., Abu-Saad, H., Dracup, K., Gorgels, T., Ree, J.V. and Stappers, J. (1999) Effects of education and support on self care and resource utilization in patients with heart failure. European Heart Journal. Vol. 20. pp Jaarsma, T. (2005) inter-professional team approach to patients with heart failure. Heart. Vol. 91. pp Koelling, T., Johnson, M., Cody, R. and Aaronson, K. (2005) Discharge education improves clinical outcomes in patients with chronic heart failure. Circulation. Vol pp National Institute for Health and Care Excellence (2010) Chronic heart failure: management of chronic heart failure in adults in primary and secondary care. Clinical Guideline No Retrieved from: (Last accessed 11 th June 2015). Nicholls, G. and Richards, M. (2007) Disease monitoring of patients with chronic heart failure. Heart. Vol. 93. No. 4. pp Prochaska, J.O. and Velicer, W.F. (1997) The trans theoretical model of health behavior change. American Journal of Health Promotion. Vol. 12. No. 1. pp Scottish Intercollegiate Guidelines Network (2007) Management of Chronic Heart Failure. Edinburgh: Scottish Intercollegiate Guidelines Network. Stromberg, A., Martensson, J., Fridlund, B., Levin, L.A., Karlsson, J.E. and Dahlstrom, U. (2003) Nurseled heart failure clinics improve survival and self-care behaviour in patients with heart failure. European Heart Journal. Vol. 24. pp

12 Stromberg, A. (2005) The crucial role of patient education in heart failure. The European Journal of Heart Failure.Vol. 7. pp Townsend, N., Wickramasinghe, K., Bhatnagar, P., Smolina, K., Nichols, M., Leal, J., Luengo- Fernandez, R. and Rayner, M. (2012) Coronary Heart Disease Statistics. London: British Heart Foundation. Warfield, C. and Manley, K. (1990) Developing a new philosophy in the NDU. Nursing Standard. Vol. 4. No. 41. pp

13 PATIENT CONSENT FORM 25 th February 2013 Heart Failure Focus Group Please initial each box if you agree: I understand that I am volunteering to take part in this Focus Group and that I may pull out at any time without giving reason. I understand that I may contact the facilitator Marcus Donnelly if I have any questions or concerns at any time during the Focus Group. I understand that quotations from me may be used in study reports and in the heart failure programme, but these will be anonymised.. I agree to take part in this Focus group Name Date Signature Facilitator Name Date Signature One copy of this form will be left with you, and one copy taken by the facilitator 13