Personal and Public Involvement (PPI) Annual Report January 2016

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1 Personal and Public Involvement (PPI) Annual Report January 2016 Foreword Welcome to the Northern Trust s Personal and Public Involvement (PPI) Annual Report. I would like to take this opportunity to thank all the individuals and organisations that have taken part in our consultation and engagement activities over the past year, and shared their experiences of using local services. Your contributions have helped to inform our decisions, ensuring we continue to provide excellent and responsive services. This year has been a busy one for all our staff and we hope that this report helps to inform you of the wide range of work that service users, carers and the public have had the opportunity to be involved in. This year we launched a new vision and values. Our vision is To deliver excellent integrated services in partnership with our community. Partnership is a strong element of our vision and it is also a strong element of the culture we want to create. We want to work in partnership with staff, patients, service users, families and local communities to design and deliver excellent services. Our new CORE values of Compassion, Openness, Respect and Excellence will now underpin all that we do. We want to engage with everyone who has an interest and a stake in the delivery of health and social care in our area. We want the conversation to include patients and communities, Trust staff and professional bodies, our partners in health and social care, clinical professionals, the public and politicians. If you would like to get involved in the work of the Trust, please contact the Equality Unit, contact details are at the end of this report. 1

2 Background About us The Northern Health and Social Care Trust was established on 1 April In serving a population of approximately 465,000 people, we provide a wide range of hospital services, community care and social services. Our staff work closely with a range of other agencies including general practitioners, independent providers and community/voluntary groups. We currently employ 11,711 staff across a range of disciplines and professions including nurses, social workers, doctors, allied health professionals, and many other technical and support staff. What is personal and public involvement? Personal and public involvement (PPI) is an umbrella term used to describe the engagement, active participation and partnerships working with those that have an interest in our business. This includes anyone or group of people who use services directly or indirectly, the communities we serve and their representatives. PPI is based on the recognition that people in receipt of services should be actively involved in decisions affecting their lives and should fully contribute to any planning, decision making and feedback about their own care or treatment. PPI regional standards In March 2015 the Department of Health Social Services and Public Safety (DHSSPS) launched the five new regional PPI standards below. We are committed to meeting these standards in all the PPI work we do. Leadership HSC organisations will have in place clear leadership arrangements to provide assurances that PPI is embedded into policy and practice Governance HSC organisations will have in place corporate governance arrangements to provide assurances that PPI is embedded into policy and practice Opportunities for involvement HSC organisations will provide clear and accessible opportunities for involvement at all levels, facilitating and supporting the involvement of service users and the public in the planning, delivery and evaluation of services Knowledge and skills HSC organisations will provide PPI awareness raising and training opportunities as appropriate to need, to enable all staff to deliver on their statutory PPI obligations Measuring outcomes HSC Organisations will measure the impact and evaluate outcome of PPI activity 2

3 Our approach The views of services users, patients, carers and the public, matter to us. We want to involve them, as well as our staff in the decisions we make. We believe that by working with service users, patients, carers, patient organisations and the public, we are able to develop services for all our communities. We engage in a number of different ways, tailoring our methods to meet the needs of those we are involving and supporting people to be able to participate effectively. When there are decisions to be made which affect how we will provide our services, we make sure we talk to service users and carers who will be most affected and the general public are made aware of proposals so they too have the chance to have their say. We recognise the importance of proper and timely consultation as an integral part of fulfilling our statutory obligation to PPI. Following all Trust consultations, feedback is considered by Trust Board. Feedback reports are posted on the Trust s website and Staffnet and consultees are informed of the outcome of the consultation process. We continue to maintain an up-to-date and relevant database of consultees to ensure appropriate consultation and engagement. This database is updated annually and we regularly send Newsletters to everyone listed. The Involving You section of the Trust s website supports effective communication and consultation with service users and carers and provides ongoing support and guidance. We carry out one off pieces of work as well as involving service users and carers on an on-going basis through the partnership arrangements we have in place. Working in partnerships with community and voluntary sector groups and networks helps us to promote engagement of local people and identify local needs. We have established close working links with the Patient Client Council (PCC). A representative from the PCC sits on our User Feedback and Involvement Committee which is a sub-committee of Trust Board and meets four times a year. A representative from the PCC is also a member of the Trust s PPI Steering Group and we meet with the PCC regularly to discuss any issues in relation to complaints. As a result of the PCC Survey in our Emergency Departments we reviewed our communication systems and are committed to keeping patients better informed and developing leaflets and posters to explain different pathways. Awareness of PPI is an integral part of Corporate Induction and is incorporated into many other training programmes. The Trust s Personal and Public Involvement (PPI) toolkit provides staff with a road map to engaging 3

4 with stakeholders. In addition, face to face training has been provided for key staff to ensure they have the skills to engage effectively with service users and carers. An awareness pack of slides has been developed and is available on Staffnet for team leaders/managers to use in awareness sessions. Join one of our Locality Engagement Forums We are setting up a Locality Engagement Forum in each of our four planned localities to establish ongoing engagement with local people. If you would like more information on how you can join a Forum please visit our website or contact the Equality Unit. Our user groups The Trust User Forums are established groups of individuals and representative organisations who have a keen interest in the standard and quality of our services. They work in partnership with Trust staff to ensure their views are part of the planning, delivery and monitoring of services. Tony Stevens meets members of user panels 4

5 Disability Consultation Panel During 2014/15 the Disability Consultation Panel welcomed a number of new members and it continues to grow from strength to strength. Panel members helped to deliver disability equality training to Trust staff. During the year members were actively involved in the design of the Ballymena Health and Care Centre, ensuring that the building, signage, lighting and furniture is accessible for people with a disability. The Forum The Forum is a user group for adults who use learning disability services. This year the Chair of the Forum, Ursula Campbell, spoke at the Trust s Leadership Conference, reflecting on what the Trust s CORE values mean to people using our services. Members of the Forum have been involved in the development of the Trust s Personal and Sexual Relationship Policy for Adults with a Learning Disability and four members have been trained to sit as voting members on interview panels for staff in learning disability services. We feel that including people who use our services in recruitment is the pinnacle of user involvement and can fundamentally change the power dynamics and culture of the interview process. It makes a clear statement about the significance we attach to involve people who use our services and sends a strong message to candidates about our values. Members have also been involved in discussing a number of issues at the meetings, including the proposed closure days for Adult Centres and the development of easy read information. The Forum s current focus is on experiences in emergency departments and hospital admissions. 5

6 Older People s Panel During the year members of the Older People s Panel appointed Thelma Dillon as their new Chair. Membership includes representative organisations, community networks and a number of older people who come together to ensure that users of health and social care services and their representatives, have an opportunity to provide feedback and to discuss their views directly with Trust staff. Members also come together to develop a joint response to regional and local consultations. The Panel also provides an opportunity for staff to present information about their service and to respond to queries, comments or concerns. During the year staff from Self Directed Support Service, Homecare and the NI Ambulance Service attended Panel meetings. Palliative Care User Involvement Forum The palliative and end of life care user forum was formally established in September It was agreed that there was a need to develop and grow this user forum, so the members planned to meet 4 times per year. There have been a small number of people interested in the group and membership is approximately 6-8 members; however attendance at meetings has not been consistent. The group developed a palliative care PPI flyer to help with recruitment and this has been distributed via many forums e.g. the Trust s Palliative Care Raising Awareness and Understanding Group, Macmillan Unit, NI Hospice, Trust Carers group and community development. In January of this year the group s terms of reference were refreshed and a member of the user involvement forum sits on the NHSCT Palliative Care Programme Board group which is chaired by the Director of Community Care. This member acts as the conduit from the user forum and raises any issues on their behalf and also feedbacks what has been discussed. To date, the group members have commented and contributed to the development of various documents all which are pertinent to palliative and end of life care. Some examples of these include letters, patient / carer leaflets / booklets, service directory and web page. They have also contributed their views on regional work carried out by the Transforming Your Palliative and End of Life Care and the All Ireland Institute of Hospice and Palliative Care Survey. The group developed an action plan ( ) which they are currently progressing and this includes some local awareness training on aspects of palliative care and the services involved. 6

7 Improving the patient and client The experience Trust has taken forward a considerable amount of work in relation to the 5 core regional Patient and Client Experience Standards of Respect; Attitude; Behaviour; Communication; and Privacy and Dignity. help us to review our service. We gather feedback from service users and carers about their experiences using a combination of service user surveys, stories and observations to identify patterns that During the year service user surveys were carried out in a number of areas including the following. OT Wheelchair Services Maternity Wards in Antrim and Causeway Hospitals Emergency Department, Causeway Hospital Trust Day Centres Parkinson s Nurse Led Clinic Endoscopy Patients Views, Trust-wide Physical Disability Team, Causeway area Catering and Domestic Services 1,355 Northern Trust patients completed the Department of Health, Social Services and Public Safety (DHSSPS) inpatient patient experience survey during the year. In the Trust area 90% of inpatients were very satisfied or satisfied with their care, 91% of inpatients were very satisfied or satisfied with all the staff they came into contact with during their hospital stay and 87% of inpatients were satisfied or very satisfied with their overall experience in hospital. The following improvements have been made as a result of the feedback we received. Nursing teams have developed ward information leaflets for patients and their families Ward Sisters conduct a ward round during afternoon visiting to engage with patients and their families Work is continuing to ensure all staff have name badges and that these are worn Introduction of the Hello my name is... campaign (further details below) 7

8 The Trust has been supporting the Hello, my name is... campaign, which was founded by Dr Kate Granger, a hospital consultant from Yorkshire to improve the patient experience not only in the UK, but across the world. Dr Granger became frustrated with the number of staff who failed to introduce themselves to her when she was in hospital. Dr Granger has terminal cancer and has made it her mission in whatever time she has left to get as many members of NHS staff as possible pledging to introduce themselves to their patients. All Trust staff, regardless of their role, are asked to introduce themselves to patients, clients and service users when they first meet them. This is not only a sign of basic courtesy and respect but also should help patients and service users feel confident and safe while receiving care and build therapeutic relationships and trust. 10,000 Voices is a regional project funded by the Public Health Agency (PHA) giving patients, service users and their families the opportunity to share their overall experience and highlight anything important, such as what they particularly liked or disliked about their experience. In partnership with the Public Health Agency (PHA), we have gathered patient stories either face to face or through surveys in the following areas Nursing and Midwifery Northern Ireland Ambulance Service Care in your own Home Unscheduled Care Emergency Department, GP out of Hours, Minor Injury Units We will continue to give people the opportunity to share their story and provide feedback to our staff so we can learn from what we are told. Of the 6,500 stories returned regionally, almost 1,300 stories relate to the Northern Trust. A high volume of stories illustrate public recognition of staff compliance with the Patient and Client Experience Standards. Up to 90% of experiences have been rated by patients, service users, or families as either strongly positive or positive. 8

9 Learning from complaints and user feedback We welcome and actively encourage complaints and compliments about our services. We recognise the importance of working with patients, clients, their families, carers and others to deliver, develop and improve our services and how important it is to listen and take their views seriously. Information from complaints, as well as the comments and suggestions we receive is shared with our Trust Board. Trust Board also hear about how we have taken action and learned from the complaints we have received. Engaging with family carers Within the Trust area it is estimated that there are 53,507 family carers. Carers have a vital role to play in the health and wellbeing of the general population. Their role is immeasurable and it is important that they are supported and that services for carers are integral to all health and social care services. For this reason there has been a wide range of mechanisms established to ensure that the voice of the carer is heard and that carers can input to the future planning and delivery of our services. Our Directory A-Z for Carers is for anyone who is looking after someone at home, and is an invaluable source of information about carer support from the Trust and community/ voluntary organisations. During the year we updated the Directory in partnership with Carers Northern Ireland who consulted with their members and other community/voluntary based organisations about additional material that could be included. The Trust s Carers Strategy Steering Group continues to take forward the implementation of the regional Caring for Carers Strategy. Membership includes individual carers as well as a representative from Carers Northern Ireland and the work taken forward is based on the principles of partnership working and user involvement. To further enhance partnership working with regard to carers, the Trust funds Carers Northern Ireland to provide an Information and Support Project for Carers. This project includes supporting a number of carers groups throughout the Trust area as well as support for individual carers. As part of the partnership arrangement, Carers Northern Ireland carried out a carer satisfaction survey of Trust Adult Centres. Feedback illustrated that carers using this service are satisfied in general but they made a small number of recommendations concerning activities and opening hours. 9

10 We have worked with the Department of Finance and Personnel on a project focused on connecting family carers to information and communication technology and have consulted widely with carers through a survey and focus groups. This project will continue through 2016 and will engage with libraries in improving access to information. As the number of male family carers continues to grow there is recognition that Trust carers support events may not fully meet the support needs of men with a caring role. A pilot survey was undertaken with male carers within our dementia service to find out about the issues they face and the type of support that could be provided in the future. This has resulted in carer support events targeted specifically at men. We continue to run carer support events in all areas of the Trust for all services. At the end of each event, an evaluation is completed by each participant, which directly informs planning of future events. During the year we ran a consultation event for black and minority ethnic (BME) carers. The aim of the event was to involve black and minority ethnic carers in the future planning of services and also to raise awareness amongst BME carers, Trust staff and external organisations about the range of services available. On-going engagement with carers is central to the Trust s Carers Coordinator role. The Carers Co-ordinator actively encourages development of carers support groups across all programmes of care, and liaises extensively with voluntary sector partners. The Trust s Carers Register set up as a means of engaging directly with carers, has exceeded the target of an increase per year of 20% growth during the year. During 2016, the Trust plans to establish a carers reference group, a list of carer speakers and a carer consultee list. This will be in addition to our Carers Information Register and will make the process of involving carers in our planning more strategic and targeted. 10

11 Working with black and minority ethnic communities We continue to engage with minority ethnic communities by working in partnership with the Inter Ethnic Forum (Mid and East Antrim) and by Chairing the Ballymena Inter Agency Ethnic Support Group. During the year members of the IEF have been working closely with our childcare teams to ensure we are supporting BME families effectively. The Trust s Good Relations Strategy was launched at the Stronger Together Network s Annual Conference on Tuesday, 10 February 2015 to reflect our commitment to promoting respect, equity and trust in the delivery of our services and employment of our staff. The Strategy was developed in partnership with BME communities through engagement workshops and public consultation and details how we will engage and involve BME communities in the future. We have held a Dietary Focus Group with minority ethnic communities to ensure our menus are inclusive of all dietary needs. As a result a member of the BME community now sits on the Trust s Food Matters Forum. We have also held Traveller and Gypsy Awareness Training for Trust staff to make sure we can engage with and meet the needs of the traveller community. The training was facilitated by two members of the Traveller Community. Our library of translated material continues to expand. This is available on Staffnet and the internet for both staff and service users. During the year we translated family planning and sexual health information into a range of languages. The Northern Ireland Health and Social Care Interpreting Services (NIHSCIS) continues to provide interpreting support for health and social care with 400 self-employed sessional interpreters interpreting in range of 36 languages. The top five languages requested in the Northern Trust area is Polish, Lithuanian, Portuguese, Slovak and Romanian. It is clear that our population is culturally and linguistically diverse and as a result all the self-check in facilities installed in our main hospitals during the reporting period include a variety of language options. 11

12 Examples of PPI projects across the Trust Directory of services for older people We know the key role the community and voluntary sector play in the development and delivery of services for people in their own homes or local community. We have an on-line Directory of Services for older people available on the Trust website at Community Navigator The Causeway locality has celebrated one year of the Community Navigator for Older People Project who has been working hard to improve the relationship between the Trust and the community and voluntary sector for the wellbeing of older people. This has involved setting up a referral system to link older people to community and voluntary services, connecting them with our teams and raising awareness of older people s issues. In one year, 181 people have been referred to the Community Navigator. Domiciliary care service evaluation Our Domiciliary Care Service provides care and support to approximately 2,730 people within their own homes and we continue to monitor the quality of our service. We carry out monthly monitoring visits to service users homes to gather regular direct feedback on the quality of service received and the necessary improvements that should be introduced. Food and Friendship Project The Food and Friendship Project, developed in partnership with the Mid and East Antrim Age Well Partnership (MEAAP), engaged with older people who required assistance with food shopping. Specially trained volunteers accompanied the older people on their weekly shopping trips. Feedback from the older people was very positive with seventy five per cent reporting an increased appetite. One lady commented This scheme adds a sparkle to my life. It makes me want to get up in the morning. 12

13 Service User Consultant in mental health services On 7th April 2014, Marlyn Grant took up post of Service User Consultant for mental health services. Marlyn is a member of the Senior Management Team and is responsible for ensuring the perspective of the Service User is fully represented in the quality and performance of services. As someone who used mental health services from 8 years of age, Marlyn has had a very positive experience and states she wouldn t be here today if it wasn t for the help and support she has received. Marlyn believes that the establishment of a Service User Consultant post in the mental health services is an important development that reinforces commitment to prioritising service user participation in decisions relating to service development and strategic direction. Moreover, it fundamentally puts the voice of the service user at all levels of service delivery, in a consistent way, and therefore impacts on staff s own understanding of service user experience. This affects attitudes and behaviour, and thus promotes a more recovery focused service and improved patient / client experience. Marlyn believes that service user involvement should be an integral part of service delivery and it can be achieved in a way that provides benefits for all. Bereaved by Suicide Our Bereaved by Suicide Service has developed a new model of support and to make sure it is meeting the needs of service users, focus groups and meetings were held with previous and new service users. Questionnaires were also sent to 44 clients who have accessed the bereavement service within the last year. The feedback was very positive and illustrated that the new model is working effectively. Having considered the feedback we are developing a day activity programme. We have also set up support groups for those bereaved by suicide with our voluntary sector partners. Survey of Musculoskeletal Physiotherapy Service Our Musculoskeletal Physiotherapy Service is delivered on 15 sites across the Trust processing approximately 30,000 referrals per annum. Questionnaires were given to patients of the service to determine compliance with standards and gauge the patient experience. A total 398 out of 500 questionnaires were returned giving an approximate return rate of 80%. Feedback highlighted areas of good compliance with 98.5 % of staff always

14 introduced themselves, 100% of respondents being highly satisfied or satisfied with their experience. Other issues have been addressed as a result of the feedback - several departments now offer much earlier or later appointments for patients who are working. To make sure that patients are empowered to manage their condition we are working on the development of easy to understand information. The Rowan I was treated with the greatest dignity and respect The Rowan is the regional Sexual Assault Referral Centre (SARC) jointly funded by the Department of Health, Social Services and Public Safety (DHSSPS) and the Police Service for Northern Ireland (PSNI). The highly trained staff deliver a range of support and services 24 hours a day, 365 days a year to children, young people, women and men who have been sexually abused, assaulted or raped, whether this happened in the past or more recently. The service has surveyed victims and care-givers of child victims of sexual violence and feedback was as follows. 45% indicated they had knowledge of the Rowan in advance of attending which is significant considering most people are attending in acute circumstances (i.e. where the sexual assault has occurred <7 days). 100% of respondents noted when they arrived at The Rowan a member of The Rowan Team welcomed them, introduced themselves and attended to their needs. 100% of respondents confirmed The Rowan team were friendly and helpful. All but one (98%) of the individuals engaging with the service felt listened to and confirmed they were offered support services. 62% of all respondents chose to return to engage with The Rowan Sexual Health Service. Helped my child feel safe and comfortable 14

15 Health improvement initiatives The Focus on the Farm Family Programme was also a six month pilot held in the Glenravel area because of the particularly difficult and stressful spring farm families encountered the previous year. The Programme engaged with a number of farm families to increase knowledge of health wellbeing and safety issues and improve health literacy. Thirty nine people heard a series of consecutive monthly presentations which included information on diet and nutrition, what to do in an emergency on the farm, cancer awareness, mental health promotion and farm safety. Feedback for the families showed that 100% of attendees felt that other farm families would benefit from a similar programme and 94% stated they had made a change to their lifestyle/farm practice. We received valuable feedback from older people during our Free to be me courses held in Antrim and Newtownabbey. The courses were facilitated by a Life Coach and explored the hopes, fears and expectations of the older people who took part. Self-confidence, self-esteem, coping skills and assertiveness were also examined. To the left are the Newtownabbey senior citizens who took part in the course and found it beneficial. Cancer Services We have developed and launched a new cancer services specific website to make sure that everyone affected by cancer can access high quality, reliable information from the comfort of their own home. We have also developed a regional teenagers and young adults starter pack which contains the core information tailored to teenagers and young adults explaining about their cancer diagnosis and also about what care and support there is out there for themselves and family members. This pack has now been rolled out regionally across all 5 Trusts. 15

16 Alongside Cancer Focus we have held workshops for 20 primary schools in our local communities to get feedback on how children can be supported when a significant adult has a cancer diagnosis. During the year we opened an Information Pod in Causeway Hospital in partnership with Macmillan Cancer Support. This pod provides patients, family members, carers and the general public the opportunity to access high quality, reliable information about the different aspects of cancer in a comfortable setting. They also have the opportunity to speak to a healthcare professional who can help tailor the information to their exact needs and explain the information materials if required. Also during the year there have been 5 health and well-being events held in the local community for patients, family members and carers. The tumour groups that were invited to attend were breast, colorectal, haematology and 1 event was a generic event for all tumour types. During these events we gather feedback which helps us to shape future events and find out what other type of support cancer patients and their carers would benefit from. It was feedback from these events that lead us to hosting them in local community settings rather than in the hospital setting as patients said returning to the hospital setting can be too upsetting. Weight Management Pathway for School Nursing The Weight Management Pathway for School Nursing was introduced when one quarter of young people in Year 8 in the Trust area were found to be overweight or obese and parents told us how concerning it was to be notified of their child s weight and the associated health risks by letter without context or support. The issue of overweight and obesity in childhood is often an emotive and difficult issue for parents. Because of feedback we received we now inform parents of their children s overweight or obesity using sensitively guided discussion by telephone. We asked parents for their views and we have used this information to support school nursing teams to de-stigmatise the discussion about children s weight for both staff and parents. We have amended the language and context of the conversations we have. The majority of parents had a positive attitude to the information and advice provided about their child s weight status (88%) and we are encouraged by the positive feedback in the comments we have received. 16

17 Evaluation of the Public Health Nursing Service support for infant feeding Each year new mothers in the Trust are asked for their views on the service that they have received from the Public Health Nursing Team with regard to the care of their new-born infant. A sample of mothers is randomly selected and we phone them to discuss their care with specific reference to UNICEF audit tools designed separately for breast and bottle feeding mothers. The structured open questions allow for qualitative information to be recorded and mothers have all welcomed this opportunity to express their views. Mothers attending local support groups are also invited to share their views and the information gathered is incorporated into mandatory training for nurses and midwives. This feedback informs teams on how we measure the care we provide but more importantly reminds us that the service user is at the heart of the service. Comments from mothers concerned about the condition of a shared space in a Trust facility led to the refurbishment of that space in partnership with the other agencies involved. Small changes big difference Age NI s My Life My Way is person-centred service supporting 240 older people with dementia, and their carers, in partnership with the Northern Trust and Big Lottery Fund. A team of 34 Information and Support volunteers ensure engagement with people undergoing transition through care, especially those who are isolated, hard to reach or at risk of disadvantage. Service users and carers are empowered to make informed, often lifechanging, decisions about their care needs and they receive vital information about local services, social activities and facilities. They are also encouraged to stay independent, to remain connected to family and friends and given opportunities to actively engage and participate in the wider community. 17

18 Food Matters Forum The food that patients receive has had a high public profile and is often used as a benchmark against which patients judge the quality of health services in their local area. The Trust s Food Matters Forum was established in 2014 to make sure that the menu and beverage quality and choice meets the needs of all patients. Whilst it is evident that wholesome and nutritious food aids the patients recovery, there is also a need to focus on delivering food that patients like and want to eat. It should also be acknowledged that in a hospital setting the focus should be on Eating for Good Health to ensure patients recover more quickly. Members of the Forum include managers with responsibility for catering services, nursing and dietetic managers, and public representatives with a particular interest in hospital catering services. We have completed a review of the patient menu and beverage choice and now include more seasonal produce. We are now reviewing the different menu formats to ensure these are as user friendly as possible. Plans are also in progress for the introduction of an enhanced supper option for patients. The key pieces of work being taken forward by the Forum include ensuring that there are suitable menu options available for ethnic minority patients and the presentation and layout of menu formats are suitable for all patient groups. Health Coordinator Project The Health Coordinator Project was set up to tackle inequalities in health in disadvantaged communities by enhancing the coordination of health improvement programmes across Neighbourhood Renewal Areas (NRA). A key aim of the Project is to use a community development approach to involve local people in identifying health priorities and assisting in the design of potential solutions. We have held focus groups with members of the targeted communities and the findings highlighted the benefits partnership working to improve health outcomes for local people. Engaging with Service Users and their Carers about Short Breaks In partnership with the MS Society and Action MS we set up a steering group to review short break provision for people living with multiple sclerosis. We wanted to ensure full and active participation of people living with MS, their families and carers in how they would like short breaks to be provided in the future. Membership of the group included representative organisations and a number of service users and carers. 18

19 We also held engagement workshops across the Trust recognising that not everyone was able to attend the meetings. Acknowledging that a sensible method of reaching stakeholders is to attend existing meetings and forums, the MS Society organised the Trust s attendance at their established network of support groups in the Northern Trust area. The purpose of the targeted engagement was to give people living with MS and their carers an opportunity to freely discuss and provide their input into the review process. Five focus groups were held across the Northern Trust during April and May with 60 people attending in total. As a result of the feedback we have developed an information leaflet to inform those newly diagnosed with MS of support available. Thanks This report has highlighted only some of the progress we have made over the past year, yet it also shows the great potential for making improvements to the experience of patients, carers and the wider public through involving and working in partnership with them to make our services more person-centred. We would like to thank all involved in any of the PPI activity. These include service users, carers, volunteers, the user panels, Trust staff and community and voluntary organisations etc. For further information or support please contact the Equality Unit Route Complex Tel: e Coleraine Road Fax: Ballymoney Mobile Text: Co Antrim BT53 6BP equality.unit@northerntrust.hscni.net 19

20 Tell us what you think. If you would like to comment on any issues raised by this report, please complete this form and return it to: Equality Unit Route Complex 8e Coleraine Road Co Antrim BT53 6BP You can also us at: If you provide your contact details, we will acknowledge your comments and pass them to the appropriate departments for a response if need be. Name Address Comment: 20