Our Year 2012/13 1
Our vision A health and social care service that is shaped by patients, clients, carers and communities. Our purpose To be an influential and independent voice that makes a positive difference to the health and social care experience of people across Northern Ireland 2
Welcome to Our Year It has been another very busy year and the Patient and Client Council have been working hard to have the people s voice heard in health and social care. We published the Peoples Priorities for Transforming Your Care Report and presented this to the Minister and the Transforming Your Care team as part of the consultation process. We will continue to represent the interests of patients and their families as Transforming Your Care is implemented. This year we published our first annual Complaints report and also ensured that young people had their say in health and social care through the Young People s Priorities report. We also undertook a number of projects in areas such as Urgent Care and Transport and also held our first User Carer Celebration event. Working together with patients and service users we have continued to develop the Patient and Client Council Membership scheme. We would like to thank the many individuals, groups and membership scheme members who took part in the various events and meetings held throughout the past year and for the generosity with which they gave their time and shared their experiences. We would also like to thank our Board and Local Advisory Committees for their continued hard work and commitment to the Patient and Client Council. The Patient and Client Council seeks to make a positive difference for people and this year our work has resulted in the following significant developments which have improved communications about health and social care to people across Northern Ireland. 3
In November 2012, at the request of the Patient and Client Council, the Department of Health issue a leaflet to every home and run a series of public meetings and engagement forums across Northern Ireland. The improvement of the signage and information for patients and carers at the Royal Group of Hospitals site and Antrim Area Hospital sites. The commitment from the Health and Social Board to agree to provide a single online source of advice and information on a health and social care for people in Northern Ireland. In the following pages you will see some of the work we have been doing and how this is making a difference to the experiences of people using health and social care services. Maeve Hully Chief Executive 4
Listen and act on people s views This year, we listened to the concerns and views of people across Northern Ireland. People told us what was important to them in health and social care and what they want future services to look like. We have acted on what they said. As a result of sharing patients concerns and getting patients directly involved with service planners and providers, there have been a number of changes happening across Health and Social Care, which are making a positive difference for people who require care at home, transport to and from Healthcare facilities and urgent care services. We held nine roadshows throughout Northern Ireland to give service users the opportunity of having their say on Transforming Your Care. At each venue there was a panel of health and social care leaders who answered questions. In total nearly 600 people attended these roadshows. All opinions expressed were fed into the Transforming Your Care consultation process. We lobbied for an increased public engagement and for information to be provided to every home in Northern Ireland. Following this the Department of Health and Social Services issued over 70,000 leaflets explaining Transforming Your Care and ran a series of public meetings and engagement forums. 5
Encourage people to get involved This year our Membership Scheme has grown to 9,500 people. Maeve Hully, Deepak Samson and Louise Skelly launch the Membership Scheme Bus Campaign to encourage more people to join us. Our members receive monthly Updates which gives information on opportunities to get involved. This year we were able to offer 30 such opportunities to members. Everyone can join to have their say about health and social care services. The Patient and Client Council hosted a User Carer Celebration in the Spires Conference Centre, Belfast to recognise those service users and carers who have made a positive contribution to health and social care. Over 150 service users and carers from across Northern Ireland attended the event. Winners of the Making A Difference Award 2012 were the South Eastern Trust s Project, Service Improvement in Addictions, based at Downshire Hospital, Downpatrick. Dr Siobhan Flanagan and the rest of the project team accept the award at the Assembly Buildings, Belfast. On the day we were able to highlight good practice in user involvement and encourage others to get involved. We presented the Making a Difference Award to the South Eastern Health and Social Care Trust but due to the high standard of the examples we saw all entrants were commended. 6
This year the Patient and Client Council worked with patients and carers, the Pain Alliance for Northern Ireland and other voluntary and community organisations to promote the need for the development of a regional plan for pain management. We held a Pain Policy event at Stormont which was attended by the Minister of Health and members of the Health Committee and we also organised a PAIN Summit to bring together patients, carers, employers, clinicians, commissioners and healthcare decision makers to discuss what it s like living with chronic pain. We are now working with patients to develop proposals to undertake a survey of chronic pain throughout Northern Ireland. 7
Helping people make a complaint In 2012/13, the Complaints Service managed 1,274 contacts from patients, clients, carers and members of the public. This is an increase of over 20% from last year. This included helping people to write letters, making phone calls and going to appointments. This year saw some new developments in our complaints support service. The function was centralised into one team and a Complaints Services Manager was appointed, we published our first Annual Complaints report, we developed a service to support prisoners who wish to make a complaint and we launched a new outreach clinic in the Citizen Advice Bureau offices in Derry/Londonderry. Provide advice and information We provide advice and information to people about health and social care. We have continued to develop our interactive website and social networks, so people can follow the work of the Patient and Client Council, discuss Health and Social Care issues and find events happening in their area. A lot of information about the work that we do and the places we visit is on our website www.patientclientcouncil.hscni.net This year over 18,000 people visited our website, 850 now follow us on Twitter and 460 people are part of our Facebook community. 8
This year in your community It is important we know what is going on in local communities. Key to this is our Local Advisory Committees. The Local Advisory Committees are made up of local people and provide insight into individual and community concerns. Their contribution plays a big part in the Patient and Client Council, being aware of what is happening at a local as well as regional level. You can contact your Local Advisory Committee on 0800 917 0222. Dr Sheila Kelly Belfast Local Advisory Committee chair said Over the past year, the Belfast Local Advisory Committee, continued to work with increasing enthusiasm to positively engage on challenging issues affecting the public who use the Health & Care Services and bring them to the awareness of the Patient and Client Council Board. One new member joined our Committee and this brought a different experience and perspective to the Group. We had a number of relevant presentations throughout the year, the main ones addressed the Patient Experience Standards, and the implementation of Transforming Your Care. As our interest in the Trust s management of the Patient Experience Standards was shared by all members, we invited the respective Trust Manager to update us on his management of these standards. This was informative and increased our interest in following up this area of Patient Experience. The Committee is collectively committed to understanding the process of how Transforming Your Care will be implemented. To this end we invited the Local Commissioning Lead, to outline the role of the Local Commissioning Group and the Integrated Care Partnership Lead, to outline the role of the 9
Partnership, in implementing Transforming Your Care. Both updated the Committee on the Transforming Your Care implementation plans, which in turn clarifies the potential role for the Local Advisory Committee members in this agenda. Knowing how the Implementation initially prioritises 5 areas of care, we discussed how we need to be alert to the experience of the public in these 5 areas of care. The LAC undertook to address four areas of concern over the past year. The areas of concern were: Gynaecology Clinic at Belfast City Hospital Unsatisfactory Experiences in Patient Standards Patient Chronic Pain experience Patient difficulties with GP access The energy and enthusiasm of the Belfast LAC members are constructively channeled to participate in the Patient and Client Council projects outlined in our current Business Plan. The Committee also looks at local area issues at each meeting, and after discussion have the opportunity to make recommendations to the Board. 10
Here are some highlights from across Northern Ireland Belfast Area The Belfast Team played its part in delivering Patient and Client Council regional initiatives by being active in communities throughout the City. Belfast Office staff met citizens of Belfast in hospital wards, day centres, hospitals, GP surgeries, shopping centres and events all across Belfast throughout the years with particular highlights in its presence at Belfast Pride and the Belfast Mela and at the front of City Hall asking people about their priorities for health and social care. The Local Advisory Committee of the Belfast Office and the Belfast team addressed issues including rare disease, neurology services, Children s Casualty, Older People s Service, Long Term Conditions, Domiciliary Care and District Nursing. The reports which resulted from this have been used to influence health and social care decision makers in Belfast and the local team are represented at the Board of the Trust and at the meetings of the Local Commissioning Group. Southern Area This was a productive year for the Southern Area, with the team leading on a number of major initiatives. In one project we partnered with the Department on the development of the best ways of consulting 11
with the public and gathering a range of opinions to ensure that future social care strategy genuinely reflected the views of service users. The agreed plan was to hold 15 public meetings across Northern Ireland. In addition, discrete groups such as people with a learning disability and people living in care homes were also included as part of the consultation process. We provided advice as to how best to communicate with these vulnerable and often hardto-reach groups. We also agreed questions to be asked at these public events with the Department and our staff attended several of the public sessions helping people to share their opinions. The Patient and Client Council also formally responded to the Adult Social Care consultation by using evidence gathered in our work. We will continue to work with the Department in the post consultation process to ensure the public s views are included in the final strategy. The Southern Local Advisory Council led a partnership project with the Consumer Council to gather service user experiences of getting to and from health care facilities for treatment. A total of 496 people took part in this project. Of these, 366 respondents completed a questionnaire, 102 people contributed to discussion groups, 21 people took part in an open floor debate at the Transport and Health Fair and seven people participated in a Citizens Jury. This approach of combining quantitative and qualitative methods ensured an in-depth exploration of the topic from a range of different perspectives. Both organisations also worked collaboratively with the main transport providers, through discussions and individual interviews, as the report seeks to encourage practical solutions and promote joint working in the short and longer term. 12
The final report was approved by our Board in December 2012 and subsequently approved by the Consumer Council. The report will be formally launched in May 2013 by two Ministers of the Northern Ireland Assembly, Minister Kennedy and Minister Poots. South Eastern Area The South Eastern Team has been involved in numerous projects over the past year. It certainly has been a busy one! Our summer was spent at agricultural shows and fairs, talking to people about Urgent Care and general health and social care issues in the local area. In the Autumn, we hosted two very successful road shows which allowed people to air their views about Transforming Your Care. Winter time took us indoors and we worked with our Local Advisory Committee and the South Eastern Trust to improve patient signage in some hospital areas and in the Spring, we worked with Mental Health Service Users to produce a consultation response to proposed changes in Mental Health Acute Services in the area. Throughout the year, we also gave presentations to many community and voluntary groups and encouraged them to become involved and share their views on health and social care services. We recruited just under 600 people to our membership scheme through our work. So all in all a very busy and productive year! 13
Northern Area Here, there and everywhere! Yes, Patient and Client Council staff had a very busy 2012/13. Much of the fieldwork activity allowed people to tell us about their experiences on urgent care services. Over and above the routine attendance at libraries, shopping centres and health fairs. Personal and Public Involvement Officers ensured a higher presence at out-patients departments. This proved productive with patients often having time to get involved. The summer activity is always a vibrant one with stands at Antrim Show, Red Sail event, Air Show and the Ole Lammas Fair. Success was also not far away with the Young People's Priorities report winning the NICCY gold award for participation. Jackie also was runner up in the Institute of Health care Management Developing Manager section. The Northern Local Advisory Committee maintained regular attendance over the year. Issues covered included queues into the Royal Victoria Hospital site and resulted in new signage and information within patient letters to inform them of the time delay. Over 1240 members were recruited in the Northern area - ensuring voices are represented from across 10 Borough and District Council areas on many health and social care issues. 14
Western Area The Western Team has had a busy and innovative year. We had a very active programme of going out and about to meet the people to ask them about their priorities for health and social care, including topics such as Long Term (Chronic) Pain and Access to GP Services. We also held focus groups, street consultations and encouraged people to have their say on these important issues. In addition we hosted information stands in our Local Hospitals. We have returned this year to local agricultural shows, shopping centres, and health events in the locality, encouraging people to get involved in our membership scheme and having their say on local issues. Our membership in the Western area has grown beyond our expectations and we are really encouraged to see that so many people have joined the scheme and are taking an interest in having a say on these services. Supporting people who have a complaint is a much valued service in the area. We opened our Complaints Clinic in Derry/Londonderry at the CAB Offices on Stand Road, giving the local community better access to our Patient and Client Support Services. This lead to resolution for many individuals as well as being the catalyst for some changes to the way in which services are provided. We have also engaged with local government and members of the NI Assembly to inform them of our work on behalf of people in the West. 15
Bamford Monitoring Group This year membership of the Bamford Monitoring Group expanded with a number of new experts by experience in mental health and learning disability joining the group. In April 2012 Patient and Client Council Board Members stepped down to give responsibility for the group to service users. The Bamford Monitoring Group currently has 16 service user and carer members and is chaired by Dr May McCann. Patient and Client Council staff continues to facilitate the group and support its work. This year the Bamford Monitoring Group completed a number of major projects including: a) A review of the experience of the resettlement of people with a learning disability from hospital. A report and its findings were presented to the PCC Board in January 2013. b) We worked in partnership with service users and carers to gather their experiences on their care in the community after discharge from an inpatient mental health hospital. This project was led, developed, designed by service users and carers. It was delivered by peer advocates. This meant that the whole process was developmental, innovative and required the team to negotiate through a fairly complicated research governance process. The final report was completed and presented to the PCC Board in February 2013. This was a significant report for service users. This project demonstrates the strength of having service users as researchers, an underdeveloped part of personal and public involvement. We are 16
working with the Trusts on the implementation of the findings in this report. c) We gathered people s views on the Beating the Blues cognitive therapy programme to understand what they think about this treatment option. This project is now completed and our Board approved the final report in September 2012. HSCB extended the available licenses for this initiative to include the voluntary sector on the strength of this work. In addition the Bamford Monitoring Group has also been out and about across the region meeting with people and decision makers about issues that are important to service users. As a result of what people told us the Department made major changes to its action plan for implementation of the recommendations from the Bamford Review. Bamford Monitoring Group members were also actively involved in representing service users in several decision making forums including the Health and Social Care Boards Task Force charged with continuing the implementation of Bamford. 17
Publications Young Peoples Priorities in Health and Social Care, May 2012 Care at Home, June 2012 Report of Older Peoples Reference Group, October 2012 Beating the Blues The experiences of people in Northern Ireland, November 2012 The Peoples Priorities for Transforming Your Care, November 2012 Patient and Client Council 1 st annual report on Health and Social Care Complaints 2011-12, December 2012 Emergency Admission to Hospital in Northern Ireland, February 2013 You can read these and other publications on www.patientclientcouncil.hscni.net Hard copies and alternative formats are available by calling the Patient and Client Council on 0800 917 0222 or email info.pcc@hscni.net 18
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