Minutes of the thirty-eighth meeting of the Patient and Client Council held on Tuesday 21 May 2013 at 1.30pm in Training Room 2, Downshire Hospital, Ardglass Road, Downpatrick Present: Dr Maureen Edmondson (Chair) Mr Brian Compston Dr Paul Coulter Miss Elaine Kelly Dr Sheila Kelly Apologies: Cllr Mrs Beth Adger Mrs Margaret Harte Dr May McCann Cllr Colin McGrath Cllr Martin Reilly Cllr Mrs Marion Smith Ms Koulla Yiasouma Mr Garrett Martin (at Training) Professor Hugh McKenna Other Apologies: Ms Oriel Brown, Nurse Consultant, Public Health Agency (PHA) In attendance: Mrs Maeve Hully, Chief Executive Mrs Louise Skelly, Head of Operations, Patient and Client Council (PCC) Mrs Helen Mallen, Board Secretary, PCC Dr Sonja McIlfatrick, Reader/Head of Research, AIIHPC and Principal Investigator, UUJ Dr Aine Abbott, Clinical Lead / Western HSC Trust 32/13 INTRODUCTION Dr Edmondson welcomed everyone to the thirty-eighth meeting of the Patient and Client Council (PCC). 33/13 CONFLICTS OF INTEREST There were no declared conflicts of interest in items to be discussed on the Board Meeting agenda. 34/13 TOUR OF THE GP & PRIMARY CARE CENTRE AT DOWNE HOSPITAL The Board had taken a tour of the GP & Primary Care Centre at the Downe Hospital which was officially opened in January 2013. Ms Ethna Sloan, Locality Manager, Downpatrick Community Services had led the visit on behalf of the South Eastern HSC Trust and Page 1 of 12
unfortunately none of the GPs were available on the day of the visit so we were not able to learn about the out-of-hours service. The Chair sought feedback and views: Ms Yiasouma explained that as Chair of the South Eastern Local Advisory Committee, some issues have already been raised in relation to carparking and signage at the new Downe Hospital. Having a Primary Care Centre within hospital premises means that patients from that surgery attending to see their GP or treatment nurse, could potentially have hospital or Allied Health Professionals (AHP) appointments at the same time, for example to attend podiatry, x-ray or a diabetic clinic. However, in practice being co-located does not give patients additional benefits. Members accept that patients attending a Primary Care Centre based on a hospital site and getting hospital appointments quicker than patients who attend GP Surgeries out in the community would result in inequalities. However, if we are to have true one stop shops which provide true integrated care, decision makers have to decide how these integrated services will be implemented fairly and effectively for all under Transforming Your Care (TYC). Members agreed that there appears to be minimal benefit to patients and lack of true integration in having such a centre on hospital premises. Members discussed several issues that they felt should be explored further with the Trust: management of the existing signage and accessibility around the building; difficulty in parking; the availability of someone at the reception desk to direct patients and visitors; disappointment that the new GP and Primary Care Centre is not a true Integrated Care Partnership (ICP) model that may be replicated going forward as recommendations from TYC are implemented; the lack of space for District Nurses, Social Workers and AHPs to see patients on a one to one basis with privacy and dignity. no flexibility in the area, to allow space for students on placement; the advantages of the Primary Care Centre may be in the model of GP out-of-hours working which potentially could help to reduce the flow of patients through Accident and Emergency. It was unfortunate that no-one had been available to fully explain the added value of this model of out-of-hours working. Page 2 of 12
Members asked that questions on throughput in the Downe Hospital and plans for the transfer of Mental Health Services be put to the Trust. Action: Mrs Hully to write to the South Eastern HSC Trust with feedback on the tour and to put questions as above. 35/13 DR SONJA McILFATRICK, READER/HEAD OF RESEARCH (AIIHPC) and PRINCIPAL INVESTIGATOR (UUJ) PRESENTATION AVAILABLE Dr Edmondson welcomed Dr Sonja McIlfatrick who presented the significant findings and key recommendations of the report on Exploring public awareness of palliative care. Dr McIlfatrick acknowledged all the colleagues and various organisations that assisted with this piece of work, but particularly thanked the members of the PCC Membership Scheme who contributed the responses that are summarised in this report. The research was carried out in two phases, using questionnaires and postal surveys and using a sample of respondents for more in-depth discussion on knowledge and attitudes to palliative care. The main issues from the findings were: A lot of people still associate palliative care with cancer, when really palliative care also covers the needs of people living with long term conditions such as dementia, congestive heart failure and chronic obstructive pulmonary disease People associate palliative care with ensuring comfort, support, pain relief and dignity, which is in keeping with the World Health Organisation (WHO) definition People overwhelmingly said that the preferred place where palliative care should be delivered is in the home. This is in keeping with TYC. Dr McIlfatrick outlined the proposed strategies for increasing awareness of palliative care and the recommendations going forward which focus on education, publicity and the need for cultural change in discussing and being open about palliative care and dying. There was discussion about the term palliative care but agreement that people must understand the term in order to understand that the focus of their care has changed when professionals are discussing palliative care and registering them on the NI Register for Palliative Care. This can be a shock and through education and reassurance it must be made clear that palliative care is not necessarily a move from Page 3 of 12
active treatment, but recognition of a patient s condition changing to a different stage. It is recognised that healthcare professionals can also find it difficult to discuss palliative care with patients, but they equally need to be comfortable with having these conversations with patients and their families. Members agreed that education at all ages, is essential in normalising discussions about palliative and end of life care. Education on this would need to start at an early age to make this something that can be discussed openly. Young carers may be a good starting point. Dr Abbott said that all long term conditions need to have the palliative care approach alongside active care. This enables a holistic approach to evolving care and needs. She said that there had been much debate about whether the Patient Passport currently being developed, should include both palliative and end of life stage care. In conclusion Members agreed: There is a need for an honest approach and discussion with patients and their families by healthcare professionals. Education for the public is essential and education of young people crucial if discussions about palliative care are to be normalised Further education is needed for healthcare professionals around the language used and the necessity for difficult conversations The Palliative Care Register is a good idea, ensuring that conversations have had to be had with the patient before registering. The Raising Awareness sub group, which is part of the Implementation Group of the Palliative and End of Life Care Strategy, will be of great assistance in education and publicity. Members thanked Dr McIlfatrick for her presentation and Dr Kelly for her important contribution to the implementation of this Strategy and asked her to continue this important work with the Boards support. 36/13 LIVERPOOL CARE PATHWAY (LCP) FOR THE DYING As requested, Dr Kelly provided a paper outlining the background of Palliative Care Teams and the LCP which was introduced in 1995 by the Palliative Care Team at the Royal Liverpool University Hospital. Copies of LCP Version 12 were made available at the Board Meeting. Mrs Skelly said that there is a real worry among the public about the LCP and the PCC will welcome the result of the PHA review. There is currently a lack of general information for the public and concern created from the negative publicity of the LCP. Page 4 of 12
Members thanked Dr Kelly for the briefing on the LCP. Thanks were also given to Dr McIlfatrick and Dr Abbott for their contribution to the meeting. They both left the meeting at 3.10pm. 37/13 MINUTES OF THE LAST MEETING The minutes of the meeting held on 19 March 2013 were agreed as an accurate record of the meeting and signed by the Chair and Chief Executive. 38/13 MATTERS ARISING Mrs Hully referred to a number of matters arising that have been brought forward from previous Board Meetings as follows: a. Minute 110/12 (c) Disability Steering Group, Western Area Mrs Sorcha Forbes attends meetings of this group which are held quarterly. It had been agreed that she should feedback to the Board on issues being discussed and actioned by the group. Action: Mrs Forbes will feedback to the Western LAC on the work of this Steering Group and the LAC can refer issues of regional interest onto the Board. b. Minute 18/13 (d) Consent for 10-17 year olds Members had asked for clarification on consent requirements for 10-17 year olds that wish to join the Membership Scheme. This was discussed with the Childrens Commissioner at a recent meeting. Action: It was subsequently agreed that this matter will be referred to the PCC Research Advisory Committee to advise. c. Action to be carried forward It was agreed that the following outstanding agreed at the Board Meeting on 19 March 2013 will be carried forward: i. Focus of next joint Board/LAC Workshop to be role of carers ii. Evaluation of Organisational Review in one year iii. Two Board Member vacancies on the Governance and Audit Committee. 39/13 END OF YEAR OPERATIONS REPORT, Board Paper 224 The Board were asked to review this report to determine if adequate progress was made against the 2012/2013 PCC Business Plan and approve accordingly. The report also included a list of successful outcomes for service users as a result of our work. Page 5 of 12
Members agreed that the volume and effectiveness of work outlined was excellent given the size of the organisation. Whilst having a Successes Sheet is a useful reference document, it was agreed that the outcomes of each project, and how it benefited patients and members of the public, should be included with the summary of the project when the Annual Report for 2012-2013 is being prepared. Mrs Skelly said that it can take some time before the benefits of a project can be seen, given the time often taken to implement change. Members recognise this but asked that interim or planned changes be provided in these cases and plans for follow-up can be included. This year the PCC has done major work in reaching out to include young people in its work. Ms Yiasouma said that this could be detailed more in the Annual Report. The PCC had used a Citizens Jury as part of personal and public involvement (PPI). An evaluation of how this form of PPI worked had been carried out by a member of the Southern LAC. It was concluded that the time and resources required to do this effectively makes it unsuitable as a regular form of PPI but it may be useful as a tool in a project looking at a specific issue. The Board asked that a formal brief note on the review be made available. It was agreed that the future Operations Reports should recognise the contribution of LAC members. Cllr Mrs Marion Smith emphasised that their contribution this year has been invaluable, for example in their contribution to the Pain Management project and the success of the PCC roadshows. This will be included in the Annual Report. Cllr Reilly referred to the communication section of the report. He welcomed the various methods of engagement used but asked how the figures compare with other HSC organisations. The Board agreed that the Communication section of the Annual Report and future Communication Reports need to include comparison figures, eg. year on year figures for website visits, facebook and twitter followers. Mrs Hully said that although not everyone is comfortable with using facebook and twitter it is the way a lot of people communicate now and the PCC must therefore embrace the social networking opportunities available and continually evolve in how it communicates with people. Dr Kelly and Dr McCann contribute a lot of time on behalf of the PCC on special interest groups. This work be included in the Annual Report. Dr McCann asked specifically that the work of the Bamford Monitoring Group (BMG) members be noted as this group is totally made up of Page 6 of 12
service users and carers that contribute to around twenty decision making groups during the course of their work. On discussion it was agreed that there needs to be consistency about the name of the complaints support service for prisoners. As other organisations provide advocacy for prisoners it was agreed that the PCC provides a Prison Complaints Service in keeping with its statutory role. Mrs Skelly confirmed that a workshop will be held in June to raise awareness of the Prison Complaints Service, among the body of advocates who help prisoners. The PCC complaints support service showed an increase of 45% between 2011-2012 and 2012-2013. Members asked if the new database implemented can now provide a breakdown of particular issues in specific areas and trends that may require more in-depth investigation. Mr Compston stressed that it is important that trends are monitored with regional variation so that these can be highlighted to HSC Trusts and the public via the media. Mrs Skelly confirmed that the Annual Complaints Report will come to the Board in June 2013 and it will contain some forensic analysis. The Board congratulated all the staff on the work outlined in the Operations Report. Board Paper 224 was approved. Action: Mrs Skelly was asked to include a number of issues/ changes detailed above, when transferring the detail of work and successes into a PCC Annual Report. 40/13 BOARD GOVERNANCE SELF ASSESSMEN TOOL The Board had met at a workshop in April to discuss and complete the Board Governance Self Assessment Tool. Mrs Mallen confirmed that this was finalised and returned to the DHSSPS with a covering letter, by 30 April as required. A copy of the Governance Self Assessment Tool and the cover letter had been provided to Board Members. 41/13 FINANCE a. Allocation Letter, Board Paper 225 A copy of the PCC Allocation Letter for 2013-2014 provided by Mr Peter Toogood, Director of Finance at the DHSSPS, was provided to Members. Of note there will be a manageable cut in the indicative allocation for 2014-2015 compared to the allocation for 2013-2014. Page 7 of 12
A regular report, including a BMG report, will be needed. Board Paper 225 was noted. 42/13 GOVERNANCE UPDATE a. Communications Strategy Update, Board Paper 226 Members were asked to note the communication activities for the year as delivering on the PCC Strategy. Miss Kelly noted an amendment to the report which states that 9 roadshows were held. This should say 11 roadshows. Mr Compston referred to the number of press releases issued over the year and stressed that press releases must be timely impactful. Mrs Hully explained that press releases are not being used as much to communicate with media and the public, but social networking is currently the choice of communication. Press releases tend to be picked up locally but opinions on regional issues tend to be picked up by the media using twitter and facebook. Members agreed that all sources of engagement with the media must be used when trying to get the PCC message out to the public in a timely way. Dr McCann asked that an amendment to wording and two additions be made in future Communication Reports in the Target Audiences and Organisation Approach section. These were agreed. In conclusion Members said that it is essential that:- the different resources for communicating with the media are considered and used appropriately the PCC must ensure timeliness of press releases and other communications the PCC must ensure that the balance is right in the wording of press releases, focusing on the interest of the public. the Board and LAC members are kept informed of important pieces of communication without being inundated with information. The Board noted thanks to Mr Peter Clarke, Communications Officer, who has been working hard on the communications of the PCC. Action: Board Paper 226 was noted. Page 8 of 12
43/13 SUPPORTING PEOPLE LIVING IN STATUTORY RESIDENTIAL HOMES, Board Paper 227 This paper outlined what the PCC has done since the HSC Trusts announcement of the consultation on proposed closure of residential homes and the subsequent withdrawal of the consultation by the Minister due to the upset and distress caused to residents, their families and wider communities. The paper briefly outlines proposals going forward and Dr Edmondson asked Members to consider what the PCC need to do to support residents and families as we go forward with implementation of all TYC changes. The Minister recently announced that the HSCB will initiate a new process which will be led by Mrs Fionnuala McAndrew, Director of Social Services at the HSCB. The PCC will be meeting with the HSCB to discuss its role within this new process and where our independence will be within that role to ensure that the voices of residents, families and local communities are being heard and listened to. In the PCC remit, it is entirely appropriate for us to be offering support to all residents and their families. Mrs Hully confirmed that the PCC has written to all the residential homes involved asking that an information pack be given to individual residents and their families. She said it is difficult to know at this stage how many residents and their family members will contact the PCC for support and therefore it is difficult to estimate what additional resources may be needed. Following discussion on the pros and cons of the PCC entering residential homes (invited or otherwise) Members highlighted the following: The public often feel that consultations are carried out as a paper exercise with outcomes already pre-determined and the Minister, TYC Review Team and Trusts have major work to do to reassure people that this is not the case. Complaints about what happened may not be coming in yet because no final decisions on closure have been made. If managed correctly with meaningful engagement with residents, families and communities there would be minimal complaints. In light of lessons to be learned from the Francis Report it is clear that much needs to be done to restore public confidence in the implementation of TYC and to ensure that decision makers are communicating effectively and listening to the public. The public need to know what alternatives are in place before residential homes are closed. There needs to be visible improvement in community resources if people are to be cared for at home. Clear interim plans need to be in place as increased community services are phased in and residential care phased out. Page 9 of 12
We have seen problems arise in the resettlement plan for long-term mental health inpatients where long stay facilities are being closed in order to provide care in the community. However, the resources for much needed mental health community services have not been available. The role of the PCC is different to the trained independent advocates that will be available for residents and their families through Bryson House and Age NI. There is an issue of where additional resources would come from to allow the PCC to work with residents and their families without there being a conflict of interest. Members felt that any additional resources required should come from the DHSSPS if they wish to have the PCC provide support for residents and their families. Whilst the PCC has supported the need for change as outlined in TYC, the PCC is concerned about how changes will be implemented. The Board: gave the Executive Team the mandate to speak to the Manager of all the residential homes affected with a view to making arrangements for the PCC to visit residents and their families to research their fears and wishes for the future. This information will be made available to decision makers to ensure that those being affected by these changes are being listened to. asked that the PCC write to the Minister and speak to Mr John Compton, Chief Executive, HSCB, about implementation of TYC. Responsibility for the strategic implementation of TYC needs to be clear and the PCC want to know what guidance and support has been given to HSC Trusts on the roll out of the TYC changes. reiterated that the PCC would be seeking reassurance that roll out of other changes being implemented would be handled better and would want to know what mechanisms are being put in place to ensure similar situations do not arise going forward. Board Paper 227 was noted. Action: The Executive Team will move forward based on the mandate provided by the Board above. 44/13 LOCAL ADVISORY COMMITTEE (LAC) RECOMMENDATIONS FOR BOARD, Board Paper 228 There were no recommendations for the Board from the LACs this month and Board Paper 228 was noted. Page 10 of 12
a. Chairs of LACs Dr Edmondson explained that there have been some further changes to the Chairs of the LACs. i. Western LAC. Cllr Reilly had agreed to replace Mrs Harte as Chair of the Western LAC. However, Cllr Reilly has recently been appointed by his party to be the Mayor of Derry/Londonderry. He will take up his new role in early June 2013. Members congratulated Cllr Reilly on this achievement and wished him well for his new role which will see him as Mayor during this year s City of Culture celebrations. Mr Garrett Martin has kindly agreed to Chair the Western LAC. ii. Northern LAC will be Chaired by Cllr Mrs Adger iii. Southern LAC will be Chaired by Cllr McGrath iv. Belfast LAC will continue to be Chaired by Dr Kelly v. South Eastern LAC will continue to be Chaired by Ms Yiasouma 45/13 CHAIR S REPORT Dr Edmondson referred to her report as follows: a. NICON Governance, Francis Briefing A number of Members had attended the Francis briefing. Lord Robert Francis said that the failings at the Mid Staffordshire NHS Foundation Trust were because the Trust lost sight of its fundamental responsibility to provide safe care and did not listen to what patients were saying. Dr Edmondson said that this reiterates the need for the introduction of the HSC Feedback System which is currently being developed by the PCC in liaison with the HSCB, PHA and Trusts. It will be important to hear what patients are saying about their care and critical to see how HSC organisations react to this feedback. 46/13 CHIEF EXECUTIVE S REPORT, BOARD PAPER 229 Board Paper 229 was noted. 47/13 ANY OTHER BUSINESS a. NI Statistics and Research Agency (NISRA) project Professor McKenna asked Dr Edmondson to inform the Board that NISRA are doing a piece of work to get all patient records in Northern Ireland anonomysed in order to use the information as a database for research. It is proposed that an honest broker will be appointed to Page 11 of 12
ensure this is all managed appropriately but Professor McKenna asked that the PCC get more information on this around public assurances. Action: PCC to get more information on the assurances for the public on how their data will be managed. 48/13 DATE OF NEXT MEETING Dr Edmondson thanked everyone for attending. The meeting closed at 5.10pm. The next PCC Board meeting will be held on Tuesday 25 June 2013 in the Lagan Room, Mount Conference and Business Centre. The main business will be to approve the Annual Accounts. The Executive Team and members of the public left the room for a short closed session by the Board. Signed Signed Date Date Maureen Edmondson Maeve Hully Chair of PCC Chief Executive of PCC Page 12 of 12