Patients Council, Royal Edinburgh Hospital

The Patients’ Council was first set up at the Thomas Clouston Clinic (TCC) on the old Craighouse site, to help patients cope with the closure of the TCC and their move either to the present site at the Royal Edinburgh Hospital or into community care. Its first full meeting was held in May 1990, although a steering committee had been meeting since the end of 1988. Open discussions had led to the hospital management at the REH inviting Edinburgh Association for Mental Health, as an independent organisation, to look at setting up a Patients’ Council at TCC.

A Resource Worker was appointed in January 1991 and remained in post until September 1993. In September 1991, the main Craighouse building closed, leaving 79 people still living in the remaining four villas on the Craighouse site. The Patients’ Council aimed to provide a forum where these people could raise any issues of concern, problems, or ideas that they might have in relation to the ward, hospital or in the larger framework of mental health services.

By late 1992, there were some signs of improvement and change in the relationship between hospital management and those using its services. For example, there had been wider

1 consultation on the refurbishment of wards at Here are some examples of issues dealt with by Mackinnon House where many of those still living on the Patients’ Council in 1993: the old site would move. The Chair of the Patients’ Council and the Resource Worker had been invited  Management agreed that Lost Clothing Forms to join a newly formed group looking at the whole would be available at ward level way in which relocation would be achieved for those  Ventilation was provided in the new smoking still living on the Craighouse site. And plans were areas afoot to carry out a consultation on the Patients’  Patients were helped to get appointments with Charters created by the old Mental Health Unit, with dieticians about weight gain while on a view to creating a charter/code of practice based medication on the comments and views of those with first hand  An appointments system was instituted in the experience of mental health services. An extension North East Sector Community Care Clinic of the Patients’ Council into the acute wards of the  Consultations with patients were held to gather hospital was anticipated through this activity. comments to pass on (anonymously) to management for use in designing new Patients’ This expansion did indeed take place. The Patients’ Charters Council became a properly constituted body on 24 June 1993, with its own Management Committee. A new Support Worker, dealing with collective On the closure of the TCC, its remit was changed to advocacy, was appointed in November 1993 and enable it to represent the interests of patients in the remained in post until June 1998. The Clinical then General Directorate of the Royal Edinburgh Director continued to attend every second Patients’ Hospital, including the acute wards. It was funded Council meeting. Here are some of the issues by Edinburgh Healthcare NHS Trust but managed by dealt with by the Patients’ Council in 1994: Edinburgh Association for Mental Health to ensure its independence. The Trust’s Clinical Director  Regular meetings took place with Nigel Griffiths attended every second meeting to answer MP who could present the Patients’ Council’s questions. The last Patients’ Council meeting at the viewpoint to appropriate Ministers on relevant Craighouse site took place on 2 September 1993.

2 issues eg availability of acute beds, needs of patients who spent most of their time concessionary travel in the hospital’s corridors  Meetings were held with the Head Pharmacist about establishing an information service for In February 1995, an Advocacy Development patients Worker was appointed to run an individual  A newsletter was started advocacy project, covering the South West Sector  Management agreed that in-patients should be of Edinburgh. A key piece of work was undertaken consulted on redecorating the hospital with a group of users of the Cambridge Street Day  Following a request from the Patients’ Council, Centre. Their “Report on Consultation with Users management set up a Working Party, with of Cambridge Street House”, published in representatives from the Patients’ Council, to November 1995, discussed the problems the users produce a good code of practice governing had experienced with their care on Ward 5 and patients’ attendance at ward rounds recommended key areas of improvement. As a  An assurance was received from management result of this work, the group received funding in that the Occupational Therapy Horticultural 1997 from Edinburgh Healthcare NHS Trust to Project would not be closed to allow the land to produce a video, “This Could Be You”, in be used for hospital redevelopnment association with Outlook and Napier University, to  A washing machine was installed at Abbotsford be used as a training aid for nursing staff. The Park video aimed to show what it is like to be a patient  At the request of the Patients’ Council, Lothian and how nursing staff can be more empowering in Regional Council dropped the kerbs on their work. It was supported by a training pack Morningside pavements to facilitate wheelchair developed by Napier University and has been very access highly praised. It started to be used in nurse  A Patients’ Council campaign to ensure patients training at the hospital in 1999. In 1999, this received their full entitlement to Disability Living video won an award in a national competition, Allowance payments received national attention “The Pavilion Innovation in Training Awards”,  A Patients’ Council representative was invited to organised by Pavilion Publishing and the video is join the hospital’s working group to assess the

3 now published and distributed by Pavilion Publishing The Patients’ Council was involved in a BBC on a national basis. initiative to highlight mental health problems. It campaigned with staff and carer interests about The Patients’ Council continued to move from the damaging effects of the Government’s cash strength to strength during this period. In 1995-96, releasing efficiency savings (CRES). It conducted it campaigned for improved conditions in the acute a survey of patients/users experiences of being wards in the Andrew Duncan Clinic – indeed, as a under observation. It led a successful campaign to result of media intervention brought about by Nigel persuade an international pharmaceutical company Griffiths MP on its behalf after consultation with the not to withdraw the drug Redeptin, but to continue Trust’s Chief Executive, the problem of over- to provide it on a named-user basis only. It crowding and over-occupancy was addressed with established links with various outside the assistance of a Health Council representative organisations, either by becoming affiliated to and a representative from the Consultation and them (eg Lothian Mental Health Forum), or by Advocacy Promotion Service (CAPS). inviting them to address the Patients’ Council (eg Legal Services Agency). The Patients’ Council consulted over a hundred patients on quality of services and produced a The Patients’ Council enjoyed a good working document, “Response to the draft Lothian Mental relationship with hospital managers and clinical Health Strategy 1995-2000” which received and other staff while representing user views. It favourable comment and was widely circulated started to run information stalls at appropriate throughout Scotland. This information was events both within and outside the hospital, and to subsequently used to design an evaluation provide representatives to committees and working document (Quality From the User’s Perspective) to groups. Occasional excursions were arranged for be used to access what was happening on wards, to members eg a guided tour of the Royal Mile. monitor quality. This document was published by the Patients’ Council in 1997 and is still available for Road markings were painted on the crossing sale. outside the Andrew Duncan Clinic following a request from the Patients’ Council. A campaign

4 was mounted to ensure concessionary travel would the hospital’s Discharge Planning Group and the continue to be available to people with mental Care Programme Approach Steering Group; health problems following local government upgrading of washing facilities on Midmar ward; reorganisation in April 1996. A payphone was the installation of a baby changing unit in the installed in Ward 4. The Advocacy Development ladies’ toilet in the main Mackinnon House corridor. Worker was instrumental in setting up the South A visit was made to Crichton Royal, Dumfries. West Users Forum. Groups of activists visited Tickets were provided for members to attend Murray Royal Hospital in Perth, to advise them on relevant events at the Science Festival. setting up a Patients’ Council, and Queen Margaret User/activists started to become involved in the Hospital, Fife, to get a wider perspective on the training of nursing staff. Following complaints of work carried out by the Patients’ Council there. The poor treatment by night nursing staff, meetings Patients’ Council supported the proposal to upgrade were arranged with the Trust’s Director of Nursing, the Church Centre and provided three who agreed to investigate. The Patients’ Council representatives for the Advisory Group. A new was invited to meet representatives of the Scottish shower and toilet block was built at the OT Health Advisory Service during their visit to the Horticultural Project. The Patients’ Council put an hospital – issues discussed included levels of enormous effort into the campaign to stop the funding and the condition of wards. One activist government discontinuing the mobility component agreed to act as a link with patients from Pentland of the Disability Living Allowance. Members of the Ward who found it difficult to attend Patients’ Patients’ Council attended and posed questions at Council meetings. Trust Public Meetings. Representatives from the Patients’ Council In August 1997, an Advocacy Worker attended the Users & Carers Seminar held to (Resettlement) was appointed to set up a project to discuss the Scottish Office document “A cater for the needs of people in rehabilitation and Framework for Mental Health Services”, and the long-stay areas. The new hospital General Manager Patients’ Council subsequently helped members to took on the role of liaison with the Patients’ Council. submit their responses to the Framework Issues tackled during 1997 included involvement in document.

5 In January 1998, the Patients’ Council instigated a raised by patients through the Patients’ Council. review of meals provision on the ward which The Patients’ Council presented to management a eventually led to the introduction of 48-hour petition from patients about ventilation on wards, ordering. The issue of Therapeutic Earnings for which led to the installation of new windows in users of the OT Horticultural Project was explored. July. In June, Patients’ Council representatives The Advocacy Development Worker left to take up a joined the New Church Centre Advisory Group, new post as a lecturer at Napier University. helping to identify what services people wanted the New Church Centre to provide. Following In February, two representatives from the Patients’ pressure from the Patients’ Council, hospital Council attended the first meeting of the Advocacy managers started to discuss with officials from Task Group which had been set up to examine city- Tipperlinn Bowling Club, arrangements for patients wide advocacy needs. Following Patients’ Council to use their facilities – this eventually began to intervention, lunches were provided in the staff happen with support from New Church Centre dining room for users of the OT Horticultural staff. Patients’ Council representatives met the Project. In March, complaints about the treatment Mental Welfare Commission during their visit to the of patients by hospital shop staff were dealt with hospital and discussed over-occupancy, staff and the Patients’ Council formed a Working Group attitudes, psychology services and mother & baby to start planning a major Conference on advocacy to unit. be held on 10 June 1998. On 10 June 1998, the “Advocacy – Where Now?” In March 1998, a new Team Leader was appointed, Conference took place in Edinburgh. Delegates prior to the retirement of the Support Worker in attended from advocacy projects, Patients’ June. The Team Leader also took on the individual Councils and NHS Trusts from all over Scotland. advocacy role in South West Sector. The conference was designed to demonstrate and celebrate the work of the Patients’ Council at the In May, hospital managers held a meeting with Royal Edinburgh Hospital and to look to the future Charge Nurses in the acute wards where detailed of advocacy. It proved to be an extremely consideration was given to points which had been successful event.

6 In July, Patients’ Council representatives were number of Working Groups were established within sought to join the Strategic Planning Group, to plan the Patients’ Council, eg Constitution; Hospital the re-provisioning of services on the Royal Rebuilding; Newsletter; Video; Nurse Training. Edinburgh Hospital site. Representatives also The Patients’ Council provided information on the participated in meetings of the Pharmacy Working cost of long-term care when moving from hospital Group, working on a booklet for patients on to the community. The Patients’ Council asked medication, and the OTHP/Work Training Review hospital management to ensure that no patients Group, looking at the best way to provide activities. missed out on the opportunity to vote in Until a new system for clothing provision was parliamentary and local government elections. established, Trust managers agreed to help people in hardship, following representations from the A new Advocacy Worker (Resettlement) was Council. appointed in March 1999.

In August 1998, an Advocacy Development, Training Due to various organisational problems, the staff & Support Worker was appointed, covering the team were relocated to the Edinburgh Association collective advocacy role. During 1998 and 1999, the for Mental Health offices in central Edinburgh for administration for the Scottish Advocacy Workers lengthy periods from June 1999. An independent Forum was carried by one of the admin workers at Panel of Enquiry was commissioned by Lothian the Patients’ Council. The Team Leader was Primary Care NHS Trust to try to establish the involved in Advocacy 2000, a national organisation cause of these designed to support, defend and promote problems and to recommend solutions. The Trust independent advocacy in Scotland. In November then held a series of consultative meetings with 1998, the Advocacy Worker (Resettlement) left to service users, as a result of which funding was take up a new post nearer his home in Fife. withdrawn from EAMH on 31 March 2000, with staff being made redundant. During 1999, representatives continued to be involved in the Medication Working Group and the The Trust then established a Steering Group of final stages of the Discharge Protocol group. A service users to guide the rebuilding of the

7 Patients’ Council. Two admin workers were re-  We provided two representatives on the appointed on 1 June 2000 to provide administrative Advocacy Task Group support.  We provided two representatives on the hospital’s reprovisioning group An invitation to tender to offer a management  We held an exploratory session on suicides service to enable the Patients’ Council to offer,  We invited the Trust’s Clinical Director and the initially, a collective advocacy service, was circulated hospital’s General Manager to attend alternate to various voluntary organisations during Summer Patients’ Council meetings for a 15 minute 2000. Unfortunately this initiative failed to produce questions/answer session a suitable management service provider. The  We commented on new menus for patients Patients’ Council then decided to elect an Interim  We provided representatives on the hospital’s Management Committee in January 2001, to steer Reference Group, addressing issues such as the council towards becoming a fully autonomous, ward cleanliness independent, user-led organisation, able to employ  We commented on Nursing Core Standards its own staff, hopefully within a period of twelve  We held a Christmas Party! months.  We sent representatives to various conferences and seminars During this period, meetings of the Patients’ Council  We produced a new Patients’ Council brochure continued to take place. These are some of the  We supported the campaign to maintain issues discussed and dealt with: concessionary travel arrangements in Edinburgh

 We produced two Newsletters A full-time Support Worker was appointed in April  We asked hospital management to ensure the 2001, to provide a collective advocacy service and Information Packs are issued to all patients to facilitate the route to independence.