WELCOME ONE AND ALL TO CORNWALL MENTAL HEALTH SERVICE USERS FORUM

Service User Involvement History Strategic Health Authority area: The Peninsula The Peninsula Strategic Health Authority brings together 3 existing health authorities; Cornwall, North and East Devon and South and West Devon. Cornwall Context Much of the user involvement work is done through the Cornwall Mental Health Forums that are co-ordinated by a mental health co- ordinator. Local Implementation Team There is currently one county-wide local implementation team that has one service user and a service user 'representative' on it. There is a plan to set-up a service user reference group to inform and provide a more structured mechanism for involvement. User Development Workers

Continuing Page: The Mental health co-ordinator has a much wider brief than user involvement but until the creation of a separate User Involvement Worker post the co-ordinator fulfilled this role as well. The Mental health co-ordinator post is funded by the Health Authority and Social Services and employed by the Cornwall Rural Community Council, an independent charity. There is now also currently a dedicated User Involvement Worker in post. Other information The worker supports and co-ordinates six district user forums across Cornwall. These are open meetings for people with mental health issues to look at mental health services.

These forums : " provide statutory services with views about services and with representatives for working groups, etc. " monitoring and review of services. " provide independent visiting of in-patient units to talk to users about user forums, etc and to talk about their experiences on the acute wards. Those doing the visiting get together with staff from the units to review guidelines and information leaflets. Each in-patient unit now has a set of guidelines. On a practical level there is an impact as user visitors feed back about, for example, lack of locks on shower doors and things get done. The user co-ordinator supports the user visitors.

Forums achievements 1 SANCTUARY - Oakleigh House (now operated by Regain) In response to users reporting that they were often admitted to psychiatric in- patient units because there was no alternative the user co-ordinator met over 130 users around the county to ask what such an alternative would be, for whom and for how long. It came to be defined as "time-limited time out in a safe non- medical environment to prevent further deterioration and to begin recovery". There will be three components: " a safe house with workers employed by the Rural Community Council " a budget held by each of the Community Mental Health Teams to buy individual sanctuary packages in a chosen place detailed in the care plan and used when the user decides it is needed " host families to be recruited and trained Sanctuary is for people with care plans who are known to the Trust and the time limit initially is two weeks. Halfway through the placement each user will fill in a self assessment and then again about a month later to see if it has been useful. The full Sanctuary budget in 2001/02 will be £170,000 (£40,000 held by the Trust as a contingency fund).

2. NIGHTLINK The out of hours service in Cornwall, developed with user input, will have three components: " Nightlink. This is a telephone helpline, funded by the Health Authority, (now operated by Regain) offering support and listening. Volunteers work from their own homes and each volunteer has access to a supporter when on duty. It operates Friday, Saturday and Sunday nights at present with one volunteer and one supporter per night. Expanding the service will depend on recruiting and training more volunteers. " Specialist telephone advice services for users and carers (nurse staffed) from 8.30 p.m. to 8.30 a.m. " Face to face contact. People on enhanced care plan will be able to get a home visit if there is something they cannot manage until morning

3 USER LED SOCIAL CLUBS There are three social clubs in Cornwall funded by Social Services and open for limited times. Each is run by volunteers who use or have used services and have between 8 and 25 fellow users attending, most with well established mental health issues. Users design the rules and guidelines and users hold the budgets.

4. USER EMPOWERMENT GRANTS Small individual grants are available to service users, for example for swimming pool tickets, art materials, tractor driving lessons

5 ASSERTIVE OUTREACH TEAMS Each of the three planned Assertive Outreach teams has made a commitment to employing workers with experience of using mental health services.

. 6. MENTAL HEALTH SERVICE DIRECTORY A free publication on mental health services in Cornwall.

That was Then! 5% = 3,800 potential members Everything was running smoothly, though of course sometimes things change. We had a massive change with the formation of the Primary Care Trust and joint working of Social Services and Cornwall Partnership Trust

So what went wrong? This is my own personal belief..... There were so many changes all at the same time and things were not communicated. During this turmoil even the Service User Co-ordinator changed. What took place.... No one seems to know.... But the SERVICE USER LED INVOLVEMENT..... disappeared and unfortunately I apologise to all Service Users, we didn’t even hear about it or understand what happened But the next thing we find out is a Service Level Agreement has been given to Cornwall Rural Community Council, who also had a new management team. For the last few years there has been a lot of friction, because we were reading from different rule books.

But I am glad to say, there has been a lot of discussion on both sides.... And now I would say everything has been sorted between CRCC and the Service Users Representative Group (SURG). We are at last back working as ONE team. That means we can get back to what we should be doing. Supporting and working for ALL Service Users. There are a lot of changes happening. WE NEED TO BE THERE IN THE PLANNING AND VOICING YOUR NEEDS TO PROFESSIONALS.

Lessons Learnt from the early days " Employing a user co-ordinator allows for continuity, provides support for groups when needed, co-ordinates training and recruitment of volunteers, etc. " Recruiting volunteers and user reps and supporting people to cope with complex meetings can be very difficult but success encourages people. " Getting payments for users above expenses is still a problem. (Though this is about to be resolved by the Coalition Government)

Independent Service User Involvement Developing meaningful service user-involvement is a long-term process. Time should be allowed for service users to be supported in developing an independent user- led agenda. Otherwise there is a danger that service user involvement becomes primarily a tool for meeting the consultation needs of service providers.

Long term Adequate Funding Funding for mental health service-user involvement needs to be adequate (taking account of development and running costs in addition to staff costs) and supported through long-term sources that afford stability. Time spent securing further short-term funding detracts staff from service development and delivery.

West = 287,000 Area 134,157h East = 245,200 Area 220,200 WEST 2 GROUPS 100,400 W2A Camborne and Redruth W2B Falmouth & Penryn 23,266 WEST 3 GROUPS 88,700 W3A St.Agnes & Perranporth W3B Newquay & St.Columb W3C Truro & Roseland 52,011 EAST 3 GROUPS 87,200 E3A Launceston E3B Bodmin E3C Camelford E3D Wadebridge & Padstow E3E Bude 119,514 EAST 2 GROUPS 82,000 E2A Liskeard & Looe E2B Saltash & Torpoint (Gateway) 59,223 EAST 1 GROUPS 76,000 E1A St.Blazey, Fowey & Lostwithiel E1B St.Austell E1C China Clay 41,341 WEST 1 GROUPS 97,900 W1A Penzance, Marazion, & St.Just W1B Hayle & St Ives W1C Helston & Lizard 59,240 Layout of Cornwall Network. Using Community Networks

WEST 1 GROUPS Population 97,900 Area 59,240 hectres WEST 1 GROUPS W1A Penzance, Marazion, & St.Just W1B Hayle & St Ives W1C Helston & Lizard 5% = 4,895 potential members

WEST 2 GROUPS Population 100,400 Area 23,266 hectres WEST 2 GROUPS W2A Camborne and Redruth W2B Falmouth & Penryn 5% = 5,020 potential members

WEST 3 GROUPS Population = 88,700 Area = 52,011 WEST 3 GROUPS W3A St.Agnes & Perranporth W3B Newquay & St.Columb W3C Truro & Roseland 5% = 2,962 potential members

West Population = East Population = Total Population = 532,200 WEST 1 GROUPS WEST 2 GROUPS WEST 3 GROUPS 287, ,200

Population = 76,000 Area = 41,341 hectres EAST 1 GROUPS E1A St.Blazey, Fowey & Lostwithiel E1B St.Austell E1C China Clay 5% = 3,800 potential members EAST 1 GROUPS

Population = 82,000 Area = 59,223 hectres EAST 2 GROUPS E2A Liskeard & Looe E2B Saltash & Torpoint (Gateway) 5% = 4,100 potential members EAST 2 GROUPS

Population = 87,200 Area = 119,514 EAST 3 GROUPS E3A Launceston E3B Bodmin E3C Camelford E3D Wadebridge & Padstow E3E Bude EAST 3 GROUPS 5% = 4,360 potential members

West Population = 5% potential members = 14,350 East Population = 5% potential members = 12,260 Total Population = 532,200 EAST 1 GROUPS EAST 2 GROUPS EAST 3 GROUPS 287, ,200

Total inclusion with two way communication All Service Users Forums, Conferences, Shared Information, Presentations Re-establish the South-West Network User Group (SNUG) Project Workers and Elected User Reps Joint Communications Service User Reps and ALL Providers

Elections of Service User Reps Anyone can be a part of any Forum. From September, October and November next year ALL Groups will be able to vote for their representatives. Group 1 East and West September Group 2 East and West October Group 3 East and West November At these elections, the elected service users will be listed as Highest vote = rep3 to lowest vote= rep1.... rep 1, rep2 and rep3 So in the following years 2012 rep 1’s will be up for re-election 2013 rep 2’s will be up for re-election 2014 rep3’s will be up for re-election Then each representative will be up for re-election every three years. This will give the Service User Representative Group a membership of 18 Between now and the elections, the present SURG will continue, others can ask for membership Reps must be able to give two way communications between the Forums and SURG. Also be willing for training in interviewing techniques and debating with professionals.

Forum Supporters If you don’t make it as an elected representative Don’t worry, there will be plenty of other things for you to get involved with. Communications to your area will be crucial to make sure YOUR FORUM works. Everyone who wants to be part of this true form of Service User Involvement, will be able to take part. If you need training in certain area’s to improve some skills, this will be encouraged and hopefully funded. Remember there will be further elections every three years.... So be prepared. If you don’t make it as an elected representative Don’t worry, there will be plenty of other things for you to get involved with. Communications to your area will be crucial to make sure YOUR FORUM works. Everyone who wants to be part of this true form of Service User Involvement, will be able to take part. If you need training in certain area’s to improve some skills, this will be encouraged and hopefully funded. Remember there will be further elections every three years.... So be prepared.

The value of the Project Worker It is evident from the past and in other area’s that where contact has been made and relationships developed by project workers The Forums will once again become a focus and catalyst for mental health Service User Involvement.

Project Workers Will work with all service users, carers, providers, charities, self help groups. Will help to set up and monitor, forums, self help groups, encourage capacity building of Service User Involvement within their area. Work closely with the other facilitators to both encourage and enable service users. Work closely with the administrator to make sure requests for service user involvement are acted upon and reports returned.

Administrator works for the network Administrator available to Mental Health Project staff and Service User reps.

How do we know if things are right? A monthly meeting would take place with the Project Workers and Service User Reps. At these meeting, all activities of each area would be looked at, looking at best practice. Any area which seems to have an issue, all facilitators would give support to build up capacity. The network itself will be self monitoring. Only when the network believes they cannot resolve an issue, the escalation procedure will come into play. (to be written and agreed)

How do we move forward? We need you! Yes you! If you have an interest in any aspect of Emotional and Mental Health. Then we need your input with the building of a new Service User Involvement Network. We have the Project Workers in place. The next step is for the people who are known to the project, to show an interest of either building the East or West Forums and to set up a series of Forums, with top speakers and social events to bring more users on board. So please join us in helping everyone.

Service User Forums 3 in the West and 3 in the East For each Forum 3 elected Reps This will total 3 reps from each Of the 6 Forums = 18 reps. Forums 1 in each area each month This equals 24 meetings covering every part of Cornwall. Relationship between Forums/Staff/CCRC/SURG CCRC is a clearing house and budget control. Project Manager Chris Houghton and Deputy Manager Nicki Sweeney, have overall control for Health & Safety, Training, Funding, co-ordination between Service Users, Services & Partners. They are Independent but answerable to the Forums The staff and Forums are supported by an Admin Officer. East Project Worker West Project Worker S.U.R.G. (Service User Representative Group) CRCC Staff are invited to Service User Rep. Group meetings.

Service User Forums Based on Cornwall Council Community Networks Made up into three groups in the West and three in the East Each Forum next autumn to arrange election of Representatives. These elected Representatives will form The Service User Representative Group (SURG) Each Forum is the power house of ideas. Issues are discussed here and then taken to SURG Each Forum is the power house of ideas. Issues are discussed here and then taken to SURG SURG DOES NOT EXIST WITHOUT THE FORUMS SURG IS THE PLACE WHERE ALL THE IDEAS COME TOGETHER AND THEN ARE DISCUSSED. THEN TAKEN FORWARD IF APPRIOPRIATE, this is where that happens. Talking Heads, West End Club, Camel Club Oakleigh House, Nightlink, and a number of other self help groups was developed this way. All of the Forums would have leading Health and Social Service manages at the meetings. It is the responsibility of the Service Users to plan the date and who they would like to attend THEIR Forum. The Project Worker along with the Reps.would then make all the arrangements. The FORUMS are open to all services users, carers, professionals, including social workers and CPN’s and members of the public. If Service users felt they needed to discuss personal issues with the group, then this would take place in the last 15 minutes, excluding all but the service users. THIS USE TO WORK AND I KNOW A LOT OF SERVICE USERS AND CARERS LONG TO GET BACK TO THIS. The Forums and SURG use to have a very good name and we represented all service users at all levels of meetings within the NHS, Adult Social Care Charities and the 3 rd Sector. There use to be regular Forums and Socials, these have all but stopped and with it the users self worth. WELL WE ARE BACK.... SURG IS THE PLACE WHERE ALL THE IDEAS COME TOGETHER AND THEN ARE DISCUSSED. THEN TAKEN FORWARD IF APPRIOPRIATE, this is where that happens. Talking Heads, West End Club, Camel Club Oakleigh House, Nightlink, and a number of other self help groups was developed this way. All of the Forums would have leading Health and Social Service manages at the meetings. It is the responsibility of the Service Users to plan the date and who they would like to attend THEIR Forum. The Project Worker along with the Reps.would then make all the arrangements. The FORUMS are open to all services users, carers, professionals, including social workers and CPN’s and members of the public. If Service users felt they needed to discuss personal issues with the group, then this would take place in the last 15 minutes, excluding all but the service users. THIS USE TO WORK AND I KNOW A LOT OF SERVICE USERS AND CARERS LONG TO GET BACK TO THIS. The Forums and SURG use to have a very good name and we represented all service users at all levels of meetings within the NHS, Adult Social Care Charities and the 3 rd Sector. There use to be regular Forums and Socials, these have all but stopped and with it the users self worth. WELL WE ARE BACK....

Who are we already supporting? Breakaway Club (to reduce or come off Benzodiazepines.... Held in Truro) Camel Club (Social drop in Delabole Church) Cornwall Survivors Group ( Mutual support for male survivors of rape or sexual abuse.. St.Austell ) Creative Words (Creative writing Falmouth) Hearing Voices Network (Penzance, Newquay and Bodmin) Manic Depression / Bipolar Groups (Penzance, Newquay and Liskeard) Perranporth Coffee Corner (Social Group) Pink Umbrella LGBT Group (Gay, lesbian, bi- sexual & trans support.... Held in Truro) Redruth Friendship Club ( Social drop in group) Freedom OCD Group (Support group in Truro) Into Body, Into Being (Yoga, exercise, relaxation, meditation in Penzance) Space For You ( Crafts, Painting, Wood Carving, Potery, Voice Therapy, Relaxation, Counselling, various other activities, held at Sancreed House) Rural Community Link Project (RCLP) (Drop in welcome groups:- St. Blazey, Indian Queens, St.Dennis, Penwithick, Lostwithiel Also a men’s group for Restormel residents) SOBS (Survivors of Bereavement by Suicide) ( Threemilestone, Truro) (Two new groups likely to start in the new year, one in West and one in East) St.Agnes Self Help Group (Social support group) Quarterly Service User newsletter ( or should it be book? Last edition 44 pages) Manage the self help budget, Individual Enpowerment Grant Independent Hospital Visiting Scheme Community Independent Visiting Shceme Feed into LINk Plus many other activities around the County. PLEASE ASK FOR MORE INFORMATION!

The Beginning Thank you for listening

UPC Research Winter Conference Dear All Please find attached the UPC Research Winter Conference programme/sessions booklet and a link to Future Inn, Plymouth. If you know of any colleagues who would still like to attend please get them to me asap as there are still places We look forward to seeing you all on Tuesday 30 th Nov. Kind regards Tina Crooks on behalf of Claire Gray Staff Development Co-ordinator UPC Faculty 4th Floor Rolle Building University of Plymouth Drake Circus Plymouth PL4 8AA tel For all queries relating to Programme Administration please