Yorkshire & Humber Regional Family Carer Network

Notes of the meeting held on 2nd May 2012

Attendees: Lucy Horobin (Wakefield) Lynn Murphy (Doncaster) Stephen Metcalfe (Bradford) Maggie Kelly (York) Ann MacMahon (Rotherham) Samantha Clark (Inclusion North) Mike Spinney (Wakefield) There were apologies from Tina Hooper (NE Lincs) Mary Morley John Kirkman (Sheffield) Liz Wilson (Calderdale) Christine Metcalfe (Bradford) Kathy Read (North Yorkshire) Dalia Magrill (Sheffield) Welcome and introductions

Barrie Warner (Wakefield) Jean Riley (North Yorkshire) Gillian Payne (North Yorkshire) Kay Kirk (Doncaster) Mary Dave Barker (North Lincs)

Eleanor Borkett (North Yorkshire) Sue Kirkman (Sheffield) Mark Feeney (Kirklees) David Wilson (North Lincs) Kathryn Spinney (Wakefield) Barbara Thompson (Sheffield)

Sam welcomed everyone to the meeting.

1. National & Regional Update

Winterbourne View response update DH review has been continuing but cannot report until all the criminal cases are finished. Much of the work has been done and all local Primary Care Trusts (PCTs) have reported on who is in NHS funded care or living out of their area. They now have local action plans for what they need to do to be sure people are safe & well supported. What Councils & PCTs are expected to do next was outlined in a Dear colleague letter from the Department of Health. You can read the full and easy read version at http://www.dh.gov.uk/en/Publicationsandstatistics/Lettersandcirculars/Dearcolleague letters/DH_132481

The letter asks Councils and PCTs to work well together, complete the Health Self Assessment framework and make sure people with learning disabilities are included in local plans like the Joint Strategic Needs Assessment. 11 people who worked at Winterbourne View have been charged with offences including some under the Mental Capacity Act. 2 people have pleaded not guilty and are expected in court in August. Mencap & the Challenging Behaviour Foundation have launched a campaign to ask the government to make real changes in the review by closing all big institutions and not let this happen again. The campaign asks you to write to your MP. You can find out about the campaign at http://e-activist.com/ea-action/action?ea.client.id=78&ea.campaign.id=14616

Health Self Assessment Framework All the Partnership Boards in Yorkshire & Humber have been asked by the Strategic Health Authority to complete the health self assessment again this year and return it by 8th June. This is a chance for families to feedback on how health services are working & influence future plans. Inclusion North have done lots of resources to help explain it and involve people. They will also come & run a big health day session in each area. You can read about the framework and see the resources at: http://www.improvinghealthandlives.org.uk/projects/self_assessment/materials2012 Good Health Care Guide The Foundation for people with learning disabilities have written a guide for people & families on using the NHS http://www.learningdisabilities.org.uk/publications/176171 Role of families on Partnership Boards Lots of Partnership Boards are being reviewed in light of changes like Health & Well Being Boards. We all agreed it will be important that Partnership Boards remain & have a link to Health & Well Being structures so that people with learning disabilities & family members have a voice & a direct link. There is good practice guidance on how Partnership Boards work best. You can get a copy of this at http://www.dh.gov.uk/en/Publicationsandstatistics/Publications/PublicationsPolicyAn dGuidance/DH_107385
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With the same link you can get a copy of guidance for Partnership Boards on implementing the carers strategy

National Programme Board and National Valuing Families Forum (NVFF) Dave explained that the National Valuing Families Forum is changing. Princess Royal Trust for Carers have said they do not want to coordinate it long term and Cath Baker the national coordinator has left her post. They are advertising for someone to take on the coordination role nationally for this next year. The Programme Board has changed its focus & how it works. At the last meeting there was some tension between the family & self advocate reps & the Minister about the feedback they were giving. THE NVFF is reviewing how it works, responding to families priorities as well as contributing to the Programme Board. Dave suggested this afternoon that the network decide its local priorities and partners for action this year so that the network meets members needs & shares its work with others nationally. Resources of the mental Capacity Act for families Irwin Mitchell Solicitors, Mencap & the Challenging Behaviour Foundation have done a resource & template letters for families around their involvement in decision making for their family member. You can get the leaflet & letters at http://www.irwinmitchell.com/servicesforyou/support/Pages/ActivitiesViewer.aspx?ite m=149

2.

Regional Round up

Network members present shared their views on what the key issues are locally, good things happening in their area and other information. Other prereturned Regional Roundup sheets are included in the following information.

Rotherham
What is going well? Family Carers group still well attended No change of services as yet Pushing personal budgets What are your 3 big issues? No announcement of changes to services until after the local elections

North Yorkshire
What is going well? Questionnaire Sent out about everyones Annual Health Review What are your 3 big issues? Nothing Person centred No feedback on consultations Benefits what is happening No new carers Support for carers reps group

York
What is going well? The partnership board has another year of existence Learning Disabilities Liaison nurse Brilliant review looks safe for now Safety issues What are your 3 big issues? The Future 1 more year for the partnership board Do we feed into health boards etc Want to set priorities and how Big changes on partnership board lots of changes in professionals losing carers as well Benefit changes RAS still not working Other news Big changes lost talkback General Advocacy group for all from Learning disabilities, mental health and older people
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Kirklees
What is going well? All is quiet at present on the cuts front, (although changes to the charging policy have not been universally welcomed, as might be expected). The Council is watching carefully for the Government's response to Dilnot in terms of the threshold for care. The LD budget was not cut this year..... Carers have found funding to print the ' Getting the best outcome from the Assessment Process a Carers Guide' which is about to be distributed. We have just completed an application for a Community Partnership grant from the Council to enable carers to operate more independently, and to have a greater degree of guaranteed support. We are in the process of carving out a slot in the training programme for Local Authority Members to build up their awareness of carers and carers issues What are your 3 big issues? Significant issue about Personal budgets, and the ways in which their introduction can result in less real support. In particular, the allocations to meet particular needs via the Resource Allocation System appear to be routinely well below what is needed in real life, with an expectation that the assessor will 'seek an uplift' not being felt to be transparent or helpful. Discussions about supported living accommodation, and carers concerns that financial pressures have resulted in little or no communal space a trend which we hope will be reversed. Strong concerns about the cumulative impact of benefit changes and local cutbacks. We are going back to an era when being assessed becomes a parttime occupation in its own right with Local Authority assessments of needs, Personal Independence payment assessments as DLA disappears, and assessments for suitability to work all on the horizon. Other news Concerns about overlaps in provision at a time when budgets are so tight. In particular, there appear to be at least three organisations which offer brokerage, and two require a fee. Which do carers go to, and who pays the fee?

Bradford
What is going well? Transfer of supported accommodation, Day Services, Respite to providers seems to be going well Self advocates, carers and volunteers being trained to carry out support planning to speed up assessment process What are your 3 big issues? Presently going through consultation re charges for transport and needs Health: Trust becoming a foundation trust this year, fears that Learning Disabilities will lose its identity as very little mention of it in literature seems to be more towards mental health Other news Lyn Sowry who was the person responsible for changing lives programme is the new assistant director of Adult Services. This is a good thing as it is someone we can talk to and is not afraid of challenging and achieving change Have had a partnership board development day

Wakefield
What is going well? The cabinet member responsible for social care attends our partnership board and has assured us that there are no proposals to cut front line services in 2012/2013 The Partnership Board has agreed to meet more frequently than they have been in the last 12 months What are your 3 big issues? We are still waiting to be involved in staff training. Have been told that they will do this The reinstatement of the 20 attendance fee payable to elected carers and service provider reps People are caring through transitions with need that are expensive to meet. The fear is that existing users may have to suffer as a result How we will fit into the local scene as Health Watch changes

Our Big issues & priorities Personalisation Support of Information Poorly trained, briefed and managed staff RAS not working Lack of feedback Transport / meal costs

New structure Who does what Staff training Local elections screen Health Foundation Trusts too big, LD lost in them

Advocacy support for going to meetings Generic advice No new activists Peer support needed for sharing strategies

Action: Dave will send the summary to the NVFF & attend the meeting on our behalf

Our priorities for action & collaboration

We worked on some key questions on priorities for the future 1. What is the role of the group? 2. What should we work on? 3. Who should we work with? 4. What are the key questions to ask locally? Here is a summary of what the group said under the questions above: What is the role of the group? - Network with other carers groups - Link / affiliate to others like VODG - Peer support keeping going - Educate ourselves get information to pass on - Discuss local and national issues differing view / experience work on all levels - Help us hold LAs and NHS to account - Shared voice
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What should we work on? - Sharing and Support meet frequently - Have a page and forum on the Inclusion North website link to others - Work together to identify gaps share resources and sign post Who should we work with / talk to? - Partnership Boards - Health and Well being boards - Commissioners do a jargon buster - All Stakeholders LINKS HealthWatch and other carers - Self advocates start by sharing outcomes of the meetings What are the key questions to ask locally? - Why arent we co producing? - What are the lessons for doing it that way? - How will this group be funded? Here is what the individual groups said under the questions above: Role of the group - Facilitate networking amongst regions - Share good and bad practice - Give information to carers to pass on - Affiliate to other umbrella organisations - Share info / good ideas - Networking peer support - Signposting - Discussion of local / national issues - Educating ourselves - Keeping up with change What should it do? - Help achieve aims - Keep everyone up to date (national / local issues) - Meet at frequent intervals - Sharing good practice and supporting on another - Raise issues on multiple levels - Working with other groups Who should we talk to? - Stakeholders commissioners / service providers / carers / self advocates - Anyone who could have / an impact on Learning Disabilities - People in the know - Invite speakers on relevant issues - Carers, Self Advocate etc - Co Production
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What are the questions? - Funding to guarantee existence - Why are we not there right at the beginning - Why are you doing it the way you are - Why are you finding it so difficult to implement personalisation - Whats happening with personal health budgets

3. Any other business

Sam asked what day to meet is best for the group. There are pros & cons for everyone but we agreed that the next meeting will be on the 2nd Thursday of the month. The December meeting is a Wednesday because that is the only day we can get the Folk Hall Date of next meetings: 13th September 12th December