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North East Regional Family Carer Network

Notes of the meeting held on 7th March 2013

Attendees: Liz Barraclough (Hartlepool) Ray Venus (Gateshead) Lillian Nelson (Northumberland) Stan Cooke (Northumberland) Lynn Gray (Newcastle) Helen Elliott (Newcastle) Dave Baker (Yorkshire & Humber rep)

Kathleen Ainsley (North Tyneside) Eibhlin Inglesby (Sunderland) Trevor Moon (Newcastle) Pam Cowe (Sunderland) Brenda Boyd (North Tyneside) Jacqui Adams (Contact a Family)

There were apologies from Bill Norman (Newcastle) Richard Smith (Middlesbrough) Gaynor Mitchell (Sunderland) Susan Willis (Hartlepool)

Debbie Hindson (Durham) Linda Dickinson (Redcar and Cleveland)

Welcome and introductions Sam welcomed everyone to the meeting. 1. Parent Carer Forums - Strengthening Parent Carer Participation Jacqui Adams from Contact a Family came & explained how the Parent Carer forums across the region & country are structured. The structure closely mirrors the National Valuing Families Forum structure. The contact details for the Parent Carer Forums in the NE are at the end of the notes Jacquis presentation follows

Parent Carer Forums

Jacqui Adams Contact a Family Strengthening Parent Carer Participation

If you want to know how well a pair of shoes fit you ask the person wearing them not the person who made them.

The Drivers
Every Child Matters (2004)
The National Service Framework a Duty to Involve (Section 242 of the 2006 NHS Act) Aiming High for Disabled Children (2008)

The Short Breaks Duty (2011)

The current Health and Social Care and Children and Families Bills include public and patient involvement (2012)


We would like your input in planning services


Thanks ???

The Participation Triangle

Participation levels Parents involved in participation Parents involved in running groups or supporting others Families connected to other families via interest * groups Information levels Families receiving some support/service * Interest or issue groups could be condition specific, connected to a school, to a leisure pursuit, to a particular local area or community etc. They may be run by services (e.g. SEN drop-in), voluntary agencies or parents

Consultation levels

All families with disabled children

All families in a local authority area

Meaningful Participation
Good Information Honest Consultation Effective Participation Co-production

National Gover nment

National Network of Parent Carer Forums (NNPCF)

Local Childrens Trust Boards/ Health & Wellbeing Boards

All England Regional Forum events Nor th East Regional Parent Forum
Local Parent Carer Forums Local parents and carers

Support for Forums

Regional Advisors Laura Burling is ours Forum2Forum Development of regional networks Support National Network of Parent Carer Forums Learning & Development Programme Associates Linking with other partners and organisations Administration of the Participation Grant

Together we can make a difference

Useful Links
The How To Guide from Contact a family: The National Network of Parent Carer Forums website: The Council for Disabled Children: The National Children's Bureau/ Every Disabled Child Matters:

Contact Details
Laura Burling - Parent Carer Participation Advisor (North East and Yorkshire & Humber) Phone: 01625 537 342; Email: Jacqui Adams - Regional Development Manager North East & Cumbria Phone: 0191 213 6300; Email:

Kathleen Ainsley shared her experiences of supporting her son through the Get a life project & wanting his own home & job. Other families interest in their experience led them to start the Cornerstone Caf families sharing learning & experiences together. You can read an article Kathleen wrote about this at: You can see the film of Mathew talking about his job & being a role model at: The group discussed how we can get smarter at sharing information that families really want or need. It feels like an important issue we have yet to crack but meetings like this help & many members share the information widely

2. Employment guide for families

Dave Barker from the Yorkshire network came & shared work he is continuing voluntarily but started as part of the Valuing Employment Now project. It is a guide for families to help them support their family member get a job. The group worked on the draft guide that Dave is pulling together. The group really support the guide being developed & the intention. He took away all the ideas & will share

developments with the group. Dave offered to come & work through it with local carers group. Kathleen & Dave agreed to connect up again after the meeting & Dave will share contacts & information with Liz on people with more complex needs working. Eibhlin will ask groups in Sunderland if they want to connect with this work. Sam has Daves contact details if anyone wants them.

3. National & Regional Update

National Valuing Families Forum (NVFF) update Sam shared the big issues and priorities from the update for ADASS Structural changes in health continue and take a lot of attention from some people. Sam shared the update on the Winterbourne View Board set up now to lead the work & headed by Chris Bull We all agreed that the Winterbourne View targets are very important but we do not want them to distract from the important work to improve life chances for all people with learning disabilities. HFT Guide to benefit changes HFT have done a guide for families on the changes that are planned or happening soon including Personal Independence Payments, Universal Credit etc

Winterbourne View Questions & Top Tips The network agreed the Questions & Top Tips they developed in December can be distributed Sam will send them with the notes or send paper copies if requested or you can get it from

National Institute of Clinical Excellence (NICE) NICE are consulting on what topics or issues they should work on to develop guidelines or best practice next. Inclusion North & the North West Training & Development Team have done a more accessible version

Advocacy project Stan updated everyone on the advocacy project he is working on as the Family lead. As part of the responses from PCTs about people in NHS care or out of area the SHA identified that it was not clear what advocacy is funded for these people, how good it is or what difference it makes. The SHA is working with Inclusion North to 1. Support Self Advocacy in specialist services - Pilot development work to explore and develop a model to support self advocacy in specialist services 2. Families Advocacy to explore and develop approaches and models to support family involvement 3. Develop advocacy awareness and responsibilities with direct workers in Specialist services understanding and exploring what organisations need to do to best develop this 4. Support and write up the Tees approach to Commissioning Advocacy Stan shared a summary of his research so far & is keen to talk with families who have experiences to share or ideas. Stan will come & share the learning at the September meeting. Eibhlin will get in touch with Stan to share the Carers Management Board model in Sunderland. Some of the work of this project will be shared as part of the national actions after Winterbourne View. North East Learning Disability Partnership The North East Partnership did some work on Personalisation at the September meeting. The report has now been discussed by ADASS you can read their feedback on Inclusion Norths website at ADASS are interested to share how local areas are involving people now as structures change. The group are interested in looking at the future of Partnership Boards as well as ADASS as there is a lot of concern about issues being lost as

Driving up Quality Alliance The Driving Up Quality Alliance is a group of provider representative organisations and large individual providers that are committed to taking radical steps to both avoid the recurrence of what happened at Winterbourne View and ensure that people with learning disabilities with behaviour that challenge can look forward to an ordinary life with high quality housing and support in their communities.

The organisations involved in developing the proposal are the Housing & Support Alliance, English Community Care Association, Voluntary Organisations Disability Group, Sitra, Association for Real Change, National Care Association, Adults with Learning Disability Services forum, National Care Forum, NHS Confederation, Shared Lives Plus, Four Seasons Healthcare Group and the Independent Healthcare Advisory Service. Ray went to one of the workshops they were holding to create a set of quality principles. Ray was pleased he was there as he was the only family member. He felt it was useful & will share any news or updates he gets Liverpool Care Pathway Eibhlin told the group about sessions being held in Leeds & Preston as part of the review of the Liverpool Care Pathway led by Baroness Neuberger. Their carers centre has been unaware & others seem not to know either but everyone felt it important families can get involved. There is a call for evidence open too. The Department of Health page on this is:


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. The big issues for everyone we summarised as: What is going well / good stuff? Community Whisper pilot (Hairdressers) Roving hairdressers as well. Transition group in carers centre Sunderland People First changed to Real lives Castledene and Cheviot view open until 2014 then consultation. Planning ahead workshops for older carers New care lead officer, carers project in hospitals hope to be reactivated. Social activities project with Inclusion North Changing commissioner to support going out (attitudes / expectations) Social enterprise for own business. Advocacy group Finalists for experience award Conference on Health and Well being board. Nigel Devine Day for parents carers What does a good life look like Visiting Sunderland to visit an employment project in extra care Inspired by RFCN meeting to go ask questions.

The Challenges / what isnt working School holidays & range of supports available Bedroom tax People deemed Mild to moderate & what support available - Fair access to Care criteria Council internally focused - no consultation 18 people post winterbourne coming back concerns about to what support Learning Disability services budget cut by 1/3 & the knock on effect Dedicated Learning Disability team disbanded Welform reform information only available online. Challenges service cuts, welfare reform, watering down

North East Regional Round Up Area Date

Sunderland March 2013

What do you want to tell us about? What is going well? Community whisper hairdressing project Transition group at carers centre starting and gathering moment SPF launch at Real lives What are your 3 big issues? Council provision changing without consultation with carers Pressure on LA to rehome out of area residents post winterbourne. Knock on effect on social work team capacity for existing residents / carers. Multiple effect of welfare reform on the line support from welfare advice replacing face to face support. Liverpool pathway consultants.

Area Date

Newcastle March 2013

What do you want to tell us about? What is going well? Castle Dene (respite care for adults with learning disabilities) and Cheviot View (respite for children) will not close in April 2013 but will stay open for another year. Carers will be invited to put their views forward about post 2014 provision.

What are your 3 big issues? Reduction of play provision in school holiday for children with disabilities. This will affect learning disabilities and physical disabilities. The Bedroom tax implications The new carers lead officer is to be appointed in April 2013 when it is hoped that the Carers project in Hospitals will be picked up again. This will be of benefit to carers of people with learning disabilities in hospitals and the staff. Could be linked to the reasonable adjustments awareness. Where will carers views be highlighted to the Well being for Life board? There is no direct carers representation on the board, for carers of people with learning disabilities/ PMLD who require a high level of lifelong care. Workshops at Carers centre Newcastle Planning ahead for older carers starting March 14th for 2 weeks. Carers Rights lecture at Northumbria University Prof Colin Driscoll. Feb 28th very empowering.


North East Regional Round Up Area Date

Northumberland March 2013

What do you want to tell us about? What is going well? Patient experience network for carers will being checks. Developing relationships with the police, hate crime reps attending partnership boards developing accessible tools for victim support. Health and well being board partnership via communications and engagement strategy. What are your 3 big issues? Same issues re. Housing benefits, service cuts Priorities may become watered down and drift e.g. Autism group Need to with new CCG to raise profile of carers.

5. Any other business

None Date of next meetings: 30th May 5th September 5th December


North East - Parent Participation Forums

Area Darlington Forum Name Darlington Parent Carer Forum Website Email Telephone 01325 489999

Making Changes Together Durham

0191 5873541


Parents in Power

0191 4901032


1 Hart, 1 Mind, 1 Future

01429 284876


Parents 4 Change



Families United

0191 281 2485

North Tyneside

All Together Better


In It Together

07739 830 110

Redcar & Cleveland

Small Steps = BIG CHANGES


South Tyneside

Listen for a Change


Stockton United for Change s&fref=ts

01642 647 481


Sunderland, Washington & Coalfields Parent Carer Council