NE Family Carers Notes 7.3.13

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North East Regional Family Carer Network Notes of the meeting held on 7th March 2013

Attendees: Liz Barraclough (Hartlepool) Kathleen Ainsley (North Tyneside) Ray Venus (Gateshead) Eibhlin Inglesby (Sunderland) Lillian Nelson (Northumberland) Trevor Moon (Newcastle) Stan Cooke (Northumberland) Pam Cowe (Sunderland) Lynn Gray (Newcastle) Brenda Boyd (North Tyneside) Helen Elliott (Newcastle) Jacqui Adams (Contact a Family) Dave Baker (Yorkshire & Humber rep) 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 Jacqui’s presentation follows

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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.’

Anon

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)

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Start Here:

We would like

your input in

planning

services

Thanks

???

OT

ECMA

LDPBESRC

CAF

CAMHS

HCNG

CCG

SENSA

CSCI

PCT

NCVS

FACT

HLC

MALAP

DWP

CNTCUK

CNSF

SHA

EYDCP

LAC

SSD

CWD

DFECHCG

Why don’t

parents & carers

get involved?

The Participation Triangle

Parents

involved in

participation

Parents involved in running

groups or supporting others

Families connected to other

families via interest * groups

Families receiving some

support/service

All families with disabled children

All families in a local authority area

* 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

Participation levels

Consultation levels

Information levels

Meaningful Participation

• Good Information

• Honest Consultation

• Effective Participation

• Co-production

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All England Regional

Forum events

National Government

North East Regional Parent

Forum

Local Parent Carer

Forums

Local Children’s Trust

Boards/ Health &

Wellbeing Boards

Local parents and

carers

National Network of Parent Carer

Forums (NNPCF)

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

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Useful Links

• The How To Guide from Contact a family:

www.cafamily.org.uk/families/parentparticipation

• The National Network of Parent Carer Forums website: www.nnpcf.org.uk

• The Council for Disabled Children: www.councilfordisabledchildren.org.uk

• The National Children's Bureau/ Every Disabled Child Matters: www.ncb.org.uk/edcm

Contact Details

Laura Burling - Parent Carer Participation

Advisor (North East and Yorkshire & Humber)

Phone: 01625 537 342;

Email: [email protected]

Jacqui Adams - Regional Development Manager

North East & Cumbria

Phone: 0191 213 6300;

Email: [email protected]

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 Café – families sharing learning & experiences together. You can read an article Kathleen wrote about this at: http://www.centreforwelfarereform.org/library/by-date/cornerstone-cafe-parent-carer-group.html You can see the film of Mathew talking about his job & being a role model at: http://www.youtube.com/watch?v=jzEsHGTCCD0 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

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developments with the group. Dave offered to come & work through it with local carer’s 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 Dave’s 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

http://www.hft.org.uk/Supporting-people/family-carers/Resources/benefitsguide/

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 http://inclusionnorth.org/about/news/family-carer-network-top-tips-following-

on-from-winterbourne-view.html

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 http://inclusionnorth.org/about/news/nice-consultation-of-next-projects.html

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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 North’s website at www.inclusionnorth.org/resources/information-packs/north-east-annual-partnership-board-resources/ 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.

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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: www.dh.gov.uk/health/2013/02/lcp-sessions/

4. 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 pre-returned 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.

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The Challenges / what isn’t 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 Sunderland

Date 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.

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Area Newcastle

Date 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 carer’s 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.

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North East Regional Round Up

Area Northumberland

Date 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 rep’s 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

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North East - Parent Participation Forums

Area

Forum Name

Website

Email

Telephone

Darlington

Darlington Parent Carer

Forum

https://www.facebook.com/pages/Darlington-

Parent-Carer-Forum/118239898289487?ref=ts&fref=ts

[email protected]

01325 489999

Durham

Making Changes Together

www.mct.co.uk

[email protected]

0191 5873541

Gateshead

Parents in Power

www.parentsinpower.btck.co.uk

[email protected]

0191 4901032

Hartlepool

1 Hart, 1 Mind, 1 Future

www.onefuture.org.uk

[email protected]

01429 284876

Middlesbrough

Parents 4 Change

www.parents4change.co.uk

[email protected]

07584055639

Newcastle

Families United

www.newcastlefamiliesunited.com

[email protected]

0191 281 2485

North Tyneside

All Together Better

www.alltogetherbetter.info

[email protected]

Northumberland

In It Together

www.in-it-together.org.uk

[email protected]

07739 830 110

Redcar & Cleveland

Small Steps = BIG

CHANGES

www.smallsteps-bigchanges.co.uk

[email protected]

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South Tyneside

Listen for a Change

www.listen4achange.org.uk

[email protected]

Stockton

Stockton United for Change

https://www.facebook.com/sufc.stockton?ref=t

s&fref=ts

[email protected]

01642 647 481

Sunderland

Sunderland, Washington &

Coalfields Parent Carer Council

www.swcpcc.org.uk

[email protected]