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Yorkshire & Humber Regional Family Carer Network Notes of the meeting held on 10th September 2015

Attendees: Rosie Tozer (York) Lucy Horobin (Wakefield) Dave Barker (North Lincs) Barrie Warner (Wakefield) Sam Clark (Inclusion North)

Maggie Kelly (York) Gillian Payne (York) Hazel Griffiths (North Yorks) Liz Wilson

There were apologies from: Jean Riley John Kirkman Susan Kirkman Mike Spinney Maurice Hayes Adrian Ashberry

Barbara Thompson Kathy Read Kathryn Spinney Ian Parkinson Jenny Hayes

1. Welcome and introductions Sam welcomed everyone to the meeting. Law Commission Consultation on Mental Capacity and Deprivation of Liberty Sam shared information about this consultation by the Law Commission. They are doing it as the current process for safeguarding people from restrictive treatment or care is viewed as bureaucratic and not achieving the outcomes people want. The Law Commission have done several summaries and an easy read version of the consultation and their proposals. The resources include 2 short films explaining the ideas. You can find them at http://bit.ly/1iee1Y4 The consultation ends 2nd November The network discussed the ideas and pulled together our own feedback http://bit.ly/1iC11fK Sam will make sure the response is submitted to the Law Commission

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2. National and Regional Update

Book launch

Gillian and other family members have written a book that is their stories

as families. It is being launched on 30th September in York. Gillian will let

us know how to get copies but in the meantime the launch information is

http://bit.ly/1KnT5c9

Conference – Stepping Hill hospital organised in partnership

between families and professionals

This annual conference, Autism a hands on approach is on 24th

November. Rosie is running a workshop about sibling relationships.

You can see the flyer here http://bit.ly/1OUkkL2

National Valuing Families update

There was information on the mortality review, the national programme

board and Transforming Care Board.

You can see the notes and resources from the meeting here

http://bit.ly/1US9Brv

The NVFF discussed the review and asked all regional networks to look

at their own feedback and how they can strengthen the network.

The group discussed this and agreed to raise the profile of the group and

people’s understanding of its work.

We will

1. Map what meetings or groups there are and ask members to go as

formal reps from here or to represent this network if they are going

anyway.

Sam will organise some mapping and Dave will suggest a way of asking

people to represent.

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Liz will broker an introduction to Parent carer Council colleagues so we

can try to get contacts to connect with them.

2. Create one or 2 postcards that explain the NVFF and regional

networks and members can easily give out

Sam will suggest there is a national template and regions can add

in their bit

3. Have a Facebook page that includes Inclusion North updates and

other local stuff

4. Get one of those cheap sail things that can have at any meetings

that reps attend just to raise awareness

To understand why some people don’t come to the meetings or make it

easier to come

1. We will try to ask people / find out through networks – Liz and Dave

are up for going to Partnership Boards or similar if they can. Sam

will ask the Inclusion North team to ask on their travels. As part of

that we will explain the history

2. We will meet in Leeds at least once and try to connect West

Yorkshire people from there.

Sam explained that as Inclusion North coordinate the national work

now she thinks there is a conflict with her supporting the regional

network. She will be handing over to another member of Inclusion

north team but she will keep in touch about that.

There was some discussion about the NVFF. The group had

feedback on the NVFF and strengthening that they think the name

needs to change to be clearer on what it is and who it is about as

Valuing People has ended and many structures changed.

It would also be helpful to find ways of capturing the informal

stories, ways people support each other from here – the real life in

the supermarket kind of conversations.

Sam and Dave will feed these back.

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National policy news or developments

Mortality review Following the confidential enquiry into the deaths of people with Learning Disabilities a 3 year mortality review has been established to review and ultimately reduce the early deaths of people with learning Disabilities. The review will be led by Norah Fry research centre of Bristol University and was commissioned by the Health Quality Improvement partnership http://www.england.nhs.uk/2015/06/18/reduce-prem-mortality-ld/

Transforming Care – progress report

The Transforming Care Assurance Board (which includes NHS England, the Department of Health, the LGA, ADASS, CQC and Health Education England) published on 3rd July a progress report on the work outlined in Transforming Care next steps (January 2015).

It includes clear milestones for 2015 /2016.

http://www.england.nhs.uk/ourwork/qual-clin-lead/ld/transform-care/

Time is running out – Stephen Bubb response to Transforming Care progress

Published 14th July Stephen Bubb welcomes progress in some areas but criticises NHS England’s lack of dialogue so far with providers’ especially Third sector ones who will be critical to the changes needed in community support. He proposes an independent transitions taskforce

https://www.acevo.org.uk/news/launch-winterbourne-view-time-running-out-report

Fast track programme

NHS England, LGA & ADASS have launched the Fast-Track programme to test and accelerate service re-design. The 4 areas are Greater

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Manchester and Lancashire; Cumbria and the North East; Arden; Herefordshire and Worcestershire; Nottinghamshire; and Hertfordshire.

http://www.england.nhs.uk/ourwork/qual-clin-lead/ld/transform-care/ft-sites/

The sites are submitting Transformation plans for 8th September with a view to the work starting very promptly.

It is expected that all areas will be expected to demonstrate similar service redesign across systems in 2016 and will benefit from the learning from the 4 Fast Track areas.

Governance – Co Chair recruitment for Assurance Board

The Transforming Care Assurance Board is advertising for a self-advocate to Co-Chair it with the Minister (Alistair Burt)

Closing date 18th September

https://www.gov.uk/government/organisations/department-of-health/about/recruitment

Care and Treatment Reviews Resources and guidance

To support the move to Care and Treatment reviews becoming business as usual NHS England have published a range of guidance and final resources (subject to final testing).

These include guidance on and films from Expert Advisors including Di Lofthouse who many of us know.

https://www.england.nhs.uk/ourwork/qual-clin-lead/ld/ctr/

In Yorkshire and Humber NHS England have commissioned Inclusion North to act as a hub coordinating Expert by Experience Advisors.

Sam and Liz explained more about the Expert Advisor role. Sam said they are recruiting new advisors who are family members or self-advocates. Lucy coordinates this for Inclusion North so do contact her for more information at lucyvirgo@inclusionnorth.org

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The National Learning Disability Board (formerly the programme board)

The programme board held its first meeting in July following a review in June. Minutes are at https://app.box.com/s/ni0joug4w3wmlvm6jyzp The board is developing its work plan and discussed the government response to the Green paper (No right ignored, no voice unheard) which is expected this autumn. YH Leadership group

The next meeting is 28th October in Leeds

All network members are welcome. You can find out more here

http://bit.ly/1Ni8k7d

3. Regional updates Network members present shared their views on what the key issues are locally, good things happening in their area and other information.

Report to the National Valuing Families Forum

Region/organisation: Yorks and Humber

Date:

What is going well? From a small meeting there was some evidence of increased interest in some localities with Wakefield discovering a new carer who may also attend regionally.

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What are your 3 big issues? 1. Budgets again a main issue with concerns over with issues such

as admin costs of budgets now coming out of what is allocated and in effect reducing the amount paid. Homes being closed with the hope of private sector picking up so unlikely to cost less.

2. Great concern over how easy it can be for people to be sectioned and the cartel of professionals and dubiously independent “appointed,” advocates feeding the “cash cow”!

3. Increasing capacity and being advised by the review has resulted in discussions about how we present ourselves and to whom? Postcards and banners to be investigated for marketing as well as the target audience to include children’s organisations.

Other news:

4. Any other business None Date of next meetings: 3rd December 2015