nvff minutes february 2016 final

8/20/2019 NVFF Minutes February 2016 Final

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National Valuing Families Forum

8-9 February, Loughborough

Attending:

Vicki Raphael (co-chair), Julia Erskine (NW), Wendy Burt(Eastern), Helen Daly (Eastern), Jo Hough (Eastern), MarcellaCooper (London), Debbie Robinson (London, Dave Barker (Y&H), Stephanie Chapman (East Mids), Jodie Bradley (Carers withLearning Disabilities Network), Rhianon Gale (Hft), Liz Wilson(Dimensions), Christine Towers (Foundation for People withLearning Disabilities), Robina Mallett (Standing Commission forCarers), Shirley Corbett (West Mids), Cally Ward (ChallengingBehaviour Foundation), Bella Travis (Mencap)

Guests: Kerry Martin (co-chair National Forum of People with LearningDisabilities), Hannah Leach (supporter for Kerry), Zawar Patel(Department of Health), Jessica Wood (supporter for Jodie), SaraRyan (Justice for LB), Jenny Lacey (East Mids), Crispin Hebron

(NHS England)

Support ing:

Lucy Virgo, Angela Ellis (Inclusion North)

Apologies:

Stan Cooke (NE), Trevor Moon (NE), Viv Cooper (ChallengingBehaviour Foundation), Susan Kirkman (Autism Programme

Board), Pamela Gallagher (Hft), Chris Scholl (West Mids), DanScorer (Mencap), Louisa Whait (East Mids) Yasmin Surti (EastMids)

PLEASE NOTE: Cally Ward could only attend on 8th February and

Dave Barker, Helen Daly, Jo Hough, Sara Ryan, Jenny Lacey andCrispin Hebron could only attend on 9th February.


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Monday 8th February

Welcome from Vicki

Vicki opened the meeting. She asked that forummembers share their experiences about the benefitcuts. These will then be collated and taken to theProgramme Board.

Zawar Patel and the Department of HealthAction Plan

Presentation attached with these notes.

http://bit.ly/1oHc0aD

Zawar and colleagues have been consulting with arange of people and organisations about the actionplan. He is happy for the plan to be shared withforum members, and for members to feed back

their views.

Zawar outlined 3 key themes contained in the draftaction plan:

Giving people a life

People being part of the community

Health & social care being able to respond to

people’s needs

The plan is proposing to:

Span all ages

Be relevant to all people with a learningdisability and family carers

The plan will be used at least up to 2020, until thetime when the next election is planned.

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General feedback about the Action Plan from thegroup discussions included:

Should make good use of what exists noweg. the Care Act isn’t known about by many

Focus is too big in the action plan – shoulduse what already exists and make the linkswith this

There needs to be a commitment to investingin carers so that they are resilient and able tochallenge

Needs a greater focus on early years andintervention

People have different priorities and needs atdifferent times in their lives – the action planneeds to reflect this and not prioritise onetheme or strand more than any others

Needs to be core principles outlined on in theplan

Need to focus on outcomes for individuals

How will the work happen and connectionswith ie. other government departments bemade?

There needs to be a focus on rights andpersonalisation – everyone’s priorities will bedifferent

Feedback from the group discussions aboutthe 3 themes included:

Giving people a life

How will some of the links be made withother policies, organisations and government

departments?


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People being part of their community

People need to know what’s available andwhat their rights are

Initiatives like Safe Places are useful, butthese don’t get used or rolled out in eachlocal area

How can people access good, independentadvocacy?

Health and social care

Eroded fields of expertise – lack ofknowledge and awareness of learningdisability

Lip service to children, early intervention andprevention – this needs to be embedded

See images from the day

http://bit.ly/1SU30Lz

What happens next?

Zawar is going to the National Forum on 16th February, then the plan will be taken back to theProgramme Board on 23rd February.

There is also likely to be an event in mid-Marchwith a range of people and organisations that willshape the plan further.

The plan will be published around the end of Marchas long as the co-production element is doneproperly. Jon Rouse has said if more time isneeded to do this properly it will be given.

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Regional and Organisation’s Reports

Members fed back about their work. Some of thekey issues included:

Knowledge gap – professionals carrying outseveral roles and not able to offer families goodinformation, services and support

Cuts – families not getting good information aboutwhat good looks like

CQC Experts – cutting the rates of pay and

offering the contract to a different provider

See big messages paper to the Board here.

http://bit.ly/1Rng0WR

What’s working well?

Employment project that the Foundation aredelivering ‘When I Grow Up’

Confirm and Challenge groups in North West

Day 2

Welcome back

Vicki announced that she will be standing down as

chair after the next forum meeting. This will be a joint meeting with the National Forum for Peoplewith Learning Disabilities.

National Update

Vicki attended the Programme Board pre-meet.She gave the group an update on the key themesand agenda items that will be at the National

Learning Disability Board on 23rd

February.

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These included:

Learning Disability Action Plan Data and metrics – checking progress

No Voice Unheard, No Rights Ignored

Community Catalysts

Transforming Care and Premature Mortality

Jo Hough attended the Transforming Care

Assurance Board on behalf of the forum. Thereport Jo has prepared is attached here.

http://bit.ly/1QcKt7z

Marcella Cooper has attended the Sir StephenBubb group and was able to challenge some ofthe views and approaches at this. She has sent ina typed script of the meeting.

http://bit.ly/20V6BID

http://bit.ly/1T6TSUs

Marcella (alongside Sue Kirkman) has also beenpart of the Positive Behaviour Support fundingpanel. She will keep updating the forum about this.Report here

http://bit.ly/1T6TZiQ

Helen, Julia, Steph and Vicki have been attendingthe sessions about the revised Self-AssessmentFramework. Crispin Hebron is coming to thismeeting about this.

Forum members have been talking to people whoare setting up Learning Disability England.

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They ran a session for families which Liz, Vicki andWendy attended. It is still not clear how and what

will happen around this.

There is a Homes Not Hospitals pack about to beprinted. Both forums have inputted into thispublication and copies are going direct to theregions.

Introductions

Vicki welcomed some of the guests and membersarriving to the meeting.

Forum members introduced themselves, sayingwho they were, where they had come from andwhat their placard would say if they were part of acampaign.

Mazars Report

Rhianon and Liz gave a short presentation aboutthe main findings in the Mazars report.

There was a lot of discussion about personalresponsibility and forum members shared thethings that they find difficult.

Dave shared a letter from one of the Y&H regional

forum family members about the circumstances ofher son’s recent death.

Forum members were asked to think about actionsboth for themselves and for the forum as a whole.See the flipcharts here.

http://bit.ly/1mXE73I

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A subsequent discussion following the forum viaemail came up with some initial broader actions:

NVFF to use their big messages slot to talkabout Mazars at the Learning DisabilityBoard

Each region to ask that all deaths of peoplewith learning disabilities are investigated nomatter what is on the death certificate (EssexPublic Health have committed to reviewlearning disability deaths as a matter of

course)

NVFF to ask for the LeDeR work to beembedded and to extend to people insupported living

Each region to use the FOI templates fromthe North West to challenge what ishappening in their region

NVFF to call for a robust system of

investigation based on the Police ComplaintsCommission (see Oxfordshire Family CarerSupport Network response to Mazars report)

NVFF to press for external scrutiny of deathsof people with learning disabilities

Learning Disabilities Mortality Review (LeDeR)

Robina went through the presentation of hercolleague, Pauline Heslop. This is attached tothese notes.

http://bit.ly/1Q04q3E

Two key elements of the programme will be:

Local review of deaths

Core data collection

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Comments and questions from the group included:

Will the reviewers be able to effectivelychallenge information contained withinpeople’s notes?

Will the reviewers have access to all thenotes and records that they need to carry outa comprehensive review?

It seems unfair that family members don’tappear to be paid for their time when theyare part of a review team

Will the reviews that uncover neglectful ordangerous practices be set up in such a waythat they can take relevant action?

Action:

Forum to write to the programme leads toask if family carers will be paid for their time

when part of a review

Robina will check how comprehensive theinitial phase of the review will be (core dataset)

Self-Assessment Framework

Crispin explained that he is seconded to NHSEngland for 4 days per week. Initially, this was a 6-month secondment but has now been extended forthe next financial year.

Crispin asked the group to consider what his workpriorities should be.


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The priorities that came from the group included:

Learning Disability Liaison Nurses Health Checks and Health Action Plans

Medication and pharmacists

Screening (work with the screening lead oncommunications at Public Health England)

Inconsistency (developing a standardisedtemplate for the Annual Health Check)

Hearing and sight tests Health Equality Framework

Self-Assessment Framework

Many of these things have been picked up aspriorities by Crispin and his colleagues.Some of the work is listed here in green.

All services that are required to meet their equalityduties will need to know in advance of treatmentthat people have a learning disability. The NHSSpine Summary Care Records can tell clinicians ifpeople have a learning disability. At the moment,individual records contain limited information butthere is scope to extend what is included.

Crispin also mentioned that he has applied formonies to carry out further research that will buildon the findings of the Marmot Review:

http://bit.ly/1T6ULfC

There has been a group of people who have met toagree what the Self-Assessment Framework (SAF)should look like in the future.

A piece of work has been commissioned to enable

the Health & Social Care Information Centre

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(HSIC) to develop the General Practice ExtractionService (GPES). Public Health England will then

use this data to compile a local data set. Localareas will then need to make sense of what this istelling them and how this is aligned with what life isactually like for local people.

Discussions are underway now to determine ifthere is funding to enable local people and areas togather this qualitative data.

Transforming Care – Doing the work in theregions

Tricia couldn’t dial in as the sound quality was toopoor.

Lucy asked the regional reps to share informationabout:

Their regional approach

What people are positive about

Any worries or concerns

See information here.

http://bit.ly/1RnhGzJ

Future Service Model Specification project

Kevin Elliott from NHS England skyped into theforum to talk about the project which will look at:

What do people want from services in thefuture?

How can we learn from the good servicesand support that already exist?

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Kevin was looking for forum members to be part ofa working group that will meet in March and

September.

He also talked about work on a dynamic registerthat he was looking for forum members to beinvolved with.

Kevin was due to send a briefing paper but someof the information within that does not correspondto what was said on the Skype call so we arewaiting for this to be updated before sending therequest out.

Burning Issues

Forum members and co-ordinators were asked tosign the Working Together Agreement and send itback to Lucy at the Inclusion North office – eithervia email or a paper copy.

Forum members were asked to complete theirexpense claims within 2 weeks of the forum forprocessing.

The next National Valuing Families Forum after will be on the 6thand 7th June 2016 and will be held at Burleigh Court in

Loughborough.

The afternoon of the 7th June will be a joint meeting with theNational Forum of People with Learning Disabilities.

The National Valuing Families Forum agreed to meet at a slightlyearlier time of 1pm and not continue the formal meeting into theevening. There will be an opportunity with this earlier time slot forCTR experts to share themes and develop a co-ordinated

response on their role/the effectiveness of the CTRs from theregions to feedback to NHS England.

nvff minutes february 2016 final

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