1. NVFF Oct 15 Minutes Final

7/26/2019 1. NVFF Oct 15 Minutes Final

1/12

National Valuing Families Forum

19-20 October, Loughborough

Attending:

Vicki Raphael (co-chair), Julia Erskine (NW), Wendy Burt(Eastern), Marcella Cooper (London), Debbie Robinson (London,Dave Barker (Y&H), Stephanie Chapman (East Mids), EstherPeacock (South East), Patricia Charlesworth (Carers with LearningDisabilities Network), Rhianon Gale (Hft), Liz Wilson (Dimensions),Christine Towers (Foundation for People with LearningDisabilities), Robina Mallett (Standing Commission for Carers),Chris Scholl (West Mids), Cally Ward (Challenging BehaviourFoundation), Dan Scorer (Mencap)

Guests:Craig Hart (co-chair National Forum of People with LearningDisabilities), Pamela Gallagher (Hft), Louisa Whait (Leicester LA),Yasmin Surti (Leicester LA), Tricia Nicoll

Support ing:

Lucy Virgo, Angela Ellis (Inclusion North)

Apologies:

Stan Cooke (NE), Trevor Moon (NE), Helen Daly (Eastern), VivCooper (Challenging Behaviour Foundation)

PLEASE NOTE: Pat and Louisa were only able to attend on the19thOctober. Steph was only able to attend on the 20thOctober.

Monday 19th

October

The NVFF moving forward

Tricia supported members of the forum to thinkabout the forums purpose and structure.

The work the forum did is outlined with thesenotes. http://bit.ly/1lvaQga
http://bit.ly/1lvaQgahttp://bit.ly/1lvaQgahttp://bit.ly/1lvaQga


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The forum agreed that Vickishould remain as

co-chair with support from a small planninggroup. Liz, Julia and Rhianonput themselvesforward for this group.

Transforming CarePlanning the work in theregions

Vicki introduced this piece of work and Tricia.Tricia is working with Inclusion North to deliverthis work. The slides Tricia used to outline theproject are included with these notes. Triciaoutlined the work to date:

The proposal that Inclusion North submittedto the Department of Health

The design day that people from bothforums attended and Tricia facilitated

Tricia supported the forum members to thinkabout:

How we can facilitate this in our region

Is this something we can do in our region,or is there someone else better placed?

What is already going on that we mightbuild on

What other support is needed

The notes from this session are included here:

http://bit.ly/1O386Oj
http://bit.ly/1O386Ojhttp://bit.ly/1O386Ojhttp://bit.ly/1O386Oj


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Regional reps meeting

The regional reps met to discuss informallyissues across their area. Their discussion lookedat cuts to services and support, professionalsmisinterpreting the Care Act, issues with flu jabsand prescriptions and the need to invest in familyleadership.

Tuesday 20th

October

Welcome and National Update

Vicki welcomed everyone to the day.

Vicki updated the group about some of the keynational developments.

LB Inquestthere was a group discussionabout how the forum could let Sara know thatthey are thinking about the family and show theirsupport.

Transforming Care Assurance Boardthemeeting for Thurs 22ndOctober has beencancelled at very short notice.

ACTION

It was agreed that the NVFF would write to theMinister about this and the process of appointingthe co-chair to the board.

http://bit.ly/1QTnBOW

Vicki went to the board in July. The membershiphas now been revised and is focused more on
http://bit.ly/1QTnBOWhttp://bit.ly/1QTnBOWhttp://bit.ly/1QTnBOW


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the issues brought back by self-advocates andfamilies. The minister and government are very

committed to the board. The work both forumsare beginning will be fed back to this board.

NHS Fast Track areas have now submitted theirplans. Within these they had to outline how theywould engage with families and self-advocates.

Department of Work and Pensions are leadingon some work around pro active supporting topaid employment. Amanda Wadsworth is thelead and forum membersparticularly Dave

Barkerare keen to link with this work.

Scott Watkin will now co-chair the TransformingCare Assurance Board.

Learning Disability Boardthe board hasdropped programme from its title. A first draft ofthe workplan for this group was shared at theboard, and it was agreed that the meetings

would be co-chairs by a self-advocate. This willbe Karen Flood.

There is renewed enthusiasm for theemployment work. Chris Cox will now beworking on the Green Paper so Zawar Patel willbe the Department of Health lead for the boardin future.

Ministerial Green Paper Roundtablebothforums were invited to take part alongside anumber of other organisations/providers. Theforums join message remained about theimportant of advocacy for families and peoplewith learning disabilities.

CHANGE CQC workCHANGE are very keento engage with both forums. Lucy will circulate

the information about this project when it isavailable. This led to a conversation about the
http://www.google.co.uk/url?sa=i&rct=j&q=&esrc=s&source=images&cd=&cad=rja&uact=8&ved=0ahUKEwjs4ejFiLvJAhXDvBQKHT4UCjAQjRwIBw&url=http%3A%2F%2Fwww.wearepeople2.net%2Fuseful-links%2F&bvm=bv.108194040,d.d24&psig=AFQjCNHhUhKY82URqHNHk1RPWRf8e8ULjQ&ust=1449073216328418http://www.google.co.uk/url?sa=i&rct=j&q=&esrc=s&source=images&cd=&cad=rja&uact=8&ved=0ahUKEwjHjMWIiLvJAhVJvBQKHQHpDc0QjRwIBw&url=http%3A%2F%2Fwww.bbc.co.uk%2Fouch%2Finterviews%2Fscott_watkin_learning_disabilit.shtml&bvm=bv.108194040,d.d24&psig=AFQjCNFLbycMxK0by7_z1owxARDKEoJjbA&ust=1449073086950158


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input of carers as part of the local inspectionprocess.

Skills for Carethey are keen to have amember of both forums on the PositiveBehaviour Support and Autism fund award panel

TransitionZandrea Stewart has asked forfamily input into some work around transition.There will be regional sessions and people

would be paid for their work and time. Vickiasked that people contact Zandrea directlyabout this.

Sir Stephen Bubba meeting has been set forDecember to outline the 12 month report andnext steps. Marcella remains the forum link forthis work. Rhianon let people know thatACEEVO are holding some consultation events

around Transforming Care and will send out thedetails.

Learning Disability Alliancein the past theforum has agreed to support the alliance.Recently, Simon Duffy from the alliance hasasked the forums to strengthen theirinvolvement and is clear that the alliance manynot continue if this support isnt given.

At the same time, a meeting has happened tolook at the setting up of Learning DisabilityEngland. This group would also like the supportand involvement of both forums.

There was a discussion about both these groupsand how the forums will work with them. See theActions sheet for the agreement.
http://www.google.co.uk/url?sa=i&rct=j&q=&esrc=s&source=images&cd=&cad=rja&uact=8&ved=0ahUKEwjQ6Nz0iLvJAhVCUhQKHTO1BiEQjRwIBw&url=http%3A%2F%2Flearningdisabilityalliance.org%2F&bvm=bv.108194040,d.d24&psig=AFQjCNHTXv-mT7hjTJfgfWnt0m0_B9abmA&ust=1449073311771861http://www.google.co.uk/url?sa=i&rct=j&q=&esrc=s&source=images&cd=&cad=rja&uact=8&ved=0ahUKEwiR2rjiiLvJAhUC6xQKHQ2PDSMQjRwIBw&url=http%3A%2F%2Fwww.skillsforcare.org.uk%2F&bvm=bv.108194040,d.d24&psig=AFQjCNGjnosthlKRGXOyzTVD44pDC_uLpA&ust=1449073264009003


6/12

Dans update on the work Mencap areinvolved in

Mencap have done some work on the WelfareReform Bill and this is available if forummembers would like to see it.

The Childcare BillMencap feels that theproposals outlined offer little to family carers ofchildren with a disability and will continue theirwork to challenge this.

Meeting the Challenge GuidesThere is a suiteof 11 documents including 6 guides and a legalpack around what good support looks like. Seelink

There are printed copies available and a postalbudget. People can get in touch with Dan if theywould like copies for their region.

Regional Reports

The forum discussed how their regional findingslink with the national work, and agreed what themain issues at both levels are:

Cuts to services and support

How the Care Act is being interpreted byprofessionals on the ground

The need to invest in family leadership

see Big Messages to the Programme Boardpresentation

http://bit.ly/1LNBzKf

http://bit.ly/1Nq3t4C
http://bit.ly/1LNBzKfhttp://bit.ly/1LNBzKfhttp://bit.ly/1Nq3t4Chttp://bit.ly/1Nq3t4Chttp://bit.ly/1Nq3t4Chttp://bit.ly/1LNBzKf


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UPDATEthe forums messages were takenvery seriously by the Board. They have asked

for a report/evidence about the impact of thecuts.

The issues around privatisation of pharmaciesmeaning prescription drugs being given out indifferent branding/languages has been takenforward by Dominic Slowie (National ClinicalDirector for Learning Disability) who hascharged Crispin Hebron (Clinical lead role inNHS England) with talking to pharmacists abouthow people with learning disabilities areappropriately prescribed for. They will be lookingat adding info onto the spine of the prescriptionfor the pharmacist.

Dominic Slowie is also taking a lead on theissue of some areas not offering flu jabs topeople with learning disabilities. Hazel Griffithshas very publicly stated that people with learing

disabilities are a priority group for the flu jab.

Feedback from the allies and co-ordinatorsmeetingReflection on the work with Tricia on roles andresponsibilitiesthis group recognised that theyare valid and useful to the work of the forum,can communicate with a wider group of familycarers and share consultations.

This group also reflected that sometimes it canbe a hindrance for just the reps to be present forthe regional update session. Could the allies etcbe present at this as observers?


8/12

Update on the IHAL work with Chris Hatton

Chris talked about IHALs work priorities, andtalked about the importance of families and self-advocates being involved in developingquestions.

The annual digest of statistics of people withlearning disabilities in England should be readyby the end of the year. There will be easy readsummaries and Chris will be talking to the IHALadvisory group about which areas to focus on.

Chris talked about the reasonable adjustmentguidesguides on cancer screening anddysphasia should be out soon and there will bea guide on obesity. They have also been doingsystematic reviews of evidence in areas wherethere is not muchthey have recently done oneon epilepsy and constipation will be the next one

focussed onthis may also be a topic for areasonable adjustments guide.

Chris asked for suggestions from the forum forfurther systematic reviews/reasonableadjustments guides. Callymentioned multiplelong term conditions. Wendysuggested posturalcare. The forum also suggested menopause andmenstruation generally.

See Chris slides here:http://bit.ly/1lvbH0j
http://bit.ly/1lvbH0jhttp://bit.ly/1lvbH0jhttp://bit.ly/1lvbH0jhttp://bit.ly/1lvbH0j


9/12

Mortality Review update

Robinis part of the Programme Steering group.The Programme runs from June 2015 for aninitial period of 3-5years. It will support reviews ofdeaths of people with learning disabilities aged 4

75 (inclusive) who are registered with a GP inEngland at the time of their death. Theprogramme will roll out to each region in turnstarting in the North East who have already donesome work on the mortality review. The work willstart in January 2016. Each review will look atwhether further investigation is needed with theexpectation that 1 in 4 of the initial reviews willgo to multi-agency.

The programme is overseen by 2 advisorygroups1 multiagency with 22 membersincluding Vickiand Danfrom National ValuingFamilies Forum and Annie Ferguson a siblingcarer. The second advisory group is made up of

self-advocates and 9 people sit on this group.Tina Walker is the rep for the National Forum ofPeople with Learning Disabilities.

Robin was asked about the review of the carersstrategy. So far the Standing Commission forCarers have heard nothing. The forum asked ifthere was a mechanism to be part of shaping thisreview.

ACTION - Robin will send Carers Lead emailcontact to Cally to offer help for carers strategy.

The forum felt there was a wider tie here into thefemale agenda. There was a suggestion to inviteKate Green to the next meeting.

ACTIONDave to write to invite Kate Green
http://www.google.co.uk/url?sa=i&rct=j&q=&esrc=s&source=images&cd=&cad=rja&uact=8&ved=0ahUKEwjnntf2ibvJAhUBSBQKHUpPCVgQjRwIBw&url=http%3A%2F%2Fwww.familycarers.org.uk%2Fwho-we-are%2Fpeople%2F&bvm=bv.108194040,d.d24&psig=AFQjCNEbpu9feQikM64SNb1-9teExjar_Q&ust=1449073588753657


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DOLS consultation

Rhianonoutlined the key proposals in the DOLSconsultationsee presentation attached.

http://bit.ly/1jy9qQE

The forum also went through the response fromYorkshire and Humber family regional forum.

The forum agreed that this would be the basis forthe response from the National Valuing FamiliesForum.

The discussion focussed on authorisation indomestic settings with concerns from the groupabout how this would work in practice andconflict with Article 8 the right to family life.There was also concern that people were stillstruggling to understand the Mental Capacity Actand that a whole new system for DOLS was not

necessarily the best solution.

ACTION - Lucy to draft response based on Y&Hand forum discussion with input from Liz,Rhianon and Christine.

See response here. http://bit.ly/1TujGGB

Green Paper update

Chris Cox from the Department of Health made ashort film providing an update to the GreenPaper for the forum. This is attached with thesenotes.

http://bit.ly/1Rm1akG
http://bit.ly/1jy9qQEhttp://bit.ly/1jy9qQEhttp://bit.ly/1TujGGBhttp://bit.ly/1TujGGBhttp://bit.ly/1Rm1akGhttp://bit.ly/1Rm1akGhttp://bit.ly/1Rm1akGhttp://bit.ly/1TujGGBhttp://bit.ly/1jy9qQEhttp://www.google.co.uk/url?sa=i&rct=j&q=&esrc=s&source=images&cd=&cad=rja&uact=8&ved=0ahUKEwi5nY6uirvJAhXJ1RQKHY6LBv0QjRwIBw&url=%2Furl%3Fsa%3Di%26rct%3Dj%26q%3D%26esrc%3Ds%26source%3Dimages%26cd%3D%26cad%3Drja%26uact%3D8%26ved%3D%26url%3Dhttps%253A%252F%252Fwww.housingandsupport.org.uk%252Fsite%252Fhasa%252Ftemplates%252Fgeneral2col.aspx%253Fpageid%253D464%2526cc%253Dgb%26bvm%3Dbv.108194040%2Cd.d24%26psig%3DAFQjCNF-s5FmDVY5jIA1DhNw989EbwJzsQ%26ust%3D1449073696862388&bvm=bv.108194040,d.d24&psig=AFQjCNF-s5FmDVY5jIA1DhNw989EbwJzsQ&ust=1449073696862388


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Chris set out the 3 main parts to the plannedwork around the Green Paper:

things that can happen now, like changinghow the NHS buys services

how the law might need to be amended,around how people can have the right tochallenge, detention under the MentalHealth Act

bigger changes that need to happen longerterm

There was a discussion around the questionChris posed. Generally the forum felt that therewas limited details about the planned work. Theforum would like the feedback to Chris to be that:

more of this detail is needed

there needs to be a greater emphasis on

the use of longer term, more citizenadvocacy

Plans for the next meeting and Actions totake away

The next meeting will be held at the Link Hotel inLoughborough on the 9 and 10 February 2016.

Cally raised devolution as a big issue that willaffect families and the National Valuing FamiliesForumthere will be implications for how theforum gets involved politically with regionsbecoming more powerful.

This, alongside a focus on the female agendawith the review of the carersstrategy look to bethe two big themes for the next meeting.


12/12

Actions sheet is attached with these notes.

http://bit.ly/1QdIK4A

Burning Issues and Any Other Business

BILD have asked for volunteers to championtheir work on sexual exploitation. Here is the linkto find out more:

https://youtu.be/2mczSUwchgE

ACTIONforum members to contact Lucy andKeith Smith if they want to take this role on

The forum agreed to continue to be a member ofthe alliance and to be supportive of LearningDisability England. They agreed they needed to

find out more about their planned next stepsbefore deciding whether to be part of theirsteering group or not.

Volunteers were requested for LearningDisability Today on 26

thNovember.

PLEASE NOTE:The next National Valuing Families Forum will beon the 9 and 10 February2016at The Link Hotel inLoughborough.

The National Valuing Families Forum after this will be on the 6 and7 June 2016and will be held at Burleigh Court inLoughborough.

The afternoon of the 7 June will be ajoint meetingwith theNational Forum of People with Learning Disabilities.
http://bit.ly/1QdIK4Ahttp://bit.ly/1QdIK4Ahttps://youtu.be/2mczSUwchgEhttps://youtu.be/2mczSUwchgEhttp://bit.ly/1QdIK4A

1. NVFF Oct 15 Minutes Final

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Transcript of 1. NVFF Oct 15 Minutes Final