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Learning Disability Partnership Board

Wednesday 21 March 2018, 11am – 3pm

Orchard Park Community Centre, Cambridge CB4 2EZ

1.0 People at the

Neil Adams Speak Out Leader,
Young People, Co-Chair
Marianne Attwood Community LD Nurse

Sally Cleghorn Development Officer, CAIL

Heather Davison Engagement Manager,


Debbie Drew Carer Representative

Russell Henke Speak Out Council Leader,

High Support Needs
Jill Johnson Lead Service Manager,
Integration and Practice,
Elspeth Jones Speak Out Spectrum

Fen House, Fen Road, Cambridge, CB4 1UN

Tel: 0300 111 2301
Registered Charity No. 1132290 Company limited by guarantee No 06861653
Bill Jones Speak Out Leader,
City & South
Sandra Kelly Community LD Nurse

Graham Lewis Development Officer, CAIL

Michelle Mansfield Speak Out Leader,

Sean Nightingale Speak Out Council Leader,
Hunts and East Cambs.
Gareth Peters Adult Safeguarding
Manager, CCC

Joseph Simon Carer Representative

Chris Swarbrick Speak Out Council

Coordinator, VoiceAbility
1. Welcome, introductions and apologies
People who said they could not come: Tracy
Gurney, Mark Hill, Lorna Weston, Claire Bailey, Keith
Mead, Juliet Sawmynaden, Siobhan MacBean, Anita
Hewson, Cllr Costello, Amanda Roach, Ben Wearn.
Graham suggested a change of order to the agenda –
Item 4 Safeguarding Awareness
Item 5 General safeguarding issues
Item 6 Locality updates
Item 11 Graham will talk about CAIL closure
Everybody agreed.
2.0 Speak Out Leaders Reports
2.1 Fenland
 Carol Williams and Wendy Ballard went to all drop
ins to talk about the Fairer Contributions

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 The Transport consultation that VoiceAbility is
doing will be ready in June
 Michelle gave feedback on the health consultation
to the Health Sub-Group

2.2 HSNC
 Did a consultation at 17A Mill Lane on Staying
 The committee has planned the meetings for the
2.2 City and South
 The OWL café Sawston is closing. Bill will keep
the drop ins there for the time being
 City Job Centre has signed up as Safe Place
 Karen Thomas, Addenbrookes LD nurse has
invited Bill to give a training session
 Bill and Elspeth did a talk on Autism for the
Pinpoint Conference
 Bill is doing his driving test
2.3 East Cambs and Hunts
 Saxongate crossing at last is in place
 Sean will present the results of the Health
Consultation to the Huntingdon LD Community
Health team
 There has been a request to set up Safe Places in
2.4 Young Adults
 Neil went to the SEND headteachers meeting at
Granta and promoted the idea of a Young
People’s Sub-Group

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 Helping to set up an Employment focus group at
the DWP
2.5 Speak Up Spectrum
 Elspeth has run monthly meetings at the Chitra
Sethia Centre. She is trying to make them more
 They are building the case for Autism health
Debbie asked if Speak Out Leaders would like her to
ask Dhiverse is they wanted to be a Safe Place.
She also asked Speak Out Leaders to send any
consultations out in plenty of time.

2.6 Staying Safe Consultation

 They spoke to 44 service users to ask them what
would make people feel safe at home
 Most said they would tell a family member
 They suggested that the service provider tells the
family how to raise issues
 People said they wanted First Aid training
 LD nurses at Addenbrookes and Hinchingbrooke
suggested contacting St John’s Ambulance
 Need better training for emergency services on
treating people with additional needs
 They have been invited to Addenbrookes staff LD
awareness training
 People in Huntingdon turn to the Town Rangers
for help. This would be good in other places
 Learning disability and autism friendly events at
major shopping areas would help
 Young people also said they would like travel
training to help them feel more included

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 Need training on safe online behaviour.
Debbie added that Dhiverse offers online training for
11+. It also covers relationships.
Jill – the Young Adults Team does travel training
Cambridge City has City Ambassadors.
Michelle thought it would be good to have something
similar in Fenland. Debbie said the money for these
schemes doesn’t come from the County Council.

Action: Jill will find out if Locality Teams can ensure

family members have good information to help people
feel safe.
Gareth asked if online safety is a big issue locally?
Debbie said a lot of sexting and image sharing goes
Does this get reported as abuse?
Debbie said that it was more likely if it involved looked
after children.
3.0 Carers Feedback
3.1 Debbie said it was fantastic news about the Fairer
Charging decision. Over 300 people responded to the
3.2 Debbie raised concerns about a recent letter to her
daughter, even though she has repeatedly asked for
financial letters to be sent to her. It said there will be
changes to the payment date for Direct Payments. She
has received more than 2 months payment already.
This could cause problems for individuals.
Joseph agreed.
Michelle said people might get confused and will warn
her contacts.
Graham – the letter was not in Easy Read.
Gareth – we can take this back.
Action: Heather will add this to the regular updates

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Healthwatch gives to the Council. It links to the work
about Accessible Information.
Action: Graham and Heather agreed to raise it at Adult
Social Care Forum.
Action: Chris said Speak Out Leaders will be telling all
service users.

3.2 Joseph reported that he did the Fairer Charging

consultation online for his son. A letter from LGSS
received on 24 February with a response needed by 2
March was not in Easy Read. This was not enough
time to send a reply.
Action: Jill will talk to the Direct Payments Team.
She will tell the Chair of the ASCF Helen Duncan.
4.0 Safeguarding Awareness, Gareth Peters
 Gareth said it was good the LD Partnership Board
is so dynamic
 He is the Safeguarding Manager for the County
Council and March is Safeguarding Awareness
 He passed around Easy Read copies of Keeping
Adults Safe from Abuse and Neglect
 He said most people won’t abuse you but it’s
important to understand that anybody might
 Under the Care Act 2014 there is a list of different
types of abuse.
 It can happen in different places
 It’s important to know what to do. Contact the
local council. They will listen and support you.
They might need to talk to other people like
nurses, doctors, police but they will ask you first

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 The Safeguarding Team are based at Chord Park,
Godmanchester. They are part of the Multi
Agency Safeguarding Hub, MASH for short. Last
year there were 5,000 reports and 1,500 taken
Chris – what happens if someone rejects their Adult at
Risk Plan (AARP)?
Gareth – it depends if the person has mental capacity.
If it’s domestic abuse a person might hesitate. They
would ask if anybody else is also at risk. They would
have a conversation about how to be safer.
Bill asked if it would be a good idea to ask a residential
home to be a Safe Place. There could be safeguarding
Gareth – you might need to think about the other
people living in supported living. What would be the
effect on them if someone called for help?

Action: Graham will send round Gareth’s details and

make sure they are included in CAIL’s handover
Debbie – does a caller still need to give a date of birth?
Is there a standard for staff when someone calls with a
Gareth – the MASH needs some detail. It has senior,
experienced people. They regularly look at the quality
of their work. He said people should challenge is not
happy with the response.
Jill said there is also a MASH for those under 18.
5.0 Safeguarding feedback
Chris and Michelle want to speak privately to Gareth.
No others concerns raised.

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6.0 Locality updates
 Michelle - for some reason Locality meetings
haven’t happened before this meeting. The same
thing for the Health Sub-group. What happens to
the information if it misses the LDPB dates?

Jill offered to talk about this with the Service Managers.

Everyone agreed.
Chris added that there had been some staff changes.
Jill said the North Team is still carrying on. There are 3
vacancies in Fenland. Keith and Jill are covering the
North at the moment. There’s been a temporary
change of management. City and South has had some
administration changes.

Action: Jill will remind her colleagues to send feedback

reports that can be read out at the Board meeting if
they can’t come.
Lunch Break

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7.0 Terms of Reference
 Board members met on 18 January to look at the
terms of reference. This means the rules about
how the meetings should be run and who could
join. At that meeting they decided the terms of
reference should only be written in Easy Read.

 Feedback asked about how the Learning Disability

Partnership Board and the Council work together.
Graham said it worked like a ‘critical friend’ telling
the Council what works and what doesn’t.
 Jill gave feedback that Tracy said this was right.
She also added that it is part of the Council’s
statutory duty which means it’s the law.
Partnership Boards came out of Valuing People,
updated 2010.
 Claire said some job titles have changed. Mark
Hall made some suggestions about the Health
 Because CAIL is closing Heather suggested when
CAIL was mentioned Graham could write “CAIL or
successor organisations”.
 Graham sent everyone the new Easy Read
version. He asked the Board if they could agree it
was all correct as long as he included these
The Board agreed to the Terms of Reference.
8.0 End of Life Care, Sandra Kelly and Marianne

 After Valuing People 2001 it was clear that people

with a learning disability were left out and
 In 2008 the Department of Health wrote a plan
about helping people to plan for their care at the
end of their life.

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 It is a difficult subject. The aim is to have a really
good plan for the end of life. For example about
who the person wants to be with, where they want
to be and what they would like at their funeral. It is
a person-centred plan.
 Marianne explained that everyone must be treated
with dignity and not be in pain.
 The LD nurses helps doctors and other health
care professionals to talk to people in a way they
can understand.

Michelle - it’s good to know there is this plan. Where

can people go for help?
Marianne - your GP, Macmillan Nurses, Cruse or ring
the LD Team.

Elspeth - do you work with people with autism?

Marianne - yes we do if they have a Learning Disability
Chris asked what if someone only has a diagnosis of

Marianne said they would have to try their GP. She

agreed there is a gap for people with autism.
Joseph gave the example of people who believe being
ill means you are going to die as a result.
Heather said some care providers have already done
some end of life planning. How does the LD nurses
planning fit in with the care providers?

Marianne - We get involved after there is a diagnosis

and work through a plan to make sure it is up to date.

Jill asked about how this information is spread about.

Marianne said she hopes to speak at the Provider
Forum. They will prepare a training pack.

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Sally asked if providers have to have end of life
planning as part of the agreement with the Council.

Action: Jill will find out if end of life planning is part of

tender requirements.
9.0 Good News
Speak Out Council has got a new Young People’s
project worker called Elena.

10.1 Feedback from other meetings

10.1 Graham said he had raised issues about how the

Fairer Charging consultation was run in December and
January. It was good that lots of people gave feedback
because at Cambridgeshire County Council’s Adults
Committee meeting on 8 March, Councillors decided
not to go ahead with three proposed changes to the
Council’s Fairer Contributions Policy. However, the
Committee agreed to go ahead with the fourth proposal
to make Direct Debit the default method of payment.

10.2 Chris said Speak Out members are planning to

talk about how consultations are run. Heather will send
him some ideas from Healthwatch. Graham said part of
CAIL’s role has been to feedback and he has a list of
some of the problems. The good thing is the Working
Together document now has to be used by every
Council department.
Chris also said that it wasn’t clear enough that Carol
and Wendy could come out to groups. It was really
good that they came to all the drop-ins.
Michelle said she’d like to see more of that kind of
consultation because it really helped people to
understand what they were being asked.

10.3 Board members met for a Task and Finish on the

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Terms of Reference.

10.4 Michelle said some Locality meetings hadn’t

10.5 Jill fed back about the Young Adults consultation.
The Practice Governance Group meets every
month to be sure they do what the Care Quality
Commission and national guidelines say.
She has talked to staff about changing hours to
8AM - 8PM so that the team is available if
someone is having a mental health crisis.

Action: Jill will send Graham the details to send out by

27 March.

11.0 Health Sub Group update

Michelle - we can’t do our job if we don’t have a
representative from the LDP.

Graham - CAIL wrote to the CCG on behalf of all

partnership boards. They replied that they could attend
a meeting if there was a particular subject to talk about.
He asked Mark to send a colleague.
On 26 March at the Wheelchair Users Forum Sue Last
CCG will attend.

Michelle said after change of staff things seem to have

got worse. She felt the CCG has not taken seriously
the concerns of people with learning disabilities and
Chris - the Health Sub-Group 2018 dates have been
Graham - it includes Peterborough now.

Neil - I’m concerned that we’re a bit thin today.

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Graham - we have had a number of apologies. Cllr
Costello and Amanda Roach in particular were very
sorry not to be here.

Jill - could each team or locality have a deputy who

could come instead?

Michelle - there was no one from LDP at the last Speak

Out Council. It’s difficult to do our job properly and we
need to be challenged to make sure we are.
Action: Jill will follow up on making sure LDP reps
attend meetings.
11.1 (Additional item) CAIL closure
 CAIL’s trustees had made the very difficult
decision to close the organisation on 31 March.
 Up to now there have always been different
projects alongside the participation contract for
running the partnership boards. This has helped
with costs.
 The trustees decided it was more professional and
responsible to hand the contract back now to give
the Council an opportunity to find another
organisation that could take the work forward.
 The Council has been working hard to find a
successor. CAIL has plans for a smooth
handover. The LDPB agenda is already arranged.
 The final Cross Partnership Board event will be on
29 March at the Marriott Hotel, Huntingdon. It’s
called ‘Insights - exploring common issues’ and
Bill and Elspeth have agreed to do a talk on
 We’ll be asking independent members for
permission to hand on their contact details
12.0 Minutes, Action Log and Matters Arising
The Board agreed the Minutes.
Jill and Bill met.

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Action on Fairer Charging – Graham didn’t receive
Tracy’s feedback.
Total Transport – Jack Marshall is booked for June 20
Police response –
 Hate Crime Forum. Following a change of officers
they decided not to continue with this. Graham
has raised this with senior officers as bad
practice. Chris has spoken to Tiff Laine. Graham
will ask her who the best person is to contact
about this and let CAIL’s successor and Chris
 Chris has the Police and Crime Commissioner’s
PA’s email. There is a police pack ‘Guidance for
people with learning disabilities’. Heather said the
Board should try all different ways.
LD Team – Jill has not had the feedback from Tracy
and Amanda’s discussion. Tracy to follow up with Mark

Action Log
53. Speak Out Leaders video – meeting Tracy 18 April
61. Graham has invited Jack Marshall Total Transport
62. City Taxi service consultation – Graham wrote to
the City Council. Has had no response and neither has
64. SEND Services – Siobhan will talk about this on 20
June meeting
65. Presentation on Young Carers. Jill wants to raise
awareness of Young Carers and is willing to give a talk.
66. Debbie to email Chris on social isolation. Not yet
67. Tracy/ Claire for future Agenda.
68. Claire – Terms of Reference for Locality Networks

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69. LDPB Terms of Reference completed
70. Terms of Reference for Health Sub-Group to be
reviewed. Chris said it had been agreed that they
would be included in the main LDPB Terms of
Heather added that Healthwatch has Access
Champions in Peterborough. She wants to talk to Chris
about trying this elsewhere.
LDP now has a Communication front sheet to record
how a person wants to be communicated with.
Action: Board agreed it would be good to have these 2
subjects on the same agenda.
72. Lorna Watson Equal Futures consultation.
73. Tracy – Fairer Charging consultation

Graham will bring the Action Log up to date and send it

to the Board.
12.0 Any other business
 Michelle said that people in Fenland are worried
because they are losing Stagecoach. They want
to know how they will get to day services.
 A company called DEWS is taking over. Graham
said that Total Transport is looking at different
ways of doing things. If there are no buses at the
right times the day centres will lose out as well.
Next meetings:
20 June 2018 Co Chair Russell
March Community Centre is booked under CAIL. No
deposit paid.
Telephone: 01354 750383

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