Care Quality Commission Engagement focus group with
learning disability groups, people with learning disabilities and
voluntary & community sector organisations
15th July 2013
Full workshop notes
Please note that any comments that are not in these notes can be found in the
plenary feedback in the main report
Morning session
Workshop questions:
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What are the issues faced by people with learning disabilities using health and
care services in London
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Why do VCS organisations, including learning disability organisations, people
with learning disabilities and their carers want to communicate /engage with
CQC and what are the benefits of this?
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Why might CQC want to communicate /engage with the VCS, learning disability
groups and people with learning disabilities?
Table 1:
Key issues
 Complaints – too complex especially for people with learning disabilities not
listened to
 CQC needs different ways of communicating!
 CQC should take undertake research into why providers are failing and identify
key points – what makes it difficult for groups
Variation of experiences
 “The health services are the worst for making reasonable adjustments”
 Healthwatch Wandworth – understanding personal budgets, talking to people
and feeding back to Las – CQC does not regulate this area
 Hillingdon Local Authority has a strong learning disability forum, which looks at
real issues and follows up
 CQC needs to consider language and be SPECIFIC
 CQC needs to support the industry to improve practice
 Support organisations that are supporting people need to be assured that “this is
a good service”
 Example given of 2 different mental health trusts – training is key also useful to
have carers on inspections
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Care and Welfare: must always talk to people who use services – how ever hard
this might be – and look at care plans, talk to families and carers
Domiciliary Care – agencies do not get enough money to pay people a decent
wage – this affects who they employ and how much training they can offer, quick
turn over of staff
Identify the challenges for each organisation CQC regulates – share good
practice – via web site??
Importance of engagement
 Need loads more time if CQC want us to respond to consultation requests – all
material has to be in different formats – pictures and easy read
 Issues around transition from children to adult services
 Encourage partnership working with CQC and other groups to scrutinise – lots of
support for this!
 CQC needs to be very clear about what information it wants from people who
use services
 Would like a direct relationship with managers in CQC
 Link into partnership boards where ever possible – reps access services and can
shape findings into report for CQC
Table 2:
Key issues:
 People not being listened to
 People expected to be there (at the home) to comply with staff time
 Little engagement
 People are “safe” but nothing happens on engagement with regards to people’s
emotional side
 People afraid to complain
 No expectation – it is how it is
 Issues get taken at face value – people with learning disabilities may say they
know their way or understand something, but not necessarily the case
 Balance of safety and risk
 Importance of quality of life
 User experiences important but not everyone has had “experience”. Also really
important to have independent advocates to really listen to experiences
 Some questions very leading
Importance of engagement with CQC
 Need to look at other organisations in engagement process and how they
engage. Local authorities are often poor in terms of engagement. VCS has clear
role to play as well
 Should be a partnership between carers and users of services
 Need to be clear about that engagement and about with which groups
 Build on local partnerships and on-going relationship is needed
 Need real community participation
 Time is needed to look to engage and look at choices
 Consultations of don’t work: need more time even in easy read format
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Engagement only works if we can help to set the questions – need proper and
full engagement
CQC needs to collect intelligence
NW London Mencaps – CQC could work them directs as covers several
boroughs
CQC need to work at a local as well as sub regional and regional level
CQC needs to work with local consortia and with Healthwatch
Need to consider that there is limited time to reach out, communicate with
groups and service users (also limited funding)
Communication needs to improve on both sides: groups often don’t know about
other networks and groups
Method of engagement is important – always need to follow up and set up
partnership arrangements to ensure commitment
What do we need to communicate about?
 There is no engagement with carers – not taken o board and no feedback about
quality of services whether good or bad. Local Authorities are often not engaging
 Local forums need to pull that information together to feed into the Local
authorities
 What do we want from providers? There have been times when carers have had
to set up their focus groups
 Engagement needs to be constant and on-going
 Capture intelligence and share learning
 Important to work with the VCS as CQC is not getting the right information at the
moment!
 System will only work and be effective if all parties work together, including local
authorities, CCGs, HWBBSs, etc
Table 3
To follow – did anyone else take notes?
Table 4
To follow – Alison Blackwood
Afternoon discussion
Workshop questions:
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How would you like to give and share information with and to the CQC?
What would you like back from the CQC?
Table 1
 Need to work together in groups with the same representatives for continuity and
communicate in plain English – no jargon!
 Break communication down in to smaller chunks as that will make it easier – still
coming to terms with what CQC does
 Use existing networks and forums and make issues relevant for these networks
 Need pack of information on what CQC does and what information it needs from
us
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Feedback is really useful – when people have reported on a poor service, CQC
should produce an easy read report so that people know they have been listened
to
Accessible documents also help whose first language is not English
If CQC has events, we need pictures of people holding / hosting events sent
them in advance
Take into account multiple and complex needs, e.g. hearing impairment, issues,
sensitivity to noice, light, etc
Need to consider separate rooms for separate table discussions due to level of
noice. Understand that even with easy-read consultations plenty of time is still
needed by groups to discuss with service users
Not even easy-read documents will meet the need of all people as some have
problems reading
Use survey monkey surveys as well as telephone communication
Consider consultation fatigue
Need CQC feedback from our feedback!
Sent information to Healthwatch
Table 2
Contacts
 NW London Mencaps - work on quality checks of services (Gloria Dowling)
 Harrow complaints advocacy services and their voluntary and community sector
consortia
 SW London Mencaps have offered to check and develop CQC materials for
people with a learning disability
 Autism partnership boards now in 75 local authorities
 Richard Walsh is Area Manager for Voiceability and Louisa Poulter is
Voiceability Service Manager. [email protected] and
[email protected] (pan London work)
Ideas for CQC
 Some easy to read info and some in pictures - some people prefer pictures
 Check whether services have scrapbooks for people with a learning disability
 People can own their feedback by giving it in a way that suits them eg through
pictures
 CQC should go to day/evening clubs used by people with a learning disability eg
such as in SW London Mencaps
 Each local inspector should work with their mencap, learning disability
partnership board, advocacy groups and carers groups
 Some LDPBs can be very carer focused - be aware
 CQC should signpost people to local advocacy groups if they need help
 What information can CQC offer to learning disability groups?
 Information on ratings - who is this for? Will it really affect people’s choices with
a learning disability? Does it have the effect of shaming providers?
 What are the measures CQC will use? You need to show a breakdown of what
each measure covers.
 You also need to explain what good care looks like for a care home, a GP etc
and in relation to people in vulnerable circumstances
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You should give baseline information about services and also provide trend
information - and put pressure on commissioners not to just buy the cheapest
services.
You should check on whether services have a community presence and whether
learning disability services encourage people to take part in their community
Being responsive is about showing how you improve in response to feedback
from people using care
CQC should highlight examples of good practice
Inspection reports should say who we asked for views and which groups
Table 3
To follow Alison Blackwood
Table 4
Did anyone write notes for this table?