Newsletter

Winter 2017
If you would like a printed copy of this Newsletter then Our User Led Organisation and Goodbye
please contact us: from a Treasured Trustee:
Email: james@cambridgeshirealliance.org.uk
Tel: 0300 111 2301 My first day as a Trustee for the Cambridgeshire
User Led Organisation (ULO), as it was known in
Newsletter Contents: those days, was in March 2009 when the first
formal governance documents, for what was to
 Our User Led Organisation and Good Bye
become Cambridgeshire Alliance for
from a Treasured Trustee
Independent Living (CAIL), were agreed and
 And Hello from Sabi - Our Newest Project signed.
Support Officer

 CAIL are the November Charity of the

Month at Cambridge 105

 Knowing Us, Knowing You

 Voices4Choices – Our Library of Lived

Experience

 The Model Conversation

 Wheelchair User Forum

The idea for a ULO, as a User Led Organisation
 A Light Hearted Christmas Tale was known, wasn’t a new one. Back in 2009 the
Department of Health (DoH) created a fund to
 Support us!
develop 25 ULO’s across the country. A small
group of us in Cambridgeshire were galvanised

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into action to create something new with DoH whose lived experience was essential in shaping
funding. Luckily in neighbouring Essex we had future service provision amongst many other
the Essex Coalition of Disabled People who put things.
themselves forward as our mentor organisation
and so with all the pieces in place we recruited As the ULO we faced quite a lot of resistance
our steering group and got to grips with what it from established voluntary and public sector
meant to set up a ULO. groups across the county as well as trying to
raise money to fund the work we wanted to do. I
Originally, I co- can remember the first time I spoke about our
chaired the group work to a group of school governors who assured
with Gerri Bird, me they were disability-friendly because they had
who is now a ramps for wheelchairs. How my heart sank when
Cambridge City faced with the ignorance of some very bright, and
Councillor. We well meaning, people. It also showed that we had
put together the a lot to do! I also got some stick from established
governance of disability groups as I “obviously wasn’t disabled”
the new organisation and worked out what it and so how could I “chair a disability group”.
would do in the future. It was only natural that Again I was saddened to think that people just
when we finally registered as a charity and looked at an outward appearance as I pointed out
company limited by guarantee that Gerri or I to them that they had no idea if I had a mental
would transition over as Chair, and it was me. I health issue or HIV.
sometimes think back to when they asked for
volunteers to become Chair everyone apart from I’ve always
me took one step backwards! I didn’t quite know known that we
what I’d let myself in for because it was harder needed to
than we thought to really get things going. change these
views and give
At the time I was also Chief Executive of people a
Headway Cambridgeshire having joined in 2007 voice, which is
after 22 years in the commercial sector (mostly in ultimately at
sales and marketing roles). I learnt very quickly the heart of all the work we do here at CAIL. I’m
the importance of the social model of disability not going to write a chronology of events except
and the lack of a voice for many disabled people to say that as a Trustee I am immensely proud of
the work we’ve done and what the
current team, under Alena’s expert
leadership continue to do. It is a
measure of the dedication of so
many people over many years in
the face of many adversities that
CAIL, as it is now, has survived
and thrived.

My last day formally as a Trustee

was in September as I reached the
end of my tenure and realised that
my ‘use by date’ had come and
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gone and now was the time to step aside and let been a breath of
others move the organisation forward. The fresh air to work
Trustees are a truly great bunch, hugely with such driven
dedicated and focused under Paul Taylor’s individuals who
excellent leadership and I have no doubt that are genuinely
there are more adventures to come as CAIL passionate about
continues to change the landscape, and the lives, what they do and
of disabled people every day. it shows. It is a
rare thing to
It has been great fun and I wouldn’t have missed imagine working
it for the world. I wish the CAIL team and in an office where
everyone reading this all the best and as Alena employees
always says, “Gertcha!” regularly stay beyond office hours and are told to
go home because they’ve stayed beyond
contracted hours. Up until now I hadn’t worked
with individuals so knowledgeable about such a
vast range of topics in such detail from legal,
academic, medical to political fields.

Having spent most of my professional life abroad

in Chile over the last six years I can compare
Chilean healthcare, education and legal
standards to those we have in the UK. In Chile, I
had to be resourceful, steel willed and persistent.
Unfortunately independent ‘youngish’ women are
not always welcomed in paternalistic Chile. Many
of my generation there continue to fight against
this.

Things that we take for granted in the UK

regarding standards of equality, privacy,
transparency and legal rights for all are very
different or non-existent in various sectors. I
believe it is having lived in a country like this for
so many years that sparked my interest in non-
profit sector work. The completely different
Andrew Gardener -Trustee infrastructure, culture, mind-set and accessibility
to resources have meant that it has been a steep
learning
And Hello from Sabi - Our Newest Project curve as
Support Officer: previously
my projects
Hello, I’m Sabi (a name hailing from Zimbabwe)! varied from
It’s pronounced Sabi like Wasabi. medical to
small
I started at CAIL about 3 months ago now. It has enterprise.
3
 accurate the service providers’ vision of their
service in regards to the social model of disability
versus the medical model of disability. According
to Alena, my natural curiosity and willingness to
challenge is a good tool to this end!

I look forward to helping facilitate the work that

CAIL does! I am already working on a few project
ideas for work that CAIL could in the future be a
creative contribution to accessibility for
Partnership Boards. What a privilege to be on
board and to be in a place where I feel
welcomed, accepted and that I could belong.

Sabi Johnson-Ratcliffe - Project Support Officer

CAIL are the November Charity of the Month

at Cambridge 105:

Over the course of my life I have done a lot of

work in the voluntary sector. When I think about
CAIL and the work that we do compared to my
other experiences of charities, I think that our
broad outreach as a pan disability organisation
makes us very unique. At our most recent Cross During November 2017, CAIL were very excited
Board Event I was privileged to hear of the effect about being the Charity of the Month at
my new employer has in many service sectors Cambridge 105 – the local community radio
whilst remaining a non-service provider itself. The station in Cambridge.
feedback included appreciation that we ensure
quality of services, improving and influencing Throughout the month
policy influence. It’s an organisation that we have been on
constantly challenges attitudes regarding different programmes
talking about various
disability and provision of community links.
aspects of our work!
I am currently completing my Masters in
Want to listen to the
Neuroscience and Psychology in Mental Health
shows? You can
at King’s College London. As this is part-time and
download or stream
distance learning I am afforded the luxury of
the Podcasts by
flexibility that many are not whilst pursuing following this link:
education, whilst satisfying the need to work to
stay afloat. My degree complements my work at https://cambridge105.co.uk/charity-of-the-month-
CAIL because it’s a bridge between textbook and november-2017/
reality. This is especially true for service
provision; what works and what doesn’t and how
4
Cambridge 105 were also nice enough to put
together a brand-new album from exciting bands
in the Cambridge area. These bands not only
sound great but are helping raise money for
CAIL!
Download and help raise money for CAIL today!
https://www.amazon.co.uk/Cambridge-Calling-
Two-Various-artists/dp/B076HWJTWL/
ref=sr_1_1?ie=UTF8&qid=1510845754&sr=8-
1&keywords=cambridge+calling+2
Knowing Us, Knowing You:
The cross board training which we offer to
independent members on the various partnership
boards is a great opportunity for independent
members to get to know each other. The title for
the day came from my inadequate memory of the
Abba song. To be honest I thought it was an Alan
Partridge’s catch phrase!
The main aim of the day was worked out
following a discussion we held on 18 July. There
was a good turnout and people came along with
lots of ideas. Broadly, board members wanted to
know more about all the partnership boards,
particularly as they felt that there were many
issues in common. They wanted to understand
more about different disabilities. They also
wanted to get to know each other. They wanted
to use their individual experience to contribute to
the work of the boards and to understand how
best to do this.
So the last day of October saw us heading for a
new venue, West Anglia Training Centre in
Hartford. Normally this is a training venue for
apprentices. They gave us a good welcome and
provided a pleasant classroom.
Past experience has shown us the value of
having an outsider deliver at least some of the
training. Somehow it makes everybody sit up and
take notice instead of having to listen to Sally and
Graham droning on. Lindsay Polly Crisp, a
lecturer with the Open University and freelance
facilitator, supported us enthusiastically to deliver
an interesting day.
The main focus
was on how
individuals could
make the most
of their lived
experience to
promote the
work CAIL does.
It was stunning
to find just how many links into the community
independent members have – neighbourhood,
local, regional and even national connections.
One member has used her experience with the
partnership boards to reach out to people she
meets regularly through her church. Other
members have direct links into national
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organisations. It is the independent members’
energy and experience that gives validity to the
boards – no airy fairy policy ideas but grounded
and practical responses to real everyday
problems and experiences. I’m proud to work
with this group and the training day really
reminded me why we do the work we do.
My favourite part of the day was the speed dating
activity. No, CAIL hasn’t turned into a dating
agency to raise some quick funds. Everyone
moved around to speak to each other in pairs. I
got the strong impression we could have gone on
longer but Lindsay’s gong sounded and we were
on to the next activity. It certainly fulfilled on of
the aims of the day – getting to know each other.
take some time. They also recognised that
promoting good consultations from the beginning
of any project leads to better outcomes in the
end.
My favourite quote of the day was “CAIL is
extraordinary”! Thanks Mick. But before you think
we’re getting above ourselves there were plenty
of challenging questions such as are we value for
money, do we have the capacity to influence
policy makers and why should we get funding
when individuals are finding their budgets cut?
So there’s plenty to work on in 2018.
Sally Cleghorn - Development Officer

Listen to Sally on Cambridge 105:

https://cambridge105.co.uk/leigh-chambers-17-
11-2017/

After lunch, ‘refreshingly simple’ according to one

participant, it was back to the classroom to create Voices4Choices – Our Library of Lived
an ‘elevator pitch’, an American term for creating Experience:
a short, clear statement of our work. This was
much harder than speed dating but it’s a skill well Voices4Choices is now entering into its final
worth honing. We’re even thinking of using it for stages and is due to be wrapped up in its entirety
staff training. Thanks Lindsay. by the end of March 2018. As many of you may
know by now the project is all about increasing
We closed the day with some actions; always a knowledge of Direct Payments in the
good thing in my book. The Chairs of each Cambridgeshire area through using the lived
partnership board will visit at least one other experiences of people already using Direct
board to understand how they work. Members Payments. For those of you who may not know,
said they were keen to challenge social attitudes a Direct Payment is money from the Council that
about disability and they identified they can use you can use to pay for social care services e.g.
their wide range of contacts to do this. This might care in your home, accessing the community,

6
helping you go shopping, etc. The aim of a
Direct Payment is to give you more flexibility,
choice and control over your care and support.
For more information on Direct Payments, what
they are, who is eligible, how to apply and what
support is available; please see our ‘Introduction
to Direct Payments’ guide by follow this link:
https://cailorguk.files.wordpress.com/2017/12/an
-introduction-to-direct-payments.pdf
For the past year CAIL has been gathering
stories from many different people all over the
Cambridgeshire area. We have been talking to
people about what they think the highlights, the
benefits, the low points and the frustrations of
using Direct Payments are and how people think
things can be done better. Travelling to every
district of the county multiple times has certainly
proved to be a demanding task but definitely a
worthwhile one! We now we have more than 30
audio recorded interviews of people sharing their
interesting, insightful and often emotional stories
with us.
The next
stage, the
final piece of
work for the
project and
what all of
this story
collecting has
been leading up to will be to create the ‘Library of
Lived Experiences’ from these recordings. The
recordings are currently in the process of being
transcribed from audio to written text. Once this
has been done we’ll input this text into the Library
in two ways. Firstly a story in its entirety will be
available to read from beginning to end.
Secondly the stories are being broken up into
themes so people can navigate to a specific
topic. For example if someone is having trouble
finding a Personal Assistant they will be able to
navigate to that topic in the Library and read
everything that people have to say around hiring
Personal Assistances.
Some of the things that people have told us:
“When it came along about Direct Payments
and handling it yourself and doing that sort of
thing, there was a lot of scepticism. And I
was just one of them ‘cos when you’ve had it
hard, you find it hard to engage and believe
that anybody’s being really, genuinely trying
to help you. However, someone on the CAIL
Partnership Boards was well switched on,
educated us and really help us see the
benefits.”
“When I started with Direct Payments, right at
the very beginning. I put a little advert up in
the post office and um, that was amazing
because that note went on the noticeboard
and I was bombarded by calls! Anyway, I got
to make my choice and I made a very, very
good choice.”
“We already knew what we wanted to
achieve with our care plan and everything.
We wanted something fairly straightforward
and then they suggested Direct Payments
would help make it an easier process for us,
it would make it less of a hassle. Once
Purple made contact with us, it was pretty
straightforward. It’s been nice because it’s
integrated into the family so easily because it
was done in the right way.”
We are working on making the Library accessible
in a variety of formats and locations so anyone
who wants to access it will be able to easily. We
will also use the themes gathered from the
stories to create a list of recommendations about
the Direct Payment process, which will be fed
7
back to Cambridgeshire County Council to help
them improve their services.

An additional and exciting piece of work that

we’ve just undertaken for the Voices4Choices
project has been to deliver a presentation on
Direct Payments to the social work students at
Anglia Ruskin University (ARU). During our five
events across the county we discovered that a
lot of professionals did not know about Direct
Payments. This got us thinking that perhaps a
good approach to getting information about
Direct Payments out there was to target student
professionals as they are the ones who are
inevitably going to be on the front line presenting
this as an option for people. Along with our
colleagues from Purple (Cambridgeshire County
Council’s preferred support provider for Direct
Payments) we approached ARU who were
delighted to have us deliver a presentation. The
first presentation was delivered to the year 3 BSc
social work students in November and was a
resounding success. A second presentation is
booked into February 2018, with the MA Social
Work students. Check out some of the photos
from the day below.

8
On Wednesday 07 February, we will be sharing
some of the findings of our Voices4Choices work
and some services user perspectives from our
wonderful volunteers, at the Skills for Care,
‘Supporting the Personal Assistant Workforce’
event.
If you support individuals who employ their own
personal assistants through a Direct Payment,
personal health budget or with their own money,
come along to this free event to keep you up to
date with latest good practice and to help you
network with other people in the sector.
This event will also be a great opportunity for
anyone to find out what Voices4Choices has
been doing.
With Regards to our ‘Library of Lived
Experiences’, we’ll have more information about
this coming out early in 2018, on our website, our
Information Bulletin, our Facebook page and our
Twitter account; so watch this space!
If you would like more information about Direct
Payments, the ‘Library of Lived Experiences’, the
Skills for Care event or any other aspect of our
work then please get in touch:
James - james@cambridgheshirealliance.org.uk
Tel: 0300 111 2301
James Saunders - Voices4Choices Project Lead

Date: Wednesday, 07 February 2018

Time: 10.00 - 16.00
Location: The Trinity Centre, 24, Science Park,
24 Milton Rd, Cambridge, CB4 0FN

Book your place now at www.skillsforcare.org.uk/

IEevents

For more information please follow this link - Listen to James on Cambridge 105:
https://cailorguk.files.wordpress.com/2017/12/ https://cambridge105.co.uk/phil-rowe-29-11-
supporting-the-personal-assistant-workforce.pdf 2017/

9
The Model Conversation:
The Heritage Lottery funded our recently
completed project, The Model
Conversation. Twenty people with physical
disabilities helped make a film as a means of
changing people’s attitudes and perceptions to
the way in which physically disabled people are
seen and treated in Cambridgeshire.
The film is available as a discursive resource for
schools, clubs and groups to generate debate
and challenge accepted views and to increase
understanding of the Social Model of Disability.
The video can be viewed on our YouTube
channel here:
https://www.youtube.com/watch?
v=S0DImiBe9mk
The project leader, Justin Craig, visited
Cambridge 105 radio to talk about what he had
learnt. Listen to Justin on Cambridge 105:
https://cambridge105.co.uk/suzie-thorpe-23-11-
2017/
Wheelchair User Forum:
Back in July, CAIL held the first Wheelchair User
Forum, bringing together people with a wide
range of disabilities but all of whom use
wheelchairs, or are carers for people who use
wheelchairs.
The background to the wheelchair user forum
was quite simple. The Partnership Boards had
heard concerns about the service and had
carried out in depth work with Healthwatch and
Pinpoint to hear people’s experiences and to
raise these with Provide (the organisation that
delivers the wheelchair service in
Cambridgeshire and Peterborough) and the
Clinical Commissioning Group (CCG) who
commission Provide to deliver the service.
Following the work by CAIL, Healthwatch and
Pinpoint; a report called ‘Sitting Comfortably’ was
written and submitted. The wheelchair user
forum was established to find out if there had
been improvements in the service and to act as a
critical friend to the CCG and its wheelchair
service.
At the first meeting in July it was found that users
did not feel that there had been improvements.
The CCG had also sent a note to say that they
had extended the contract for the wheelchair
service as there were national developments,
such as personal wheelchair budgets, which
were taking place but they would need to be
involved in any new tender.
At the second meeting held on 24th November, it
was found that there were still concerns with how
the service was operating. People talked about
long waits for repairs to be carried out and about
how rude people were. One of the members
talked about how they had waited a year for a
piece of kit and then explained when discussing
their new wheelchair they were told the ‘NHS
10
don’t do countryside’ (i.e. that chairs were for
indoor and pavement use only). A
representative of the CCG attended the meeting
and took notes to feedback to her colleagues
who were move involved in the commissioning of
the wheelchair service.
The forum explored how they can offer to work
with the CCG when it comes to the tender
process for the new contract being developed in
2018 for the new service to start in 2019.
As an aside… even we can get it wrong when it
comes to accessibility!
It was suggested that we hold the meeting in
Papworth Everard at the Village Hall, a venue we
have used many times.
Only we completely forgot something important!
The venue has a carpark… whilst the car parking
spaces are paving slabs, the road area isn’t.
Where the car park is used heavily the gravel has
become imbedded and is quite solid for
wheelchairs to move across. Unfortunately one
of the group
members
had to park
further away
and travel
across very
loose gravel!
This resulted
in their
wheelchair ‘sinking’ in the gravel and becoming
stuck. If it hadn’t been for a group of people
attending a fitness class in the building seeing
how stuck we were and helping… the group
member would probably still be stuck in the car
park. The moral of this lesson is that even when
you know the venue you should check it out in
person to make sure it meets the needs of the
event – it’s surprising what you can forget about
places!
Graham Lewis - Development Officer
Listen to Graham on Cambridge 105:
https://cambridge105.co.uk/mike-prior-16-11-
2017/
A Light Hearted Christmas Tale:
A sprout, yes, a sprout!
appears from a muddy
field and said that he
was a stocking stuffer
and was searching for a
ladder. I said his best bet
was a snake, he’s got
several ladders. In fact
he’s got a Monopoly on
11
them. This sprout was no fool, he had just An old codger arrives next, it’s EbeSneezer
returned from Brussels where he had cold turkey. Scrooge who’s got a cold. He’s in a stable
But less of his drinking habits and back to the condition after gorging on
story. humbugs in the new coffee
shop Costa-Packet.
Speaking of habits here comes a couple of nuns Meanwhile his dog, a Jack
each carrying a bottle. One was holding a Black (Frost) Russell, berries his
and White whisky bottle, the other a bottle of Blue bones under the Christmas
Nun. They disappeared into the forest for a party. Tree while he’s waiting. In
Following them were a gaggle of goose stepping the IT department Yule logs
geese. I thought they should visit a chiropodist in to the website for the data
with their flat feet. An American came shortly day running of Christmas.
after saying, ‘Yule be English’ and carrying the
Stars and Stripes, announcing that it was his Finally sport! This is the only way I’m allowed to
Trump card. mention the subject, I think. Here goes, is Harry
Kane Abel enough to play for Real Madrid. If not
Along the East coast the sea was reaching up to he has been asked to open a leisure centre
the beach wall. This was known locally as a Yule incorporating Ten Pin Bowling to be called Deli
tide. Unfortunately, it had caught out the three Alley.
wise men, with their gold, frankincense and myrrh
(GFM for short). As luck would have it a small Just to finish off, a bit of information. You don’t
boat was passing and they were rescued by none need a Sat-nav for directions to CAIL, just follow
the cast-off clothing along Fen Road and you can
pick up an entire clothing outfit, that is if you don’t
mind scrambling among the bramble bushes.
I’m a bit of a novice with this story lark, but if it
brings a smile to your face that’s fine by me.

other than the Owl and the Pussycat, who were

greener than their boat, (yes I know they have
nothing to do with Christmas but they just
happened to be in the vicinity!) They made it to
the shore just as the kebab van arrived and
guess who was first in the queue? It was Donner
stocking up for the other reindeers.

Olff the reindeer was

always being naughty so
we decided to call him
Rude-olff. His nose was
often illuminated like a
traffic light and caused
many a tailback at Xmas. He has also been
asked to appear on Red Nose Day instead of
Lenny--- something or other. David Challis - Volunteer

12
Support Us!:
You can find us on social media:
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helping us to raise funds. If you sign up to Give
as you Live, which is completely free, then you
can shop at over 4,300 online stores and Give as
you Live will donate back to CAIL. Facebook

Shop till you drop and help raise money for CAIL
at the same time, couldn't be simpler! Sign up to
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cambridgeshire-alliance-for-independent-living

Website
And remember to download the fantastic album
Cambridge 105 put together for us!

YouTube

Copyright © 2017, Cambridgeshire Alliance for

Independent Living, All rights reserved.
Charity no: 1132290

Our mailing address is:

administrator@cambridgeshirealliance.org.uk
https://www.amazon.co.uk/Cambridge-Calling-
Two-Various-artists/dp/B076HWJTWL/
ref=sr_1_1?ie=UTF8&qid=1510845754&sr=8-
1&keywords=cambridge+calling+2

13