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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.
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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
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Cambridge 105 were also nice enough to put wanted to get to know each other. They wanted
together a brand-new album from exciting bands to use their individual experience to contribute to
in the Cambridge area. These bands not only the work of the boards and to understand how
sound great but are helping raise money for best to do this.
CAIL!

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.

Download and help raise money for CAIL today! Past experience has shown us the value of
having an outsider deliver at least some of the
https://www.amazon.co.uk/Cambridge-Calling- training. Somehow it makes everybody sit up and
Two-Various-artists/dp/B076HWJTWL/ take notice instead of having to listen to Sally and
ref=sr_1_1?ie=UTF8&qid=1510845754&sr=8- Graham droning on. Lindsay Polly Crisp, a
1&keywords=cambridge+calling+2 lecturer with the Open University and freelance
facilitator, supported us enthusiastically to deliver
Knowing Us, Knowing You: an interesting day.

The cross board training which we offer to The main focus
independent members on the various partnership was on how
boards is a great opportunity for independent individuals could
members to get to know each other. The title for make the most
the day came from my inadequate memory of the of their lived
Abba song. To be honest I thought it was an Alan experience to
Partridge’s catch phrase! promote the
work CAIL does.
The main aim of the day was worked out It was stunning
following a discussion we held on 18 July. There to find just how many links into the community
was a good turnout and people came along with independent members have – neighbourhood,
lots of ideas. Broadly, board members wanted to local, regional and even national connections.
know more about all the partnership boards, One member has used her experience with the
particularly as they felt that there were many partnership boards to reach out to people she
issues in common. They wanted to understand meets regularly through her church. Other
more about different disabilities. They also members have direct links into national

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organisations. It is the independent members’ take some time. They also recognised that
energy and experience that gives validity to the promoting good consultations from the beginning
boards – no airy fairy policy ideas but grounded of any project leads to better outcomes in the
and practical responses to real everyday end.
problems and experiences. I’m proud to work
with this group and the training day really My favourite quote of the day was “CAIL is
reminded me why we do the work we do. extraordinary”! Thanks Mick. But before you think
My favourite part of the day was the speed dating we’re getting above ourselves there were plenty
activity. No, CAIL hasn’t turned into a dating of challenging questions such as are we value for
agency to raise some quick funds. Everyone money, do we have the capacity to influence
moved around to speak to each other in pairs. I policy makers and why should we get funding
got the strong impression we could have gone on when individuals are finding their budgets cut?
longer but Lindsay’s gong sounded and we were So there’s plenty to work on in 2018.
on to the next activity. It certainly fulfilled on of
the aims of the day – getting to know each other. 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,

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helping you go shopping, etc. The aim of a Some of the things that people have told us:
Direct Payment is to give you more flexibility,
choice and control over your care and support. “When it came along about Direct Payments
and handling it yourself and doing that sort of
For more information on Direct Payments, what thing, there was a lot of scepticism. And I
they are, who is eligible, how to apply and what was just one of them ‘cos when you’ve had it
support is available; please see our ‘Introduction hard, you find it hard to engage and believe
to Direct Payments’ guide by follow this link: that anybody’s being really, genuinely trying
https://cailorguk.files.wordpress.com/2017/12/an to help you. However, someone on the CAIL
-introduction-to-direct-payments.pdf Partnership Boards was well switched on,
educated us and really help us see the
For the past year CAIL has been gathering benefits.”
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 “When I started with Direct Payments, right at
things can be done better. Travelling to every the very beginning. I put a little advert up in
district of the county multiple times has certainly the post office and um, that was amazing
proved to be a demanding task but definitely a because that note went on the noticeboard
worthwhile one! We now we have more than 30 and I was bombarded by calls! Anyway, I got
audio recorded interviews of people sharing their to make my choice and I made a very, very
interesting, insightful and often emotional stories good choice.”
with us.

The next
stage, the
final piece of “We already knew what we wanted to
work for the achieve with our care plan and everything.
project and We wanted something fairly straightforward
what all of and then they suggested Direct Payments
this story would help make it an easier process for us,
collecting has it would make it less of a hassle. Once
been leading up to will be to create the ‘Library of Purple made contact with us, it was pretty
Lived Experiences’ from these recordings. The straightforward. It’s been nice because it’s
recordings are currently in the process of being integrated into the family so easily because it
transcribed from audio to written text. Once this was done in the right way.”
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 We are working on making the Library accessible
themes so people can navigate to a specific in a variety of formats and locations so anyone
topic. For example if someone is having trouble who wants to access it will be able to easily. We
finding a Personal Assistant they will be able to will also use the themes gathered from the
navigate to that topic in the Library and read stories to create a list of recommendations about
everything that people have to say around hiring the Direct Payment process, which will be fed
Personal Assistances.

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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.

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

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/

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The Model Conversation: The background to the wheelchair user forum
was quite simple. The Partnership Boards had
The Heritage Lottery funded our recently heard concerns about the service and had
completed project, The Model carried out in depth work with Healthwatch and
Conversation. Twenty people with physical Pinpoint to hear people’s experiences and to
disabilities helped make a film as a means of raise these with Provide (the organisation that
changing people’s attitudes and perceptions to delivers the wheelchair service in
the way in which physically disabled people are Cambridgeshire and Peterborough) and the
seen and treated in Cambridgeshire. Clinical Commissioning Group (CCG) who
commission Provide to deliver the service.
The film is available as a discursive resource for Following the work by CAIL, Healthwatch and
schools, clubs and groups to generate debate Pinpoint; a report called ‘Sitting Comfortably’ was
and challenge accepted views and to increase written and submitted. The wheelchair user
understanding of the Social Model of Disability. forum was established to find out if there had
been improvements in the service and to act as a
The video can be viewed on our YouTube critical friend to the CCG and its wheelchair
channel here: service.
https://www.youtube.com/watch?
v=S0DImiBe9mk

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
The project leader, Justin Craig, visited service as there were national developments,
Cambridge 105 radio to talk about what he had such as personal wheelchair budgets, which
learnt. Listen to Justin on Cambridge 105: were taking place but they would need to be
https://cambridge105.co.uk/suzie-thorpe-23-11- involved in any new tender.
2017/
At the second meeting held on 24th November, it
Wheelchair User Forum: was found that there were still concerns with how
the service was operating. People talked about
Back in July, CAIL held the first Wheelchair User long waits for repairs to be carried out and about
Forum, bringing together people with a wide how rude people were. One of the members
range of disabilities but all of whom use talked about how they had waited a year for a
wheelchairs, or are carers for people who use piece of kit and then explained when discussing
wheelchairs. their new wheelchair they were told the ‘NHS

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don’t do countryside’ (i.e. that chairs were for wheelchair ‘sinking’ in the gravel and becoming
indoor and pavement use only). A stuck. If it hadn’t been for a group of people
representative of the CCG attended the meeting attending a fitness class in the building seeing
and took notes to feedback to her colleagues how stuck we were and helping… the group
who were move involved in the commissioning of member would probably still be stuck in the car
the wheelchair service. park. The moral of this lesson is that even when
you know the venue you should check it out in
The forum explored how they can offer to work person to make sure it meets the needs of the
with the CCG when it comes to the tender event – it’s surprising what you can forget about
process for the new contract being developed in places!
2018 for the new service to start in 2019.
Graham Lewis - Development Officer

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! Listen to Graham on Cambridge 105:
The venue has a carpark… whilst the car parking https://cambridge105.co.uk/mike-prior-16-11-
spaces are paving slabs, the road area isn’t. 2017/
Where the car park is used heavily the gravel has
become imbedded and is quite solid for A Light Hearted Christmas Tale:
wheelchairs to move across. Unfortunately one
of the group A sprout, yes, a sprout!
members appears from a muddy
had to park field and said that he
further away was a stocking stuffer
and travel and was searching for a
across very ladder. I said his best bet
loose gravel! was a snake, he’s got
This resulted several ladders. In fact
in their he’s got a Monopoly on

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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

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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

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