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Being paid for something I'm good at

Janice Tillet started working as an Expert by Experience in 2015 with Choice Support.

I'm Janice Tillet. I'm married and have a daughter of ten. I'm both deaf and blind and have some physical disabilities and anxiety.

In 2015, I started working as an Expert by Experience with Choice Support, who are contracted by the Care Quality Commission (CQC) to recruit, train, and manage Experts by Experience.   It has been great for me.  I'm being paid for something I'm good at. Experts by Experience has given disabled people the chance to give advice from the angle of being a service user.

Before this I was made redundant from Deafblind UK where I used to do deaf blind awareness training.  I was also a voluntary director. After redundancy, I went on to complete some advocacy training and spent two years working on my own health, my mental health and having some orthopedic operations.

I know for myself that going to a GP or hospital can be quite challenging at times.  I can't lip read which makes communication difficult with medical staff.  You are prodded and poked around by people and you can't understand what they're saying. 

I've taken part in CQC inspections at GPs surgeries, residential care homes and one hospital trust.  Technology helps me cope. I use bone anchored hearing aids.  My hearing is still mildly impaired even with the use of aids. I use assistive technology for IT needs and speech software.  My phone speaks to me but I prefer to read emails on my laptop.  I need a support worker when I complete inspections and I use a red and white cane which tells people I'm deaf and blind.

I get asked to work as and when CQC inspections come in. Before we start inspectors tell us what to focus on.  My role is to talk to the patients or users to give in depth input from their perspective.  The inspector may look at other things like food hygiene and the paper work.  They may not get the same impression as we do as Experts.  This helps give a fuller picture to the inspector so they can pull together their report.

I could also speak to a staff member, a relative, an older person or a Patient Participation Group. It's a very interesting role.  It can be a challenge sometimes getting people to speak, for example patients at the GP surgery may just want to get in quickly and leave.  Experts note down everything people say to us; some people have dementia so this needs to be considered.

Some inspectors ask me to do an access audit so I walk around and experience the service as a person with both sensory and physical disabilities.  I let them know how accessible the service is for me.  I can share my experience of using electric doors, for example - that's the sort of thing I would think of that others may not.

Kim Arnold, who is the lead of the Experts program at Choice Support feels awareness training would be useful and is looking into this. Training enables participants to put in ear plugs and wear blind folds.  They see how time perception is affected, participants can become scared and fearful.  Being deaf and blind is a hidden disability.  

During an inspection, I ask medical staff how they make communication accessible. I asked staff in one GP surgery about the screens for example, that bring up the name of the next patient.  I'm blind so I couldn't read them.  I asked how they get around that?  Staff explained they would announce it audibly for blind patients, but because I'm both deaf and blind I also asked what they would do if a person can't hear.  That covers both perspectives. Where appropriate I also ask staff how they would guide a visually impaired person safely.  I would remember if I was guided safely myself and would notice if staff didn't seem to know what to do.  I also ask how they present written information.  Do they facilitate using large print or assisted speech on phones and laptops, for example? 

It's all about my having that extra bit of knowledge I can use to help the inspection as much as possible. I feedback all my interviews and insights after an inspection, which adds value to the final report and helps improve services.

Earlier in the year I was on an Experts development day with Choice Support.  A Public Engagement person was there from CQC.  She remembered my article about deaf blindness which I'd written some time ago for an Experts by Experience bulletin. She commented that other inspectors also noticed it.  I was pleased she remembered.  It's good that CQC inspectors know a bit more about deaf blindness as a result.


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