DRILL Blog and News

News: First publication from the Chronic Illness inclusion Project

We are very excited to share the first publication from the Chronic Illness inclusion Project research with you.

Stories of our Lives is a compilation of 5 case studies from our 8 week online focus group on benefits and work last autumn. (Pdf and Word versions attached). These powerful testimonies illustrate some of the themes we will be exploring in our final project report:

  •  Energy impairment is a common experience across many different health conditions and disease categories.
  • People with energy limiting chronic illness have a strong desire to contribute to society but are locked out of mainstream employment employment models.
  • The strategies for inclusion and equal citizenship of people with ELCI often lie outside of formal employment.
  • Assessment systems for disability benefits do not capture the impact of energy impairment, especially the cognitive features.
  • Existing forms of disability employment support do not address the barriers to work with energy limiting chronic illness

There is much more to tell and we hope to secure support to produce a full policy report on social security and employment with chronic illness in due course.

The Chronic Illness Inclusion Project is about much more than social security and employment. Look out for our manifesto for inclusion and final report at the end of 2019.

With best wishes,

Catherine Hale.

Please download paper at reclaiming-chronic-illness

For further information about the project please follow the link chronic-illness-citizenship-mobilising-collective-voice-social-change/

 

News: A paper from Barod based on the DRILL-funded AWPF research.

We are delighted to say our paper with Jan Walmsley, based on the DRILL-funded AWPF research, has just gone live.

The link to the overview of the paper can be found below.

https://www.tandfonline.com/doi/full/10.1080/09687599.2019.1613960

There are a limited number of free links we can send to people who do not have university access to the journal. If that applies to you, please contact http://barod.cymru/

For further information about the project follow the link to bridge-changing-attitudes-communities-turning-skills-experience-earnings-self-advocacy-organisations-self-advocates/

 

Blog: The Chronic Illness Inclusion Project

I’m on my way to Belfast to present the findings of our research to the DRILL team. For someone who works from bed and hasn’t got out and about much for the past 30 years, this feels momentous.

The Chronic Illness Inclusion Project has collected masses of valuable knowledge and data on the lived experience of chronic illness. Four months of online focus groups and a survey of over 2,000 people. This will be the first time we share any of it, in the lead up to our report and manifesto at the end of 2019.

It’s exciting because I think our work is revealing a hidden side to disability: the unhelpful and even hostile attitudes to people with invisible and energy limiting chronic illness and ways these attitudes disable us. I look forward to hearing the response to our presentation. I hope our work will serve to expand understandings of what ableism looks and feels like, and lead to new ways of challenging it.  People with energy limiting conditions are the second largest group of disabled people in the UK so it’s vital that our lived experiences are heard.

It’s also exciting because, as well as looking forward to meeting the DRILL team, I will be meeting our advisory group member and volunteer, Victoria Clutton, for the first time. Most of my colleagues in the CIIP have never met in person before. We collaborate online from different parts of the country. This meeting is a rare opportunity to see each other, and be seen, face to face, and the DRILL team has stopped at nothing to get us here and meet our needs.

It’s also a huge challenge. Will I be wiped out from the travelling? Will I have one of my frequent but random bad days and not be able to do credit to all our work? Even on a good day, I can’t deliver a presentation for more than 5 – 10 mins without my brain shutting down. So I’ve been given extra time as an adjustment.

Our presentation on 5th June is just a small part of an exciting agenda about the legacy of this groundbreaking research programme. I want to hear about the work of others. I want to be part of the conversation. But it’s a full day programme and my overall function is limited to two to three hours at best. The rest of the time I’ll be lying down and/or in a stupor, to put it bluntly. It’s frustrating to have to miss out.

But these challenges aren’t just mine, they are common to the chronic illness community. With all the best support in the world we often just can’t take part in things as we would like to. So hopefully this event will also serve as a vital opportunity to bring to light the access issues faced by people with energy limiting illness and begin a conversation about what inclusion means when barrier removal isn’t enough to enable participation.

Catherine Hale.

 

Blog: ‘Match Me – what works for effective allocations of adapted/ accessible social housing in Scotland’.

This reflection highlights the enablement of two self-identified disabled individuals involved with the DRILL funded project:

‘Match Me – what works for effective allocations of adapted/ accessible social housing in Scotland’.

 Project Context

Match Me was a 21 month research project looking into the allocation of adapted and accessibly designed social housing for disabled house seekers/tenants. The project examined what works and what does not. The project partners included Horizon Housing, Housing Options Scotland and the University of Stirling. Three local authority case study areas took part in the research. The project tracked the lived experiences of twenty-eight households with a disabled social housing applicants/new tenant over course of one year. Each household was interviewed twice. Alongside this, observations were carried out into the allocation systems used by the three local authority case studies. Match Me used a co-production approach through steerage from a Project Advisory Board, recruitment of three self-identified disabled Peer Researchers and delivery of three all day feedback and discussion sessions held within each of the local authority case study areas.

Match Me Research Assistant

Hello, I’m Dr Dianne-Dominique Theakstone. I worked as a Research Assistant on the Match Me project. I’m registered blind, thirty-six years old and live in Stirling. I was involved with the early inception of the research and all the way through the pilot study in 2016. My support needs as an early career researcher are mainly around access to written information and sighted-guide assistance during field work in unfamiliar environments.

The national scheme called Access to Work provided funding for a support worker. I worked three days a week on the Match Me project and utilised twelve hours of support worker services. My support worker was able to help me access pdf files, for instance, which were inaccessible for my laptop with Jaws (a type of speech software). My support worker assisted me to navigate websites especially where there was a lot of information to skim read or where there were inaccessible features, such as unlabelled buttons for Jaws to recognise. My support worker would proof read written materials that I produced and help with the creation of PowerPoint presentations for local authority feedback sessions. I conducted interviews with disabled social housing applicants/tenants in their homes or in public spaces. Although I’m a Guide Dog Owner, I currently have Merlin a very handsome three-year-old black lab, I need to know a route in order to give Merlin instructions on where to guide me. Being totally blind I also found social interactions within group environments challenging due to the lack of eye contact. My support worker would assist in group settings during the project by alerting specific individuals that I wished to speak to them or by distributing project materials on my behalf.

I’m grateful to DRILL for providing the opportunity for me to work as a Research Assistant on such a fantastic project which produced a unique robust evidence-base around disabled social housing applicants/tenants lived experiences. I’m aware of the challenges facing disabled people in general who seek employment. The Match Me project greatly developed my skills as an early career researcher, especially in the area of supervision of peer researchers. I found everybody on the Match Me team inspiring and I look forward to taking my confidence and passion forward in future co-production research.

 

Match Me Peer Researcher

Hello, I’m Zack (not my real name) and I was a Peer Researcher on the Match Me project. I chose anonymity while taking part on the project. I’m in my sixties, registered blind and live in a rural location in Scotland. The role was attractive to me because it enabled me to work with Disabled persons while trying to seek out the problems, they may be experiencing in finding suitable adapted accommodation. This was relevant as I had a poor experience of housing issues when I became classed as disabled.

My experience of the Match Me project was I met some inspirational people both as interviewees and people in the project itself. I found that the training for the Peer Researcher role created a supportive environment. The training session lasted 4 hours. The first half covered an overview of the project, the peer researcher role, gaining consent, PVG checks and travel expenses. The second half focused on key terms used in interviews (such as informed consent and anonymity), field work safety procedures, good listening skills, the interview schedule and a mock interview which I enjoyed. The Research Assistants were very supportive in enabling me to shadow a few interviews before supervising my interview skills.

I found that the main challenges in my area is it consists of very remote areas. Even when public transport is usable, such as trains, there can still be problems when engineering work is undertaken as the main station is unable to accommodate relief bus services by the entrance to the station. This involves a very long walk away from the station and unfortunately there is no passenger assistance either to or from the replacement service. Local bus services are limited as well as not reliable. Fortunately, the Match Me project was very accommodating over travel expenses, normally refunded on the same day or following, which enabled the Peer Researcher to fulfil their role.

I would finally add that the whole experience was astounding, and I would definitely get involved in another project with the team. I’m already recruited to help out as a Peer Researcher on another co-production project called ‘My Support My Choice: users’ experiences of Self-directed Support in Scotland’ run by Self Directed Support Scotland and the Health and Social Care Alliance. I recently graduated with a BA (Hons) in Media Studies and I’m looking forward to remaining an active ambassador and role model for local disability related organisations.

 

 

 

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