DRILL Blog and News

Blog: Centre for Welfare Reform Issues around Chronic Illness and Disability.

The Chronic Illness Inclusion Project ran two extended online focus groups, each running over an eight-week period, where people could come together and explore issues around chronic illness and disability.

The online aspect of our research wasn’t for reasons of cost or convenience, it was fundamental to our aim of reaching an invisible housebound population. We wanted to include people who are often left out of traditional consultations and focus groups due to significant energy impairment: people who may too unwell to attend events, and whose concentration span is limited, sporadic and unpredictable due to “brainfog”. This is the very group that welfare policy makers have assumed are “just tired”, like everyone else, and who simply need to “try harder”.

We heard that their day to day reality is very far from this stereotype. The flexible setup of our research forum meant that people could take part from home, at time of their choosing, and had two weeks to respond to questions. Researcher, Stef Benstead, has collected the responses of our participants to the research process: It was often the first time that anyone had shown any interest in their experiences or valued their opinion on matters relating to chronic illness and inclusion in society. “I appreciate the opportunity to be heard and to share my experiences. No-one has ever really asked me about any of this before actually!” “I too have struggled to answer the questions only because it’s been so long since anyone wanted my opinion and the brain fog that comes with my illness making it difficult to remember the right words.”

Participants were grateful for the opportunity to take part in something that was intellectually stimulating and of relevance and interest to them: “I found it difficult to focus and switch my brain on again but it did me the world of good. You have all been amazing and it is a privilege to have spent time with you.” “The project has definitely helped me think more deeply about disability issues and the difficulty of applying frameworks to them.”

The forum created a community of people with shared experiences who could gain comfort from and fellowship with one another… “Thank you so much for creating this place where we could listen and be heard.” “Thanks to everyone who contributed; I’ve felt equally comforted and outraged by your stories.” … and which provided a space for safe expression of fears, difficulties and things that help. “I have appreciated learning from and listening to the perspectives of others without feeling judged, pitied or different.” “It was great to be able to talk in a non judgemental [sic] environment, while learning the similarity & differences joining people with life limiting illnesses”

Participants appreciated the learning that they derived from one another… “It has also many [sic] meant I have a better understanding of my own relationship with my health and conditions. I think there is a long way to go but I feel I have greater acceptance and understanding.” “I found it to be a helpful, informative and sometimes profoundly moving experience.” … which they were able to use to improve their lives. “I am incredibly grateful to this project for finally giving me the language to express who [sic] my chronic illness effects me in a way both that I can explain it to those who need to know, but particularly to decision makers. That has made a huge difference in getting somewhere with getting the help I need.” “I am slightly more confident in ascertaining my own health needs and have improved my relationship(s) with my health providers, or made efforts to, so that I can feel more in control.”

Taking part in the forum gave participants hope for the future: that things could be better and the damage of the past eight years was neither necessary nor inevitable. “As awful and abusive as I think the last 7 years have been for people like us, it’s triggered a kind of activism and urgency in people with chronic illness and the people who care about us that I hope we can come out of the other side in a better place, where we’re treated like people. So, yes, thank you for being part of giving me hope again.” “I have really appreciated this opportunity and think it has great potential… I do hope it continues in some way as it is imperative we chronic illness folk have a platform to air our opinions and experiences; and I hope to work with you all in the near future.”

It was important to participants that the work be taken forward and put into practical effect, rather than being merely more words: “It’s good in that it’s enabled people to express their views but it’s been too wordy – far too concerned with terminology… My understanding of the social model or any other theoretical construct is low because I lose the will to live trying to plough through the words which at the end seem to bear little relation to my life.

However, this project is probably the first stage in disabled people getting together online to campaign for better treatment, especially in relation to our iniquitous benefits system.”

For further information on the project visit chronic-illness-citizenship-mobilising-collective-voice-social-change/

News: Recruitment

DISABILITY ACTION

One in five people in Northern Ireland have a disability.  Disability Action believes in human rights for all and works to promote, protect and uphold the human rights of people with disabilities.  We are a Northern Ireland wide pan disability organisation working with disabled people with various disabilities; physical, mental, sensory, learning and hidden.

The Disability Research on Independent Living & Learning (DRILL) programme is a UK wide research programme delivered in partnership by four major pan-disability organisations in each of the UK nations – Disability Action, Disability Rights UK, Inclusion Scotland and Disability Wales.  The programme is creating a new and innovative research agenda in each nation and UK-wide.  We work with policy makers and senior practitioners to ensure that the research evidence informs positive policy and practice solutions to fit future economic and social trends.

Disability Action wishes to appoint to the following position: –

Evaluation Officer (Ref EOD19)

£14,152 pa / 20 hours per week

Fixed to 31 August 2020

The DRILL Evaluation Officer will be responsible for (i) ensuring that the appropriate monitoring and

evaluation system and tools are in place and are functioning satisfactory to capture the outputs, outcomes and impact of the 32 research and pilot projects funded by DRILL; and (ii) supporting DRILL in the most effective use of the research and pilot evidence provided by the Programme.

The successful applicant must have the following:

  • A third level qualification (i.e. a degree or equivalent level professional qualification) in a relevant discipline with 2 years’ experience of (i) undertaking data collection, data analysis and reporting and (ii) presenting and using research evidence and findings effectively.  (Or alternatively 5 years experience).
  • Experience of the monitoring and evaluation of grant funded projects and producing evaluation reports.
  • Ability to work on own initiative and as part of a team.
  • Strong written and verbal communications skills, including creative presentation of information and use of data visualisations.
  • Proficient in Microsoft Office as well as research software.
  • Experience of working to tight deadlines and managing a diverse workload.
  • The ability to meet the travel requirements of the post – ie to undertake travel throughout Northern Ireland and the rest of the UK.
  • Demonstrated understanding and commitment to the rights of disabled people, and in particular independent living.

Application packs can be downloaded at www.disabilityaction.org: or obtained by emailing [email protected]  The application pack is available in alternative formats such as Braille, large print, etc, on request.

Closing date for receipt of completed applications is 2pm on Thursday 31 January 2019.

Disability Action is an equal opportunities employer and welcomes applications from all sections of the community.  Applications are particularly welcome from people with disabilities.

Disability Research on Lindependent Living and Learning Logo
Big Lottery Fund, Lottery Funded

News: Calling photographers, artists, illustrators

Can you help bring our work alive with images to convey life with chronic illness? We want to convey the sense that internet and communication technology are a lifeline for people who may be housebound. Do you have any creative ideas for how to portray both solitude, confinement, invisible illness and also the connection and solidarity that our screens can bring? Please get in touch if you have ideas: [email protected]
NewsInfluencing. Our research into benefits and work with chronic illness has informed a major report on disability employment. Switching Focus by Liz Sayce, says more must be done to give employment opportunities to people with fluctuating and energy-limiting conditions and also to include us in the disability rights movement generally.

Briefing. Ahead of planned meetings with MPs, we’ve produced a one-page document explaining energy impairment and why we are organising to change policies and perceptions on the basis of our lived experience of chronic illness.

Dialogue. I took part in a Q&A session about the Chronic Illness Inclusion Project with online magazine Spooniehacker.“It can be very difficult to disentangle the illness from the stigma that comes with it… how much negativity there is towards us, how much we have internalised it, and how profoundly it shapes our lives.” Catch up here if you missed it.
 Falling Down the Rabbit Hole
“The way health services are organised into many narrow specialisms creates significant problems for anyone with rare or under recognised systemic disorders. GPs are out of their depth and patients are passed from one clinic to another with consultants failing to see the big picture and none taking overall responsibility for care.” 

Guest blogger, David Johnson, writes about a lifetime of searching for answers to his chronic illness: the missed clues, the catch-all diagnosis of “chronic fatigue” that masked the cause of his health problems, and the battle with Atos that finally uncovered the cause. Read more
Have your say
Have you had cognitive-behavioural therapy or graded exercise treatment for M.E. or Chronic Fatigue Syndrome?
Your experience of these treatments must be heard. The National Institute of Health and Care Excellence (NICE) is rewriting the UK ME guidelines. As part of this process, the Forward-ME Group has prepared a questionnaire to provide additional evidence on cognitive behavioural therapy (CBT) and graded exercise therapy (GET) to NICE. Take the survey

What’s your position on opioid use for pain management?
This article in The Guardian says that doctors prescribe more opioids in poorer areas of the country and suggests that other pain management interventions are more effective. Would you prefer talking therapy or activity management to taking pain-relieving drugs? Or do you struggle to get the level of pain-relieving drugs you need from your doctor? Email me with your thoughts.

Thanks and best wishes,

Catherine

For further information about the project please click on the link Chronic Illness and Citizenship – Mobilising a Collective Voice for Social Change
 

News: Fully Funded PhD Opportunity.

In collaboration with Cardiff University Business School and Disability Wales, the DRILL Programme is delighted to announce a fully funded PhD opportunity to research ‘What Works in Wales?

Developing an evidence base to inform a kitemark for employers to address the disability employment gap’. The aim of the project is to identify an evidence base of ‘what works’ for disabled people in employment, to contribute to the creation of a Disability Standard for employers.

Forming part of the DRILL legacy, the student will work with DRILL partner organisation, Disability Wales during the PhD to develop an evidence base to address the disability employment gap. This three- or four-year PhD studentship is funded jointly by the Economic and Social Research Council (ESRC) and Cardiff University Business School.

Background DRILL (Disability Research on Independent Living and Learning) is an innovative five-year UK-wide programme led by disabled people, for disabled people and funded by the Big Lottery Fund (BLF). Launched in 2015, DRILL will conclude in August 2020. The Programme is a four-nation project, led by Disability Action NI in partnership with Disability Wales, Disability Rights UK and Inclusion Scotland.

DRILL promotes coproduction and collaboration between disabled people and their organisations, academia, research bodies and policy makers. This collaboration between DRILL, Disability Wales and Cardiff University is one example of the growing connections between disabled people’s organisations and universities throughout the course of the DRILL Programme.

To date the programme has funded 32 diverse, coproduced research and pilot projects across the UK. Several DRILL-funded projects have explored issues directly relating to the employment of disabled people, including the following:

Barriers and enablers to employment: Black disabled people living with Sickle Cell Disorders (SCD) (led by De Montfort University)

Legally Disabled (led by Cardiff University)

Getting On and Staying On (led by Sheffield Occupational Health Advisory Service)

The Bridge: Changing attitudes and communities by turning skills and experience into earnings for self-advocacy organisations and self-advocates (led by Barod CIC).

Research and pilot projects, such as these, have enabled disabled people to have a direct influence on decisions that impact on their independent living, particularly in relation to policies, legislation and services.

PhD project aims and methods This PhD research is in collaboration with DRILL, Disability Wales and Cardiff University Business School. The student will work with Disability Wales during the PhD to develop an evidence base to address the disability employment gap in Wales.

In June 2018, Disability Wales Chief Executive Rhian Davies was a keynote speaker at a launch event organised by the Learning and Work Institute Cymru and the Welsh Government. This made 6 recommendations: one was to ‘develop a Wales Disability Standard’: a kitemark for employers to be part of the Welsh Government ‘Employability Action Plan’, which the student, in collaboration with DRILL and Disability Wales, will help develop.

Much existing research on the disability employment gap concentrates on the number of disabled people out of work, often driving the short term political objective of getting disabled people off benefits and into any kind of work and overlooking the importance of job quality and careers.

Building on DRILL-funded research from England, Scotland, Wales and Northern Ireland, this project aims to highlight what disabled people themselves regard as best practice in employment.

The research will focus on 3 key questions: 1. How can findings from the DRILL programme, which used co-production as a research methodology and provides unprecedented insights into disabled people’s experiences of society, the economy and polity, inform employment policies and practice? 2. What factors contribute to the persistent disability employment gap in Wales? 3. What already works for disabled people in employment and how could future initiatives build on existing initiatives/practice to inform the development of a Welsh standard for employers?

Stage one will involve a secondary analysis of relevant data from DRILL projects – using data archived at the UK Data Service – alongside a documentary analysis of regional sources to develop an understanding of the Welsh context.

Stage two will develop ‘profiles’ of good practice, drawn from regional, national or international examples of organisations, occupations, or successful social policy or third sector initiatives. Creating ‘profiles’ will entail interviewing key actors and stakeholders as well as evaluating the stated outcomes. Where appropriate and ethical, media will also form part of the data collection. Visual media might, for example be appropriate to record evidence of inclusive and accessible technology, or built environment.

Building upon existing DRILL networks, it is expected there will be scope for members of the four National Advisory Groups (NAGs) or the Central Research Committee (CRC) to form part of the PhD project steering committee. This will ensure coproduction, enabling disabled people to feed into future research and policy and service provision.

The ultimate aim is to identify an evidence base of ‘what works’ for disabled people in employment, to contribute to the creation of a Welsh Disability Standard for employers. In turn, it is envisaged this will also positively influence policies and practices in England, Scotland and Northern Ireland.  For more information and how to apply.

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