Blog: Centre for Welfare Reform, On Not Being Believed
Wheelchair Vista on the lasting effects of being doubted
Many of us with long term conditions struggle to accept that we can no longer live life as we used to. It took me almost ten years.
I carried on working for longer than I should. A resident at the care home I managed said; “It’s doing you no good keeping on working. Why don’t you reduce your hours or stop altogether?” She saw that I could not stand for long without leaning against a wall. Staff noticed that I always relied on the lift and was often in urgent need of the loo.
When I had time off work for minor surgery it had to be extended due to massive bruising sustained in a car crash. This was soon followed by investigations for IBS and a referral for knee surgery, which culminated in my employment contract being ended.
After numerous consultations with specialists, who were honest with me about the available treatments, I understood that my body was no longer going to function as it had. Nonetheless I was listened to, given choices and, most importantly, believed.
I hated not working and hoped to return, however a bad reaction to chemotherapy treatment for cancer led to severely reduced lung function and worsened fatigue. Finally, I accepted that I would never work full time again.
My children and then-partner were supportive. We discussed the possibility of a lung transplant but the consultant made the decision for me: a transplant was not appropriate. I was fine with that, having already adjusted to using a mobility scooter to get around. Then my relationship ended and I struggled with daily chores – I was permanently exhausted and out of breath. Upon asking social services to increase my care package I had my first experience of being disbelieved.
My original care package during cancer treatment was awarded swiftly and I expected a similar process – I was in for a shock. The social worker’s premise was that because I was still seeing consultants and surgeons that there must be something more they could do. Despite explaining that a lung transplant had been ruled out she insisted upon another referral.
Not being believed had a profound effect. Despite my background as a Clinical Nurse Specialist I began querying both my diagnosis and clinicians’ decisions. Instead of being secure in my choices I felt unsettled and confused. Maybe I hadn’t followed through on some possible options? Talking to nurses with the same expertise as myself, I asked ‘Should I have a transplant?’. All confirmed that both age and the complexities of my other health conditions excluded surgery.
Deep down I knew they were right, yet I was being pushed into checking and double-checking. I still feel the emotional pain this confusion caused. Why couldn’t this social worker understand? Eventually a strong letter from my Respiratory Consultant stopped the bullying but I was left traumatised.
Other incidents with the same social worker triggered a formal complaint. When allocated a new social worker the enhanced care package I needed quickly followed. The relief was enormous and my quality of life improved substantially.
“…disabled people’s need for social care puts us in a dependent position. The choice we face is stark: seek support and risk being discredited or carry on as usual and struggle with limited life choices.”
Eventually increasing back pain meant I could no longer comfortably use my scooter. Fortunately I got a grant to buy an electric wheelchair, however my flat was not wheelchair accessible. The wheelchair lived in the car and had to be dismantled and brought inside for charging. My need for an accessible flat was greater than ever, however I had already been on the waiting list for eight years. None of the properties viewed during this time were wheelchair accessible.
By chance I was offered a perfect flat, although in different London borough. The Care Act dictated that my care package should move with me so I had no reason to worry. However, securing the care package became a dystopian nightmare. The new borough required confirmation of my circumstances from consultants who no longer cared for me! Most of the surgery undergone during my initial time off work was done privately; some treatment also took place when I lived in the US – I don’t have the money to access the information they require.
A referral to another Respiratory Consultant led to me being discharged, as I don’t qualify for continuous oxygen – the one treatment that might reduce my breathlessness. The social worker’s response: “We may not be able to accept that.” I’m back in the trauma of not being believed. Each social worker visit left me more distressed.
My professional work has included being an Expert Witness in several court cases – I’m used to being believed and respected. Finding myself in a parallel universe where my skills and knowledge are disregarded is frightening.
Relationships are based on honesty and trust. In most cases we choose who to have relationships with, but disabled people’s need for social care puts us in a dependent position. The choice we face is stark: seek support and risk being discredited or carry on as usual and struggle with limited life choices.
Asking for care creates uncertainty. The imbalance of power can lead to abuse of process and of the relationship between social worker and client – we have little say in the process. My personal experience of two different London boroughs is borne out by conversations with other disabled people – being disbelieved is sadly all too common. Being doubted causes mistrust in what our body is telling us; this is dangerous. My first sceptical social worker caused emotional strain that worsened my IBS and I lost a great deal of weight.
Within three years of leaving work I was prescribed morphine patches for pain. Scans showed the consultant how damaged my spine was – he never once questioned the severity of my pain. Three months later I was discharged from his clinic, feeling validated and with my pain well managed. This is how good medicine is practised. During nursing training we were taught: ‘Pain is what the patient says it is, where they say it is and how severe they tell you it is.’ I followed this mantra everyday in my nursing practice; it is patient focused, ensuring that nurses listen and act accordingly.
What has happened to that level of compassion in social work? I have been forced to argue my case against someone without the clinical skills or qualifications to understand my condition. They don’t inhabit my body; they don’t feel the pins and needles in my hands that prevent me from gripping things properly. They don’t have 40% lung function and don’t know what it’s like to feel constantly fatigued. They are NOT me.
Whenever I’m disbelieved, personal doubt resurfaces. Fortunately I have learned enough therapy techniques to stop the broken record and my friends support me against the onslaught of cynicism – I’m able to remain reasonably balanced. Yet a friend in similar circumstances copes by self-harming and many others drink to blot out the disbelief.
Managing the rejection of my true life situation has left me exhausted. The unnecessary trauma has made me increasingly angry. A benefits system that constantly questions someone’s fitness for work, disregarding incurable conditions, is an outrage. The power that social workers have over disabled people’s lives is insufferable. A government that believes in austerity and cutting services is inhumane.
There is a better way. Trust disabled people to know their own bodies and what support they need. Belief should be the default position unless contradicted by evidence. We need a National Independent Living Fund linked to Support Money (benefits) by a Holistic Assessment. Combine ESA with PIP/DLA so that those awarded the highest support are automatically granted a number of social care hours per week.
Such reform would provide disabled people with a guaranteed level of care. It would promote dignity and permit disabled people to have a greater level of choice in their lives. How this would work is another post entirely.
Wheelchair Vista, is a blogger and disability activist. She writes about her life and issues that affect disabled people. She also tries to pass on some of the knowledge she’s gained along her journey. Read WheelchairVista’s blog .
Find out more information about the Chronic Illness Inclusion Project from Centre for Welfare Reform.
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News: Chronic Illness Inclusion Project Newsletter (November issue)
Launching “energy impairment”
From now on, “Energy Limiting Chronic Illness” is the term we’ll be using to better represent you and voice your concerns. From all our focus groups and survey responses, the concept of energy impairment seems to best convey what people with chronic illness want policy makers and society in general to understand and take account of. We were looking for a term that is not disease-specific, but conveys what it means to identify as a “spoonie”. In the language of Spoon Theory, energy impairment means lack of spoons, due to extreme fatigue or fatiguability, often involving pain and cognitive difficulty.
Energy impairment is not the same as everyday aches and tiredness and can be extremely debilitating. Until this is understood by those who make decisions about our lives, we will continue to be excluded from policies and services designed to address disadvantage among disabled people.
Next steps
We have now finished the focus group research and the data collection phase of the project. It’s time to start sharing the findings with you in a series of blog posts I’ll be writing in 2019, as we develop our manifesto for changing policies and perceptions around energy-limiting chronic illness. We’re planning ways to consult with you to ensure we reflect all your views and cover your priority areas for change.
This is the time to grow our movement as we develop the manifesto. Please share our new website in your networks and encourage your followers to sign up to our mailing list and like our Facebook page.
Write for our blog series
We are looking for more contributions to our blog series. This time on particular themes:
Belief and disbelief with chronic illness – how important is to be believed about our illness? What are the consequences of disbelief? Where are the battlegrounds of belief/disbelief in our daily lives?
Access – what are the changes we need in order to get out and about more easily with energy impairment. You could consider using mobility aids, accessing public spaces, using public transport, visiting shops and restaurants. Think about changes in public attitudes as well as practical adjustments.
If you want to write a blog post please email me at catherine.hale@citizen-network.org with the subject heading “blog post” and I’ll pass on your email to our blog editor, Fran Halsall.
Thanks and best wishes,
Catherine
Please click on the link below for further information
https://inclusionproject.org.uk/?utm_source=Chronic%20Illness%20Inclusion%20Project&utm_campaign=6d3d098d78-EMAIL_CAMPAIGN_2018_11_13_11_17&utm_medium=email&utm_term=0_7303002384-6d3d098d78-69228871
Also visit the project page by following the link https://www.drilluk.org.uk/chronic-illness-citizenship-mobilising-collective-voice-social-change/
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Vlog: Wiltshire Centre for Independent Living
The ‘ImaYDit’ project has produced the following Vlog providing a greater insight into the transition from childhood to adulthood for disabled young people. It is coproduced with up 10 young disabled co -researchers who are engaging with up to 50 young disabled participants to explore the opportunities for moving forward into independent lives.
For further information about the project please follow the link https://www.drilluk.org.uk/imaydit-i-made-imagining-young-disabled-peoples-transitions-time-major-societal-change/
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Blog: Exciting ongoing research: 4 Nations Research project on attitudes and disability
Northern Ireland section: ‘‘Is It Me?’ How do attitudes in the adult social care system impact on the independent living choices of disabled people’.
This blog is an update on the exciting project regarding attitudes towards disabled people in the context of adult social care that we are currently conducting. The project is funded by the Disability Research on Independent Living and Learning (DRILL) and the Big Lottery Fund, and is led by Disability Action NI (DANI). The project has the ambitious goal of conducting co-produced disability research, by setting up a Research Partnership comprised of disabled advocates, activists and a representative of the Northern Ireland Social Care Council (NISCC). The Research Partnership makes all the decisions about the project together ensuring that the lived experience and expertise of disabled people is always prioritised.
History and structure.
The ‘Is It Me?’ Project started in May 2018 and the final report for the project will be ready in September 2019. The project has provided a great opportunity to discuss the under researched topic of attitudes and their impact on independent living choices, at a time when the adult social care system in Northern Ireland (NI) is being reformed. The project is divided in four stages: stage 1 is focus groups with disabled people; stage 2 is a focus group with professionals in the adult social care system; stage 3 is individual semi-structured interviews with disabled people; and stage 4 is an online survey for social work and social care workers. Ethical consideration and approval has been sought and successfully granted by the independent DRILL Ethics Committee, comprised of experienced disability studies scholars who have advised us on how best to conduct ethical co-produced disability research.
What we have done so far.
We have completed stages 1 and 2 of the research, and the experience for both the Research Partnership and the participants has been positive and very informative! We facilitated four focus groups with disabled people in several locations across NI (Belfast, Cookstown and Derry/Londonderry). We engaged with 28 disabled people in these focus groups and had passionate discussions about the types of attitudes disabled people have experienced and how these attitudes can be both a barrier and an enhancement to independent living. We have spoken to people with various disabilities and long term conditions, who come from all corners of NI, and the various perspectives provided has ensured that the focus groups are shared and inclusive space.
We also facilitated a focus group with professionals in the adult social care system with the help of the NISCC. We wanted to speak to managers in the adult social care system, in order to get a rounded picture of how people perceive attitudes as either a barrier or an enhancement. What was fascinating about this focus group was that the managers recognised many of the issues and positive examples raised by disabled people. This has which confirmed that a vast majority of participants in the adult social care system would like to see it reformed, to account better for the impact of attitudes on independent living choices.
What comes next.
Our next stage will be stage 3, or semi-structured interviews with disabled people, where we will continue the discussion on attitudes and their impact on independent living in much more depth. The interviews will start at the end of January 2019 and will take place over a few months. We aim to get in touch with many different people, in order to give a platform for some voices that do not get heard often. We are excited about the opportunity to research attitudes further and put forward the lived experience of the participants at the core of our final recommendations.
Contacts
If you are interested in hearing more about the project, or if you want to get in touch with the Research Partnership, please contact the lead researcher Ivanka Antova from DANI at ivankaantova@disabilityaction.org, or by calling 028 9029 7880.
For further information on the project please click on the link http://is-it-me-how-do-attitudes-within-the-socail-care-system-impact-on-the-independent-living-choices-of-disabled-people/
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Blog: Greetings from the British Deaf Association Northern Ireland!
So far we have made great progress with our DRILL project, which focuses on Implementing Article 13 of the UNCRPD: Enhancing Deaf People’s Communication Access to Justice in Northern Ireland. We have been working in partnership with Queens University (Belfast), Syracuse University (New York) and Rowan University (New Jersey).
As I mentioned in my previous blog, there are a lot of barriers for Deaf people accessing the justice system. This is largely due to the fact that, for many Deaf people, their first language is British Sign Language or Irish Sign Language – not English. As part of the research project, our academic researchers interviewed police officers for their experiences/knowledge of working with Deaf people, at the same time, we organised information/ training sessions for Deaf people at a police station. We have been working tirelessly with our partners to try to break down these barriers. Great examples of this are the events we arranged with the local Police Service for Northern Ireland (PSNI). We invited Deaf people to come along to tours of two police stations in Northern Ireland. This was an eye opening experience, particularly for the police officers involved. Having the Deaf people in the station meant that they could see that there were many obvious barriers to communication. Each group was given the opportunity to ask questions which proved challenging for the police officers as they were unable to answer some questions due to their lack of experience of working with Deaf people. It was a very worthwhile trip for all involved!
We are looking forward to our second Deaf Advisory Group (DAG) meeting. We are excited about the amazing guest speakers who will attend including: Emma Gilbert, who is involved with PLOD. PLOD stands for Police Link Officer for Deaf people and is a scheme that promotes equal access to the police for people in England who are deaf or hard of hearing. The purpose of this scheme is to build and maintain relationships with the deaf community within the county and for PLOD officers to act as a contact point for the public, staff and officers in the force who have or may have contact with deaf people. PLOD is made up of police officers, Police Community Support Officers (PCSO’s) and staff members from across the force. Andrew Geary, a police officer in Ireland who is also a father of a Deaf child is hugely passionate in supporting Access to Justice in Ireland for Deaf people. He is very keen to get involved with and PLOD based in Ireland, as well as Johnny Hamill, a police officer in Omagh, who is training to become a Police Link Officer for Deaf People in Omagh and Fermanagh. These will be trialled for few months and if successful, consideration will be given to having it right across Northern Ireland. We are also currently working on evaluation forms to make sure we get the feedback from Deaf people when using the PLOD. The group are all passionate about supporting the Deaf community in Ireland and Northern Ireland. We are very honoured to be working closely with these professionals with the aim of developing resources that will support their work and make their services more accessible for Deaf people.
Further information sessions that will focus on accessing the justice system are in the planning stages. We believe it is so important that Deaf people have a good understanding of the range of services available. In addition to this we are arranging British Sign Language and Irish Sign Language Equality training for professionals in the justice sector across Northern Ireland. All the above will be keeping me busy over the next few months!
Our partners will also be busy carrying out a scoping exercise and preparing their own research with the aim of providing evidence based research that will improve accessibility so that Deaf people can have more positive experiences when accessing the justice system in the future. So far our academic researchers interviewed our ‘Justice Focus Groups’. Within this group there were police officers, solicitors, barristers, prison officers and many more professionals. They were happy to be involved in assisting with the gathering of evidence from their own previous experiences of working with Deaf people. The researchers uncovered a lot of very useful information that can be used to address where the main barriers exist for Deaf people and how we can work together to tackle this in the future. I can already see how this research will have a positive impact on improving accessibility in the justice sector. I am so excited to read the final report when it is finished!
I was delighted with the feedback we have been given from those involved in the tours. Many Deaf people commented that, as a result of attending the tour, they felt more confident and knowledgeable about how to access a police station. This confidence will hopefully make them more likely to go into their local police station in future, if necessary. As was previously stated, the police officers involved in the tours were quick to realise that they need to look into how their service can be more accessible. As a result of the tour they were made aware of the importance of their officers being able to communicate with Deaf people in-case they arrive at the station unexpectedly. It is clear that the events so far have had a massive impact on those involved. It has made the barriers more evident which has been a catalyst for positive change going forward. I feel confident that the upcoming events and research will delve into this deeper and I look forward to continuing to improve accessibility for Deaf people throughout the justice system.
For further information about the project please follow the link enhancing-deaf-peoples-communication-access-justice-northern-ireland
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Toolkit Launch: All Wales People First
The new tool kit has been designed to help people with learning disabilities track self-advocacy projects.
It provides guidelines on how to set up projects in ways that make it easy to monitor project successes.
The tool kit, which has been developed by people with learning disabilities, also has a set of prompting cards to help people develop ideas for projects around key issues such as self advocacy, hate crime and better health services.
Joe Powell, All Wales People First, said:
“We wanted to make it easier for people with learning disabilities to set up, run and monitor projects on issues that directly affect them. The tool kit will help make that happen. It can be also be used by funders to check that the projects are providing value for money.”
For further information on the project please click on the link developing-toolkit-self-advocates-can-use-check-projects-deliver-promise/
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Blog: Mental health and physical activity in Northern Ireland. Mental Health Foundation.
Most people know that engaging in physical activity is not only important for our physical health, but also for our mental wellbeing.
Much of the existing research focuses on the impact of physical activity on depression, with multiple studies finding that physical activity is associated with a reduction in depressive symptoms. The Royal College of Psychiatrists states that a moderate level of exercise can be as good as antidepressants or cognitive behavioural therapy (CBT).
The relationship between physical activity and mental health appears to work both ways1, with increased physical activity resulting in better mental health and vice versa. Not surprisingly, then, those with severe mental health problems are less likely to engage in physical activity and are more likely to be physically unwell.
The evidence for the positive effects of exercise on a range of mental health problems is growing, with studies demonstrating that exercise can improve the lives of people with schizophrenia2. Despite this, exercise interventions are often neglected in mental health care3 and the mortality gap for people with serious mental health problems continues to widen. This is particularly pernicious in Northern Ireland, a country in which the recent political turmoil has exacerbated the mental health crisis to catastrophic proportions.
The Mental Health Foundation, along with several partners, including Queen’s University Belfast and three Recovery Colleges (Northern Recovery College, South Eastern Recovery College and Western Recovery College), has received funding from DRILL (Disability Research on Independent Living & Learning) to conduct a one-year pilot study to address the high levels of physical ill-health and preventable deaths of people with serious mental health problems in Northern Ireland.
What the study will involve
Co-production will inform the entire study. Individuals with lived experience of psychosocial difficulties will receive accredited training from Queen’s University Belfast to become peer-researchers on this study. They will then have an instrumental role in co-producing the programme design, research methodology, analysis, research findings recommendations and promotion.
The physical exercise programme, targeted to people with a range of serious mental health problems, will be developed from a series of co-production workshops with people with lived experience, and consultations with recovery colleges, sports organisations and health professionals.
Participants will undergo tailored health checks to determine the programme’s impact on participants’ physical and mental health measures. The sustainability of the programme will be explored via interviews and consultations with partners, and recommendations and next steps will be identified.
The shocking fact that more people in Northern Ireland have died by suicide in the past 18 years than were killed during 30 years of conflict highlights the urgency of the situation. Mental health problems can no longer be ignored, and innovative, creative approaches and solutions should be explored.
This is exactly what we seek to do with our partners through this large-scale physical exercise programme designed to empower people with serious mental health problems to incorporate physical activity into their lives. Not only does this innovative study seek to develop the evidence base for physical exercise interventions in mental health, it also hopes to provide practical solutions that will improve the delivery of services in Northern Ireland.
For further information please visit (https://www.mentalhealth.org.uk/blog/mental-health-and-physical-activity-northern-ireland
& project page
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Press release: University of Bedfordshire, Disabled parents often seen as risk to their children rather than given support, report warns
Health and social care services are failing disabled parents and their children, a report published today suggests.
Disabled parents told the report’s authors that health and adult social care professionals assessing their needs often ignore the parenting implications of their impairment and fail to communicate with their counterparts in children’s services.
Meanwhile, children’s social care professionals too often see the parents’ impairment as a potential risk to their children and prioritise monitoring over meaningful parenting support that would keep families together and avoid crisis interventions. Disabled people are therefore too anxious to seek support for fear they will be seen as failing.
The research was undertaken by the Tilda Goldberg Centre for Social Work & Social Care at the University of Bedfordshire and Ginger Giraffe, an organisation that brings together disabled people with health and social care students on placement.
The funding was provided by the DRILL (Disability Research on Independent Living and Learning) programme, a £5m scheme led by disabled people and funded by the Big Lottery Fund.
The report includes accounts from disabled parents, including those with mental health problems. It shows that health and social care professionals are not following government guidelines around family assessments and eligibility for social care support.
One parent told researchers: “You don’t want to call social services, you are scared to call them because they might think you are incapable of looking after the child, so you have to struggle with what you have… because then they will say, ‘we told you she’s disabled, she can’t look after her child’, so there’s always that element of fear, of ‘shall I or shall I not?”.
The report concludes that children are largely invisible to adult social care and health professionals. One parent with mental health problems said that when she was sectioned she was asked if she had any pets that required care but not about her children.
Social care professionals planning post-discharge support for a mother of two children who had broken her back decided she should receive meals on wheels – but that food would not be provided for her children.
The same woman told the research team of a later experience: “Somebody knocked on the door and they said they were a children’s social worker. I panicked, I thought ‘what did I do wrong for them to come in?’, and I asked, ‘who sent you here?’ and they said, ‘Oh it’s because you are disabled’.”
Director of the Tilda Goldberg Centre at Bedfordshire, Professor Emily Munro said: “It was shocking to find that many disabled parents were often too scared to ask for help from social services for fear of being judged unfit to look after their children. There needs to be a more collaborative working relationship between children’s social care and adult services to ensure disabled parents can access the vital they need in order to fulfil their parenting role.”
Director of Ginger Giraffe Dan Vale added: “The power of this research is that it is truly coproduced by our disabled parents and the social work professionals, resulting in an authentic and eye-opening account of the experiences of a group of dedicated mothers and fathers whose disability proves no barrier to parenting, but for whom support was haphazard and ill-coordinated.”
Sue Bott from Disability Rights UK said: “This research gives a much-needed voice to disabled parents. Now professionals and policymakers need to listen to them. While we recognise the complex demands facing health and social care professionals, they should work with each other and with disabled parents to provide the support that keeps families together”.
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Blog: DRILL funded “Match Me” Project Advisory Group members share their experience so far…
Margaret Follon, Chair of the Project Advisory Group:
I was delighted to be asked to chair the Advisory Group for the Match Me research project. It has been a real pleasure to meet both the research group from Stirling University and the other members of the group who have come from a variety of backgrounds.
Our first meeting was spent getting to know one another and was a very positive start to the programme. Our most recent meeting involved hearing more about the extensive work of the research team, and Dianne and Julia [Project researchers] did a very thorough job of taking us through the work to date. It was also an opportunity for us to hear about the work of the peer researchers which was very effectively outlined by Glen.
I am looking forward to hearing about the next stage of the work over the next few months and to meeting up again later in the year.
Jean Morrison, Project Advisory Group Member:
I felt honoured to be asked to join the PAG
My interest lay in the provision for and access to housing disabled people. My experience lay in my association with a local Aberdeen group that helps match disabled people to housing in the city.
The results of the research will provide housing providers across Scotland with the underpinning research that will help them amend existing and/ or create new allocation policies that will remove some of the stress for disabled people to find suitable housing
Ann Marie Penman – Project Advisory Group Member
Up until 5 years ago, housing was never an issue for me and my family. However, our circumstances changed significantly at that time and we suddenly found that we needed adapted, accessible housing. It hasn’t been easy trying to get this and I’ve been very grateful to have the support of the charity Housing Options and housing association Horizon. I was therefore delighted to be asked by Housing Options to join the steering group for the Match Me project as my own experience had led to a wider interest in access to adapted social housing.
The meetings and discussion with the project team have been extremely interesting covering everything from the practicalities of engaging with those involved through to research ethics. I’ve been able to use some of my own experiences to contribute to discussions and learnt a lot from others involved.
I’m looking forward to the final report and recommendations as I know from the interim findings that although there is some good practice there are also still far too many disabled people not able to access suitably adapted housing.
For further information about the Match Me project, contact:
Professor Isobel Anderson, University of Stirling at Isobel.anderson@stirling.ac.uk
July 2018
For further info please follow link to project page