In light of the recent events in Uvalde, and after seeing a post on Instagram on the subject, I was compelled to write my thoughts about it, because it made me really think.
Imagine being an amputee, running for your life, trying to escape from a gunman?
What about the blind?
What if the blind had a guide dog and the guide dog got shot?
What if the venue is no where near wheelchair accessible?
Do we need to manufacture bulletproof wheelchairs nowadays?
When I was in high school, in Bermuda, we had lockdowns in the midst of school fights. But according to my research, Bermuda has nothing in place.
As a wheelchair user, I was given a Personal Emergency Evacuation Plan (P.E.E.P) in University for fire drills, in the UK. I’ve also had an evacuation plan while on a job placement in England, which was successful.
It looks like America has something in place, but is this effective? Everyone’s right to life shall be protected by law. No one shall be deprived of his life intentionally save in the execution of a sentence of a court following his conviction of a crime for which the penalty is provided by law.
Neglecting to make reasonable adjustments goes against ones’ ‘right to life’. Not much seems to be in place by way of safety legislation. However, as an alternative, there is Martial Arts and carrying a gun for self-defence.
The Disabled People’s Forum in Bradford has officially relaunched. This is a forum which allows disabled people to have their voices heard. The forum also has a Steering Group, which I am a member of. The forum and Steering Group exist in conjunction with the Equality Together Bradford organisation.This comes after the government released its Disability Strategy, and the Bradford and District Disabled People’s Forum wants disabled people to have their say on the governments priorities, what they have missed out and any concerns they have.
Constitution
AIMS/OBJECTS 1. To link disabled people and disability groups together to ensure that they have a stronger voice in the district. 2. The forum is led by disabled people, of disabled people, for disabled people. 3. To establish an inclusive partnership of groups bringing together representation from the widest definition of disability including people who are physically disabled, have a sensory impairment, a learning disability, who have experienced a mental health problem and people who have a long-term illness and/or limiting condition. 4. To publicise the Forum and establish accessible ways of communicating, including a website, that will allow groups to share and exchange information and ideas. 5. To seek to ensure that disabled people are represented on a wide range of strategic, ‘decision making’ bodies across the district. 6. To ensure that disabled people who are ‘experts by personal experience’ are able to have a say in the development of services. 7. To create a district where all disabled people can participate fully as equal citizens.
POWERS 1. To raise and hold funds. 2. To obtain or lease equipment and premises. 3. To employ staff and recruit voluntary workers. 4. To work with other organisations. 5. To do any other such lawful things as are necessary to achieve the aims.
MEMBERSHIP Membership is open to:
All groups of disabled people and individual disabled people who live or are based in the Bradford District and who support the aims of the Forum.
Who have paid any annual subscription laid down from time to time by the Management Committee. Membership is currently free. Additionally:
Applications shall be made in to the Management Committee
Groups will nominate a named person to be their representative in all dealings with the Organisation
Every member shall have one vote
Attendees shall declare at the beginning of the meeting whether they are attending as an individual or a representative.
It may be that groups will have more than one representative at forum meetings – should a vote be taken groups will have only one vote,
The Secretary shall keep an up-to-date record of both individual and group membership
Termination of Membership
Membership may be terminated by the Management Committee on the grounds of a member or group acting against the objects of the Organisation or bringing the Organisation into disrepute.
Annual General Meeting
An annual general meeting shall be held within 15 months of the previous Annual General Meeting, the date, time and place to be determined by the committee.
Each annual general meeting shall be convened by the Secretary who shall notify all members in writing at least 21 days before the date of that meeting.
Any motion for consideration at the annual general meeting must be in the Secretary’s hands no later than 14 days prior to the date of the meeting.
The business of the annual general meeting shall include:
adoption of annual report and accounts
election of the committee and its officers
appointment of an independent examiner
Nominations for the committee should be submitted to the Secretary 24 hours before the annual general meeting. If there are more nominations than there are vacancies to be filled, an election will be held.
Every member shall be entitled to one vote.
Members unable to attend the Annual General Meeting
I learned alot at this year’s Healthcare UK Conference. It started at 10:00 with the Chair’s Welcome and Introduction. Then at 10:20, I learned about The New National Pressure Ulcer Surveillance System. At 11:00, they discussed Supporting Learning with frontline staff in pressure ulcer prevention. By 11:30, I had a Comfort Break and Virtual Networking. By 11:45, I was learning about Pressure Ulcer Assessment, Reporting & Management. At 12:15, there was a presentation about Case studies in Small Breakout Groups. During the 12:35 session, I was Addressing Diversity in Pressure Ulcer Prevention.
At midday by 13:00, I had a Lunch Break and Virtual Networking. Again, at 15:30, I had another Comfort Break and Virtual Networking. At 15:45, I learned about Nutritional Assessment and Pressure Ulcers. And to end the conference at 16:15, there were Question and answers. This included a survey to grade each session.
National Institute for Health and Care Excellence (NICE)- They provide national guidance and advice to improve health and social care. https://www.nice.org.uk/.
National Wound Care Strategy Programme- The National Wound Care Strategy programme (NWCSP) seeks to improve care for people with wounds. http://www.nationalwoundcarestrategy.net.
Model Health System- The Model Health System is a data-driven improvement tool that supports health and care systems to improve patient outcomes and population health. It provides benchmarked insights across the quality of care, productivity and organisational culture to identify opportunities for improvement. The Model Health System incorporates the Model Hospital, which provides hospital provider-level benchmarking. Access to the Model Health System is currently available for all NHS commissioners and providers in England. http://www.model.nhs.uk
My Improvement Network are committed to investing in education for health care professionals and are proud supporters of RCN Projects. http://myimprovementnetwork.com.
Now that I’m a PURSUN Researcher, I’ve been studying pressure ulcers, prevention and cures. During my research, I’ve noticed we’ve discussed pressure points, mattresses, dieting, hygiene and PICOs, but nobody said anything about transferring techniques and equipment.
Ever since my journey to fight against pressure ulcers has started, my transferring techniques have changed. While living in Bermuda, I was taught to ‘bum shuffle’ from, let’s say, my wheelchair to the bed or a chair. However, I was told that this is wrong. Climbing in and out of bed can also be risky, especially when barefoot. As a result, my transferring techniques have changed since then.
Nowadays to prevent pressure ulcers, it has been suggested that I use a banana board or a sliding sheet from BACES in Bradford.
The Bradford and Airedale Community Equipment Service (BACES) is a partnership between Bradford Social Services and the NHS in Bradford and Airedale.
This service has been set up to provide you and your family with a wide range of equipment, to help you live more independently.
Banana Transfer Board
This Banana Transfer Board is designed to assist in the seated transfer of a patient between two surfaces.
Transfers from Bed to wheelchair, wheelchair to Chair, wheelchair to toilet and the like, are just some of the uses the board can be put to. It was made from an extremely durable and hard-wearing materials, the transfer board is curved to facilitate positioning and features anti-slip pads on the underside for safer location and a convenient carrying handle. The board has a maximum user weight of 200 kgs (over 30 Stone) and can be easily cleaned with soapy water/alcohol/disinfectant and a non-abrasive cloth. I’ve tried this but it’s too hard on the buttocks and doesn’t help with shearing pressure.
Hoists Hoists provide support for lifting and moving those in need from one place to another without causing undue stress or discomfort. They are used for moving from bed into a wheelchair, or vice versa, the range can carry a variety of weights and are good for the bathroom, bedroom, and all points in between. Part of the medical supplies and aids range, they also offer battery monitors, chargers, and slings for your hoist so you can be fully prepared to face the day. There are also travel cases available if you need to go somewhere and take your hoist with you, and specialist hoists for wet environments like the bathroom.
Lateral Transfer Slide Board
This is designed for use with the Transfer Glide Sheet, this Lateral Transfer Slide enables easy transfers between beds, trolleys, tables and treatment couches.
It works by creating a stable, slip-resistant platform between the two points and by providing a smooth top surface over which the patient can easily be moved without the need for lifting. User comfort is enhanced by the slide’s tapered edges, which pass easily under the body, whilst the handles around the perimeter provide plenty of convenient places to grip and hold it steady. I’ve tried this but it’s risky and slightly flimsy.
All our equipment is clean and maintained to the highest standards.
What equipment do we offer?
Equipment to help with:
moving, handling and walking
bathing, showering and toileting
household and kitchen tasks
nursing tasks
Commodes can also be used for pressure relief.
Proper Transfer Techniques
The push-up – Use the wheelchair armrests (or wheels if you don’t have any) to push up out of the seat with your arms. You should straighten your arms fully so that your elbows are locked. Then ensure that the buttocks and lower back are fully out of the seat.
The forward lean – Lean forward as far as you can – imagine that you are trying to rest your chest on your knees! This movement is particularly good for relieving pressure on the coccyx.
Leaning side-to-side – Whilst seated, shift your body weight onto your left side to lift your right side out of your seat. Then repeat on the other side. Like the push-up, this movement relieves pressure from the buttocks and the lower back. However, because this is a more subtle movement it’s great to perform whilst you’re out and about!
Why is proper transfer technique so important?
Correct technique should minimise risk of skin injuries. Incorrect technique can increase your risk of falls during transfers. Managing the injuries which result from poor technique can be difficult and lengthy. Prevention is far superior to cure!
“Stop the Pressure” is an initiative from NHS Midlands and East, which has been rolled out across the NHS. The campaign used data collected by NHS Safety Thermometer and worked to raise awareness and improve monitoring and management of patients at risk of damage.
They found that the number of new pressure ulcers was reduced by 50% in one year.
A key part of the success of the campaign was attributed to a preventive strategy with a number of elements, referred to as the SSKIN bundle, which was communicated with great clarity.
The acronym SSKIN contains five key steps:
• Surface – make sure patients have the right support • Skin inspection – early inspection means early detection • Keep patients moving • Incontinence/moisture – patients need to be kept clean and dry • Nutrition/hydration – make sure patients have the right diet and plenty of fluids
As part of a worldwide effort to reduce the prevalence of pressure damage, November 19th, 2020, saw the international Stop Pressure Ulcer Day. This year it will be celebrated on March 24, 2022, through a Virtual Conference.
Inclusive communication is about how to produce publications that include, accurately portray, and are accessible to disabled people.
This guidance aims to help you to:
communicate using inclusive language and know which words to use and avoid when writing about disability
include disabled people in your communications and campaigns and make sure that they’re portrayed positively and realistically
make sure your communications are accessible
choose and use appropriate communication channels to reach disabled people
There are over 11 million people with a long term illness, impairment or disability in Great Britain. Communicators must be confident their messages will reach everyone, including disabled people. This can be done by ensuring all communications are inclusive and accessible.
The Office for Disability Issues wrote this guidance for government communicators but it may also be useful to others. This is predominantly used in employment, but has also been used in disability sport like the Paralympic Games.
For example, when I represented Bermuda at the London 2012 Paralympic Games as a reporter, we were expected to use inclusive communication. We we’re expected to indicate the difference between a Paralympian and a Para-athlete.
As per the official IPC website and catalogue on terminologies for para sportspersons, the Preferred term is Para Athlete. If however a person does compete in the Paralympics, then they become a Paralympian. If a person competes in the Paralympics once, then they will always be called a Paralympian.
We weren’t allowed to use the term ‘disabled’, especially when writing articles and headlines. We say ‘person with disabilities’ instead of ‘disabled person’.
This is in place to target labelling and stereotyping. It also gets rid of the stigma centred around disability.
The definition of disability under the Equality Act 2010 is absolute (and protects an individual from discrimination) if you have a physical or mental impairment that has a ‘substantial’ and ‘long-term’ negative effect on your ability to do general daily activities.
The UK’s failure to incorporate the UNCRPD into domestic law, reinforces the regressive medical model of disability. Due to the dualist nature of the British Constitution, and since the Convention has not been enacted into domestic law by an Act of Parliament, disabled claimants cannot rely on it in the British Courts. Therefore, disabled people must rely on the UK’s anti-discrimination legislation, such as the Equality Act 2010, before attempting to convince courts to use the CRPD in interpreting relevant key concepts.
The Social Approach to Disability
The Social Approach to Disability includes people’s views, opinions and attitudes. It has been the prominent approach to disability over the last 30+ years.
It was developed by disabled people based on real life experience of discrimination, inclusion and challenging disabling barriers. It is outward looking and focused on the things in society that can be changed or improved, like, the environment, information, communications and people’s attitudes.
It’s a problem solving approach which gives disabled people greater control over vital, even basic decisions, like, from what time to get out of bed on a morning to employability and education choices.
This approach enables you to better understand how reasonable adjustments can be implemented. It also focuses on the things you can influence or change and promotes valued skills.
Why is the wheelchair the only emblem used to represent disability?
How does this approach disable you?
Disability is seen as a social construct not a medical one. We’re vulnerable to people’s perceptions, mindsets, assumptions, behaviours, attitudes, views, prejudices, labels, stereotypes, and opinions.
Disabled people aren’t seen as equal. We’re seen as inferior. Our limitations are amplified over our voices.
Disability Reframed vs. Disability Debunked
Disability Debunked is about dismantling stereotypes surrounding the disabled and look at our world through a disability lens.
For example, DEBUNK DISABILITY: ADA30. Stop the messaging that individuals are broken, in need of healing, not whole, or sick.
Disability Reframed is a need for societal re-education on disability. It combines self-learning with open dialogue and conversation to create a space where decades-old attitudes towards disability, disabled lives, and disabled people are dismantled, examined, and then thoughtfully rebuilt. In other words, we are redefining disability.
Disability discrimination occurs when an employer or other entity covered by the Americans with Disabilities Act, as amended, or the Rehabilitation Act, as amended, treats a qualified individual with a disability who is an employee or applicant unfavourably because she has a disability. Disability discrimination also occurs if an employer fails to provide reasonable accommodations to job applicants and employees who need them to apply for a job, do a job, or enjoy equal benefits and privileges of employment, unless doing so would cause significant difficulty or expense for the employer; when an employer discriminates against an employee due to an association with an individual with a disability; and when an employer harasses or fails to stop the harassment of an employee on the basis of a disability.
The development of disability discrimination laws signified the adoption of a public policy committed to the removal of a broad range of impediments to the integration of people with disabilities into society. This is what disables you!
I never knew what pressure ulcers were until I got one for almost all pressure points. I am currently facing possible amputation. If this happens what am I gonna do?
24 hour support will be needed. I don’t like the idea of amputation. The problem is, I’ve been having pressure ulcers, foot x-rays and MRIs/CTIs. I’ve had a series of meetings about my right foot. I’ve got antibiotics to take. Blood sugars, protein levels, blood circulation, feet pulses and kidneys all contribute to the feet. I also got to see photos from MRI scans. I got permission to take photos of them. The heel bone is infected. I know what it’s like to be cured of pressure ulcers, but they keep returning, especially on my feet. What’s going on?
As a result, I have chosen to join the fight against pressure ulcers.
During my first year of college, the pressure ulcers started. When this happened, I got a social worker, carers, District Nurses from the Chelsea and Westminster Hospital in London while studying. I also have a Tissue Viability Nurse and a Podiatrist. Before the pandemic, I visited the doctor’s office for appointments. Now I get home visits.
One day, the wound on my right foot seemed smelly to the nurse as if it’s infected so I was on antibiotics for 7 days. Sensation and movement is limited from the ankles down as a result of lower spine damage due to Spina Bifida. Pressure ulcers can also be caused by bed mattresses or wheelchairs. Bermuda has a lack of resources and a lack of information. There are no Spina Bifida clinics/specialists in Bermuda. Lived with parents. Swimming in the salt ocean in Bermuda beaches has contributed to the healing process. Before England and College, I had no pressure ulcers.
Podiatry and District Nurses tend to clash from time to time. District Nurses visit three times a week while Podiatry only visited once. District Nurses know how to dress my foot correctly. Which one is more important?
Pressure Sores (also called bedsores or decubitus ulcers) Pressure sores, also called bedsores or decubitus ulcers, are areas of broken skin and underlying tissues that have been damaged by pressure. Pressure (such as sitting in the same position for too long) restricts blood being supplied to the area, so the tissues become deprived of oxygen and toxins build up, which causes the skin and tissue cells to die. People with Spina Bifida may not feel this damage beginning because of reduced feeling in parts of their body.
PURSUN GROUP IN LEEDS Prevention is better than cure! You must have tough skin. Pay attention to pressure points. Additionally, make sure you have good quality, well-fitting shoes that do not cause red marks on your feet. You may want to ask your GP to refer you to an orthotics centre to have shoes made especially for you. The styles are much better than they used to be!
Make sure you have a well-fitting wheelchair with a pressure-relieving/ reducing cushion. Pressure mapping in the wheelchair cushion. Always use your footplates to support your feet and stop your legs from ‘hanging down’, which is bad for the circulation. Ergonomic Assessment required.
Feet must be elevated above the head, especially in bed, for good circulation. Check your wheelchair does not leave red marks on your legs or body. When you see a reddened area of skin, tell your GP straightaway. Don’t wait to see if it improves on its own. If left untreated they can take a lot longer to heal. If you do have a skin breakdown, make sure your health professionals look at the reasons why it happened, and don’t just apply dressings. Change your sitting position frequently throughout the day and have a chair at home to sit in other than your wheelchair. Try to spend part of each day off your bottom. Check your skin regularly for pressure sores using a mirror to see areas of your body you cannot see otherwise. Pay particular attention to areas of skin where you have little or no feeling.
Massage is now advised against as recent evidence suggests that it is not beneficial for pressure areas and may be harmful.
Hygiene: Access to Showering facilities instead of bathing facilities in England. District nurses clean and dress wound 3x a week maximum, in addition to personal daily showering. Skin care included Aqueous cream. No scented creams are allowed on broken skin. I shower daily but due to pressure ulcers and a PICO, I also use a LIMBO to cover my damaged foot to keep it clean and dry.
Why does immobility cause pressure ulcers? Poor mobility/immobility: Patients who are unable to independently change position are at increased risk of developing a pressure ulcer, due to pressure exerted over bony body parts which results in reduced blood flow to the tissues and subsequent hypoxia.
CURE
I also use a Profile bed, I prefer loose clothing vs tight clothing like dresses or sweat suits. Compression socks/stockings/orthopaedic shoes/socks because sensation and movement is limited from my ankles down.
Incontinence can also contribute to pressure ulcers. Pressure ulcers must be kept clean and dry. Previously during the first four months of my first year in college, I skipped meals for the sake of my studies. I was also given a Dietician who put me on a high protein diet. My meal plan looks something like this:
Unplanned weight loss is a major risk factor for malnutrition and pressure ulcer development. Suboptimal nutrition interferes with the function of the immune system, collagen synthesis, and tensile strength.
Pressure Ulcer Prevention at Home
Treat your skin gently to help prevent pressure ulcers.
When washing, use a soft sponge or cloth.
Use moisturizing cream and skin protectants on your skin every day.
Clean and dry areas underneath your breasts and in your groin.
All throughout life, I’ve been encouraged and trained to be independent despite being diagnosed with Spina Bifida and Hydrocephalus at birth. Independence is important to me. This pandemic has actually caused me to live at a higher level of independence, especially, in relation to self care and health care.
Some wheelchair users prefer their own independence because receiving help makes them feel more disabled than they already are. It’s partly about dignity and respect. Other times it can be about disability pride. Their disability pride can be fuelled by entitlement, and identity. Wheelchair accessibility is one right that wheelchair users are entitled to.
Wheelchair inaccessibility causes one to be co-dependent. I experienced this in Bermuda. I also cannot claim benefits at all in addition to relying on family. Fortunately, wheelchair accessibility enhanced my Independent Living. I experienced this in England. Wheelchair accessibility causes one to be independent because you can access things without relying on someone. I also cannot claim benefits while living with family.
For example, when I was eight years old, I got my first manual wheelchair. From that age, I was always encouraged to push myself instead of allowing anyone to push me. This reinforced my independence.
Another level of independence that I’ve experienced was high school. During my first year of high school, the building was nowhere near wheelchair accessible so I required hands on support. However, while in my second year of high school, it was taken away from me. I did everything on my own without a Paraeducator, because, when I transferred to the new wheelchair accessible building, it was assumed that I no longer needed support. This wasn’t a smart move because I struggled under pressure, failed two subjects and had to do Summer School to catch up on credits. This also affected my G.P.A when I graduated. This was quite stressful and frustrating for me. I cried and complained to my parents so they met with the school to sort it it out.
However, it made me more self aware and helped me improve time management. Having an extra pair of hands helped me to navigate the school faster.
The next example was during the first semester of my first year in college. I took classes without learning support for fear that I’d have to pay for it, because I was being treated as an international student instead of a home student. Before my January exams, lecturers raised concerns about my grades and overall progress. When this was realised, I was given assistance from learning support without paying for it. But I must admit, that it made me more organised and it improved my study skills and habit.
Another aspect of independence that I learned, especially in college, is speaking up for myself while living independently. I had to move to another country to further my studies due to wheelchair accessibility issues.
During my first year of college, meeting with the learning support department was very frustrating. Communication between my lecturers and the learning support department always seemed disconnected. The week or day before my exams, lecturers always asked me what was the learning support plan for my exams. This stressed me out because after every meeting, they assured me that they would share our discussion with the staff members. This almost never happened and I found myself repeating all of the information just to ensure my needs were met. This took away from my personal study time.
However, all of these experiences taught me how to advocate for myself and cultivated the desire to advocate for others with disabilities.
Unfortunately, due to struggling to balance studies, personal care and health I got help from disability services. This came in the form of a social worker, carers, district nurses, and a GP, after my first year of college. I received these services because I started losing weight and getting pressure ulcers. This means I had to rely on people more to help me cope with the demands of life. They helped me with cooking, cleaning, laundry and sometimes shopping. It helped me to set my priorities straight and enhanced my independence.
Independence means taking ownership, taking responsibility, and taking action. It’s all part of maturity and putting on my ‘big girl panties.’ This is what independence means to me!
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