Ebony Ambassadors CIC Mental Resilience Workshops on Zoom was a huge success and well attended. The FIRST SPEAKER was QUEEN ESTHER OSAKWE, A Community activist, founder of Life improvement consults, Miss Commonwealth for Africa 2021/2022 as well as Project Manager for Ebony Ambassadors (voluntary role). Esther’s history is one that will inspire you. She was born with Spina Bifida Occulta (hidden) which she only discovered when she was a teenager. She was sexually abuse at a young age and deeply wounded by the trauma she experienced so much so she rejected herself, her roots was severely depressed and very combative in nature. However, despite having survived sexual abuse, homelessness, domestic violence, shame and trauma that comes with having a child out of wedlock, and then a failed marriage, Esther proved what it means to be mentally resilient as she strived against all odds. She is currently dating and lives alone with her three daughters.
The SECOND SPEAKER was ANTONIA ADEBISI ADEBOWALE who is women development specialist, health champion for women, and a Mary Kay independent Consultant. She said during her speech that “Her past does not define who she is”. She reminds herself of who she is no matter what she goes through. She was originally diagnosed with Fibromyalgia, in 2015. When Antonia got diagnosed, she was scared. Fibromyalgia is an invisible and chronic illness that causes pain, fatigue and trouble in sleeping. It can cause depression, whole body is sensitive to pain, migraines and brain Fog. Actual cause of Fibromyalgia is not yet known and there isn’t a particular cure for it yet. Although there has been some link between Fibromyalgia and stress. We were encouraged to go to the doctor, to get checked if we notice any change in your body. Regular check-ups will help you to understand what is happening when you sense change in the body or experience symptoms you are not familiar with. She also spoke on symptoms to look out for during pre- Menopause and Menopause as well as what to do to help reduce the stress that come with it.
Did you know that, there are 1 billion disabled people living in the world today, and 12 million in the UK (18% of the population)? Statistics show that globally a disabled person is more likely to live in poverty and isolation and to be a victim of crime and discrimination. They are less likely to be in employment and have less access to education, transport, appropriate housing and the internet (Office of Disability Issues). The cost of bringing up a disabled child is three times greater than bringing up a non-disabled child (Scope).
Through the Roof is a registered charity that exists to ‘transform lives through Jesus with disabled people’. The charity’s name comes from the Bible account where some men break through the roof to help their disabled friend meet Jesus according to Luke 5. We recognise that every person is made in the image of God and has inherent value and worth, which includes people who have personal experience of disability.
“they went up on the roof and lowered the paralysed man on his mat through the tiles into the middle of the crowd, right in front of Jesus”-Luke 5
Many of our dedicated trustees, staff team, volunteers and donors have personal experience of disability and seek to make a positive difference to the lives of disabled people and their families by:
Providing life-changing opportunities for disabled people
Equipping the Christian community to fully involve disabled people
We achieve these aims by delivering three activity programmes:
According to the Lausanne Committee for World Evangelization, “90% – 95% of the world’s disabled people never hear the Gospel“. It is vitally important that our churches and ministries include them.
This ministry is the brainchild of Joni B. Eareckson Tada. She is an international author and speaker and the founder and Chief Executive of Joni and Friends International Disability Centre in the USA. We are privileged at Through the Roof to be an affiliate of JAF since being founded in 1997, after Joni’s European speaking tour in 1994.
At the age of 17 a diving accident left Joni quadriplegic and in a wheelchair. She founded Joni and Friends in 1979 to provide Christ-centred programmes to families with disabled children, as well as training to churches. Joni and Friends serves thousands of families with disabled children through Family Retreats, and has delivered over 100,000 wheelchairs and Bibles to disabled people in developing countries, as part of their Wheels for the World programme, which Through the Roof UK ‘imported’ in 1997. Joni’s lifelong passion is to bring the Gospel to the world’s one billion disabled people. What a great way to Deal with Disability in the Church!
Joni survived stage 3 breast cancer in 2010, yet keeps a very active ministry schedule. She and her husband Ken were married in 1982 and reside in California.
“Pressure ulcer prevention and management is an art as well as a science.
Different people with similar conditions need different care and that care should be holistic and tailored to the individual.”
Linda Nazarko OBE Consultant Nurse West London NHS Trust
Before the pandemic, I never got home visits, because I’m not bed-ridden. Previously, only people who are bed-ridden got home visits. Nowadays, I’ve been getting home visits from carers and district nurses, since the pandemic. I even received my Covid-19 vaccination, Astra Zeneca, by way of home visits.
“Pressure ulcers remain a concerning and mainly avoidable harm associated with healthcare delivery.”
National Pressure Ulcer Prevalence and Quality of Care Audit, November 2020
I became a PURSUN researcher during the pandemic in 2020. I used to attend annual Spina Bifida Clinics before the pandemic from 2013. However, since the pandemic, I’ve had no success in booking Spina Bifida Clinics, due to the surge and resurge of Covid-19 cases. In addition to the PURSUN research, the Spina Bifida Clinics also help me to improve the way that I take care of myself.
“The overall prevalence of PUs recorded, in terms or proportion of patients with 1 or more PUs, was 9.04%…The audit sought to understand not just the number of pressure ulcers that were present, but the care that was being delivered to the patients to prevent pressure ulcers occurring….Findings regarding implementation of preventative actions vary considerably between organisations and even between sites within organisations. Identification of these areas is important to the individual organisations as it allows them to focus quality improvement efforts into the areas that may make a difference.”
Stop the Pressure: National Pressure Ulcer Prevalence and Quality of Care Audit 2020
By December 2020, concerns about foot amputation were being raised by District Nurses, Tissue Viability Nurse and Podiatry. Since then, I’ve been wearing splints and callipers to protect my feet from any further damage. My feet have been x-rayed and scanned. I’ve also been prescribed antibiotics for my infected heel bone. Before the pandemic, I used to order and pick up my prescriptions from the Lloyds Pharmacy but ever since the pandemic they’ve been delivered to my house.
I received assistance from my sister with groceries because online shopping was fully booked during the first three months of the pandemic.
She stayed with me for three months but then had to leave after that because I was at risk of losing my Housing Benefit under assisted living, if she stayed any longer. Carers have been restricted on admission. There is more chance of emergency admission to the hospital.
“A phased approach will be used to develop Pressure Ulcer surveillance in the NHS.. Clinicians with responsibility for Pressure Ulcer reporting (most likely tissue viability nurses) will need to ensure their organisations are aware of and prepared for the new surveillance system. As part of this, systems will need to understand the difference between surveillance reporting and clinical incident reporting. The purpose of surveillance reporting is to capture the full incidence and prevalence of Pressure Ulcers across a system to drive quality improvement at organisational level. The purpose of clinical incident reporting is to support learning from mistakes so action can be taken to keep patients safe.”
A new national Pressure Ulcer Surveillance system using The Model Hospital System, November 2021
Pressure ulcer prevention in a pandemic taught me how to:
network with colleagues who are working to improve the measurement, reporting and prevention of pressure ulcers and harm
Reflect on national developments and learning including learning from Stop the Pressure: National Pressure Ulcer Prevalence and Quality of Care Audit
Learn from outstanding practice in pressure ulcer reporting
Implementing the new national Pressure Ulcer Surveillance system and learning from pilot sites
Change the way you view pressure ulcers – eliminating the focus on a voidability
Developing effective training and education of frontline staff that will empower frontline teams to take ownership for improving care processes and preventing pressure ulcers
Understand how you can reduce pressure ulcers and harm from pressure ulcers
Improve sustainability in the reduction of pressure ulcers during Covid-19
Understand plans for a new national pressure ulcer data system to support quality improvement
Understand the factors that increase the risk of pressure ulcer development, and explore effective risk assessment tools
Develop a better understanding of pressure ulcer prevention at the end of life
Reflect on a case study in reducing pressure ulcers in Covid-19 patients
Improve Nutrition and Hydration
Learn from Clinical Negligence claims related to pressure ulcers
Ensure you are up to date with the latest evidence and definitions
Self assess and reflect on your own practice
Supports CPD professional development and acts as revalidation evidence.
group approval for revalidation purposes
“We continue to have a challenge with patients developing pressure ulcers, and also a challenge with having some standardisation and consistency of care. There is considerable variation of about what happens in practice, in particular, underuse of evidence based care and overuse of ineffective interventions.”
Jacqui Fletcher OBE Clinical Lead, The National Wound Care Strategy Programme, November 2021
After 50 years of service, The North and West Yorkshire ASBAH had their first ever Community Conference. It was held on the 16th of October, at Hollins Hall Hotel, Golf and Country Club in Bradford. This was a day planned especially for people in the Spina Bifida and Hydrocephalus communities to come together and celebrate. There was lots of information on continence care, PIP and DLA form advice, education, and pressure ulcer prevention and cure.
During the first workshop, I joined the PURSUN Group from Leeds, to do a presentation on Pressure Ulcer Prevention and Cure. It was very good to meet Delia Muir and share my experiences on the subject.
Heather Chapman was at the ASBAH Charity conference, talking to wheelchair users about nutritional therapy by Wheely Therapy. Nutritional therapy is the application of nutrition science in the promotion of health, peak performance and individual care.
Nutritional therapy practitioners use a wide range of tools to assess and identify potential nutritional imbalances and understand how these may contribute to an individual’s symptoms and health concerns. This approach allows them to work with individuals to address nutritional balance and help support the body towards maintaining health.
Nutritional therapy is recognised as a complementary medicine. It is relevant both for individuals looking to enhance their health and wellbeing and for those with chronic conditions wishing to work with or ‘consult’ a nutritional therapist in collaboration with other suitably qualified healthcare professionals.
I also learned about SEND. This presentation workshop was about guidance on the special educational needs and disability system for children and young people aged 0 to 25, which started on 1 September 2014. The questionnaire that the presenter gave out, was a very good teaching tool.
Additionally, there were stalls and activities for the children. There were free prizes and charity merchandise on display as well. One of our sponsors, Irwin Mitchell, provided bags with freebies inside too. They also support the SHINE Charity.
Dr. Kate Wildig was the guest speaker who ended the whole conference. North and West Yorkshire ASBAH has a good support group. Use It!
Web accessibility, or e-Accessibility, is the inclusive practice of ensuring there are no barriers that prevent interaction with, or access to, websites on the World Wide Web by people with physical disabilities, situational disabilities, and socio-economic restrictions on bandwidth and speed.
Misconception #1: web accessibility is about disability.
It’s not. Web accessibility is about universality. It’s about making something that can be used by as many people as possible. Different environments, different devices, elderly, different cultural backgrounds, non-English speakers and impaired abilities. 11.2 million people in the UK, are registered as having a disability. Eighty-three percent of disabled people acquire a disability during their working life.
Disabled people in the UK are estimated to have the spending power of at least eighty billion per year. The majority of disabilities are not visible. Less than eight percent of disabled people use a wheelchair. We need to make our websites easy to use for everyone, including the hearing impaired, those with limited mobility, those with reading difficulties and anyone using hand-held devices.
So why do we do it?
By making your content more accessible more people in more locations can read your information and they will understand it more easily.
After all, you want everyone to get your message, right?
Accessibility is also a legal requirement under the Equality Act of 2010.
Misconception #2: web accessibility is not my problem.
It is. Web accessibility is everyone’s responsibility. We’re all in this together what you do makes a difference.
So what do people need?
People need information that is easy to read that works on different devices and that is easy to navigate. It also needs good design and colour contrast, images and graphs that are described well, has video captions or transcriptions, has documents and attachments in a format that can be used by everyone everywhere. Remember what you do at the start makes it easier at the end and your content gets published faster.
Manningham Housing Association has a new project called Building Bridges Bradford Project of which aims to bring diverse groups and voices together during the Pandemic. Besides building the community, the project aims to tackle mental health. As has been highlighted by the experts and in the media, with the pandemic, some cases of mental health have been raised.
The new project by the Association therefore aims to build bridges between its residents in the community in various ways.
In the next year, between January to March, we would be delighted if you could deliver a confidence building/ awareness workshop on the disabled group.
Our aim to activate community conversations and bring different communities together. For you, how you deliver the session/s is up to you (to be discussed).
Information useful for the project:
We would like course structures between 2-8 weeks, a session each week/ fortnightly/monthly.
They can run between 60 mins-2 hours a session (2 hours however might be too long. We recommend 1hr sessions max to ensure active engagement and participation. You might however have other ideas-open to hear about them).
Suitability of time depends on your structure and audience you wish to target (family programmes for instance may happen after school or on weekends in the afternoon).
Regards to the number of participants expected to attend, this depends on the audience interested in this session and themes that you are keen to offer. For example, you could incorporate a number of 121 sessions to specifically positively impact some individuals who may best benefit from this. You can also run group sessions.
Age range: any (might depend on your offering/s). We would, however, like to impact all age groups for greater impact. Maybe you might like to break down activities by age.
Ethnicities: All (we aim to inspire community integration, conversations& learning)
As you may have gathered, we are very flexible on your delivery. Our main aim is to positively impact as many people as possible. It’s however not about numbers, you might propose to work with few individuals of whom you can truly positively impact…impact is better than numbers.
As of Covid-19 , all sessions will run online ( over Zoom/other) unless Covid-19 Tiers allow otherwise.
If you have any more queries, please send these or send a time of your availability so that we can discuss this further.
When buying a new wheelchair, there are many types to consider. Wheelchair assessments can be quite stressful when applying for a new wheelchair as frequent as every four years. It makes it worse when able bodied assessors are trying to tell what you need and don’t need. In fact the only reason why I got one in the first place is because the college I attended, made it mandatory for me to have one in order to study there. I was told that Bradford was too hilly so I got a motorised wheelchair to get through college. This is one of the many times that a wheelchair user has to advocate for themselves.
One of the most popular varieties is an electric wheelchair. Before you commit to this purchase, make sure it is the right option for you. Here are some pros and cons to help you decide.
PROS
Pro: They are more comfortable
One of the top reasons people choose an electric wheelchair over a manual one is that they tend to be more comfortable. These chairs are often custom-made to fit the person’s size and body shape. You will find that the seat of the chair is cushioned to provide extra support and has a headrest at just the right height. It might also have additional back support. Also, the pads of the seat sit more securely than manual wheelchair seat pads. In general, electric wheelchairs will have more custom options for comfort than the manual wheelchairs have.
Pro: There are a lot of great features
You also have a wider range of features when you choose an electric wheelchair. Not only is the wheelchair motorized so you can go farther faster, but you can go in reverse without too much effort. You can also add a lot of different features since the larger wheelchairs provide ample space for extras. For example, if you don’t have good use of your arms and hands, you can get an electric wheelchair that moves when you change your head positions or get a voice-controlled wheelchair. Some models also add built-in heat just in case you are out on a cold day. You can get one with a seat that rises to help you get items on a higher shelf. This feature encourages pressure relief and independence. The newer models even have extra security features to prevent it from being stolen.
Pro: You have more independence
Perhaps most of all, you have more independence with an electric wheelchair. As someone who is a wheelchair user, it can be hard requiring someone to move the wheelchair for you, even when you do not have the energy to use your arms for turning the wheels of a manual chair. If you want to be able to get around freely without someone else’s help, an electric wheelchair is your best option.
CONS
Con: The wheelchair is large and heavy
On the downside, electric wheelchairs are large and bulky, not to mention heavy. Nobody will be able to lift this chair on their own to get it into a vehicle or into your home. You must have a proper ramp or a wheelchair-friendly vehicle. Manual wheelchairs are light enough to lift and fold to fit just about anywhere.
Con: They are more expensive
Naturally, electric wheelchairs are considerably more expensive. You are paying for all those extra features, the motorized function, and the overall size of the new chair. It is possible that your insurance policy will cover some of the costs, so you should check with them before you decide not to get this type of wheelchair. Charities, government and personal fundraisers may help but there’s no guarantee they will cover the costs.
Con: It impedes on your cardiovascular strength.
Upper body strength is important for a wheelchair user, especially when you have little to no use of your lower extremities.
Con: It is hazardous to use them in rain, ice, mud, sand and snow.
The traction from the wheels gets stuck in ice, mud, sand and snow. It can also be slippery when it rains. It is also tricky to charge them in a power cut.
A.R.T is somewhat similar to massage therapy in that a therapist will use their hands to manipulate soft tissues. During A.R.T, however, the patient or the therapist will actively flex and extend different muscle groups during manual therapy. This active motion improves circulation and helps to break down scar tissue. A.R.T can help people with:
Plantar fasciitis
Tennis elbow
Shin splints
Carpal tunnel
Neck pain
Back pain
One study found that A.R.T was helpful for people with neck pain as it improved range of motion and the pressure pain threshold score.
Graston and Astym Therapy
In Traditional Chinese Medicine, there is a therapy called Gua sha, which is where a therapist uses a tool, such as a smooth stone, to scrape the skin. Gua sha improves circulation and helps to break down scar tissue. Many therapists have taken the gua sha concept and applied it to different physical therapy techniques, such as the Graston technique and the Astym technique.
Therapists that follow Graston and Astym protocols use plastic and/or metal tools to rub down soft tissues instead of their hands. If you have deeper areas of scar tissue that can’t be resolved by manual therapy, then these types of tools can be beneficial since the therapist can apply deeper pressure. These tools also come in a variety of shapes, which can help therapists pinpoint difficult-to-reach muscle groups, like the iliopsoas. Lastly, these tools help stimulate new cell growth in soft tissues and help the body resorb scar tissue.
Dry Needling
Dry needling is a therapy where practitioners use thin needles to break up scar tissue and reduce inflammation in trigger points. Trigger points are tight muscle fibers that can form from soft tissue trauma, muscle imbalances, and repetitive motions.
Some people may confuse dry needling with acupuncture treatments. While dry needling looks like acupuncture, Healthline points out some distinct differences.
For example, acupuncture is rooted in T.C.M and is meant to improve energy flow in the body; dry needling’s main focus is on correcting overly tight muscles with scar tissue. If your soft tissue injury has caused muscle spasms, then dry needling may be a good option. Some people’s soft tissue injuries may cause extreme sensitivity to touch, so dry needling may be a better option for these patients instead of A.R.T or Graston/Astym therapy.
I’m glad to know this because I only have a Tissue Viability Nurse and none of these techniques were suggested to me. I intend on trying out these new techniques soon.
Between 2008 and 2010, PPI was limited by the ability to recruit service users. Following the establishment of PURSUN UK in late 2010, involvement activities increased across the programme. Furthermore, the methodology and focus of each work package have guided the nature of involvement.
The Pressure Ulcer Research Service User Network UK (www.pursun.org.uk) has a minimum of two management meetings a year at which a core group of the most active members consider the direction of the network, the terms of reference, recruitment, the website and other network materials. Research involvement opportunities are sent out by way of the mailing list, as they arise. For example invitations to help interpret data, become co-authors or input into the study methods.
All members of PURSUN UK are prepared for involvement through a minimum of one induction meeting with the PPI officer (either in person or by telephone). During this meeting, service users are encouraged to discuss the skills and experience that they bring to the group, as well as any support that they may need.
The value of the Pressure Ulcer Research Service User Network UK to the service users involved
As a PURSUN researcher, I have definitely benefitted from the virtual conferences, Zoom calls and emails about Pressure Ulcer Prevention at Home, pressure relief and an app to help people with general healthcare. I’ll also be joining a focus group and I’ll be partly responsible for creating an app to ‘stop the pressure’. Delia Muir and Holly Schofield take turns leading the Zoom calls. I started my role as a PURSUN researcher in 2020, and I believe that Bermuda needs to be included in the network and the impact that it is making. Maybe I should start a sister branch there.
Wider impact of the Pressure Ulcer Research Service User Network UK
In addition to PPI throughout the programme, PURSUN UK has begun to impact the wider tissue viability and PPI communities. For example, members of PURSUN UK have been invited to speak about their experiences at several events.
Locally, this has included training for tissue viability link nurses, presenting to PURPOSE principal investigators, speaking at the launch of the NIHR Bradford Wound Prevention and Treatment Healthcare Technology Co-operative and working with medical students. Nationally, members have presented at the Tissue Viability Society conference, tissue viability education events and the INVOLVE (a national PPI advisory group) conference.
They have developed an effective model for presenting service users’ experiences in which the PPI officer, interviews a member of PURSUN UK in front of a live audience. This provides an alternative to a traditional presentation for people who do not feel confident presenting personal experiences in that way. This model has received very positive feedback from both audiences and the service users involved. They have found that real-life stories are extremely powerful and can create a common focus for professionals from a variety of backgrounds.
Collaboration with industry
Medical devices also play an important role in pressure ulcer prevention and treatment. With this in mind, PURSUN UK has collaborated with industry partners on projects such as education days and product development workshops. This collaboration has helped to diversify the involvement opportunities offered to PURSUN UK members and has been useful in terms of members’ personal development, as it has given people an insight into another aspect of tissue viability research. This work has also generated some funds for PURSUN UK, moving the network towards a sustainable model post PURPOSE.
Developing and sharing patient and public involvement methods
the use of role play and video to facilitate PPI in the interpretation of data from the severe pressure ulcer study
the adaptation of the Patient Learning Journey model for use in a research context
the use of a live interview model as an alternative to traditional presentations
the addition of a service user group to the consensus methodology used in the risk assessment study
individualised support for steering committee members, including one-to-one debriefs with the PPI officer
the integration of service user narratives into the dissemination of the quantitative pain studies.
Further developments include a completely new service user network, which has given them the opportunity to be creative in their approach and develop innovative involvement models. These models have been shared with the UK PPI community. The PPI model used as part of the severe pressure ulcer study, has been presented at three national conferences (Involving People Wales and Tissue Viability Society) and forms part of an INVOLVE video resource on PPI in data interpretation and analysis [see www.invo.org.uk/resource-centre/conference/involve-conference-gallery/ (accessed 20 February 2015)].
A video about the Severe Pressure Ulcer PPI event was also made by PURSUN UK and has been widely disseminated online [see https://youtu.be/bgg6zkbILrg (accessed 21st July 2015)]. The novel approach of using the Patient Learning Journey as a model for service users contributing to research rather than health education has also been included as a case study in the INVOLVE training and development guidelines [see www.invo.org.uk/training-case-study-13-2/ (accessed 20 February 2015)].
Equality Together Bradford is a local user-led organisation for disabled people, their carers and families. Their services are currently available to people who live in the Bradford Metropolitan District. Some of their services include Self and Group Advocacy.
Non Statutory Self & Group Advocacy is about taking control of decisions about yourself and telling others what you want.
At Equality Together, their aim is to help you speak up and have your voice heard. They have a few ways of doing this.
One way of doing this is through the Disabled People’s Action Group. The Disabled People’s Action Group (DPAG) is a new group of people with physical disabilities, sensory impairments, mental health issues, learning disabilities and long-term illness.
Their aim is to build on the work done by the Disabled People’s Forum, focusing on campaigning and highlighting issues concerning people with disabilities.
The logo is a dark grey square with ‘Disabled People’s Action Group’ in white text down the left side. A large orange arrow symbol is on the right, pointing right. Bradford and District is in dark grey text on an orange rectangle at the bottom.
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