The View from Where I Sit

Tag: disability awareness

  • Stop the Pressure Campaign

    “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.

    https://www.independentliving.co.uk/advice/prevent-pressure-ulcers/#stop

    www.healthcareconferencesuk.co.uk

    www.socialcareconferences.co.uk

    www.facebook.com/HealthcareConferencesUK

    https://www.healthcareconferencesuk.co.uk/conferences-masterclasses/pressure-ulcer-prevention

    Pressure-Ulcer-March-2022Download

  • Inclusive Communication at the Paralympic Games

    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.

    https://www.facebook.com/bdaparaassoc

    http://www.paralympic.org

    /https://thebridge.in/tokyo-2020-paralympics/paralympians-paralympics-tokyo-term-olympian-24595

    https://www.gov.uk/government/collections/disability-confident-campaign#become-a-disability-confident-employer

  • Let’s Work Together to Stop The Pressure!!!

    https://www.shasbah.co.uk/spina-bifida/spina-bifida-pressure-ulcers/?fbclid=IwAR1g0wzmeyBLMxAs78HfH9CZrUD0A4lf6C52TP3w-O3EMutQuLDXv1qBfMk


    MY PRESSURE ULCER JOURNEY

    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.

    Pressure wounds usually take 3 months to heal. My wheelchair has a ROHO Cushion with air pockets. Now my footrests have air pockets. It’s ultimately an airbag under my feet. https://www.permobil.com/en-us/products?category=SeatAndPositioning

    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.

    https://www.nursingtimes.net/clinical-archive/tissue-viability/does-massage-help-to-prevent-pressure-ulcers-15-08-2011/https://www.nursingtimes.net/clinical-archive/tissue-viability/does-massage-help-to-prevent-pressure-ulcers-15-08-2011/


    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:


    Breakfast
    Mid-morning snack
    Lunch
    Mid-afternoon snack
    Dinner
    Dessert

    Why does malnutrition cause pressure ulcers?

    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.
    • DO NOT use talc powder or strong soaps.
    • Try not to take a bath or shower every day

    https://tvs.org.uk/stop-pressure/

    https://www.shinecharity.org.uk/self-care/skin-and-tissue#Sores

    https://nhs.stopthepressure.co.uk/patients.html

    https://medicinehealth.leeds.ac.uk/leeds-institute-clinical-trials-research

    Click to access SHASBAH-news-summer-2021.pdf

    Every day has to be a STOP THE PRESSURE day when you are a person living with skin vulnerability or reduced mobility.

    LET’S WORK TOGETHER TO STOP THE PRESSURE!!!

    STOP THE PRESSURE, START THE RELIEF!!!!

    STAY TUNED FOR THE REST OF THIS SERIES ON PRESSURE ULCERS!

  • What does Independence mean to me?

    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!

  • Hygiene and Amputation

    With foot deformities and insensate feet, Spina Bifida patients are at risk of foot skin breakdown, pressure ulcers, and osteomyelitis. Rarely, pressure ulcers progress to squamous cell carcinoma. Spina Bifida patients may require limb amputation for osteomyelitis, foot ulcers, and squamous cell carcinoma. There is concern that transtibial amputations would have poor functional outcomes in Spina Bifida patients because of lower-extremity weakness.

    However, there is no available literature on transtibial amputation outcomes in this population. More distal calcanectomy and Symes amputations have been successful in restoring ambulation in lower-level Spina Bifida patients. https://journals.lww.com/ajpmr/Fulltext/2015/11000/From_Wheelchair_to_Cane__Elective_Transtibial.10.aspx

    Foot Care for Amputees

    LOOK
    Check your feet every day for any changes and use a hand mirror to see underneath your feet.


    PROTECT
    Wear correct fitting shoes and never go barefoot


    PREVENT
    Don’t allow problems to occur – wash and dry your feet properly every day.


    SEEK
    If you notice any changes immediately seek medical advice from a foot care professional


    DO
    Have an annual foot check from a podiatrist.

    For more information, you can search http://www.limbs4life.org.

  • Leg Elevation Rules

    Elevating legs occasionally

    Rest– Immediately rest the affected area as much as possible. Experts recommend 24 to 48 hours of no weight-bearing activities. Continued use of a moderate or severely sprained ankle can delay healing, increase pain, or even worsen the injury. With a mild sprain, activity is generally tolerated after 24 to 48 hours of rest.
    Ice– To help reduce pain and swelling during the first 48 hours after injury, ice the area 20 minutes at a time every 4 hours, using an ice pack covered in a towel. If you don’t have an ice pack handy, an alternative would be to use a bag of frozen peas, corn, or other veggies. Try not to ice the injury for more than 20 minutes at a time, as it may actually cause further tissue damage.

    In the majority of studies, researchers found icing was effective in numbing muscle soreness, but observed — for up to 15 minutes after ice treatment — significantly reduced:

    • Muscle strength
    • Power
    • Fine motor coordination


    Compression– Using an elastic medical bandage, wrap the area to help decrease swelling and internal bleeding (if present). The wrap should be snug, but make sure you have proper circulation. Some signs that the bandage is too tight include numbness, tingling, increased pain, coolness, or swelling. If you think you need to use the wrap for more than 48 to 72 hours, you may have a more serious issue that requires prompt medical attention.


    Elevating your limbs and Exercise! Raise the injured body part above heart level so that gravity can move fluids away from the injured area.

  • PICOs and Pressure Ulcers

    Technology

    PICO is a canister-free, single-use, negative pressure wound therapy system consisting of a sterile pump and multi-layered adhesive dressings. Each dressing has 4 layers: a silicone adhesive wound contact layer, which is designed to minimise pain and damage during peel-back and to reduce lateral tension; an airlock layer for even distribution of pressure; an absorbent layer to remove exudate and bacteria from the wound; and a top film layer, which acts as a physical barrier and allows moisture to evaporate. The pump is operated by 2 AA batteries and delivers a continuous negative pressure of 80 mmHg to a sealed wound. Once activated, using a push button, the battery drives the pump for up to 7 days and LEDs provide alerts for low-battery status and pressure leaks.

    Standard PICO dressings come in 8 sizes: 10×20 cm, 10×30 cm, 10×40 cm, 15×15 cm, 15×20 cm, 15×30 cm, 20×20 cm and 25×25 cm. Multisite PICO dressings come in 2 sizes: small (15×20 cm) and large (20×25 cm).

    The latest version of the technology is the PICO7 system. This differs from the version of PICO notified to NICE by having an improved pump to minimise leakage and an integrated belt clip to allow for easier transport. The PICO7 pump contains a magnet and it should be positioned at least 10 cm (4 inches) away from other medical devices that could be affected by magnetic interference.

    Innovative aspects

    PICO differs from conventional negative pressure wound dressings in that it:

    • has no separate canister
    • is portable and disposable
    • has a proprietary dressing layer that is designed to allow even distribution of negative pressure across the incision and zone of injury.

    The Purpose behind the PICO

    PICO is intended for surgical incisions with low or moderate levels of exudate. This guidance focuses on the use of PICO dressings for closed surgical incisions. PICO dressings can be applied by healthcare professionals including surgeons and tissue viability nurses for people in a range of care settings. Training is needed to place the dressings correctly. My District Nurses are the only ones that can dress, undress and re-dress my wounds.

    Costs

    Standard PICO dressings are available in 8 different sizes. Each pack includes a single-use pump and 2 dressings. The list prices for PICO dressings range from £127.06 to £145.68 (including VAT).
    https://www.smith-nephew.com/key-products/advanced-wound-management/pico/.

    LET’S WORK TOGETHER TO STOP THE PRESSURE!!!

  • Understanding and making a difference to tackling Disability Hate Crime

    Hate Crime vs General Crime

    Any crime can be prosecuted as a hate crime if the offender has either demonstrated hostility based on race, religion, disability, sexual orientation or transgender identity
    Or

    been motivated by hostility based on race, religion, disability, sexual orientation or transgender identity
    Someone can be a victim of more than one type of hate crime.

    These crimes are covered by legislation (Crime and Disorder Act 1998 and section 66 of the Sentencing Act 2020) which allows prosecutors to apply for an uplift in sentence for those convicted of a hate crime.

    The reason for failed investigation is ineffective reporting.

    Be more specific. Provide more details.

    victim vs perpetrator- responsibility falls on the victim

    Victims are seen as vulnerable and insignificant not equal. https://bradfordforeveryone.co.uk/

    It’s the first day of Hate Crime Awareness Week and we are encouraging victims of hate crime to speak out.

    What is being done to fight this?

    Monday, 11th October

    Bradford District’s Hate Crime Strategy 2021-24 Launch Event

    The event will bring together key partnership organisations, groups identified as one of the 5 ‘Protected characteristic’ groups, community and faith representatives.

    Tuesday, 12th October

    Hate Crime Conference

    Hate Crime Awareness Week is week of actions to encourage local authorities, key partners and communities affected by hate crime to work together to tackle local hate crime.

    Wednesday, 13th October

    Coffee and Cake Morning

    The Equity Centre is a Hate Crime Reporting Centre, however this event provides people with a chance to meet others over a hot drink and some cake/biscuits.

    Eastern European Community Hate Crime Awareness

    Several of the Districts main organisations working in the hate crime space such as Bradford Council, Bradford Hate Crime Alliance, West Yorkshire Police and Victims Support will be there to explain their roles, explain what is hate crime, where and how it can be reported and Q&A session

    Thursday, 14th October

    Hate Crime Question Time

    The Panelists will explain what type of hate crime-related work they are undertaking and will answer questions from the online audience.

    Hate Crime Awareness event for the Bradford African Community

    Several of the Districts main organisations working in the hate crime space such as Bradford Council, Bradford Hate Crime Alliance, West Yorkshire Police and Victims Support will be there to explain their roles, explain what is hate crime, where and how it can be reported and Q&A session.

    Friday, 15th October

    Make Sure It Adds Up – Bradford District Anti Rumour Strategy

    A chance to learn more about the Bradford For Everyone campaign to reduce rumours and increase critical thinking with the aim to reduce hate crime overall. Find out more about our online resources and forthcoming pledge.

    Saturday, 16th October

    Bradford City Football Club

    BCFC have invited 30 members from the ‘emerging communities’ to attend the match, take the Root Out Racism banner onto the pitch before the game, players will be supporting the hate crime awareness week in the days leading up to the game.
    For more information on reporting hate crime check out this website at: https://www.cps.gov.uk/crime-info/hate-crime.

    Being different is not a crime. Victimisation is prejudice!

  • Dietary Impact of Food on Pressure Ulcers

    Pressure ulcers (also known as pressure sores) occur when the skin and surrounding tissue is damaged by medical devices or the weight of the body pressing down. This restricts blood flow and the delivery of oxygen and nutrients to the area. They often develop where bones are close to the skin such as on the lower back/spine, hips, heels and elbows. Having a poor nutrient and fluid intake can increase the risk of pressure ulcers.

    The risk increases in those who are underweight or overweight. Maintaining a healthy weight and eating a balanced diet can reduce the risk of developing pressure ulcers. You should try to adopt a meal plan like this:

    Breakfast
    Mid-morning snack
    Lunch
    Mid-afternoon snack
    Dinner
    dessert

    This is because being overweight can reduce mobility and increase the weight bearing load through pressure areas such as the bottom.
    Being underweight can mean there is less natural padding on bony areas such as the bottom and hips.
    The skin needs a good supply of fluid and nutrients to maintain its circulation and keep it supple.


    Nutrition and pressure damage
    Once a pressure ulcer has developed, nutrition plays a vital role in the healing process. This is because the body needs protein, energy (calories), vitamins and minerals (such as vitamin C, iron and zinc), and plenty of fluids to support the wound healing process.

    Protein
    Your body may need more protein if you have a pressure ulcer. Foods that are high in protein include meat, fish, eggs, dairy products, nuts, beans and pulses. Try to have at least one of these foods at each meal. Aim to have one pint of milk per day or a variety of milk and dairy foods such as milk puddings, cheese or yoghurts.

    If you are overweight choose low fat versions. They contain the same amount of protein as full fat versions but are lower in calories. There are also some yoghurts, ice cream and milks available that contain higher amounts of protein.

    If you use milk substitutes, soya milk contains a similar amount of protein as cow’s milk. Oat, rice, hemp and nut based milks contain significantly less protein.

    Iron
    Iron is important for the healing process by helping to maintain adequate blood haemoglobin levels. Foods that are good sources of iron include meat, fish and eggs. Iron is also found in other food such as beans, pulses, green vegetables and dried fruit, but these are less easily absorbed.

    Vitamin C
    Vitamin C helps with the absorption of iron from your food and also directly with the healing process. Vitamin C is found in a wide variety of fruit and vegetables. It is not stored in the body so a daily supply is needed. Vitamin C is destroyed during the cooking process, so it is important not to overcook your vegetables, or if possible, steam them. Drinking a small glass of fruit juice (150ml) with your meal is a good way to improve your intake. If your vitamin C intake remains low you may need to take a supplement.

    Zinc
    Zinc is important for the formation of new skin tissue and to help pressure ulcers to heal. Good sources are lean red meat, shell fish, milk, cheese, bread, lentils, beans and cereal products such as wheatgerm.

    Vitamin and mineral supplements
    If you cannot eat enough foods containing key vitamins and minerals then you may need to take a supplement. If you are unable to manage a varied diet, or have a poor appetite, an “A to Z” type vitamin and mineral supplement may be necessary and these are available from many high street chemists. If you are managing to eat a full and varied diet then there is no benefit in taking high levels of vitamins and mineral supplements – in fact, this can be harmful.

    Fluid
    Dehydrated skin can become dry and fragile. It is important that your skin is kept moist from the inside. You should aim for 1.5 to two litres per day (six to ten mugs). This could include any liquid (tea, coffee, milk, water, juice) but not alcohol. If you are overweight avoid drinks that contain sugar, choosing sugar free alternatives or using low-calorie sweeteners in hot drinks.

    Body weight
    If you are overweight, losing weight could help to reduce the risk of pressure ulcers and protect a newly healed pressure ulcer. However, if you restrict your intake too much whilst a pressure ulcer is healing it could delay the healing process.

    It is important that you maintain a balance to your diet so that your body continues to get all the nutrients it needs. Simple changes that you could make to your diet if you are overweight are:

    • Cutting out sugar from hot drinks or using a sweetener.
    • Using low fat cooking methods such as grilling, baking, microwaving or steaming rather than frying.
    • Opting for snacks that are lower in energy and fat such as low fat yoghurts and fruit.
    • Remember to have meals that are balanced. Try not to miss meals.
    • Aim to lose an average of no more than 0.5 to 1kg a week.


    If you are underweight, pressure ulcers need a lot of nutrients to help them heal. If you are underweight you may not have enough nutrient stores in your body so you will need extra nutrition from your diet. Without nutrients the healing process may take longer. Some changes that could help to increase your intake are:

    Ensure that you have regular meals. If you find it difficult to prepare and cook meals then there are a wide variety of tinned, chilled or frozen ‘ready meals’ available. Frozen or tinned vegetables can also be useful.
    Try to have three small meals and two to three nourishing snacks throughout the day (such as yoghurts, cheese, nuts and biscuits).
    If your appetite is poor, try to also include two nourishing drinks each day such as: milk, malted milk drinks, fruit juice or powdered supplement drinks which are available from your local chemist or supermarket.
    Oral Nutritional Supplements (sip feeds)
    If your food intake remains low, it may not be enough to help heal the pressure ulcer. If this is the case, it may be necessary for you to have some prescribed oral nutritional supplements. These types of drinks provide a rich source of energy, protein and other nutrients. A dietitian may be available to discuss with you the most appropriate one and how many you will need. You should not take additional vitamins and mineral supplements if you are taking three or more oral nutritional supplements per day.

    If you have diabetes, poorly controlled diabetes can delay healing. Diet and medication may need to be adjusted to achieve good diabetic control. Speak to your GP, nurse or dietitian if you require help with this.

    Eating a balanced diet and having a healthy body weight will help to reduce the risk of developing a pressure ulcer. If you have a pressure ulcer, eating and drinking well will help it to heal. If you are overweight then it would be beneficial to try to lose weight gradually. If you are underweight then weight gain will help improve the padding over the bones. This can be best achieved by eating small and frequent meals and snacks.

    For more information, you can follow: https://www.bda.uk.com/resource/pressure-ulcers-pressure-sores-diet.html.

  • WHAT IS AN ASBAH AMBASSADOR?

    WHAT IS AN ASBAH AMBASSADOR?

    By: Daniella Jade Lowe

    The Association for Spina Bifida and Hydrocephalus is a charity that was founded in 1967. ASBAH is the local association and does peer support, activities and events to bring the Spina Bifida and Hydrocephalus community together.

    Katy Raven is the Project Manager for ASBAH. This charity is comprised of volunteers, parents/carers, children, adults and committee members.

    This organisation covers North and West Yorkshire which includes Cheshire, East Riding of Yorkshire, Greater Manchester, Halton-Runcorn, Halton-Widnes, Kingston Upon Hull, Lancashire, Merseyside, Middlesbrough, North East Lincolnshire, North Lincolnshire, North Staffordshire, North Yorkshire, Redcar/Cleveland, Shropshire, South Yorkshire, Wakefield, Warrington, West Yorkshire, Wigan and Wirral.

    ‘Supporting you to flourish and thrive’ is the slogan for the ASBAH foundation. By supporting, informing, and campaigning, North & West Yorkshire ASBAH is continuing to help promote individual choice, control, and quality of life for all the people who use their services.

    It is very important for people who are born with a developmental disability to have a good support network through peer support and befriending, especially if they are excluded from mainstream education and employment and always have to push for inclusion. It helps them to thrive and flourish.

    For the past 13 years, I have been a recipient of this charity’s services. They’ve helped me with medical support, educational advice, Spina Bifida clinics, job-searching assistance, interviews, companionship, advocacy, applying for financial support and wheelchair services. They also played a role in helping me get my first electric wheelchair during my first year of college.

    It all started back in the summer of 2009, when I originally moved to Bradford to start college. Upon arriving at the student accommodation, I met Miss Joan Pheasant, a chairman from the board of the ASBAH foundation. I found out about this charity through online research while still living in Bermuda. My case was slightly unusual because, I think I am the only international ASBAH member.

    For the sake of awareness, this organisation has decided to start an initiative called ASBAH Ambassadors and I’ve chosen to join in to advocate for others with Spina Bifida and Hydrocephalus.

    For example, one way that they do this is by celebrating Spina Bifida Week from October 25th to the 29th annually. During this week, they have campaigns and forums to educate people on the subject.

    In my opinion, being an ASBAH Ambassador is about disability representation, not just sharing information and advocating. It’s also about raising awareness. For me, being an ASBAH Ambassador is also about networking. This is why we have a befriending initiative too.

    I strongly feel that this charity has helped me to mature and properly manage my disability related issues. I definitely found it difficult to prioritise my medical affairs, finances, social life and education, especially during my first year of college.

    When I first started college, I remember participating in the Go Folic Campaign with ASBAH for Spina Bifida Week (https://www.totalhealth.co.uk/blog/importance-folate-prior-conception-go-folic-you-frolic). These campaigns and forums taught me how to improve the way I take care of myself, especially in diet and personal hygiene. ASBAH has definitely helped me to flourish and thrive in my health, education, social life and finances.

    Joan Pheasant has even helped me with transportation to and from appointments and legal advice (https://www.keighleynews.co.uk/news/12965951.keighley-group-takes-taxi-overcharging-campaign-district-wide/.)

    I’ve also been to various annual social events like afternoon tea at the Clevedon House in Ilkley and Christmas dinners in Leeds, as a member of the ASBAH Association. One Sunday, we even went to lunch at the Cow and Calf in Ilkley.

    I appreciate this and feel it was beneficial to me because I know what it is like to live in a country that does not provide these services. I’ve learned a lot from this charity, like how to approach interviews and applying for benefits. I also feel that my social skills have improved. This charity is definitely needed and a great asset to the community especially for the expectant families and parents with Spina Bifida and Hydrocephalus. When I grew up I didn’t have access to these services. I went to private nursery and preschool because not everyone was willing to take on a child with a disability.

    For more information, you can check out their Facebook page: https://www.facebook.com/ASBAHNWY.

    You can also log onto their website: https://www.nwyasbah.org/?fbclid=IwAR3GIzZsOSyRXiRwD7l-qiVaDIle0ezgXHk7puKhBNDnh_PEPTT6cuVuBP4.