Uk Denying Benefit To Patients With Sickle Cell Disease
The U.K. government has been withholding personal independence payments from patients with sickle cell disease because the condition does not fit government criteria for welfare, according to a report from the British news organization Sky News.
PIP payments are provided to individuals dealing with the extra costs associated with a long-term health condition or disability. Sickle cell disease is a chronic condition which can lead to unexpected medical bills due to a variety of complications, as well as limited mobility due to vaso-occlusive pain crises. However, many patients do not show any signs of illness in between these pain crises, meaning that many patients are denied PIP benefits because they appear well at the time of government benefit review.
To help address this issue, Labour Party Member of Parliament Pat McFadden, chair of the all-party parliamentary group on sickle cell, is proposing reforms to the system. I think its now time for the Department for Work and Pensions to have a proper investigation into this to see if they are getting their decision making right because we dont believe that is happening, he said.
According to U.K. government figures, 1,350 people with sickle cell disease are receiving PIP payments, but that is only a fraction of the estimated 15,000 people with the condition living in the U.K.
Source: SkyNews, July 27, 2019
Does Sickle Cell Disease Qualify For Disability Benefits
The following article gives comprehensive information as to whether Sickle Cell Disease qualifies for Social Security Disability Benefits, what are the chances of a claimant getting SSD/SSI benefits and why is it important to contact disability attorney to win a disability claim for Sickle Cell Disease.
You Are Born With Sickle Cell Trait It Is Inherited When Only One Of Your Parents Has Passed On The Sickle Gene And Will Never Develop Into Sickle Cell Disorder
You do not have symptoms from sickle cell trait, so it is a good idea to have a blood test to see if you have sickle cell trait.
If you have the trait, the majority of red cells in the blood are normal round shaped cells. Some sickle shaped cells may be present under certain conditions.
Sickle cell trait is found in 1 in 4 West Africans and 1 in 10 Afro-Caribbeans, and is also found in people who originate from the Mediterranean, Asia and the Middle East. It is less common in white Europeans, although with the ever growing diversity of the population this will change.
Most people who have sickle cell trait are healthy. However, anaesthetics can cause problems. If you have sickle cell trait Always notify your dentist or doctor before treatment commences to be on the safe side.
There is a small chance that you may experience pain at high altitudes , including long-haul flying in unpressurised planes and mountain climbing. It is important you say you have sickle cell trait before undertaking such activities as you may need to breathe oxygen. Extreme exercise may also precipitate problems and if you are a professional athlete you should have a training programme that takes account of this.
The trait is not an illness, but if you are planning to have children, then certain factors have to be considered.
If your partner does not have sickle cell trait, then any children you have will not have sickle cell disorder, but they could have the trait .
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What Does The Rpwd Act 2016 Have For Persons With Blood Disorders
The RPWD Act 2016 has recognised persons with blood disorders as persons with disabilities under the Act. Those with 40% and above disability will be given a Disability Certificate.
The first and foremost benefit of The RPWD Act 2016 is non-discrimination. In the past many outstanding persons with blood disorders have been denied employment even though they were selected on merits. With this Act in place, such discrimination cannot happen. Moreover, the Act states denying reasonable accommodation will be also discrimination. Therefore, an organization should not deny any accommodation that a person may need.
The second most important benefit would be Reservation in Higher Education. This will enable the persons with blood disorders to pursue higher education of their interest.
The other benefits of the RPWD Act, 2016 are the right to equality, life with dignity, and respect for his/her own integrity equally with others.
Few more measures like appropriate healthcare measures, insurance schemes, rehabilitation programs and incentives to employer in private sector that provide 5% reservation for persons with benchmark disability to be undertaken by the Government will depend on how these are implemented.
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Meeting Disability Criteria With An Rfc
Just because you do not meet the Blue Book criteria does not mean you are not going to be approved for disability benefits. There are other ways to be approved as well. An RFC can help you gain approval for your disability benefits.
The residual functioning capacity assessment is a form completed by doctors that clearly states what a patient can or cannot do. Having this form completed by your doctor can greatly increase your chances of being approved for Social Security Disability benefits. These are very detailed forms, indicating how long you can sit, stand or lie down without having to adjust. It indicates your medications, prognosis and expected duration of the disorder.
The Disability Determination team will consider the severity of your impairment, your age, your work history, your education and any transferable skills that can be used in another job. In the event that you have transferable skills, Disability Determination Services is much more likely to believe that there is another job you can do.
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Treatments For Sickle Cell Disease
People with sickle cell disease need treatment throughout their lives. This is usually delivered by different health professionals in a specialist sickle cell centre.
It’s also important for people with sickle cell disease to look after their own health using self care measures, such as by avoiding triggers and managing pain.
A number of treatments for sickle cell disease are available.
For example:
- drinking plenty of fluids and staying warm to prevent painful episodes
- painkillers, such as paracetamol or ibuprofen
- daily antibiotics and having regular vaccinations to reduce your chances of getting an infection
- a medicine called hydroxycarbamide to reduce symptoms
- regular blood transfusions if symptoms continue or get worse, or there are signs of damage caused by sickle cell disease
- an emergency blood transfusion if severe anaemia develops
The only cure for sickle cell disease is a stem cell or bone marrow transplant, but they’re not done very often because of the risks involved.
Read more about how sickle cell disease is treated and living with sickle cell disease.
Assessing Information And Resources
DISCERN Genetics . The DISCERN Project Team aim to provide clear guidance for users and producers of publicly available information on genetic screening and testing. This is a questionnaire which provides those using information on genetic testing and screening with a valid and reliable way of assessing quality.
Trust it or Trash it?. Creating and Assessing Genetic Information . Free online tool developed by The Access to Credible Genetics Resource Network, and published by Genetic Alliance, for anyone assessing the quality and completeness of health information.
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Causes Of Sickle Cell Disease
Sickle cell disease is caused by a gene that affects how red blood cells develop.
If both parents have the gene, theres a 1 in 4 chance of each child they have being born with sickle cell disease.
The childs parents often will not have sickle cell disease themselves and theyre only carriers of the sickle cell trait.
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Sickle Cell Anaemia Patients Denied Benefits Due To ‘invisible’ Illness Mps Warn
Most patients do not seem unwell when they are assessed as symptoms are triggered by stress or a sudden change in temperature.
Saturday 27 July 2019 22:58, UK
Thousands of people with the genetic blood disorder sickle cell anaemia are being declined vital welfare payments, MPs have warned.
They are demanding an urgent investigation after personal independence payments were withheld because the condition, which cannot be seen, does not fit the government’s assessment criteria.
Most patients do not appear unwell when they are assessed as their symptoms are triggered by stress or a sudden change in temperature, which can make the blood vessels narrow.
Labour’s Pat McFadden, chair of the all-party parliamentary group on sickle cell, is calling for an overhaul of the system.
“I think it’s now time for the Department of Work and Pensions to have a proper investigation into this to see if they are getting their decision making right because we don’t believe that is happening,” he said.
Sickle cell is an inherited condition that affects up to 15,000 African and Caribbean people in the UK but also some people of Mediterranean origin. It is a blood-borne disease which can cause severe pain and damage to vital organs.
PIP, made up of daily living and mobility components, replaced the disability living allowance in 2016.
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Meeting The Sickle Cell Disease Disability Listing
To meet the criteria for automatic approval for disability under the main sickle cell disease listing , you must show that you have sickle cell anemia with one of the following:
- Painful sickle cell crises requiring intravenous or intramuscular narcotic medication, at least six times in the past 12 months, with each crisis at least 30 days apart .
- Complications requiring hospitalization at least three times in the past 12 months. Each hospitalization must last 48 hours and occur at least 30 days apart.
- Anemia that is severe and chronic, with hemoglobin measurements of 7.0 g/dL or less, measured at least three times within a 12-month period, with each measurement at least 30 days apart, or
- Beta thalassemia major that requires life-long red blood cell transfusions at least once every six weeks.
To qualify for disability under this listing, your medical record should include the results of a test called hemoglobin electrophoresis and a recent history of your hematocrit levels. Your doctor’s notes should include evidence of your crises, including the specific type of crises suffered, the symptoms suffered, and the severity, length, and frequency of the crises.
Note that this listing was updated in May 2015. The old listing for hemolytic anemias used hematocrits: the percentage of red blood cells to the total blood volume . The new listing uses hemoblogin levels instead, expressed in grams per deciliter .
Surgery Precautions If You Have Sickle Cell Disease
It’s important to let your healthcare team know if you need to have an operation under general anaesthetic at any point. Tell your surgeon that you have sickle cell disease.
This is because general anaesthetic can cause problems for people with sickle cell disease, including an increased risk of experiencing a sickle cell crisis.
You may need close monitoring during surgery to make sure you’re getting enough fluids and oxygen and are kept warm.
Sometimes you may be need a blood transfusion beforehand to reduce the risk of complications.
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Folic Acid And Penicillin
From birth to five years of age, penicillin daily, due to the immature immune system that makes them more prone to early childhood illnesses, is recommended. Dietary supplementation of folic acid had been previously recommended by the WHO. A 2016 Cochrane review of its use found “the effect of supplementation on anaemia and any symptoms of anaemia remains unclear” due to a lack of medical evidence.
Ethical And Social Issues
Genomics Education . This short interview with an ethics researcher at the Wellcome Trust Sanger Institute provides an overview of the key ethical aspects of genomic testing.
Human Genome Project. This resource contains details of the ethical, social and legal implications of the Human Genome Project.
Nuffield Council on Bioethics. This paper describes the range of ethical issues that arise in relation to the prospect of genome editing becoming available as a reproductive option for prospective parents.
Understanding Genetics: A New York Mid-Atlantic Guide for Parents and Health Professionals Published by Genetic Alliance. Chapter 8 Ethical, Legal and Social Issues.
World Health Organization. Useful online resources on ethical, legal and social issues of human genomics.
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Maintaining Sct Counselling Knowledge And Skills
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Consent: A competency framework. This competency framework identifies the core competencies required to facilitate and consent patients for germline genomic tests. Each competency is provided with links to supporting evidence-based educational resources.
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Family history template. A genetic pedigree captures details about the health of multiple generations. This information can be important in diagnosing an inherited condition, revealing a pattern of inheritance and informing clinical decisions regarding testing and management. Understanding the relationships between family members can also be useful when considering the communication of information and the clinical management of the whole family.
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Fundamentals in Human Genetics and Genomics. This resource is aimed at NHS healthcare professionals who want to build a foundation of knowledge about the underpinning science behind genomic medicine.
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Introduction to the Counselling Skills used in Genomic Medicine. This course introduces the knowledge, communication and counselling skills as well as the appropriate attitudes and behaviours necessary to support patients and their families whose care will be influenced by genomic investigations.
Glasgow University: Certificate in Counselling Skills . This is a short course which outlines the different theoretical models of counselling. It also examines issues of personal, professional and ethical conduct.
Managing Sickle Cell Pain
You can reduce your risk of painful episodes by avoiding things that can trigger them.
Try to:
- drink plenty of fluids, particularly during hot weather dehydration increases the risk of a sickle cell crisis
- avoid extreme temperatures you should dress appropriately for the weather and avoid sudden temperature changes, such as swimming in cold water
- be careful at high altitudes the lack of oxygen at high altitudes may trigger a crisis
- avoid very strenuous exercise people with sickle cell disease should be active, but intense activities that cause you to become seriously out of breath are best avoided
- avoid alcohol and smoking alcohol can cause you to become dehydrated and smoking can trigger a serious lung condition called acute chest syndrome
- relax stress can trigger a sickle cell crisis, so it may help to learn relaxation techniques, such as breathing exercises
Your healthcare team can give you more advice about avoiding triggers.
It’s also a good idea to be prepared for treating painful episodes at home. Keep a ready supply of painkillers and consider buying some heated pads to soothe the pain.
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Use Of Genetic Information Tests And Results
SCT handbook for laboratories. Includes interpretation of antenatal results, guidelines for the referral of prenatal diagnosis samples to molecular haemoglobinopathy laboratories .
UK National Reference Laboratory for Haemoglobinopathies. This provides a dedicated SCT laboratory support service for antenatal and newborn laboratories and other healthcare professionals involved in the NHS SCT screening pathway.
Financial Expenses Involved With Sickle Cell Anemia
According to Reuters Health, the cost of treating sickle cell disease is high in the United States. Sickle cell disease is an inherited blood disorder in which the red blood cells contain an abnormal kind of hemoglobin that can take on a crescent or sickle shape. The defective red blood cells can block the small blood vessels resulting in stroke or tissue damage.
Other problems that can arise include anemia, leg and arm pain, gallstones, jaundice, kidney, spleen or liver damage and more. According to Reuters Health, a doctor at the University of Florida in Gainesville and her colleagues analyzed data for 4,294 sickle cell patients on the Florida Medicaid program.
According to the report, the average cost of health care was $1,946 per month for sickle cell patients, with a variation of substantial amounts across the different age groups. Adults with the blood disorder see the highest costs, reaching as high as about $2,853 monthly for those ages 30 to 39.
Looking at the numbers all together, an average patient diagnosed with sickle cell anemia could spend $953,640 on undiscounted health care costs by the time he or she reaches age 45. The study notes that the additional expenses, including uncompensated care, premature mortality, lost productivity and reduced quality of life are much higher than the financial figures.
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Sorrowful Early Teens Into Joyful Late Teens
I feel like I went through a lot of my early teen years crying. I didnt have it in me to be rebellious, so I reverted to tears tears of frustration, tears of isolation, tears of pain.
I was hospitalized more often than my peers because of SCA. I was the only black girl in most of my school environments, desperately trying to fit in. Yet, I wasnt able or allowed to participate in those status-affirming sleepovers or class trips because of the risk of me getting sick, or worse wetting my bed because of my required high water intake, was too great.
Thank God, life started improving for me once I overcame the bedwetting, found my tribe of friends, and surrendered to the fact that I wasnt going to follow fashion and have my midriff on display for multiple reasons.
Being hospitalized wasnt as depressing anymore, because I had friends to visit me and to look forward to hanging out with when I was discharged.
Then came my A-level years and getting my drivers license. Those were some of the sweetest years of my life. They combined my love for learning, the freedom from serious responsibilities, and the pleasure of being permitted to drive my mums car and stay out until late.
I felt alive. I felt normal. I felt like I finally belonged. And then, my family emigrated to the UK