Wegeners Disease Resources - Benefits and Work

When you are worried about your health, the last thing that you need is extra worry about your finances.

At a time when most politicians seem proud to treat sick and disabled claimants with harshness and suspicion, independent and accurate information about how to claim and keep your benefits is vitally important.

I was first alerted to Benefits and Work via Vasculitis UK. They use the guides that this UK based organisation produces to help people with vasculitis get all of the the benefits they should be receiving.

Benefits and Work

Benefits and Work

Here are a list of just some the possible benefits Benefits and Work can help you claim for:

Attendance Allowance
Carer's Allowance
Council Tax Reduction
Disabled Students Allowance (DSA) in Higher Education
Disability Living Allowance (DLA)
Employment and Support Allowance (ESA)
Housing Benefit
Personal Independence Payments (PIPs)
Social Care and Support
Motability - Road Fund Licence - Blue Badge Scheme
Other Benefits and Enquiry Line
Additional Information

The purpose of Benefits and Work is to ensure that you get all of the government benefits that you are entitled to. Claiming for benefits, especially if you have suddenly become ill and have never claimed for them before, can be very stressful and confusing. 

For one thing, they are complex; do you know what DLA stands for? ESA? PIP? And what if you aren't happy with the way your medical assessment is handled, and you feel that the wrong decision has been made? 

For a subscription of £19.95 per year they provide guides to:

Employment and Support Allowance 
Disability Living Allowance
Personal Independence Payment

You'll also be able to read all the DWP materials they've obtained using the Freedom of Information Act.

In addition, you'll get unlimited access to members only news stories and the chance to share worries, get support and make friends in their members only forum.

If you don't want to sign up directly to Benefits and Work you can approach Vasculitis UK for free using this link: Jann Landles, Hon Secretary

About Benefits and Work

Benefits and Work, was launched in 2002 (and became a limited company in October 2006) by advice worker turned barrister Holiday Whitehead and benefits writer and trainer Steve Donnison.

It is unique amongst benefits information providers in that it asks for no funding or support from the government, local authorities, grant making trusts or large companies. Every penny of Benefits and Work's revenue comes from its subscribing members.

This complete independence means that Benefits and Work is free to publish information that makes it deeply unpopular with the Department for Work and Pensions, multinationals with an interest in benefits - such as Atos Healthcare, Unum Provident and Capita - and even other advice providers whose dependence on state and corporate funding may have made them reluctant to tell the whole truth.

Steve Donnison

Before launching Benefits and Work Steve worked in the voluntary sector for over 25 years, mainly with disadvantaged children and homeless adults.

He has been a welfare rights worker for more than a decade and continues to represent clients at social security tribunals for a local advice agency. He also trains advice workers, social workers, housing workers, health professionals and others who deal with welfare benefits in the course of their work.

Steve has written about welfare benefits for a wide range of disability organisations, including: Disability Alliance; National Association for Colitis and Crohn's disease; Spinal Injuries Association; Multiple Sclerosis Society; Cerebra, the foundation for brain injured children; Parkinson's Disease Society.

Holiday Whitehead

Holiday began her working life as an ancillary worker in an NHS hospital, where she became involved in trade union work for NUPE (now part of UNISON). Following a diploma course at Ruskin College, Oxford sponsored by the TUC and her trade union, Holiday went on to do a law degree at the University of East Anglia. At the same time Holiday began volunteering for an advice centre and, following her degree, became a full-time welfare rights worker and then an employment law specialist.

In 1998 Holiday returned to university to undertake her Bar finals and was called to the Bar in 1999.

Holiday practised as a barrister until January 2004 when, entirely frustrated with the lack of progress towards direct access to barristers made by the Bar Council, she ceased practising and became a freelance employment law consultant. Holiday is the co-author of all the guides on the site.

I wouldn't normally recommend a commercial site such as this one, but most of the feedback I have seen from people using it has been positive. They say that they currently have 140,000 subscribers. They also have a 7 day money back offer, so you can sign up, have a look around and then get your money back if it isn't for you.

Why not give them a try?

Wegener's Disease Resources - Great Ormond Street Hospital for Children

The Great Ormond Street Hospital (GOSH) is renowned as one of the best children's hospitals in the world. It was founded in 1852 in London and it is solely dedicated to children's healthcare and finding better ways to treat childhood illnesses.

Great Ormond Street Hospital

Great Ormond Street Hospital

GOSH treats around 240, 000 children per year in more than 50 clinical specialities. Patients are referred from their doctor's in the UK and beyond. As well as treating children, GOSH trains doctor's and nurses to help look after children in other hospitals and performs research into childhood illnesses.

In 1962 the hospital pioneered the first heart and lung bypass machine for children, which revolutionised heart surgery. Today it is one of the largest centres for heart transplantation in the world.

In 1967 GOSH trialled the rubella vaccine and within three years it was rolled out nationwide.

In 1979 the first successful bone marrow took place at Great Ormond Street.

In 2000, Great Ormond Street Hospital launched the world’s first gene therapy trials for children born without functioning immune systems. By 2011, gene therapy had cured 14 children with previously fatal forms of severe combined immunodeficiency.

Thirteen-year-old Ciaran-Finn Lynch became the first child in the world to undergo a ground-breaking stem cell trachea transplant in 2010. Great Ormond Street Hospital runs the only paediatric tracheal service in Europe.

These last two breakthroughs illustrate just how important GOSH may be in treating children and adults with Wegener's Disease. Their website has a page explaining Wegener's Disease, and also a patient story from Callum, then aged 12, who had a kidney transplant following a GPA diagnosis.

Although GOSH is an NHS hospital it does rely on donations to fund research and continually improve patient care. You can donate to GOSH by visiting this page.

Photo from Tom Page on Flickr.

Wegener's Disease Resources - The Mayo Clinic

Mayo Clinic is a nonprofit medical practice and research group based in Minnesota, USA. It employs almost 4,000 physicians and over 50,000 other medical staff. It specialises in treating difficult cases such as Wegener's Disease. This is a special year for Mayo Clinic as 2014 marks the 150th year of operation.

Mayo Clinic

Mayo Clinic developed gradually from the medical practice of a pioneer doctor, Dr. William Worrall Mayo, who settled in Rochester, Minnesota, in 1863. His sons, William James Mayo and Charles Horace Mayo, joined his practice in 1883 and 1888, respectively.

They all shared a pioneering zeal for medicine. As the demand for their services increased, they asked other doctors and basic science researchers to join them in the world's first private integrated group practice.

This approach to medicine was controversial at the time, but the benefits to patients were undeniable, and acceptance began to grow. The group practice concept that the Mayo family originated has influenced the structure and function of medical practice throughout the world.

"The Mayos' Clinic" developed a reputation for excellence in individual patient care. Doctors and students came from around the world to learn new techniques from the Mayo doctors, and patients came from around the world for diagnosis and treatment. The caring attitude of the doctors is what drew so many doctors and patients.

Shared responsibility and consensus still provide the framework for decision making at Mayo. Through the years, Mayo Clinic has nurtured and developed its founders' style of working together as a team. 

That teamwork in medicine is carried out today by more than 55,000 doctors, nurses, scientists, students and allied health staff at Mayo Clinic locations in the Midwest, Arizona and Florida.

Patients can be referred to Mayo Clinic by their insurer or their own physician. Appointments are then prioritised on the basis of medical need.

There are a number of pages on their website containing information relevant to Wegener's Granulomatosis (GPA).

Photograph from Tripp via Flickr.

Wegener's Disease Resources - Macmillan Cancer Support

At first glance Macmillan Cancer Support may seem to be an odd choice for a recommended resource for Wegener's Disease. Cancer isn't even a form of vasculitis, never mind Wegener's Granulomatosis (GPA). Nevertheless, Macmillan holds a special place in my heart in relation to Wegener's.

Macmillan Cancer Support

Macmillan Cancer Support

That's because when Alicia was very ill, and the doctors were struggling to get the active phase of the disease under control, she was given such a battery of painkillers and drugs that she was severely ill and unconscious much of the time. Alicia was on a ward with many older people with terminal lung cancer and one day a Macmillan nurse noticed how ill Alicia was and asked if she could help.

That nurse was called Helen, and Alicia counts her as one of her friends to this day. Helen introduced Alicia to Dr Claud Regnard who worked with patients to control their pain in end of life care. Claud agreed to help Alicia and despite some dark days, he managed to restructure her pain medication so that she was able to cope with the disease, remain conscious and live some semblance of a normal life.

If you want to check what Macmillan resources are near you (assuming you like in the UK) you can visit this link.

Macmillan didn't just focus on the disease and the person with the disease - they were equally concerned for Alicia's family and how they were coping. They believed that a strong support network was vital to recovering successfully from a serious illness. 

Macmillan are a registered charity and rely heavily upon donations to function. If you are interested in making a contribution, this is how you do it.

Register now for the Roadmap to Wellness webinar

If you've been following the Vasculitis Foundation's Roadmap to Wellness Series you might be interested to know that they will be holding their fifth webinar on Wednesday, September 24, 2014 at 3:00 p.m. – 3:45 p.m. Eastern time (USA). 

The founder and principal investigator of the Translational Program in Vasculitis, at the National Institute of Arthritis and Musculoskeletal and Skin Diseases, which is part of the National Institutes of Health (NIH) is Dr. Peter Grayson.

Dr Peter Grayson - Vasculitis Foundation Roadmap to Wellness webinar

Dr Peter Grayson - Vasculitis Foundation Roadmap to Wellness webinar

Dr. Grayson has led several successful clinical outcomes projects and holds a leadership role  with the Vasculitis Clinical Research Consortium (VCRC), where he also completed a fellowship. He focused on research and clinical aspects of vasculitis in that VCRC program. He serves as the representative to a major international collaboration to develop novel diagnostic and updated classification criteria in several forms of systemic vasculitis with the American College of Rheumatology.

His specific area of research includes biomarker discovery and development through gene expression profiling, and other genomic techniques, clinical epidemiology and immunology, disease classification, and clinical trials in vasculitis.

You can read more about the webinar on the Vasculitis Foundation website here.

If you want to participate in the webinar, you can register here via GoToMeeting.

Photograph used with permission from Charles Nadeau.