Disabilities: Government loses tribunals, then changes rules

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Unhappy about two decisions made against it in legal tribunals, in relation to assessments for a disability benefit, the government now plans to change the regulations to get its own way. Is that a cynical response? Yes. It’s like changing the rules of a sport halfway through a game because you don’t like the referee’s decisions.

It all stems from decisions made last rear by the Upper Tribunal that had the effect of widening the criteria for qualifying for different elements of the UK government’s Personal Independence Payment (PIP). The benefit is claimed by people with MS and many other disabilities.

There is no doubt that the tribunal was entitled to make its judgments in the way the law was written but they did not fit in with the government’s view. So the regulations are to be changed to put things back the way they were.

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Minister for Disabled People, Penny Mordaunt MP.

Interestingly, and this is puzzling, in a statement made to the House of Commons on Thursday, minister of state for disabled people Penny Mordaunt said: “This (the changes) will not result in any claimants seeing a reduction in the amount of PIP previously awarded by DWP.”

Does that mean that anyone who has benefited from the tribunal decisions will keep their payments but that new applicants will have to abide by the changed regulations, once they come into effect? Don’t hold your breath!

The MS Society says: “The planned changes will affect the way that someone’s level of PIP award is calculated. They affect one of the 10 ‘daily living activities’ (which determine eligibility for the daily living component), and one of the two ‘mobility activities’ (which determine eligibility for the mobility component).

“The affected activities are Daily Living Activity 3 – Managing therapy or monitoring a health condition, and Mobility Activity 1- Planning and following a journey. The changes make these descriptors slightly more restrictive. They could impact the awards some people get.”

What that the extent of the impact for people with MS or other disabilities is not yet known but various disability groups will be working to establish how they will affect their communities. 

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ian-skype_edited50shadesofsun.com is the personal website of Ian Franks, who is Managing Editor (columns division) of BioNews Services. BioNews is owner of 50 disease/disorder-specific news and information websites – including MS News Today. Ian has enjoyed a successful career as a journalist, from reporter to editor, in the print media. During that career he gained a Journalist of the Year award in his native UK. He was diagnosed with MS in 2002 but continued working until mobility problems forced him to retire early in late 2006. He now lives in the south of Spain. Besides MS, Ian is also able to write about both epilepsy and cardiovascular matters from a patient’s perspective and is a keen advocate on mobility and accessibility issues.

MS medications: Improve access

A call is being made for a change to improve access to medications to treat multiple sclerosis.

American National MS Society president and CEO Cyndi Zagieboylo said: “It is time for change. People with chronic illnesses need to have confidence that they’ll be able to get the life-changing medication they need.”

The Society’s latest initiative aims to make the availability of MS medications affordable, simple and transparent and spotlights Abigail Bostwick, 36, who was diagnosed with multiple sclerosis in 2013.

She says she never thought it would hit her as hard as it has — not physically — but financially but added: “Our savings quickly drained. We’ve sold a lot of our things. We live paycheck to paycheck.”

accessLike many people living with MS, Bostwick has struggled to afford her MS medications and navigate the complicated system of prescription medication insurance coverage, says the society.

In a report on its website, it continues:

People with MS report high and rapidly escalating medication prices, increasing out-of-pocket costs, confusing and inconsistent formularies (lists of medications covered by an insurance plan), and complex approval processes that stand in the way of getting the treatments they need.  These challenges can cause delays in starting a medication or changing medications when a treatment is no longer working.

Delays may result in new MS activity (risking disease progression without recovery) and cause even more stress and anxiety about the future for people already living with the complex challenges and unpredictability of MS.

In 2004, the average annual cost for MS medications was $16,000; today it is $78,000 — that’s an increase of nearly 400 percent!

The society’s “Make MS Medications Accessible” initiative is calling on leadership from everyone involved — pharmaceutical companies, insurance providers, pharmacy benefit managers, specialty pharmacies, healthcare providers, policy makers, people with MS and others — to work together to focus on getting people with MS the medications they need to live their best lives.

“Medications can only change lives if people can access them. Medications — and the process for getting them — must be affordable, simple and transparent. No single stakeholder has all the solutions; we can only find the solutions together,” said Zagieboylo.

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ian profile50shadesofsun.com is the personal website of Ian Franks, who is Managing Editor (columns division) of BioNews Services. BioNews is owner of 50 disease-specific news and information websites – including MS News Today. Ian has enjoyed a successful career as a journalist, from reporter to editor, in the print media. During that career he gained a Journalist of the Year award in his native UK. He was diagnosed with MS in 2002 but continued working until mobility problems forced him to retire early in late 2006. He now lives in the south of Spain. Besides MS, Ian is also able to write about both epilepsy and cardiovascular matters from a patient’s perspective and is a keen advocate on mobility and accessibility issues.