50shadesofsun.com is back

Hi

This is just a brief note to say that 50shadesofsun.com is up and running again.

I know there has been a lack of posts for a few months, but the site is back in business.

Regular readers will know that I live with multiple sclerosis, an unpleasant, unwanted, degenerative disease. It is oppressive and daunting but I am still the same person, positive and mainly cheerful athough there are times of frustration. But everyone gets frustrated sometimes, right?

The good news is that MS had nothing to do with this site’s short break, read more here.

The site has a new look, is easier to read, and has changed its host to WordPress, so costs have been reduced – which is essential. After all, 50shadesofsun.com is not designed to be a money-earner.

It is an independent site which is totally free of any commercial influences. And it will continue to be just that. I promise.

Freedom of the press, of which digital media is a part, is very dear to me. As such, I will continue to voice my opinions, whether to praise or criticise, to encourage or warn, Whatever they are, my opinions will be honestly held and be fair comment.

Watch this space!

Some thoughts on making your home wheelchair-friendly

Wheelchairs remain a fear in the minds of many of us who have grown up hearing the phrase “confined to a wheelchair”. While that is not part of our current language about disabilities, a fear still remains about needing to use one.

In truth, however, a wheelchair is a tool that can make our lives easier.

Whether you can propel yourself around in a manual or a motorised chair, one of the most important things to get right is finding the right home – or making changes to your current one. And these changes, or adaptations, must not only make it wheelchair-accessible. They need also to make it easier for us to move about and do things, to live.

Steps and doorsteps are hazards that need to be overcome. Ramps can be built to overcome outdoor steps up to a door.

Talking of doors, it is imperative that all doors inside the accommodation, not just the external ones, are wide enough to navigate and get through comfortably.

Living in a one-floor accommodation is best but if you do have a staircase, not to worry. There are chairlifts that can transport you up and down – you will just need a second wheelchair upstairs.

Decide on the ideal bathroom for your needs

The bathroom is a key area to get right. Here you can choose a walk-in roll-in shower with a suitable seat and handgrips. If you prefer to take a bath, you could use a hoist to get you in and out or, alternatively, a walk-in bath is a possibility. Whichever you choose, don’t forget to include a non-slip floor.

There are a range of toilets that you can choose from. These include those that can wash and dry your nether regions to simple elements that can increase te seat height. Once again, hand grips are important. One more item worth thinking about is a roll-under was basin to make it easier to use.

To make the kitchen more usable, lower or adjustable units are available.

wheelchair

Carpets can make it difficult to move and manoeuvre a wheelchair.

One crucial feature is the floor. I have already mentioned the necessity for a non-slip floor in the bathroom, but you need solid floors everywhere. Carpets, especially deep pile ones, are not wheelchair-friendly. Solid floors make for easier movement and make the wheelchair simpler to control.

There are lots of other bits and pieces that can be changed, such as light switches at lower levels. Mine are all pull switches, but you must make your own choice.

Just remember, as much as we try to avoid having to use a wheelchair, sometimes it is unavoidable. In that case, just keep in mind it is not a prison. a tool, a mobility aid that will make you wheelchair-enabled.

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Affiliate disclaimer: This affiliate disclosure details the affiliate relationships of MS, Health & Disability at 50shadesofsun.com with other companies and products. Read more.

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50shadesofsun.com is the personal website of Ian Franks, a freelance medical writer and editor for various health information sites. He enjoyed a successful career as a journalist, from reporter to editor in the print media. He gained a Journalist of the Year award in his native UK. Ian received a diagnosis of MS in 2002 and now lives in the south of Spain. He uses a wheelchair and advocates on mobility and accessibility issues.

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Note: Health-related information available on 50shadesofsun website is for your general knowledge only. It is not a substitute for medical advice or treatment for specific medical conditions. I am not a doctor, so cannot and do not give you medical advice. You should seek prompt medical care for any specific health issues. Also, consult a doctor before starting a new diet or exercise programme. Any opinions expressed are purely my own unless otherwise stated.

Disability benefits: Questions remain over timing and complexity

Why, oh why, oh why? This was the title of a hit song (well in the UK anyway) performed by Gilbert O’Sullivan in 1973, but now represents three questions to which we need answers. And by that, I am talking about meaningful answers from a government department responsible for benefits for the sick and disabled.

The UK government´s Department for Work and Pensions (DWP) has much to explain.

benefits

Photo: The Independent

In January, the DWP admitted defeat in its attempts to change the law to make it harder for claimants who experience psychological distress.

But, that was so long ago, so…

Why?

Why has the DWP taken five months to publish its updated guidance for benefits assessors in relation to PersonaI Independence Payment (PIP) and the Planning and following journeys activity.

And, what changes has this updated guidance brought forward? Well, in truth, not a lot.

Benefits and Work’s newsletter explains: “A new paragraph has been added to the guidance for descriptors c), d) and f). 

“These were the descriptors which had the words ‘For reasons other than psychological distress’ unlawfully added to them in March 2017 and which have had to be changed back to their original wording. There have been several other small changes.”

Such minimal changes should not have taken five months to produce the revised guidance. It is ridiculous.

Oh, why?

At the same time, changes have been made to the guidance given to PIP decision makers. Thes address the issue of safety and supervision when planning and carrying out a journey.

But, why have decision makers have been told that claimants who need time to recover after a seizure may not score any points for this in relation to daily living?

This time, the new guidance was prompted by the DWP losing a separate court case. The court ruled that the DWP was wrong to insist that a claimant could only score points for being unsafe if harm was likely to occur on more than 50% of the occasions on which they attempted an activity.

Benefits and Work said: “Instead, the court decided that the decision maker should look at whether there is a real possibility that harm might occur and also at how great the harm might be. The greater the potential harm, the less likely it needs to be that it would happen on any specific occasion.”

Although decision makers have been told that claimants may not score any points for the need for recovery time in relation to daily living, they may score points because they may not be safe outdoors whilst recovering. 

Oh why?

Just why can a claimant, who now qualifies for PIP, not have the original decision to decline the benefit reversed?

This is an example of just such a case, that was given in a lengthy DWP memo for decision makers. This covers changes to guidance on the mobility component, and gives some details of the exercise which has begun looking again at over 1.6 million PIP claims.

The memo explains that, depending on when they were made, some claims will need three different decisions making on them:

  • The first decision will be for the period before the DWP lost a case known as MH, which dealt with the mobility component and psychological distress.
  • The second decision will be from the date when MH applied, 28.11.16.
  • The third decision will be from the date when a decision known as RJ, which deals with safety and supervision, also applied, 09.03.17

Confused? It is complex and may result in more mistakes.

But, what of the example I mentioned? It reads:

“A claim to PIP was made on 4.1.17 (January 4). The DM decided on 1.3.17 (March 1) that the claimant is not entitled to PIP. The claimant applies for MR (mandatory reconsideration) in the light of RJ. The DM looks at the case again and decides that RJ applies. However, the original decision to disallow the claim cannot be superseded on the grounds of error of law because it predates the decision in RJ. Therefore, the DM should give a decision refusing to revise for official error and the claimant should be advised to make a new claim.”

The DWP message is that some claimants who did not get an award but are now eligible will have to make a fresh claim.

Of course, we know that not everyone affected will bother to make a new claim – and others may not realise that they have to claim again to get the PIP to which they are entitled.

When the DWP said it would review 1.6m PIP applications, it didn’t say that it would make life even more difficult for claimants.

Why, oh why, oh why cannot life be made easier?

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Affiliate disclaimer: This affiliate disclosure details the affiliate relationships of MS, Health & Disability at 50shadesofsun.com with other companies and products. Read more.

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50shadesofsun.com is the personal website of Ian Franks, a freelance medical writer and editor for various health information sites. He enjoyed a successful career as a journalist, from reporter to editor in the print media. He gained a Journalist of the Year award in his native UK. Ian received a diagnosis of MS in 2002 and now lives in the south of Spain. He uses a wheelchair and advocates on mobility and accessibility issues.

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Note: Health-related information available on 50shadesofsun website is for your general knowledge only. It is not a substitute for medical advice or treatment for specific medical conditions. I am not a doctor, so cannot and do not give you medical advice. You should seek prompt medical care for any specific health issues. Also, consult a doctor before starting a new diet or exercise programme. Any opinions expressed are purely my own unless otherwise stated.

Banned, but why? Facebook gives no reason


I am prompted to write that, despite an absence of new posts, I am as well as I can be. I have no health problems beyond multiple sclerosis.

Messages have reached me, asking if everything is ok, such as this one:

Hi, it’s (name removed for privacy). Facebook has not had any of your current writings, so I want you to know you are in my prayers.

The absence of my posts was not caused by any personal reasons but was enforced by Facebook itself. I use it to send my posts to groups of which I am a member but, three times in as many weeks, I have been interrupted by a message saying: “You are restricted from joining and posting to groups that you do not manage until (date and time).

No reason is ever given and the powers that be won’t discuss it with you. You can click on ‘Appeal’ but experience tells me not to bother. Why? Because, if you do, no reply is ever received and the restriction, effectively a ban, is just made longer. The fact is simple, Facebook has the ability to do what it likes and we, its users, have no rights to protest or even ask questions. [I feel another ‘restriction’ will be coming for expressing this truth].

Back until banned again

I explained the situation to everyone who contacted me and this was one response I received via Messenger:

That’s awful. I’m technology challenged, but I knew something was wrong. Thanks for letting me know.

I wish you could sue Facebook for discrimination.

God bless you and your family. Stay strong. Thank you for all your hard work.

Right now, I am back and will continue to bring you news and views – until Facebook decides to ban me again.

Whether you have MS or another health problem, if you have a disability, 50shadesofsun.com is here for you. And, there is no greater support you can give than to share my posts far and wide via every social media.

You can also join a Facebook page that I do manage (and so are exempt from any ban), such as 50shadesofsun or Living with multiple sclerosis.

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Affiliate disclaimer: This affiliate disclosure details the affiliate relationships of MS, Health & Disability at 50shadesofsun.com with other companies and products. Read more.

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50shadesofsun.com is the personal website of Ian Franks, a freelance medical writer and editor for various health information sites. He enjoyed a successful career as a journalist, from reporter to editor in the print media. He gained a Journalist of the Year award in his native UK. Ian received a diagnosis of MS in 2002 and now lives in the south of Spain. He uses a wheelchair and advocates on mobility and accessibility issues.

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Note: Health-related information available on 50shadesofsun website is for your general knowledge only. It is not a substitute for medical advice or treatment for specific medical conditions. I am not a doctor, so cannot and do not give you medical advice. You should seek prompt medical care for any specific health issues. Also, consult a doctor before starting a new diet or exercise programme. Any opinions expressed are purely my own unless otherwise stated.

Government withdraws disability benefit legal appeals, at last

A government disability benefits boss has withdrawn another two legal appeals which now opens the door for more claimants to receive the benefits to which they are entitled.

withdrawn

Esther McVey, work and pensions secretary.

The appeals, by the UK’s Department for Work and Pensions (DWP), were withdrawn by the department’s secretary of state Esther McVey MP. Previously, she cancelled plans to challenge a legal judgment, prompting a major review of thousands of decisions about disability benefits cases.

Now, the DWP is once again on the back foot – and claimants are set to reap the benefit.

The department had appealed to the Upper Tribunal and the Court of Appeal after the First-Tier Tribunal ruled that two claimants with chronic conditions were entitled to the Personal Independence Payment (PIP). Ms McVey has now withdrawn both appeals.

Barrister Tom Royston, of Garden Chambers North, represented both the claimants. Since Ms McVey withdrew the appeals, Mr Royston has issued a damning analysis of the cases.

He criticises successive Work and Pensions secretaries for trying to enact and enforce a major change in the law without parliamentary approval.

Appeals cause unacceptable wait for justice

Further, from the dates the now-withdrawn appeals were lodged, the DWP has forced disabled people to wait for a final decision. That’s a wait of two years in one case, and three years in the other.

I can understand that nothing could be done while legal action, the appeals, were pending. But why has it taken so long to withdraw them? One was due to be heard this month. It’s crazy. It’s an unacceptable wait for justice.

Online campaigning journalist Mike Sivier, writing on Vox Political website, said: “Ms McVey, and successive Work and Pensions secretaries before her, has been gambling that her victims – yes, victims; and I think even that is too mild a word – would run out of stamina and let her have her way. It is a classic bullying tactic.”

I agree. The DWP should be ashamed of its actions. Esther McVey should be ashamed she took so long to withdraw the appeals. Prime minister Theresa May and her government should be ashamed of presiding over such a farce.

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Affiliate disclaimer: This affiliate disclosure details the affiliate relationships of MS, Health & Disability at 50shadesofsun.com with other companies and products. Read more.

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50shadesofsun.com is the personal website of Ian Franks, a freelance medical writer and editor for various health information sites. He enjoyed a successful career as a journalist, from reporter to editor in the print media. He gained a Journalist of the Year award in his native UK. Ian received a diagnosis of MS in 2002 and now lives in the south of Spain. He uses a wheelchair and advocates on mobility and accessibility issues.

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Note: Health-related information available on 50shadesofsun website is for your general knowledge only. It is not a substitute for medical advice or treatment for specific medical conditions. I am not a doctor, so cannot and do not give you medical advice. You should seek prompt medical care for any specific health issues. Also, consult a doctor before starting a new diet or exercise programme. Any opinions expressed are purely my own unless otherwise stated.

Government department’s “no information” claim is just a feeble cover-up

A government department responsible for disability benefits has effectively admitted that vital documents were not shown to an expert hired to conduct a review. The papers link its controversial ‘fitness to work’ test with deaths of benefit claimants.

The UK’s Department for Work and Pensions (DWP) claims it has no information about whether the reviewer was shown copies of peer reviews and two prevention of death reports. Of course, if they had been given to the reviewer, the action would have been noted.

no informationIts “The information is not held” response to a Freedom of Information request, I contend, is an admission of guilt. Those of us who have personal experience of the DWP simply won’t be convinced that it is telling the truth. We see it for what it is, a feeble attempt at a cover-up.

Actions are always recorded but any lack of action isn’t – as there is nothing to note. Therefore, ‘no information’ means the documents were NOT shown to the reviewer. And that is unforgiveable.

The FOI request was submitted by the Disability News Service. Its full story can be read here.

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Affiliate disclaimer: This affiliate disclosure details the affiliate relationships of MS, Health & Disability at 50shadesofsun.com with other companies and products. Read more.

* * * * *

50shadesofsun.com is the personal website of Ian Franks, a freelance medical writer and editor for various health information sites. He enjoyed a successful career as a journalist, from reporter to editor in the print media. He gained a Journalist of the Year award in his native UK. Ian received a diagnosis of MS in 2002 and now lives in the south of Spain. He uses a wheelchair and advocates on mobility and accessibility issues.

* * * * *

Note: Health-related information available on 50shadesofsun website is for your general knowledge only. It is not a substitute for medical advice or treatment for specific medical conditions. I am not a doctor, so cannot and do not give you medical advice. You should seek prompt medical care for any specific health issues. Also, consult a doctor before starting a new diet or exercise programme. Any opinions expressed are purely my own unless otherwise stated.

A helping hand so readily offered to wheelchair-users

I never cease to be surprised by the willingness of people to offer a helping hand.

Regular readers will know that, because of mobility problems resulting from multiple sclerosis, I use a wheelchair.

Several times recently when out and about in my wheelchair, while Lisa stayed at home, members of the public have been read to offer assistance.

It is never strange when store staff lend a helping hand but I really don’t expect it from fellow shoppers – but that is what has happened.

a helping handIn a local supermarket, other shoppers have:

  • Unloaded my shopping cart;
  • Helped pack the goods into the bags;
  • Taken my shopping to my car;
  • Placed the bags into my car.

On Friday, I needed to go to the bank. Not a difficult job in most circumstances, even when using a wheelchair – but it is not so easy in our local town, Cuevas del Almanzora. Here, in sunny Andalucía in the south of Spain, we have to overcome problems associated with accessibility ramps.

Access can benefit from a helping hand

They do exist but the engineers who make them often miss the fact that they are supposed to drop down enough to make a smooth transition from road to sidewalk. Here, the ramps often leave a small kerb (curb in American English) to overcome. Then there are thoughtless drivers who park across the ramp, making it useless.

Of course, there are places where accessibility rams just don’t exist. Outside the bank being one such example. So, on Friday, I chose the lowest possible step up and, by tilting my wheelchair backwards, managed it. But a passing motorcyclist stopped and rushed to help – perhaps unnerved by the awkward backwards tilt. Still, he didn’t leave m side until I was safely in the bank.

Returning to my car after venturing out, it is relatively easy for me to place the wheelchair inside but it does require some effort. And that’s why, I am always grateful when a passer-by offers to help. Yes, I could persevere and complete the job by myself and, more often, it is what I do. However, when help is offered, I don’t want to appear rude by turning down their kindness.

My desire for independence does not stop me accepting offers of assistance. Do you feel the same way?

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Affiliate disclaimer: This affiliate disclosure details the affiliate relationships of MS, Health & Disability at 50shadesofsun.com with other companies and products. Read more.

* * * * *

50shadesofsun.com is the personal website of Ian Franks, a freelance medical writer and editor for various health information sites. He enjoyed a successful career as a journalist, from reporter to editor in the print media. He gained a Journalist of the Year award in his native UK. Ian received a diagnosis of MS in 2002 and now lives in the south of Spain. He uses a wheelchair and advocates on mobility and accessibility issues.

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Note: Health-related information available on 50shadesofsun website is for your general knowledge only. It is not a substitute for medical advice or treatment for specific medical conditions. I am not a doctor, so cannot and do not give you medical advice. You should seek prompt medical care for any specific health issues. Also, consult a doctor before starting a new diet or exercise programme. Any opinions expressed are purely my own unless otherwise stated.