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News and Opinions about MS, Health & Disability

DWP documents allegedly destroyed

benefitsandwork logodwp logo a

Unbelievable. In the face of allegations that an undertaking given to a coroner in 2014 has never been followed-up with any action, the UK’s Department of Work and Pensions is unable to provide proof that it did.

The undertaking was given to the coroner in the Michael O’Sullivan inquest; one of the 49 peer-reviewed claimant deaths. In it, the DWP undertook to ‘issue a reminder to staff about the guidance related to suicidal ideation that has been described in this report.’ This was a reference to the six-point plan1.

And why can’t the DWP produce evidence that it did so? Well, according to the ministry, its policy is to destroy memos after one year. That means, it says, that no records exist of the reminder it claims it issued.

Is it me? Or does anyone else find it strange, in these days of electronic communication, that not one trace of it still exists. In the USA, former secretary of State Hillary Clinton deleted tens of thousands of emails on her personal server. Deleted but not gone forever as the FBI recovered them.

Even if the DWP memos have gone forever from the ministry itself, does not one member of staff to whom it was allegedly sent not still have a copy?

I have never known any organisation not to keep records longer than a year. To me, such a notion is just ridiculous.

As evidence that they do remind assessors about the six-point plan, the DWP has provided this extract from a memo sent out 18 months after their pledge to the coroner:

“The current filework guidelines are available in the knowledge library. Current version is 10 and it states: “Where there is evidence of a previous suicide attempt, suicidal ideation or self-harm expressed in the ESA50/ESA50A, the HCP [healthcare professional] must request FME [further medical evidence].”

Is that a good enough response? NO. Does that prove the undertaking given to the coroner was ever followed by the promised action? NO, it does not even mention the six-point plan.

steve donnison_editedBenefits and Work Publishing Ltd (www.benefitsandwork.com) has been leading the fight to get answers as Director and welfare rights campaigner Steve Donnison (pictured) explained: “We have highlighted the link between some of the 49 peer-reviewed claimant deaths and the DWP’s failure to follow its own six-point plan for claimants at risk of suicide.

“We are concerned that the DWP may not have actually carried through on that promise and that some of the 49 deaths might have been prevented if they had. We have repeatedly asked the DWP via the Freedom of Information Act for proof that they issued a reminder.

“The DWP seems to believe that when it comes to claimants losing their lives, it can get away with anything. Establishing the truth is the first step in proving that it can’t – and we aren’t giving up now,” he said.

 

1 Regrettably, I have been unsuccessful in my attempts to discover that the ‘six-point plan’ actually says. If you know, genuinely, I’d be delighted to hear from you.

 

 

 

 

 

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Hotel group bans disability scooters

Disability scooters parked on the pavement.

Disability scooters parked on the pavement.

Able-bodied people are being blamed for hiring and misusing mobility scooters leading to one of the leading hotel chains in Benidorm, Spain, to ban the scooters that are essential mobility aids for people with one or more of a whole range of disabilities.

As I live with multiple sclerosis and use a powered wheelchair, you will understand that this caught my attention.

According to Benidorm All Year Round website, “there is a local bylaw which forbids rental companies from hiring them out to under 55s with no disabilities, they are obviously flouting this.”

Hotel Castilla, one of Servigroup's nine hotels in Benidorm.

Hotel Castilla, one of Servigroup’s nine hotels in Benidorm.

Xavier Gil is Operations Director of Servigroup which has nine hotels in the area. He said: “We have nothing against people with disabilities and all our hotels are adapted to accommodate people who are less mobile. All public areas are accessible, with ramps leading to the bars, restaurants and pool areas in addition to specially adapted rooms for disabled guests.”

Wheelchairs are still allowed for guests that have mobility issues but those chairs must be stored in their own rooms.

Mr Gil added: “The situation with regards to mobility scooters has got totally out of hand and we have had to take action following numerous complaints from other guests – primarily for safety reasons.

“The sheer volume of scooters left in the lobby and reception areas are causing serious problems for both staff and guests, with anywhere in the region of 25 scooters obstructing passageways and exits. There have been countless accidents, with glass panes broken and furniture frequently damaged – and they are running out of room.”

Some tourists with mobility problems genuinely rely on the scooters and feel outraged by what they feel is discrimination by the hotel group. Others agree that there is a problem that needs to be addressed, not just in hotels but in Benidorm itself, one such person said: “This is about the able-bodied hiring scooters when they shouldn’t be using them.”

When asked if other hotels are likely to follow Servigroup’s lead, Antonio Mayor, President of HOSBEC – the local Hoteliers Association that represents 88% of the hotels in Benidorm – said: “No, I don’t think so. We will open our hands out to those guests as it is a necessity for many.”

Interestingly, Servigroup is not a member of the association.

The streets of Benidorm are similarly affected. A Benidorm All Year Round report says: “Only this weekend I saw so many young able-bodied joyriding on them. I can testify that there was nothing wrong with one pair of lads, as I saw them jumping off and on a double scooter.

“But it is not just the young, the over 55s are just as guilty. I have had to walk onto the road many a time to pass as they have been parked up outside bars and cafes, clogging up the pavements.”

I wonder if Benidorm is the only holiday resort that has an issue with the use and abuse of mobility scooters. Do you know of any others?

 

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Back again

Sorry that there was no post on this blog yesterday; it was due to circumstances beyond my control. All being well, normal service will now be resumed.

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Anthem of the Seas in stormy waters

Last month, when Anthem of the Seas was caught by a much stronger storm than was anticipated, I published a blog that was not posted here as I was not a member of this group at that time.

In the light of another Anthem cruise being cut short to avoid bad weather, I thought you might like to read it now.

Just click on this link: http://50shadesofsun.com/?p=1554

 

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Just great to be alive

warfarinsintromclexane Anticoagulants, from left: Warfarin I was taking in UK, replaced by Sintrom in Spain but changed to Clexane by hospital.

Life is wonderful, isn’t it? Ok, I know it could be better but for me it is just great to be alive after, unbeknown to me at the time, I came close to dying less than two weeks ago.

Regular readers of this blog will probably recall two posts – the first about what I thought was multiple sclerosis giving me a kick up the butt and the second about being rushed to hospital with a severe case of hematuria, in other words blood in urine.

Now, apparently, hematuria can vary quite a bit. The blood may be visible or in such small quantities that it can’t be seen with the naked eye. But if there’s enough blood in the urine that it appears pink or red or has spots of visible blood, it is categorised as ‘gross hematuria’.

As my urine looked like pure blood, though it obviously wasn’t, gross hematuria was the diagnosis and this can indicate one of a number of potentially nasty illnesses. In my case, however, it was quickly traced to an anticoagulant medication I take for a heart condition. This had suddenly caused my blood to go very thin and create a bleed into my bladder.

Patients taking anticoagulant medications, probably the best known of which is warfarin, have their blood tested regularly for the level of what is known as INR. It is a measure of blood clotting. Someone not on such treatment usually has an INR of around 1.0; on the medication, doctors are usually looking to achieve figures of 2.0 to 3.0, maybe 3.5.

However, any INR reading above 5.0 is regarded as dangerous and in need of corrective treatment while at 9.5 it becomes life-threatening – meaning that the patient could bleed out, literally bleed to death.

In my case, you can forget the dangerous 5.0 and the life-threatening 9.5. My first INR test in the hospital was a staggering 19.95 – not that I found out straight away. I suppose no-one wanted me to know just how bad things were.

Still, thankfully they knew exactly what they were doing. I very quickly found myself confined to bed, attached to a heart monitor and two drips. My bladder was washed out continuously for nearly two days and my INR was brought back under control. In fact, just two days after I was taken into the emergency unit, my INR test showed the level was down to 1.27 before I was discharged.

IMG_0794_edited_edited_editedThat was on Sunday, 10 days ago. Since then, I have been building up my strength. It was difficult to eat much at first but this has gradually improved although it’s not back to normal yet. In myself, I feel a lot better but am still aware that there is a way to go yet.

But, having had such a close brush with the great reaper, I am just grateful to be alive. Yes, I have multiple sclerosis; yes, I have a heart condition; and yes, I use a wheelchair – but so what? I am alive and plan to stay that way.

Through all this, Lisa (pictured left) has been so loving and supportive. It turns out that she knew just how bad things were but kept it to herself and hid her worries and tears from me. Truly, she is the love of my life; amazing, devoted, my gift from the stars.

 

 

 

 

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Referendum blues …

 

Remain: David Cameron versus Leave: Iain Duncan Smith

Remain: David Cameron versus Leave: Iain Duncan Smith

Prime Minister David Cameron has been warned to stop making blue-on-blue attacks on Conservatives who want the UK to leave the European Union, or face the possibility of a leadership challenge. Well, if the Leave campaign wins the referendum on June 24, his position will be untenable anyway – after all, he was the one who promised the referendum in the first place.

  • With Iain Duncan Smith, the Secretary of State for Works and Pensions, being so hated by disabled benefits claimants, is it wise for him to so publicly back either side? It seems to me that his open support for the Leave vote could prompt a massive Remain vote from those opposed to his welfare cuts. After all, they might be worried about how much worse things could get outside Europe.
  • A miscalculation? The Conservatives have announced plans to give British citizens ‘votes for life’, wherever in the world they choose to live; instead of just for the 15 years allowed now. There are millions of British Expats living in Europe, many without a vote under the current rules, who would almost all vote to Remain. Why then, did Cameron not make sure they got their ‘votes for life’ before the referendum? He lost a lot of votes by not doing so.

Just a few random thoughts!

 

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Norwegian Fjords

 

On the Lysefjord

On the Lysefjord

Since Ian cannot post tonight, I thought I would share with you a blog I wrote about 3 years ago.

There are few things more majestic than a scenic ride into the Norwegian Fjords by boat. First, you pass through little villages, then as the fjords begin to tower above you on either side you see the splendour of what you are there for. This spectacle rises so dramatically out of the water and walls you in with their beauty. As you pass further into these giant natural formations, you come upon water falls flowing into the water and creating pools of foam. Still further into the fjord as the walls at your sides become closer you will not feel that they are closing in on you. You will be in awe with nature. In these waters, you may encounter seals along with goats on the shore. No matter how bad the weather, you feel like you are a part of nature for this portion of your life. This is Lysefjord! On a cliff six hundred metres above you there are hundreds of people looking down on you. Some will climb up this rock named Preikestolen or Pulpit Rock as it is called. As you go further along, there is another formation which appears to be a boulder in between two cliffs. This boulder, named Kjeragbolten – Kjerag for short, rises one thousand metres above the water. There are many adventurers who jump onto this boulder between cliffs. An adventure not to be missed.

Inside Geirangerfjord

Inside passage of Geirangerfjord

Another not to be missed sight is Geirangerfjord. There are two very important ways to see this fjord. First is by boat, second is a tour up the eagle road with its eleven hairpin turns. Try to do both if you have time. Coming along the fjord, as the water narrows, you will pass quaint villages and little hamlets with many brick red homes. You will wonder why you don’t live in one of these homes with so much beauty surrounding you. You will pass by several waterfalls, one being known as ‘the bridal veil’ and one of the other important ones of note is ‘seven sisters’. Both of these falls are quite picture worthy. As a matter of fact, this fjord is so picturesque that it is now a Unesco world heritage site. If you are more into the adventurous feeling this fjord can give you, then make sure you kayak on Geirangerfjord. After you come back out of Geiranger and its beauty, make sure you hop on a bus going up the eagle road. There are many photo spots of the fjord below as you climb by coach.

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Multiple Sclerosis posts in January, did you miss any?

 ms not aloneHallamshire%20web%20readykate3_editedms  montage

Did you see ALL of my MS-related blog posts during January? To help you check, here is a list of them, along with links to help you catch up on any you may have missed.

Kate’s MS seizure video gets thousands of views    http://50shadesofsun.com/?p=1429

MS seems affected by sun; great prescription service    http://50shadesofsun.com/?p=1424

Have MS? Don’t give up, join a support group   http://50shadesofsun.com/?p=1419

Our car is coming back – today!  http://50shadesofsun.com/?p=1416

HSCT and other posts and pages you may like to read  http://50shadesofsun.com/?p=1399

Opinions are divided over suitability of stem cell transplants as treatment for progressive MS 

http://50shadesofsun.com/?p=1371

Why me? Maybe I have my answer    http://50shadesofsun.com/?p=1359

Can Multiple Sclerosis be stopped? Maybe SOME can (Panorama programme)    http://50shadesofsun.com/?p=1347

Disturbed nights: a frequent problem with MS    http://50shadesofsun.com/?p=1332

MS: Symptoms vary and can be hidden from view    http://50shadesofsun.com/?p=1281

There are plenty of other posts as well as permanent pages too. You can view them all at www.50shadesofsun.com

 

 

 

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Same-sex marriages threaten Anglican church split

Shield_of_the_US_Episcopal_Church.svg Anglican_rose.svg    The shield of the Episcopal Church of the USA and, right, the rose of the Anglican Communion.

It’s liberal view on the seemingly still religiously controversial topic of same-sex marriage has landed the US Episcopal Church, the Anglican church in America, in trouble with the fellow members of the Anglican Communion and has resulted in the American church being barred from joining any of the Communion’s decision-making bodies for three years.

This effectively ostracises the US church that, in 2003, was the first within the Communion to ordain an openly-gay bishop and last year passed a resolution to allow its clerics to perform same sex marriages.

A statement from those church leaders taking part in the meeting in Canterbury, UK, said that the US church should “no longer represent us on ecumenical and interfaith bodies, should not be appointed or elected to an internal standing committee and that while participating in the internal bodies of the Anglican Communion, they will not take part in decision making on any issues pertaining to doctrine or polity”.

The Anglican leaders said the Episcopal Church’s approval of gay marriage was “a fundamental departure from the faith and teaching” of the majority of Anglicans.

But one British MP, himself a former curate and youth chaplain, is so disgusted by the decision that he has now ´given up´ on the Anglican church.

Chris Bryant, Labour MP for Rhondda, Wales, took to social media to say: “I’ve finally given up on Anglican church today after its love-empty decision on sexuality. One day it will seem (as) wrong as supporting slavery.”

And speaking to the BBC, he went on to say: “The whole point of the Anglican communion is that we agree in the autonomy of its churches. I think we’ve behaved disgracefully to the American church. This is the established Church of England taking a stance against homosexuality.

“Church leaders should read the Bible – Jesus’s message was not one of hatred and division, but one of peace and understanding.”

So, where do other faiths stand on the issue of same-sex marriages?

A look at this table shows the attitude of most Christian churches and other religions in the USA:

ssm

As you can see, most are in favour of allowing same sex marriages.

Regretfully, Pagans have been omitted from this table but I can tell you that the various faiths that are collected under the Pagan umbrella do not discriminate against the LGBT community. To us, a loving couple is just that, a loving couple, however it is comprised.

The decision of the Anglican Communion to criticise and partially exclude the US Episcopal Church for taking a decision with which it disagrees, but that even the Archbishop of Canterbury agrees it was entitled to make, is little to do with faith but is rather a political move to head off a potentially damaging split in the Anglican church worldwide.

Is that justification enough? I’ll let you decide.

 

 

 

 

 

 

 

 

 

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Strange British-led tradition of Boxing Day holiday

 

 

 

Today, Boxing Day and its promise of bargains in the sales bears no relation to the day’s origin.

 

In some countries, notably Britain and those in which it has historically had a major influence, today is Boxing Day. And, Being British, it seems peculiar to me that the Boxing Day public holiday that I have known since birth is, in fact, only recognised in a few countries and is generally unknown worldwide. On the other hand, being American, Lisa is unfamiliar with it.

Boxing Day is a secular holiday that is traditionally celebrated on December 26 – which is also St Stephen’s Day, a religious holiday in some, mainly catholic, countries. They, however, do not include Spain where Boxing Day is not a national holiday. Only two of the country’s 18 autonomous communities recognise St Stephen’s Day/Esteve as a holiday. These are Catalonia and the Balearic Islands that include Majorca, Minorca, Ibiza and Formentera.

Similarly, the day is not an American-wide celebration. December 26 is given as a holiday to state employees in the states of Kansas, Kentucky, North Carolina, South Carolina and Texas but it is not known as Boxing Day.

Today, the day has become more about grabbing a bargain on the first day of the sales, similar to the USA’s Black Friday following Thanksgiving but the origin of Boxing Day is interesting as various competing theories exist.

The Oxford English Dictionary says the earliest use arose in England in the 1830s, defining it as ‘the first weekday after Christmas Day, observed as a holiday on which postmen, errand-boys and servants of various kinds expect to receive a Christmas-box’. However, the term Christmas-box dates back as far as the 17th century.

Traditionally, it was a gift or gratuity given at Christmas. In Britain, it was a custom for tradespeople to be given ‘Christmas boxes’ of money or presents on the first weekday after Christmas as thanks for good service throughout the year. Indeed, this is mentioned by the famous diarist Samuel Pepys in his entry for December 19, 1663.

This custom seems to be linked to an older English tradition when servants would have to wait on their masters on Christmas Day, and on the next day were allowed to visit their families. The employers would give each servant a box to take home containing gifts, bonuses and sometimes leftover food.

In continental Europe, a long tradition of giving money and other gifts to those who were needy and in service positions, has existed since the Middle Ages. This may have come from the Alms Box placed in areas of worship to collect donations to the poor. Alternatively, it may have originated from a custom in the late Roman/early Christian era, when metal boxes are said to have been placed outside churches to collect special offerings tied to the feast of St Stephen which, as I said earlier, falls on the same day as Boxing Day, December 26 – although, when that is at the weekend, the holiday is moved to the next available weekday.

 

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