UA-79233833-1

50shadesofsun

News and Opinions about MS, Health & Disability

Home from Moscow, strangely contented

Yesterday was a long and tiring day, returning home to the sunny and south of Spain from the colder temperatures found in Moscow.

With the help of two members of the support team, I left the hospital at 7am, which was 6am in Spain, eventually getting home at 10.30pm. Believe me, 16½ hours of travelling and layovers is a tiring experience which is probably why it was gone midday before today woke me from my slumbers.

Being in Russia, in the AA Maximov HSCT clinic, was an experience I am glad to have had, but nothing comes up to the delight brought about by being home again. Home with Lisa, the love of my life.

In the clinic, bonds are quickly established between patients at various stages of the process and, even though only there for assessment, I immediately found myself welcomed as one of the community.  And I now have new Facebook friends so we need never lose touch.

MRI brain scan. This is a stock picture,not one of mine,

MRI brain scan. This is a stock picture,not one of mine.

Several people have sent me comments since my assessment result was revealed – that I would not be accepted to have HSCT. Some have said how sorry they are that I cannot have the treatment; others have expressed their pleasure that the MRI scans showed that my lesions are inactive and that my future is looking good according to Moscow’s Dr Fedorenko.

So, how do I feel? Strangely, contented.

The fact that my lesions, which exist in both brain and spine, are inactive is great news in itself. And to have Dr F tell me that my prognosis for MS is no, or in the worst case very slow, progress is something that I had never dreamed could happen.

So, in short, I am in a good position.

On top of that, I had so many checks on various internal organs that I know now exactly what is wrong in much more detail than before.  The scans, x-rays and other tests – also show that there is nothing unwanted, nothing that should not be there.

new strap

50shadesofsun.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.

2 Comments »

Unfair PIP assessments are disgraceful and scandalous

Translate

Personal Independence Payment (PIP), a UK disability benefit, was refused totally last week to a guy whom I knew at school in the 1960s. He is a private man and doesn’t want a fuss. He is just getting on with seeking a reconsideration before, if needed, launching a full appeal.

It’s just not right, he was receiving Disabled Living Allowance (DLA) and has got no better. In fact, he had a home assessment. No-one contacted his doctor and, he says, the assessor seemed more interested in getting away than doing her job properly. This is a scandalous way to treat people who have disabilities.

Then, yesterday, we heard of another man with a similar case. The Northern Echo told the story of a man with learning difficulties suddenly being told he is fit to work.

‘The government doesn’t care about people like me’, says Edward West, of Darlington, who has been considered unable to work for the entirety of his adult life..at the age of 44, he must now look for full time work within an hour’s commute after the Department of Work and Pensions unexpectedly declared him fit for employment.

The Northern Echo takes up the story:

Mr West lives in sheltered accommodation, has significant learning difficulties and needs the support of a carer several times a week.

The vulnerable man struggles to cope in unfamiliar situations, has mental health issues and says anxiety and distress would make a daily commute, long hours and interactions with colleagues impossible.

Edward West (Picture: The Northern Echo).

Edward West (Picture: The Northern Echo).

However, after attending his first Work Capability Assessment without professional support, he failed to score enough points to be eligible for ESA (Employment and Support Allowance).

Following a face to face assessment, a report was issued saying Mr West would need somebody with him to travel to unfamiliar places but was otherwise fit to work.

The report cited his ability to get to his GP, time spent socialising with his brother and a perceived lack of anxiety at the assessment.

It is believed the DWP did not contact Mr West’s GP or consider medical records before making a decision, expecting him to have contacted them for evidence to support his claim.

Mr West now claims Job Seekers’ Allowance (JSA) and must look for full-time work within a 60 minute commute or risk losing benefits.

An emotional Mr West said new “box-ticking”, point-scoring disability assessments mean people like him are falling through the gaps.

He said: “They didn’t speak to my GP or social worker and didn’t listen to me. The system should be scrapped, they didn’t look at my records or my past, just judged me on what I said that day. I cried when I found out and I’m really frightened, I don’t know what to do.”

Assessments like these are a disgrace ad it’s no wonder that 50 – 60% of people in this position go on to win their appeals.

 

 

MSNT strapline copy

 

 

 

 

 

 

 

No Comments »

Stem cell clinical trial is real, not ‘false hope’

stem cell therapy_edited

This blog’s story about the outcome of the long-term clinical trial of stem cell therapy was deleted from one Facebook group on the grounds that it did not wish to allow anything that would give its members ‘false hope’.

Actually, nor do I.

That is why, writing both in Multiple Sclerosis News Today and here, I very carefully kept to the findings as published in The Lancet, plus comments made afterwards.

The fact is that this was the first long-term clinical trial of the same procedure as used today in major HSCT clinics worldwide. It was a small trial but that was acknowledged by the researchers who said a larger trial was necessary.

I purposely did not say, as many journalists did, that scientists are close to finding a cure. Theaustralian.com.au said ‘Multiple Sclerosis cure very near’ while thetimes.co.uk said ‘Scientists close to a cure for multiple sclerosis’. That was not a statement made in the study’s report, nor was it claimed afterwards. I can see little justification for headlines mentioning a ‘cure’. Just one doctor, a stem cell biologist not involved in the trial described it as ‘close to being curative’.

HSCT or, more correctly, aHSCT has never been claimed to be a cure. Despite some notable anecdotal tales of the disease being reversed in some people, the therapy has only ever been claimed to stop MS progressing; to stop it getting worse.

And that is what the clinical trial proved. It said relapses were halted and MRI scans showed no new brain lesions.

The word ‘cure’ was not mentioned in the report of the trial, nor in my story about it.  So, no false hope there!

It is a shame that members of one FB group were denied the opportunity of seeing my fair and objective article on this issue.

Now, if I had wanted to court controversy or talk about ‘false hope’, I could have written about CCVI and its supposed link with MS, which is unsupported scientifically. The whole issue of CCVI still divides opinion and is, at best, unproved by any clinical trial that meets accepted standards. That may change in the future. Who knows?

 

MSNT strapline copy

 

6 Comments »

Wheelchairs enable users and restore independence

Out and about independently in his wheechair

Out and about independently in his wheelchair.

Surfing the internet, for want of something better to do, I came across the old but now outdated expression ‘wheelchair bound’.

It was in an article about MS published by Medical News Today in which Honor Whiteman wrote: “According to the National Multiple Sclerosis Society, around two thirds of people with MS retain their ability to walk, though many individuals may require the assistance of a cane or crutches to get around. In severe cases, some patients may become wheelchair bound.”

And it cannot be classified as an ‘old’ story, having only been published on January 27 this year.

For everyone who uses a wheelchair, whether always or only part of the time, I feel compelled to speak out. We are not ‘wheelchair bound’ nor are we ‘confined to’ them. Wheelchairs actually increase our ability to get around. They enable us, even empower us, to go to a variety of places and do different things. What’s more, self-propedd manual wheelchairs or electric powered ones that we can control ourselves give us both independence and freedom that would otherwise be denied to us.

So, please, don’t describe us as ‘wheelchair bound’, instead consider us as ‘wheelchair users’; maybe even ‘wheelchair enabled’, or is that a step too far?

Speaking about what to say when talking or writing about people with disabilities, let’s start right there. You need to know that, most of us don’t want to be termed as disabled people. We are people first; our disabilities are secondary.

Similarly, I have MS but I don’t suffer from it, nor a victim of it. Instead, I live with it. Whatever disability anyone may have, they are not sufferers or victims.

Some may regard this as political correctness but, really, it isn’t. It is just good manners to recognise that we are more important than our disabilities.

Everyone has different likes and dislike; as well as differing opinions. And, strange as it may seem, in this respect, people both with and without disabilities are the same.

For example, the UK has long ado dispensed with the word ‘handicapped’ and now uses ‘disabled’. In USA and Canada, the term ‘handicapped’ is accepted and widely used although in the States the law relating to rights etc is called the Americans with Disabilities Act. Hotels tend to describe their accessible rooms as ADA rooms.

Purely, personally, while preferring the use of ‘disability’, I think ‘handicap’ should be equally acceptable. I doubt that the time will ever arrive when the use of ‘differently-abled’ will ever come easily to me. It smacks so much of the political correctness that is so detestable to me.

 

 

MSNT strapline copy

 

1 Comment »

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.

 

 

 

 

 

No Comments »

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?

 

2 Comments »

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.

No Comments »

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

 

No Comments »

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.

 

 

 

 

No Comments »

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!

 

1 Comment »