Benefits, Brexit effects, and a much-criticised knighthood – all thanks to Boris

December’s general election in the UK proved to be a resounding success for the Conservative party. It gained an overall majority of 80 seats, allowing prime minister Boris Johnson to ride roughshod over all opposition.

This is a disaster.

boris johnson

Boris Johnson, UK prime minister.

It presents all kinds of problems for the UK itself, such as government benefits for people with disabilities as well as others in need. Then there’s the risk of tariff barriers that British industries fear, and say that they would likely lead to increased prices in the high street.

Similarly, the European Union, minus the UK, is facing an ongoing battle with Boris Johnson’s team for a trade deal. It also wants various European regulations to remain in place in the UK, but some of these have been rejected by the British government.

Indeed, chancellor of the exchequer Sajid Javid has said there would be no alignment with EU regulations once Britain’s exit from the European Union is made official.

Interviewed by the UK newspaper the Financial Times, he said: “There will not be alignment, we will not be a rule taker, we will not be in the single market and we will not be in the customs union – and we will do this by the end of the year.”

His remarks indicate a significant move away from former PM Theresa May’s deal with the EU. In that, she proposed a close alignment with the EU, to try to reduce trade friction at the border.

Complicated and time consuming

Of course, there are many countries outside the EU – many of which, including the USA, will be targeted for trade deals by the UK. Such deals are complicated and time consuming to negotiate. They present problems to both parties.

Moving to the UK itself, there are continuing issues involving government benefits. Just take a look here:

  • Almost half of DLA (Disabled Living Allowance) claimants have had their benefit stopped or reduced when they transferred to PIP (Personal Independence Payment).
  • Fewer than one in three new PIP claims succeed.
  • Of those that do succeed, most new PIP awards last less than two years.

On the positive side, success rates for ESA (Employment and Support Allowance) and PIP appeals by unsuccessful applicants continue to rise. What’s more, nearly 6 out of 10 new ESA claimants are put in the more advantageous support group.

And, of course, the government is pressing ahead with the rollout of the oft criticised, and some would say discredited, Universal Credit.

iain duncan smth

Iain Duncan Smith MP.

Lastly, many claimants, welfare specialists, and opposition politicians have voiced their disgust that former Department for Work and Pensions secretary of state Iain Duncan Smith is to be knighted.

He oversaw and championed the launch of Universal Credit.

 

 

 

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go fund meTo help me meet the costs of a wheelchair accessible vehicle and the hospital care, I have started a Go Fund Me page. Please help by making a donation, however small, HERE.

Thank you

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Our trip to hell and back! Really? Back?

nightmareHi everyone, sorry it has been so long since I last wrote but what started as a dream vacation two months ago, turned into a nightmare. A nightmare that has not yet finished.

It will take me more than one post to let you know what happened. For now, I’ll just give you a brief summary. More details will be given in further posts in the next few weeks.

It all started about a week before my wife Lisa and I were due to leave. We could smell gasoline in our car when it was idling, so we took it into our local repair shop. Two days later, the bad news arrived. The car needed a new engine.

We are on first name terms with the boss, so when he suggested our car be scrapped – that is exactly what we did. Then, and now, there’s not enough money in our bank to replace it. We are stuck at home. We are in the country, nearly a mile from the main road but even there, there is no bus service. And our nearest town is a good 20€ taxi ride away. A car of our own is essential.

Holiday dreams dashed

Anyway, back to our vacation.

We had already pre-booked a ride to the airport. He was an hour late, great start.

Flight one, no problem, but flight two was delayed. This meant missing our connection and having to take a replacement flight the next day.

Flight three went without a hitch. Phew, we were in Los Angeles.

We stayed in LA for almost a week, but we didn’t visit anywhere or take a tour, as we had planned, for reasons I’ll explain in another post.

That Sunday, we flew to San Diego and boarded our cruise ship, the Carnival Miracle. That turned out to be the worst cruise of our lives!  Watch here for more details.

Back in San Diego after the 7-day trip, we had a one-night stay in a hotel. The next morning, I was rushed to hospital by ambulance. Instead of going home, I was set for five days in hospital – and, not having travel insurance, now face a bill of nearly $40,000 .

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go fund meTo help me meet the costs of a wheelchair accessible vehicle and the hospital care, I have started a Go Fund Me page. Please help by making a donation, however small, HERE.

Thank you

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Birthday presents: True diagnosis and a possible treatment

It was a strange day, well, certainly out of the ordinary!

I am talking about last Friday, November 8, 2019. First of all, it was my birthday (yep, now 67, getting on a bit) but it was also the day I had to see my neurologist for my regular MS check-up. Not the day I would have chosen for the appointment, but it was definitely one I couldn’t forget.

Prior to the trip to see the doctor, I had undergone a new MRI scan, and the full range of blood and urine tests.

The MRI scan confirmed that the lesions in both my brain and spinal cord remain inactive, as I was first told by Dr Fedorenko (pictured, left) in Moscow three years ago.

Laboratory tests on blood and urine proved to be normal – a description of me that my ever-loving wife Lisa finds somewhat unbelievable – with even vitamin D having recovered from ‘deficient’ to ‘sufficient’ with the help of supplements that the Spanish neurologist had previously prescribed.

We discussed my current abilities and disabilities, she asked me to demonstrate my leg and arm movements, and then she said I could have treatment to stop further deterioration but emphasised it would not do more than that.

Hospital Torrecárdenas, in Almería, where my neurology appointment took place,

Wait, what? For the very FIRST time since MS was diagnosed in April 2002, I was being offered a treatment which could slow its progress.

So, what was being suggested? Her first choice was Rituximab but I was unhappy as I know it has a high risk of unwanted side effects. Her second choice was Imurel (azathioprine), an oral medication more commonly used against lupus. I have not started that yet, so we’ll have to see where that goes.

Why such a long wait?

The question that remains is why it has taken more than 17½ years for me to be offered any MS treatment instead of just medications for pain, urine control and the like.

Well, let’s look at that!

Back in 2002, in the UK, the diagnosing neurologist said I had benign MS. Of course, back then I didn’t have the knowledge I have today. So, I didn’t know then that ‘benign’ is not a true type of the disease.

After three or four visits to the neurologist, he referred me to an MS specialist nurse, assuring me that Andy, the nurse, would arrange a neurologist appointment if I wanted one.

Visits to the nurse generally took the form of “why are you here?”, not a great start. Eventually, I asked to see a neurologist again but was told: “You had RRMS (relapsing), now you have SPMS (secondary progressive), there is no treatment, you don’t need to see a neurologist. He can do nothing for you.”

And that was that, except to say that the MS nurse is no longer in that position!

Later, while writing for Multiple Sclerosis News Today, I interviewed Dr Patricia Coyle (pictured, left) for an article for my column in the web-based digital publication. Dr Coyle is the Founder and Director of Stony Brook’s MS Comprehensive Care Center, in Stony Brook, Long Island, New York. She has several decades of experience with nervous system immune-mediated and infectious disorders. She has been involved since medical school with patient care and research focused on MS.

Anyway, with the interview over, we chatted about MS and she asked me about the symptoms I had experienced along with other probing questions. After all that, and without access to any of my records or test results, I could not expect her to make a diagnosis. However, she said from what I had told her, she believed I had PPMS (primary progressive MS).

That being said, on Friday I asked the question. What type of MS do I have? My neurologist, who does have my health records, replied without hesitation. “You have primary progressive,” she said.

So, it was a day when I finally found out my true diagnosis and was offered treatment for the first time. If not strange, it was certainly an extraordinary day.

50shadesofsun.com is the personal website of Ian Franks. 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. More recently, he was a freelance medical writer and editor for various health information sites. 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.

Pathetic government causes laughter and pity, it’s time to go

Sitting here alongside Lisa, in our home in southern Spain, I watch the political shenanigans in the UK over Brexit with both amusement and pity.

Amusement, because of the knots into which politicians contrive to tie themselves, and pity for residents of the UK who deserve a government that is fit for purpose. Unfortunately, events show that it isn’t.

And that goes much deeper than issues surrounding Europe. Those of us who have disabilities are well aware of this government’s shortcomings.

The latest wheeze of its Department for Work and Pensions (DWP) is to introduce what are referred to as ‘text box tribunals’.

The idea behind it, supposedly, is to make life easier for claimants. Documents available online and use of video-conferencing for benefit appeals would, in theory at least, save claimants from the need to make long trips.

In reality, however, it is about cutting costs, and providing another obstacle for claimants to navigate before reaching an oral hearing.

Steve Donnison, director of Benefits and Work Ltd, explains: “Under the new Continuous Online Resolution (COR) system, soon to be piloted, most PIP (Personal Independence Payment) and ESA (Employment and Support Allowance) claimants who appeal a decision will have their case looked at by an online tribunal panel.

How online panels will operate

“The panel will review all the documents relating to the appeal and will then ask the claimant any further questions they think may be relevant. The claimant is given a deadline to respond to these questions. They do this by typing directly into text boxes in their Tribunals Service account dashboard.

“Once the text box tribunal has all the information it thinks it needs, it gives the claimant its decision.”

Claimants who do not agree with that decision, will still have the right to have their case heard at an oral hearing.

Donnison continues: “The new system will not allow the (online) panel to ask nearly as many questions as they would at an oral hearing.

“It will also not give the panel the chance to meet the claimant and form an opinion about their reliability as a witness. In the vast majority of oral hearings, panels have a high opinion of the claimant’s credibility.

“The success rate for paper hearings is dramatically lower than for oral hearings. Text box tribunal results will almost certainly fall somewhere in the middle.”

That would mean many thousands of claimants will have to endure a claim, a mandatory reconsideration and a text box tribunal before they can get to an oral appeal.

The appeal process was long enough already – now this “easier” online tribunal is just an extra step in the disgustingly long-drawn-out ordeal process.

I fear that not many claimants will manage to cope with it. At least that will be good news for the DWP and the Tribunals Service – just not so good for the rest of us.

This government is incapable of managing anything. Whether it is Brexit, disability benefits, or Universal Credit (don’t get me started), just to name a few,. There is chaos and pandemonium. The government is unable to govern. It is time for Theresa May and her pathetic cohorts to go.

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50shadesofsun.com is the personal website of Ian Franks. 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. More recently, he was a freelance medical writer and editor for various health information sites. 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. Ian is not a doctor, so cannot and does 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 his own unless otherwise stated.

Late night police visit to pick me up

Police on your doorstep late at night is never a good sign. If their business cannot wait until the morning, it must be serious, right?

And, so, it happened. Just before midnight, a car pulled up and two uniformed officers came straight to our house.

No, we had done nothing wrong – they didn’t want to question us… or worse! There had been no accidents involving family or friends – they were not bringing us sad news. So, why were they here?

Well, as silly as it sounds, they had come to pick me up ……. off the floor.

You see, I had slipped while transferring from the sofa to my wheelchair, and ended up on the floor.

Despite continued and varied attempts on my part, I was unable to get up – so called 112. This is the emergency number here in Spain, equivalent to 911 in the US and 999 in the UK.

The operator was attentive, reassuring, and efficient. He listened to the facts, understood I have esclerosis multiple (multiple sclerosis), and, after ascertaining that I wasn’t injured and did not need medical assistance, said help was on the way.

And, just 15 minutes later, two Local Police officers arrived to pick me up. This they did quickly and effortlessly and were both courteous and friendly.

Talking of police in Spain, perhaps I should point out that we have three forces – the Guardia Civil, the Policia Nacional and the Policia Local.

The Guardia Civil (Civil Guard) is Spain’s conventional police force which is organised along paramilitary lines and controlled by the Ministry of the Interior. The Guardia has wide ranging responsibilities for national law enforcement and have the resources, powers and facilities of a normal police force. The Guardia Civil polices rural areas and smaller towns as well as the country’s highways.

The Policia Nacional (National Police) is the urban police agency of Spain. They are under the sole authority of Spain’s Ministry of Interior. Like the Guardia Civil it is a conventional police force, that polices cities and larger towns. It is also responsible for border security and issues residencia certificates for anyone wanting to become a resident in Spain and the essential national-registry identification number (NIE). It also undertakes the security of the Spanish royal family and the government. 

Policia Local (Local Police) is the force that is controlled by the relevant regional or local authority. It does not investigate crime but deals with minor matters. These include parking, local traffic control, bylaw issues, and, of course, picking me up off the floor. 

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!

Government gagging clauses attempt to silence critics

“I don’t believe it” was the catchphrase of Victor Meldrew (pictured right) in the BBCtv sit-com One foot in the grave. It signaled his frustration with elements of life today. However, although feeling equally exasperated as actor Richard Wilson’s character, I really DO believe it.

It is another example of overreach, so typical of UK Conservative governments. But believing it is a long way from accepting it.

It is clearly not acceptable that some 22 charities and companies, that are paid government cash, to have had to sign so-called “gagging clauses”. These are said to prevent them from criticizing the government’s Department for Work and Pensions (DWP), its political bosses, and the new Universal Credit (UC) benefit.

The much-criticised UC is being rolled out across the country to replace six means-tested benefits and tax credits paid to working-age claimants. These are: income-based Employment and Support Allowance, Income Support, income-based Jobseeker’s Allowance, Housing Benefit, Working Tax Credit and Child Tax Credit. These are typically paid to people with disabilities and others who are often seen as vulnerable.

News of the gagging clauses were revealed by investigative journalists at The Times national newspaper, in a report last week. Since then, the remainder of the Press has followed suit.

The gagging clauses amount to a disgraceful and repugnant act of censorship that has no place is a democratic society. And the Press’s calls for the clauses to be removed have now led to a similar demand from the main opposition, the Labour party.

Gagging: Call for Commons statement

Shadow work and pensions secretary Margaret Greenwood.

Labour’s shadow works and pensions secretary Margaret Greenwood has critcised the clauses – and called for them to be removed.

In a letter to the Conservative government work and pension secretary Esther McVey,Ms Greenwood has requested (really, demanded) a statement be made to the House of Commons. A statement that, she says, should explain the reasons for the gagging clauses, as well as announce their immediate removal.

She wrote: “I am asking that you come to the House of Commons to explain the original rationale behind these gagging clauses and to publicly announce that they will be removed by the Government.” The full text of Ms Greenwood’s letter can be read here.

I delayed writing about this, in the hope that the government would make a statement and remove the gagging clauses. But now, it’s halfway through the following week and there has been no response to this demand.

Earlier, the DWP had denied that the organisations were banned from criticising UC and said the clauses protected commercially sensitive information.

At that time, a spokeswoman said: “As with all arrangements like this, they include a reference which enables both parties to understand how to interact with each other and protect their best interests.”

 Yeah, right. That response to media  enquiries fails to address the facts, and ignores the issues involved. As if we accept that. Certainly, the Press and Labour’s Ms Greenwood don’t – and nor should they.

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50shadesofsun.com is the personal site of Ian Franks, a digital journalist and former 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.