Paul pays tribute to dedication of staff as he prepares to leave Moscow HSCT centre

Although I have taken a break from writing during August, I just had to catch up with Paul Morrison who, earlier this month, travelled to Moscow to undergo HSCT for multiple sclerosis. The exact type of the disease is a matter of opinion, his neurologist says Paul has SPMS, but tests in Moscow indicate a diagnosis of RRMS. I know who I’d believe.

He is now approaching the end of his treatment and is set to return home next Tuesday, September 4.

dedi.cation

Paul in Moscow during the early stages of HSCT.

In the last three weeks, he has had his stem cells collected and stored, had chemotherapy to suppress his immune system, had his stem cells returned, and spent some days in isolation.

Of course, there’s more to it than that, they are just the high points. One vital part is the battery of tests carried out before the therapy can begin. And, in Paul’s case, thereby hangs a tale.

Paul explains: “They found 27 more brain lesions than my neurologist (at home), and a lesion blocking over 50% of my spinal cord.

“I have had a separate appointment with neurologist while in Moscow. And he said I am lucky that the nerve endings are not dead. This means I will have a  very good chance of regaining my walking function.”

Tribute to dedication

That such a discovery, was made in Moscow is a great tribute to the professionalism and dedication of Dr Dennis Fedorenko and all his team.

And that’s a view shared by Paul. Summing up his time in Moscow, he said: “From the cleaners who keep our rooms spotless and our spirits high, the nurses who take the extra time to make all the procedures so painless, to the doctors who have more dedication than I have ever experienced. Not to forget Anastasia Panchenko. And to have a protocol that is absolutely amazing.”

dedication

Claire Morrison.

Claire stayed at home with their three children and is looking to the future with hopeful anticipation. She said: “it has been a long hard road but we can finally start to see light at the end of the tunnel. It would not have been possible without the generous donations from family, friends, and strangers. Their kindness has overwhelmed us.

“Charlotte, Ben, and Alvaro are so excited to see their dad, and I am looking forward to Paul’s recovery, waving goodbye to the drugs and, most importantly, halting this dreadful disease.

“Fingers crossed, bye-bye MS. We are all feeling hopeful.”

Although not wanting to be a wet blanket, I felt the need to say a few words. I told Claire: “Recovery is like a roller coaster ride, Expect ups and downs. Don’t get dispirited.”

Claire replied: “Paul is in high spirits, so can’t wait for the next chapter. I will try to keep my spirits up during the recovery down times.”

Lisa and I will be meeting up with Claire and Paul once he gets back to Spain and is well enough to receive visitors. Watch this space!

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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.

Paul’s Moscow HSCT for MS journey begins

I had planned to take a break from writing this month, August being a slow news month that is well known among journalists as the silly season. That’s when minor stories are given major coverage, because of a shortage of stories of real substance.

Paul Morrison and his wife Claire.

However, I could not let Monday August 6 go unmarked.

Why? Because, after months of fundraising, it is the day when Paul Morrison flies to Moscow to undergo HSCT in his fight against MS. He goes with my best wishes for a great trip ad a successful outcome.

I first wrote about Paul’s story here, and since then, he told me last week, the income from his fundraising efforts had reached $45,000.

I plan to catch up with former Londoner Paul after his return to Spain, where he lives just a few miles from me. Watch this space for HSCT news from Moscow and future updates.

# # #

Unless anything happens that I feel must be highlighted, I’ll be back in September.

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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.

Heatwave and MS, is 34C (93F) too much to handle?


It seems that the media generally has become somewhat fixated on the heatwave being experienced in various countries worldwide.

As a native Brit, I am well used to everyday conversations including the topic of the weather. It’s a staple of chat, an icebreaker.

heatwaveAnd, in the UK I left behind, people will be complaining about the heat. “It’s too much,” will be an oft-heard comment. I am sure this is equally true of other countries where people are not used to high temperatures.

The latest news from the UK is that the heatwave is forecast to continue with a high of 34C (93F) expected.

But is 34C that hot? Is it unbearable? While I feel for those who have MS and experience heat sensitivity*, the truth is that places like the UK are just not prepared. They are not ready for winter snow, summer sun, or floods caused by heavy rain.

Be prepared for higher temperatures

Lisa and I moved to Andalucía in southern Spain almost three years ago. For us, 34C is not excessive but a common summertime temperature. Here, we are ready for it. And, in August, we fully expect many days when the thermometer will register highs in the 40sC (100sF).

heatwaveTo us, living in the countryside but just 15 minutes from the Mediterranean, these are just regular summer temperatures NOT a heatwave.

How do we cope? Spain is prepared. Our home has air conditioning. Additionally, we have ceiling fans in the living room, our bedroom and our spare bedroom. Our car has AC too. Although that is not unusual in the UK, as a luxury, here we use it for every trip in the hot weather.

It’s important we are all ready for the temperatures in which we live, so we can enjoy them.

Are summer highs in the 40s, that’s more than 100F, “too much”? Not for me. Even with MS, I enjoy day after day of sunshine. It’s so different from the cloudy skies and rain so typical of usual summer weather in the UK.

*Webmd says that heat or high humidity can make many people with multiple sclerosis experience a temporary worsening of their symptoms. Doctors believe that this occurs because heat causes nerves (whose myelin covering has been destroyed from MS) to conduct electrical signals even less efficiently.

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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.

MS guide to ins and outs of bathrooms


My thoughts are in the pan today, prompted by an excellent article by Ellie B in Modern Day MS. In it, she addresses bathroom issues that many of us with MS encounter such as, but not restricted to, bladder problems.

Ellie writes:

bathroomMany of us know that MS comes with a whole slew of bathroom issues. Bladder dysfunction, which occurs in at least 80 percent of people with MS, happens when MS lesions block or delay transmission of nerve signals in areas of the central nervous system. The central nervous system is responsible for the bladder and urinary sphincters.

She continues:

An overactive bladder that is unable to hold the normal amount of urine, or a bladder that does not empty properly can cause symptoms that include unfun things.

Such unpleasantness includes:

  • A frequent and urgent need to go, right then and there. Yeah, been there, done that. In fact, still do that.
  • A slow start after all of that urgency. It is extremely frustrating when that happens.
  • Frequent peeing during the night. I could set my clock, I wake every two hours and, due to mobility issues, use a urine bottle I keep by the bed.
  • The inability to fully empty that bladder. If only I could, it’s aggravating to have to go again so soon.
  • Accidents – not making it to the bathroom in time. Oh, I know, it’s happened to me in the past. Fortunately, medication,  better planning, a urine bottle in the car, and pads, have stopped it happening again.

Not just bladders but bowels too

Ellie says that bowel dysfunction is also an issue. It is, and can take the form of:

  • Constipation. Tell me about it. I need to take doses of laxative three times a week.
  • Diarrhea. This is one problem that I don’t have.
  • Loss of control of the bowels. Not really my problem but urgency can be an issue at times.

Ellie continues:

None of it is pretty, pleasant or fun for us or the people close to us to deal with. It makes those of us with MS master location scouts. We will have the nearest bathroom and exits in eyesight within moments of our arrival. If we’re lucky, our people are master scouts as well.

There are a few things non MSers need to know about using the bathroom:

  • Yes, we know we just went. We really do need to go again.
  • No, we don’t think drinking less water would help. Actually, it’d make the whole situation worse. Then we’d be sick for different reasons.
  • Don’t joke and tell us to wear a diaper. It’s not funny. We probably already know that. We might already be in one.
  • Don’t look at us funny for using the accessible stall. With MS, we often have a wide gait and other mobility issues. We need the extra space, the higher toilets and the handrails. Yes, we know we often don’t look like we really need them. Don’t fuss at us.

Well said Ellie.

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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.

Now Ocrevus blocked from health service in Scotland

Hot on the heels of NICE rejecting Ocrevus (ocrelizumab) as a treatment of PPMS by the National Health Service (NHS) in England, it has been blocked as a therapy for relapsing MS in Scotland.

The Scottish Medicines Consortium (SMC) says it does not consider ocrelizumab to be cost effective for the NHS in Scotland  as a treatment for relapsing MS in comparison to the existing disease modifying drugs. The SMC states that Roche, parHot on the heels of NICE rejecting Ocrevus (ocrelizumab) as a treatment of PPMS by the National Health Service (NHS) in England, it has been blocked as a therapy for relapsing MS in Scotland.ent company of Genentech – the manufacturer of the drug, did not present a sufficiently robust economic assessment of the drug’s use for it to be accepted. 

MS organisations in the UK have been quick to react. The MS Trust issued a statement that it is very disappointed in the SMC’s decision.

It added: “We anticipate that Roche will continue to work with the SMC with the aim of changing this initial decision. We also understand that the SMC submission for ocrelizumab for primary progressive MS has been withdrawn.”

Ocrevus first to slow PPMS progress

ocrevusMS Trust’s director of development, Jo Sopala, said: “We are very concerned at the continuing delay for people with MS to access ocrelizumab in Scotland.  For people with relapsing MS, it expands the range of MS treatments by offering a different dosing schedule, a different mode of action, minimal monitoring and a low risk of side effects compared to existing disease modifying drugs. 

“In primary progressive MS, ocrelizumab is the first treatment which has been shown to slow down progression.  We will continue to make the strongest possible case for NHS Scotland approval of ocrelizumab for both relapsing and primary progressive MS. 

Certainly, all is not lost as NICE initially made the same decision, for the same reason, about the use of Ocrevus to treat relapsing MS in England. Then, last month, after some negotiations on price, recommended its use. Now it has blocked its use for treating PPMS.

Now, we can look forward to further negotiations which I am sure will lead to the eventual approval of Ocrevus by NICE and SMC – for both types of MS.

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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.

Ocrevus blocked again, this time for PPMS, as not cost-effective

 

So, news came out last week that the UK’s National Health Service will not be providing Ocrevus for treating primary progressive MS (PPMS) in England*. But, panic not, the decision is far from being set in stone.

ocrevusWhy is this? Because the decision by the National Institute for Health and Care Excellence, (NICE), was that Genentech’s Ocrevus (ocrelizumab) did not meet its “value for money” criteria as a PPMS treatment. This was despite the fact that NICE’s evaluation committee agreed it is a “step change” for these patients.

The thing is that NICE has a history of reversing initial decisions, once it negotiates a lower purchasing price that makes the drug cost-effective.

Only last month, NICE reversed an earlier decision regarding relapsing-remitting MS (RRMS) patients, and recommended Ocrevus be included in the NHS.

The decision was made after Genentech negotiated with NICE and reached agreement on an undisclosed price for the infusion treatment, which apparently sells in the US at an estimated annual list price of $65,000.

That’s exactly what I expect to happen this time.

A cynic (who me?) might suggest that NICE has made its two decisions to oppose the use of Ocrevus purely to obtain the drug at a lower price.

* Decisions about the availability of drugs for the other parts of the UK, namely Scotland, Wales and Northern Ireland, are made by different organisations.

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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.

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.