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50shadesofsun

News and Opinions about MS, Health & Disability

HSCT free on the NHS – “ask us your questions” irresistible offer

Here’s some great news. Anyone who would like first-hand information about any aspect of getting HSCT free of charge from the UK’s National Health Service (NHS), you don’t need to look any further.

HSCT free

James Coates.

Whether you want to know about the application process or details of the treatment itself, your questions can be answered.

Three days ago, I brought you news of the fact the HSCT had been given to James Coates by the NHS, along with his progress at 45 days after his transplant.

Since then, his wife Alison has told me that both she and James are happy to answer your questions via Facebook.  Alison said: “Ian, if any of your enquirers would like to talk to us directly, do tell them to drop us a line on here – happy to answer any questions.”

To make contact, simply send a personal message, via Facebook, to @alison coates

 

 

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Acute shortage of MS Specialist Nurses prompts funding drive

Most people living with MS in the UK live in areas where there aren’t enough MS nurses to provide vital care and support, according to a new report.  The report published last week by the MS Trust shows that 64% of people (around 68,000) are in that situation.

Now, the trust is launching a campaign to fund new nurses in the areas of greatest need and to make sure no one has to manage MS alone.

On its website, the MS Trust says:

ms-trust-logoMS Specialist Nursing in the UK 2016 finds that there are worrying variations in support across the UK. Almost one in four people with MS lives in areas where the nurses have to care for twice the recommended numbers. But not having the right care and support when they need it can have serious consequences for the health of people with MS, and can be costly for the NHS.

MS Trust research has shown that MS nurses are absolutely crucial for the health and wellbeing of people with MS. They often work with people from the moment of diagnosis, throughout their lives with MS, providing expert information and support in making choices, particularly about their health and treatment.

“At the MS Trust we believe that MS nurses play a vital role in helping people deal with the shock of diagnosis and can help them adjust to, and manage, life with MS,” said Amy Bowen, Director of Service Development at the MS Trust.

“Our research shows that too many people are going without this specialist support – either they have no MS nurse near them, or their nurse is having to manage a caseload far in excess of the recommended sustainable number. This can have grave consequences for people with MS. They may have to rely on non-specialist support for what is a highly complex disease. And they may have to resort to using A&E services if their symptoms become worse.

“As we know, the NHS is coming under increasing strain, and MS specialist services are often not a priority. That’s why the MS Trust is stepping up to the plate with our #No1alone campaign. We have mapped services across the UK and highlighted the areas in greatest need. Now we are determined to fund, train and support new MS nurses to make a difference for thousands of people living with MS today.”

This campaign certainly deserves to succeed to ensure that everyone with MS has access to an MS Specialist Nurse, wherever they live.

 

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Free HSCT in the UK, here’s the NHS criteria

Since my story on Sunday about James Coates, who has Secondary Progressive MS, having HSCT free of charge on the UK’s National Health Service (NHS), I have been inundated with enquiries.

Most have been concerned about whether they can qualify for treatment and, so, today I am going to set out the latest criteria that I can find but must point out that the requirements may have been modified since this was produced by the London MS-AHSCT Collaborative Group.

nhs-logoIt must be noted that to be considered for this treatment, a patient must be living in the UK with MS that must be ‘active’. The group has also stressed that this as an exceptional therapy for some people with MS, rather than a standard treatment; neither the National Institute for Health and Care Excellence (NICE) nor NHS England have given the go-ahead for this therapy to be used routinely to treat any form of MS.

nice-logoThis is the Patient Eligibility Criteria Adopted by the London MS-AHSCT Collaborative Group.
The eligibility criteria are overall aimed at selecting patients who have failed approved treatments of high efficacy or have none available to them and have recently presented evidence of inflammatory CNS disease activity; and who could undergo AHSCT with an acceptable estimated level of risk of adverse events. Justification for each of criteria is supported by evidence from AHSCT trials and observational studies.

Referral criteria:

  • Diagnosis of MS made by a neurologist
  • Able to walk, needing at most bilateral assistance to walk 20m without resting
  • In relapsing MS (RMS), failed one licensed disease modifying drug of high efficacy (currently including alemtuzumab and natalizumab) because of demonstrated lack of efficacy
  • New MRI activity within last 12 months

Inclusion criteria: 

  • Age 18 to 65 years
  • Disease duration ≤15 years from diagnosis of MS
  • Diagnosis of MS according to McDonald’s criteria
  • For PPMS, CSF OCB+
  • For RMS, failed at least one licensed disease modifying drug of high efficacy (‘Category 2’ as defined by Scolding N, Barnes D, Cader S, et al. Pract Neurol 2015;15:273–279; currently including alemtuzumab and natalizumab) because of demonstrated lack of efficacy (as evident from relapse, MRI activity as defined below at Point 7, or EDSS increase) after being on DMT for at least 6 months
  • EDSS score 0-6.5
  • Inflammatory active MS as defined by ≥1 Gd+ (>3mm) lesion (off steroids for one month) or ≥2 new T2 lesions in MRI within last 12 months
  • Approved by the MDT

Exclusion criteria:

  • Eligible for an ethically approved clinical trial where AHSCT is offered as one of the treatment arms
  • Unable to adequately understand risk and benefits of AHSCT and give written informed consent
  • Prior treatment with total lymphoid irradiation and autologous or allogeneic hematopoietic stem cell transplantation London MS-AHSCT Collaborative Group – Patient Eligibility Criteria Final V.3. – 8/12/2015
  • Contraindication to MRI including but not limited to metal implants or fragments, history of claustrophobia or the inability of the subject to lie still on their back
  • Poorly controlled depression or recent suicidal attempt
  • Presence of any active or chronic infection
  • Unable to walk 20mt with or without support, or wheelchair dependent
  • Any significant organ dysfunction or co-morbidity that the Investigators consider would put the subject at unacceptable risk

And they are the criteria in their entirety to the best of my knowledge and belief.

 

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Wheelchair user’s dream: Motorized, foldable and lightweight

As regular readers will know, I am a bit of an advocate when it comes to accessibility and mobility issues and, from time to time, do address these subjects. Those subjects are of particular interest to me as I have to use a wheelchair as my mobility is severely restricted because of multiple sclerosis.

Occasionally, I come across something that simply deserves to be highlighted because it fulfills a need that people with disabilities have. For example, someone who needs a wheelchair to get about has a general choice of a manual or motorized one.

A manual one either has to be self-propelled, if the user is physically able to do so, or be pushed, so the wheelchair user has to relinquish independence and rely on someone else.

The alternative, as I have discovered, is not much better. Motorized wheelchairs are great to use, easy to maneuver and control and give the user the feeling of real independence. However, they have a major downside too – and that is their weight. They are so heavy.

In fact, anyone that uses a motorized chair and wants to take it to different places needs a specially adapted vehicle with either a hoist, ramp or elevator platform to load the chair on board.

BUT, there is an answer to the problem. There are now good quality, lightweight, folding motorized chairs that make the old problems disappear:

  • They give the user the independence provided by all motorized chairs;06 blue
  • They fold-up in seconds to go in the boot (trunk) of even a small car;
  • They are light enough to be lifted easily into and out of a car by one person;
  • Their batteries simply pull out in seconds to be transported separately on aircraft;
  • They are light enough to be carried on and off tenders if the user is going on a cruise holiday.

Talking of cruises, here is a report from Emma. She had just taken delivery of one such folding motorized chair from Better Products for Disabled People. This is her story:

Earlier this month my husband and I set off on our first ever cruise, heading to the Norwegian Fjords. We had been recommended cruising for its excellent accessibility but had no idea what it would be like.

We were taking my new folding motorized wheelchair but were concerned after the warnings from the cruise company about narrow doors and door thresholds. We need not have worried.

For a week I had more freedom than I’ve had at any point since my MS took most of my eyesight; I could navigate the ship just fine, the wheelchair took it all in its stride. Door thresholds were no problem; narrow corridors and doors were only an issue because of my lack of sight and skill and I improved quickly.

The battery handled it brilliantly; I spent at least eight hours a day in the wheelchair zooming around deck, attending shows, going to meals or out on excursions and never had a single problem.

What I did have were lots of admiring glances which turned into questions about where I got my wheelchair from and how I like it. Who would have thought I would be a travelling sales woman? BPDP folding electric wheelchair you are an international lifesaver.

Now, you cannot say better than that. Much to the relief of my wife, Lisa, my BPDP chair is on order. When it arrives, we’ll have the best of both worlds. I’ll get my independence back as I use a motorized chair and it will come out and go back into the car as simply as a manual chair.

 

Better Products for Disabled People <<http://better-products-for-disabled-people.myshopify.com>>

 

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James Received HSCT Free, as He Lives in the UK

Virtually all the talk about availability of HSCT1 as an MS treatment includes the need to travel long distances to other countries, but UK residents can receive the treatment in London, avoiding the journey overseas. What’s more, it is provided through the country’s social National Health Service (NHS) so, like all NHS medical care, patients are given HSCT free of charge.2

Yes, you read that right, while treatment costs worldwide seem to vary between $50,000 and $120,000, not counting travel and other incidental expenses, UK residents can get the therapy free.

James Coates has just undergone non-myeloablative HSCT (the protocol that uses lower-dose chemotherapy drugs) at King’s College Hospital, in London. In fact, today (Wednesday) he reaches 44 days since he received his stem cell transplant.

I was fortunate to be able to contact James, who lives in England’s north-west, to ask about his experiences and how he is getting along.

HSCT free

James Coates.

IF:           We hear different doctors disagreeing about HSCT. Some say it only works with Relapsing MS, others disagree. What type of MS to you have?

JC:          Secondary Progressive with an EDSS score of 6.0 to 6.5.

IF:           How long did it take from applying to receiving treatment?

JC:          After a disappointing start, it was quite quick. All applications have to be considered by a panel which, first of all, in December, turned me down as not meeting the criteria. But I appealed with the support of my neurologist and new MRI evidence. At the next panel meeting at the end of January, my application was accepted. Then, just 15 weeks later, I was in King’s where my treatment was led by consultant hematologist Dr. Majid Kazmi.

IF:           I realize that it’s early days yet, but how are you getting along so far?

JC:          As you say, it’s early yet. But my brain fog has improved and I can think more clearly and understand things more quickly. My constipation is not so bad and, before, when I would lie on the bed I could not move my right leg, as though it was dead; now I can lift it right up.

Delighted to have been given HSCT free

IF:           I know that the first three months are in ‘recovery’ mode and you cannot do any serious exercising yet, but are you happy with having been given HSCT free and your progress since?

JC:          Happy? More than happy, I’d say delighted with both. And the progress is not just me. I had my first follow-up last week and Dr. Kazmi was really pleased that I am, in his words, “ahead of the curve” and doing better than he thought I would. He was surprised and pleased that I have also started to drive again, something I had not done for months. My EDSS score is about the same but it’s too early to expect anything else yet.

IF:           What are your hopes and expectations about the final outcome of this treatment?

JC:          I am realistic about this. Stopping the MS getting worse, halting its progression is my primary goal. Anything better than that would be a great bonus. Of course, I am hopeful of that but stopping it is my main goal.

IF:           What’s next for you?

JC:          Dr. Kazmi, who is so caring, wants to see me again in another month. Then, once three months has passed, I can start some serious exercising.

IF:           Finally, James, what do you think of how you were treated by the team at King’s?

JC:          It was absolutely phenomenal. Not just Dr. Kazmi but the whole team. I cannot speak highly enough about them all.

 

1 Hematopoietic Stem Cell Transplant.

2 Access to NHS services is based on clinical need, not an individual’s ability to pay. NHS services are free of charge, with certain exceptions approved by Parliament.

This article was written by me and first appeared on Multiple Sclerosis News Today.

 

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ian profileIan Franks is Chief Columnist and Patient Specialist at Multiple Sclerosis News Today. He has enjoyed a successful career as a journalist, from reporter to editor, in the print media; during which 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 and uses his skills to write his own flourishing specialist MS, Health & Disability blog at www.50shadesofsun.com. 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.

 

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Half of people with MS have faced ‘unacceptable’ mistreatment, says MS Society’s latest study

Just how often have people living with MS been labelled as drunks or had it implied they are ‘putting on’ the symptoms?

The answer is almost half of us in that situation say they have received such treatment, according to the latest survey conducted by the UK’s MS Society.

Announcing the findings on its website the society says:

Almost half (45%) of people with MS feel they have experienced mistreatment or stigma because of their symptoms, according to our most recent survey.

Our report showed that 49% of people with MS have been accused of being drunk because they were having trouble walking. Another 47% say they’ve been told they are exaggerating the extent of their MS because they ‘look so well’.

Diane Donat (Pic: MS Society).

Diane Donat (Pic: MS Society).

Diane Donat, who lives with MS, shared her experience: “I have a poor sense of balance and one morning I fell over in a busy marketplace. As I struggled to pull myself back up, a woman walking past pulled her child away from me and said ‘Disgusting drunk!’; I was too stunned to respond.”

Unsurprisingly, 73% say that living with the condition is more difficult when people treat them badly because of their condition.

Our survey also revealed that:

  • 35% have been accused of wrongly parking in a disabled bay because they didn’t appear to be disabled
  • A further 12% of respondents weren’t sure if they had experienced mistreatment.

Today over 100,000 people are living with MS in the UK, yet 76% believe that the public’s awareness of their condition is ‘low’ or ‘very low’.

Michelle Mitchell, our chief executive, said: “The results of our survey are unacceptable. By releasing them we hope to challenge these outdated, negative perceptions.

“This is a condition that’s already unpredictable and challenging to live with, and this stigma and misunderstanding is making life even harder for many of the 100,000 people in the UK with MS.”

Diane explained that her loved ones make a big difference: “My family and friends are a shield for me against discrimination. They make an effort to understand my MS, and know how to help me without being told.”

Of those who said they were supported during a difficult incident, 63% were helped by a partner, 40% by immediate family and 34% by friends.

Michelle continued: “We are here for anyone affected by MS – people living with the condition and their family and friends. If anyone needs support, we would urge them to call our MS Society helpline on 0808 800 8000.”

The results of this survey are a terrible indictment of the perception of those who are fortunate not to have MS but also highlights the need for even greater efforts to be made to educate the general public.

• 1,018 people with MS shared their experiences with the MS Society/Opinium survey.

 

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When you have MS, epilepsy and a heart condition, good news from a hospital is always welcome

Having been diagnosed as having multiple sclerosis in April 2002, I have seen more than my fair share of the insides of hospitals.

Add to MS the fact that I have had epilepsy since 1972 and you can see the pressure mounting. Finally, six years ago I was diagnosed with a heart condition. Now, atrial fibrillation, which is an irregular heartbeat, may not in itself seem that serious. However, the various tests requested by my cardiologist back then revealed a scar in one if the chambers of my heart, a scar showing that at some time I had suffered a heart attack.

A heart attack, me? That cannot be right, I would have known. I have never felt chest pain that is associated with such an attack. Anyway, aren’t having MS and epilepsy enough already?silent-heart-attack

Not all heart attacks are accompanied by pain, the cardiologist told me. “You must have had a silent attack,” he said.

A what?  What’s a silent heart attack? Well, he explained, a heart attack does not always have obvious symptoms, such as pain in your chest, shortness of breath and cold sweats. In fact, a heart attack can actually happen without a person knowing it. It is called a silent heart attack, or medically referred to as silent ischemia (lack of oxygen) to the heart muscle.

Since moving to Spain last year I had not seen a cardiologist until today. Seeing me for the very first time and with no access to my UK medical history, he gave me a thorough check-up including an electrocardiogram.

By the time he finished, although confirming my heart does have an irregular beat and that the scar does exist, he said that the scar is very small and all heart chambers and valves are working perfectly.

Then he not only changed one of my heart medications but also cut another out altogether, saying it is not needed.

Overall, a great result and a ‘thumbs up’ for my heart before my trip to Moscow next month to have a medical assessment to see if HSCT is a reasonable treatment for me.

 

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Athletes with MS taking on Paralympic Games in Rio

Following the recent Olympic Games, the 2016 Paralympics start today, also in Rio.

I respect and admire each and every one of the thousands of people with disabilities taking part and fighting for gold medals. To dedicate themselves with such passion and determination deserves the great success that only the very best will achieve.

Among those who are amassed for the Games  are a fair proportion of athletes with multiple sclerosis, far too many to name them all here but I will point out a few notable competitors.

200px-2016_Summer_Paralympics_logo.svgAustralian Carol Cooke who has lived with MS since 1998, is to represent her country at her second Paralympic Games.

She said: “I would never go back and change the fact that I was diagnosed with MS because it has made me who I am today and given me so many opportunities that I never would have had.”

British equestrian Anne Dunham is the oldest member of the ParalympicsGB team in Rio, aged 67, and she is determined to make her mark in these Games.

A keen horsewoman all her life, she was diagnosed with multiple sclerosis shortly after the birth of her daughter and has been a wheelchair user since the age of 30.

The second British sportswoman is ParalympicsGB’s Kadeena Cox will be lining up in no less than five events across two sports at her first Games in Rio.

A promising sprinter as an able-bodied competitor in the athletics’ test event for London 2012, Cox since suffered a stroke and was subsequently diagnosed with Multiple Sclerosis.

The young athlete set her mind on chasing Paralympic gold in Rio and now has one of the fullest schedules of anyone at the Games.

“It’s going to be a bit of a busy period,” said Cox, who is competing as both an athlete

“I’ve got the 100m then the 500m (cycling) time trial, then the 400m and the 4x100m relay and then I finish with the (cycling)road race so it’s going to be a busy week because they’re all pretty much back to back!”

Third Brit is swimmer Stephanie Millward was diagnosed with multiple sclerosis at the age of 17.  In 2012, she was a member of the a 44-swimmer squad to compete. At the Games she won her first Paralympic medal, a silver, in the 100m backstroke S9. This was followed by four further medals. She won bronze in the 4 × 100m freestyle relay (34pts), swimming with Cashmore, Watkin and Susie Rodgers; a silver in 400m freestyle S9, finishing behind South African Natalie Du Toit.

Another silver came as she once again finished behind du Toit in the SM9 200 m individual medley in a new European record time of 4 minutes, 4.40 seconds. Her fifth and final medal came in the 100-metre medley relay (34 pts) swimming with Frederiksen, Cashmore and Watkin. The British quartet were in fourth place heading into the final leg but Watkin came through to finish in second place, three hundredths of a second behind the winning team from Australia.

She is hoping to reach the top step this time around.

The United States is sending almost 300 para athletes, including Jennifer Schuble, who won a gold and two silver medals in Beijing eight years ago, while taking a silver and a bronze in London in 2012.

At just 5-foot-3, Schuble is short for a cyclist, but she has explosive power. She displays no outward signs of a disability at first glance but says her biggest physical ailments are because of MS.

“MS is like an old house short-circuiting,” she said. “So when your core body temperature gets hotter as in when you’re exercising … you start misfiring. Your brain stops communicating. So, as an athlete that makes it harder.”

Another USA Paralympian is army veteran Lisa Coryell who is the first USA woman to compete in the W1 wheelchair category, Lia – as Coryell is known – made the national team after just 14 months of intense training. Coryell has lived with multiple sclerosis for nearly three decades but her disease worsened a few years ago and left her in a wheelchair.

Going back to the Antipodes, but this time New Zealand, 57-year-old Richard Dobson, who- has MS, is one of Chris Sharp’s three-man para-sailing crew alongside Andrew May.

 

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Taming Heat Sensitivity at 100 Degrees

Many people voiced their concerns to me about anyone with MS moving to live in a sunny climate. That worry is understandable. With a disease that includes heat sensitivity, where even a hot shower can make you worse, how can any MS patient move to live in an area where daily temperatures average 22 degrees Celsius (82 degrees Fahrenheit) in July and August, but where the highs this year have reached 40 C (104 F).

Well, it is now nearly 10 months since my beloved wife Lisa and I made the move from the mostly cloudy and often rainy U.K. to our dream home in Andalucía in the sunny south of Spain.

Back in the U.K., we lived in a ground floor one-bedroom apartment in an urban area, but now we have our own detached two-bedroom property in a rural community about 10 kilometers (6 miles) from the nearest town.

With almost constant blue skisouth of Spaines, our home is nothing short of idyllic. We have palm trees visible from our kitchen window, an olive tree in the front garden, plus both orange and grapefruit trees very close by. And, in 15 minutes, we can be at the Mediterranean.

Our home has air conditioning and ceiling fans, plus we have an air conditioned car. I live in shorts and lightweight shirts, use plenty of sunscreen, and have a selection of summer hats.

Our home is just over 1 km (0.6 miles) from the main road, and that is reached by traveling between agricultural fields where, depending on the time of year, various crops are grown. So far, I have seen white cabbages, red cabbages and melons – to name but three.

The fields are planted and harvested by hand using gangs of traveling workers. Then, after the crops have been picked and sent on their way, a large herd of goats is released to clear the remaining plants.

Yes, it is hot here, but the good news is that it is affecting me less here than the very occasional hot day in the U.K., and that is because the humidity is much lower here.

The temperatures are more constant here, too. They change more slowly than in the U.K., where they can change up 10 or more degrees Celsius one day and down again the next day during what passes as summer. That volatility, the sudden changes, made me feel a lot worse. It took me a while to realize that my heat sensitivity was to those rapid and often frequent changes. I needed stability.

So having lived in Spain for most of a year, I can say that heat sensitivity is not an issue for me here. Overall, I still have good and bad days, but good now seem to outnumber the bad. Yes, I still fall, but far less often than used to be the case. Fatigue still happens but, again, less often. Pain is far less prevalent, too, but restless leg syndrome still plagues me in bed.

Mobility, or the lack of it, remains my biggest problem. But on my very good days, I can actually reach my car without sitting down halfway there, like I usually do.

So, do I regret exchanging the U.K.’s dreary weather for the almost constant Spanish sunshine? Not at all. Living it and loving it and, don’t forget, more sunshine means more natural vitamin D.

This article was written by me and first appeared in Multiple Sclerosis News Today.

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Ian Franks
Ian Franks is Chief Columnist and Patient Specialist at Multiple Sclerosis News Today. He has enjoyed a successful career as a journalist, from reporter to editor, in the print media; during which 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 and uses his skills to write his own flourishing specialist MS, Health & Disability blog at www.50shadesofsun.com. 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.
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