BBC Panorama was about treatment of just four patients – not for-and-against HSCT

Please note: As with all posts on my 50shadesofsun.com blog, all opinions are mine. Usually, I leave that unsaid but on this occasion I want it clearly understood that I am speaking for myself – not for any Facebook group nor anyone else.

————————————————————————————————————————————–

panoramaMS-res-blog-banner_edited

How dare the Barts MS blog criticise the journalistic integrity of the BBC Panorama team or any other news team, for that matter, over how they treated the HSCT treatment at Sheffield?

And then to ask, albeit with tongue firmly in cheek, “Should we create the equivalent of the Ig-Nobel prize for irresponsible journalism?” is downright insulting.

Just what do the writers of the Bart blog post ClinicSpeak: reflections on HSCT after the fallout of the BBC Panorama programme know about journalism? Not a lot in my opinion – as someone who is a journalist by profession.

As far as the other points made in the blog are concerned, I must point out that I have absolutely no medical training – but I do have MS, epilepsy and a cardiac condition.

There does not seem to be anything new in the blog; they have said it all before and the fact that Panorama did not go into the downsides of HSCT is irrelevant. It was not scientific paper, nor was it a programme about the pros and cons of the process – it was a news story about the treatment and progress of four patients who had chosen to have it. And that is what journalism is all about. It told the story in an accurate and responsible manner – it is just that those at Barts would have preferred a different story altogether.

What’s more, if they want to compare HSCT with drugs, that discussion needs to include the dangers of those drugs too, of which there are plenty.

As someone who lives with MS, I think the Barts blog piece, posted on February 8, was highly patronising in that the writers seem to assume that patients aren’t interested in the long term risks, just the immediate ones. I have not had HCST, nor applied for it, but I think that if it works for some, then it is good. There are risks but these, both short and long-term, are discussed with each patient before he or she is accepted for treatment.

As far as the benefits are concerned, the people at Barts are also patronising if they think patients with extensive MS damage expect it to be reversed by HSCT, rather than progression halted with no other gains. Stopping the progression is good enough. Those extra gains are really only achieved with early MS – and patients know that!

And, while I am about it, what is it with neurologists’ attitudes? They seem to think that they should have the right to decide what is best for every individual. They think, and I am aware that this is a sweeping generalisation, that they know best and pay little if any attention to the views of patients themselves. They are the professionals and don’t need to considering patients’ views about their own treatment – well, that is exactly what they should do.

We are more than MS statistics, we are more than patients. We are PEOPLE, with our own views and opinions – and our own rights – about what happens to us.

Gwen Higgs – an update

In a comment received after my blog on Monday, one reader asked if there would be a part 3 about what Gwen’s neurologist thought about the HSCT she’d had in Moscow. So, I asked Gwen.

She said: “That would be an extremely short blog entry. I have only seen my neuro once since I came back from Russia eighteen months ago. That was a routine appointment which happened to fall a couple of months after I arrived home, so I was still bald. She showed absolutely no interest whatsoever.”

Gwen Higgs, HSCT for MS advocate, ‘This is Your Life’ (part two)

Gwen Higgs underwent HSCT in Moscow in 2014. Today, she is a committed advocate for the use of stem cell therapy to treat all types of multiple sclerosis. She is a voluntary admin on many HSCT Facebook groups and is always ready with words of encouragement and reassurance. This is part two of Gwen’s story, if you missed part one on Saturday you can catch up here: https://50shadesofsun.com/?p=1499

The Maximov centre in Moscow.

The Maximov centre in Moscow.

Faced with negativity towards HSCT from her neurologist, who would not even look at the data she had put together, Gwen felt forced to make her own way. So, it was back to the computer and the internet.

She said: “I discovered that (at that time) the only two places in the world which would treat PPMS with HSCT were in Israel and Russia. The cost of treatment in Israel was about quadruple of that in Russia, which seemed an impossible amount of money to find!  Luckily, I found blogs from patients who had had treatment in Russia – including one by the very first international patient to be treated there, who is also English! – which were all very positive.

Dr Denis Fedorenko.

Dr Denis Fedorenko.

“I spoke to Dr Fedorenko, the HSCT haematologist in Moscow, and he agreed that there was a strong possibility that HSCT would help me. I formally applied and was accepted for treatment, which I finally had in July/August 2014.

“HSCT in Moscow is entirely inpatient, from the extremely thorough pre-treatment testing until you are discharged, so I decided to go alone, partly to keep costs down.”

Asked how she would describe her experience in Moscow, Gwen smiled before saying: “It was like being in a cross between a Butlin’s holiday camp and a British hospital in the 1950s!  The hospital staff were extremely efficient and caring – one only had to wait minutes for a response to calling them.”

There were about a dozen other international patients who arrived or left during the 35 days that Gwen was there – American, Australian, Norwegian – all at different stages of treatment, all supportive of each other. “I had got to know some of them beforehand, thanks to social media – so it was in many respects a meeting of like-minded friends. We are still in regular contact. I was also in daily contact with family and friends at home, thanks to the wonders of Skype, etc,” she said.

“I felt totally safe and confident in the care provided in Moscow – I think hospitals here could learn a lot,” she added.

The cost of HSCT in Moscow in 2014 was US$40,000. (about GB£25,000 at that time).  The only other costs Gwen says she had on top were air fares and a visa, which cost a couple of hundred pounds.

Gwen during her treatment.

Gwen during her treatment.

As to the treatment and its effects, besides the temporary loss of her hair, Gwen recalls: “As I was actually going through HSCT, I realised that I could think clearly and that although I was tired, it wasn’t like the overwhelming fatigue I’d had for years. It was like a veil being lifted!

“Then, after HSCT I slowly realised I did not need to restart the bladder control medication, that I had been dependent on previously, as I was now able to control my bladder without it. It wasn’t perfect, but it was a lot better. Gradually, I noticed that I was choking and coughing much less frequently while drinking and eating than before – and today it is a rare occurrence.”

As she regained strength after HSCT, Gwen’s friends and family started pointing out changes they noticed. She said: “I could carry a cup of tea without spilling it. I could walk from one room to another without holding onto a wall for balance. I could stay awake all day. I could hold a conversation with more than one person at a time. I could walk out of the house without having to wear a foot brace.”

Her recovery is not complete but then no-one is claiming that HSCT is a cure. Gwen says: “My mobility is still fairly poor. I use a walking stick outside the house and I can’t get very far without my legs seizing up. BUT – it’s not worse than before HSCT, and I’m certain that it would have been, without the treatment.

“After my return to the UK, I was monitored by a haematologist for three months who was pleased with my recovery and I haven’t had to return to Russia for follow- up checks – updates are by email,” she said.

 

 

 

 

Gwen Higgs, HSCT for MS advocate, ‘This is Your Life’ (part one)

There can be no doubt that Gwen Higgs is a remarkable woman who has fought MS, has undergone HSCT and is today a voluntary advocate for that treatment, including being an admin of several Facebook pages on the subject. She is always there with answers to questions and kind words of reassurance when needed.

Today is the first of two blogs that, together, will tell Gwen’s story.

gwen higgs2a

 

The Life of Brian Gwen – part 1

There’s no embarrassment or coyness about Gwen. It is said that no true gentleman would ask a lady her age but my years as a journalist have killed off any qualms I may have had – so the question was asked.

She answered immediately, “I am 56-years-old and married for more than 33 years. My husband and I have three grown up sons. My original training and work was in scientific roles before becoming a stay-at-home mother for many years. After that, I worked in, and was a Governor of, a large comprehensive school – until ill-health retirement about three years ago.

Gwen lives in Witney in the UK county of Oxfordshire and was diagnosed with PPMS in 2009 at the John Radcliffe Hospital in Oxford. She described that moment: “It wasn’t a shock – more of a relief that I wasn’t imagining all of the symptoms which made daily life so difficult!

“The symptom which made my life most difficult was the dreadful, unrelenting fatigue. I woke up exhausted, had to rest after having a shower, had to rest after getting dressed. I’d come from work and just lie down until it was time to start all over again. I’d get through the day on sheer force of will.

“Then force of will wasn’t enough – I just could not keep going, I needed to rest………

I found it difficult to concentrate, couldn’t formulate my thoughts, started losing words, forgetting names………the infamous brain fog made daily functioning – let alone working! – extremely difficult.

“My walking was worsening. I had to hold onto walls and furniture to get from A to B. My legs would just seize up and stop working after a short distance. Walking like a drunk as a staff member in a school is not a good look!

“I started having bladder problems. On one memorable occasion I had a catastrophic bladder failure in a School Governors’ meeting – that was totally humiliating, to say the least. I was having problems swallowing food and drink – I’d frequently choke, which was both frightening and embarrassing if in company. I avoided going out to eat, or even drinking water during meetings at work, for fear of the coughing fits which would invariably ensue.

“Eventually I had to accept that it was better for all concerned if I left my job. That was very hard – I loved my work,” she added.

After giving up work, Gwen realised that her life was disappearing before her eyes. Her world had shrunk dramatically. She explained: “I could no longer drive to visit sons at University, or friends and relations further afield. I had to plan carefully before even popping to a friend’s house for coffee, because it would mean not being able to do anything else that day. My husband was having to take over most of the household tasks on top of his full-time work.

Desperate for help, Gwen took to the internet and, at last, found a glimmer of hope for the future.

She said: “I came across some blogs by MS patients who had a treatment called HSCT (haematopoietic stem cell transplant) which had halted their progression, and they had even had some improvements.

“I spent much time researching. I read every published research paper I could find which had any connection to HSCT, however tenuous. My scientific background helped enormously with the research; I was used to the terminology, understood how clinical trials worked and was used to deciphering the statistics.

“Finally, I decided that as my condition was worsening and there was no way that would change without intervention and, being told that no disease modifying drug is effective for PPMS, the best option was to have HSCT and at least not get any worse.

Gwen recalled: “I approached my neurologist and asked for her advice about HSCT. She was horrified; I almost laughed out loud at her expression.  She did everything in her power to talk me out of even considering HSCT. She told me it was dangerous, it wouldn’t work, etc, etc.

“But it became obvious during our conversation that she didn’t actually know what the procedure involved, nor did she want to hear it from me, or even look at the published research that I had printed out and taken for her. She said she’d consult her colleague who was ‘in charge of MS’.

“It was obvious to me that I was going to have to rely on myself, if I was to get treatment. So, back to the internet,” said Gwen.

 

Part 2 will follow Gwen’s life from this point, through her successful treatment, right up to today.

 

 

HSCT, sunshine, MS and other musings

gwen higgsbernie sandersHCdavid cameron_edited Gwen Higgs, Bernie Sanders, Hillary Clinton and David Cameron

Gwen’s story, warts and all

HSCT, stem cell therapy, and its use to treat multiple sclerosis patients has been on television, in publications and even this blog during the second half of January. In just a couple of days, or so, I shall be bringing you the story of Gwen Higgs from diagnoses, through her battle against both MS and her neurologist, her treatment in Russia, and how she is today.

It is an honest story that does not gloss over her struggles or her embarrassment. Be sure not to miss out.

So this is winter?

Weather here in the south of Spain continues to be most pleasant. In the last two days, Lisa and I have enjoyed lunch outdoors on the terrace while we soaked up the sun;  so good for my Vitamin D.

Forecasts for Thursday and Friday don’t look as good with highs of only 12° and 14°C/ 54° and 57°F respectively – but warmer weather should return on Saturday.

I am still not really acclimatised yet but certainly enjoying the sunshine in which it is hot enough to sunbathe. It just seems ridiculous to be able to do that in the so-called winter months of January and February.

Back to Malaga

Our car was collected today and taken back to the automatic gearbox specialist in Malaga but, this time, they brought us a courtesy car. So there is no need now to rely on neighbours’ goodwill to take us shopping and what not.

Six coin tosses decide Iowa Democratic winner

So six of the Iowa State Democratic party delegates as elected by the caucus were decided by coin tosses as both Hillary Clinton and Bernie Sanders achieved equal votes in six of the areas being counted.

Now if six dead heats aren’t coincidental enough, the fact that Hillary won all six coin tosses is just too much for me. Don’t worry, I am sure conspiracy theories will soon arise.

In Iowa, Sanders won 21 of the delegates without a coin toss; Hillary gained 22 INCLUDING all six dead heats decided by the flip of a coin. Now tell me that Hillary won in Iowa. If just one toss had gone to Sanders, then he would have won 22-21. Enough said.

UK Euro battle lines were drawn early

On the eastern side of the Atlantic, UK Prime Minister David Cameron is hailing the outcome of his negotiations with Europe as successful. Whether they are, or aren’t, is another matter.

What everybody needs to realise, however, is that the ‘stay’ and ‘leave’ campaigns for the UK’s promised referendum on membership of the European Union were already decided before the results of the renegotiation were known.

Those determined to stay, and those determined to leave, had declared their positions and would be campaigning for victory in the referendum. In reality, the renegotiations did not matter at all.