In early March, The Victoria Derbyshire programme on BBC2 put out 2 pieces on Cancer Crowdfunding and Overseas Clinics. Well that’s what they told me they were doing when they came to film me last November, anyway. It turned out that they had taken the easy option many journalists take; they did a hatchet job on The Hallwang Clinic.
I wasn’t really happy with the pieces, the second one particularly, as I thought they were not a fair reflection on the clinic. They had clearly not checked whether what people were saying were facts and made some sweeping statements seemingly not backed up with any evidence. There were some sensible suggestions made by the great and good, but I’ve already tried some of the things suggested and in practice they don’t lead to what you think they should. The NHS was held up as some authority on cancer treatment, which it isn’t, so I think that needs addressing. Finally, at least one contributor completely misrepresented their case giving a completely different story than actually happened.
But my main issue is that they painted the clinic as the villain of the piece without stopping to consider why a tiny clinic in the Black Forest is full of mainly UK patients. So I’ll have a look at that as well because I think that is the issue that should be looked at: Why do so many people seek help outside the UK for cancer treatment?
The Pieces from The Victoria Derbyshire Show
Its no good me talking about the program so I downloaded them, converted them into a format I can edit, took out all the rest of the program other than the pieces in question and you can watch these first without me trying to influence your views.
I’ve never watched the Victoria Derbyshire program, but then again I haven’t read the Sunday Sport either, and they seem to take the same approach: say something shocking, move on to the next piece. Television for the impressionable uninformed, with the attention spans of goldfish. Maybe that’s a cheap shot.
But they do it in a pretty subtle way, they present the program as a serious factual news program; they use the “BBC News” logo and even cut to a “newsreader” for the “latest news” (I left a bit of that in so you can see what I mean). This newsreader also includes that days “exclusive” as if it is being reported around the world.
Its actually as if someone is taking Sunday Sport news stories and interspersing them in the 6 O’clock news reading them seriously: “Now for our exclusive story; World War 2 Bomber Found on The Moon”. Most people would laugh at the story, but presented seriously as factual news to an audience watching daytime TV? That’s a different matter.
The other thing is that the Victoria Derbyshire stories get picked up by other media; the BBC News web site has these on it, The Daily Mirror ran the story (though it has now disappeared online) and it keeps cropping up on social media as it gets shared. A lot of the social media traffic is Charity initiated, because money being crowdfunded goes directly to those asking for it, not via the Charities, and this has them all worried about it.
In early November 2018 I was contacted by Jim Reed of the BBC, he’d found this blog. He explained what he was researching and asked me if I was willing to be filmed. I’m always wary when journalists contact me as they are not always very straight about what they are doing.
Jim seemed a pretty nice guy, he’d told me on the phone he was doing a balanced piece and repeated this in an email, because I said if he was just doing a hatchet job on The Hallwang Clinic, I wasn’t interested. They saved my life in 2017 and I’ve had 2 further years because of that. I don’t think the clinic is perfect but I’m not going to contribute to anything deliberately negative on the clinic. He assured me he was doing a balanced piece (and at the time I think he meant it) so he came up on
I’d like to stress though that this isn’t meant to be some sort of expose of the Hallwang or of overseas clinics but a balanced look at the forces driving people overseasJim Reed, BBC, email 13/11/2018
He travelled up, interviewed and filmed me for 4 hours on Thursday 15th November 2018.
I watched both pieces as I thought I’d get a bit of media exposure but I hardly featured. The crowdfunding piece was pretty fair ( I got about 30 seconds) and made some good points, however the piece on “overseas clinics” was essentially a hatchet job on The Hallwang Clinic. A couple of my (positive) comments were used but not attributed to me and no film at all.
So I’ve decided to write an answer piece, I shall try and give a balanced view and look at what drives UK patients there (as the Victoria Derbyshire program said they would but didn’t bother).
Its always the problem with journalists, once they have your story, they can do what they like with it. Some will lie to your face (or email) or be vague, but I can usually spot them. I actually think Jim Reed meant what he said when he said it, but the line they took changed later as he did more research, but I don’t really know.
Its an ill wind that blows nobody good and despite the content I’ve managed to get my story out on Twitter and Facebook on the back of their pieces, and got some press coverage with the promise of more. So I’m not too miffed.
My comments on The Victoria Derbyshire Article on Crowdfunding
Unfortunately I talked for so long that I had to split the films up, so there are 2.
I actually thought the Crowdfunding article was quite good and made some good points. Particularly about the stress put on families and patients trying to raise funds for treatment as they go along. I’ve seen a number of people do this and it puts them under enormous strain.
I also got 30 seconds coverage to point out that you need a really compelling story to get yourself heard, seen and supported as there are so many people trying to crowdfund for private cancer treatment abroad. If you don’t have a really compelling story you will simply disappear into the many other stories. I know this from experience.
The main things I disagreed with in this part were the comments from Rose Gray of Cancer research UK and Ruth George MP (vice chair of the All-Party Parliamentary Group (APPG) on Cancer) . They suggested: Talking things over with your NHS Consultant, Rose Gray suggested clinical trials are a good way of obtaining treatment and they also commented positively on the idea of Gofundme.com directing people towards Independent advice on cancer treatment.
So those are the things I’m going to comment on here, anything else is covered in the answer to the second article on the Hallwang Clinic.
Discussing Plans With Your NHS Consultant
This was something that was suggested by a representative of Cancer Research UK and the MP Ruth Brown at the end of the piece on crowdfunding. The majority of patients I met at the Hallwang Clinic had tried to do this with limited success.
In my case I found out about Pembrolizumab via academic papers avaiable on the internet in 2016. At that time it was approved for use on advanced melanoma in the U.S. but not in the UK. It wasn’t approved for use for anything else anywhere but had been shown to be successful on a good number of patients with my form of cancer.
So when I discussed it with my NHS Consultant he was reluctant to talk about it. I thought that this was probably because I knew more than him about it. But because it isn’t approved for use he actually cannot discuss it with me. In subsequent discussions he would talk about Nivolumab (which was authorised for use on some cancers at the time whereas Pembrolizumab wasn’t) which confused me a bit, but they are actually very similar drugs which are produced by competing pharmaceutical companies.
Nivolumab is made by Bristol Myers Squibb while Pembrolizumab is made by Merck. One of the reasons Nivolumab and Ipilimumab are authorised for combination therapy is that Bristol Myers Squibb make both and so can trial them together. Nivolumab was first to market but Pembrolizumab is considered the better product. Both are considered as being “site agnostic” meaning that they work on a number of cancers regardless of where the cancer originated. So they are now being slowly approved for other cancers as they are shown to be beneficial.
But NHS consultants cannot officially discuss drugs that are not authorised for use. They certainly cannot treat you with them, no matter how much evidence you have that something works. That is probably why on my second opinion a professor at the Royal Marsden insisted that immunotherapy (generally) would be a waste of time and money and recommended the standard treatment despite the fact that would be completely useless; it was the only thing he could treat me with.
The same is true for anyone wanting to discuss Avastin for use on Gliablastoma; NHS consultants cannot officially discuss it with you as it isn’t authorised for use on the NHS (although it is authorised in the US and has been for many years).
Up until recently, trying to talk about using cannabis oil with an NHS consultant was a complete waste of time. There still isn’t much point doing so as you will definitely know more about it from a quick google than your consultant will.
The main thing that restricts NHS Consultants, and anyone else in the UK for that matter, discussing new treatments, promising treatments and even alternative therapies is The Cancer Act 1939. A few of links to give a varied set of views:
Now which view you subscribe to is fairly irrelevant, in my experience nobody in the UK advertises new treatments, complementary treatments or alternative therapies using any reference to cancer as many people get threatened with (and charged under) this act. You have to work out what you want to try and then go and find it without using the word “cancer” in any search.
After a while I found a complete underground network of intelligent, well meaning people who are wary of new people trying to get help but incredibly helpful once they are happy with you.
There’s also a large community of scientists happy to poo poo all alternative therapies on the basis “there is no proof they work”. There never will be either if nobody does the research but that doesn’t occur to them. “No proof = quackery!!” is the cry. Yet 6 months after my first foray into alternative treatments, my tumours reduced and my oncologist said “I’d be really pleased if we got that result through chemotherapy”. This convinced me that platinum based chemotherapy would never be of any use to me yet that was all I was offered.
You may also want to look at my comments on Dr Mark Saunders of The Christie who The Victoria Derbyshire program wheeled out to trash The Hallwang Clinic. In an article from some years ago he actually admits that NHS doctors do not tell patients about drugs that are not funded on the NHS which could save their lives.
So whilst discussing things with your NHS consultant should be good advice, in practice it is a bit of a waste of time.
Clinical Trials – A Good Way to Access Treatment?
This, in my view, is complete and utter hogwash. Clinical trials are held for the benefit of Pharmaceutical companies and the main priority is establishing the efficacy of the drug under trial.
Clinical Trials are carried out in a number of phases and patients should be aware of what phase they are enrolling for and what the aim of the trial is.
Patient health is a long way down the list of priorities.
Quite often though, clinical trials are the only way to access new treatments and so people will enrol just to have a chance of accessing the treatment. Again, it should be borne in mind that the drug is under trial, they are not trying to cure patients, people die on clinical trials.
People also die because although the drug is proving beneficial, when the trial comes to an end the patient no longer has access to it. There are other risks as well as this article from The Independent points out.
In my view patients are too easily directed towards trials without being fully aware of the risks involved. I also feel that because cancer patients are so vital to carrying out clinical trials; they should be paid to go on them. Without patients trials cannot be held.
I also think that Rose Gray has a massive conflict of interest in saying that “Clinical Trials are a good way of accessing new treatments” as she is representing Cancer Research UK; their whole existence relies on carrying out clinical trials. The ethics of raising money from the public and getting cancer patients to freely enrol in trials for that drugs that could go on to ake billions in profits for drug companies is perhaps for another post.
Accessing Independent Advice – Easier Said Than Done.
One of the things announced in the Victoria Derbyshire article on Crowdfunding was that the Gofundme.com website would now direct anyone crowdfunding for cancer treatment to “independent advice” on cancer treatment.
This is a great cry but where exactly will people be directed to?
First of all Gofundme.com is a US company and so presumably their first choice will be US based websites? maybe the FDA website? Or possibly the National Cancer Institute? Neither of these are really relevant to UK patients.
Maybe they will distinguish between patients in the US and those in the UK? so where would someone in the UK go for independent advice on cancer treatment? Well clearly not the NHS website as it will not cover treatments that are not authorised for a particular cancer. Also, Cancer Research UK is not exactly independent; it is a charity but it is research driven not patient driiven. In fact due to the Cancer Act 1939 (see above) nobody in the UK can (officially) give independent advice on cancer treatments that are not already approved for use.
So a source of independent advice makes for a good statement but in practice is pretty difficult to achieve.
My comments on The Victoria Derbyshire Article on The Hallwang Clinic
Below are the two films answering the second piece which was supposed to be on “Overseas clinics and why people go” but actually turned out to just be a hatchet job on The Hallwang Clinic.
I thought that this was biased, unfair to the clinic, poorly researched, details not checked and it made sweeping statements without any evidence to back up what was said. I wasn’t the only one who felt this and this will come out in the films.
Its interesting to note that in the second article, not a single person interviewed had a bad word to say about the clinic or the treatment that their relative had received. All the criticism and accusations came from Jim Reed (the BBC’s reporter).
The only accusation from a relative about the clinic was Helen Sproates who complined that her daughter’s testimonial was still on the clinic’s website. I discuss Helen Sproates in some detail below but its worth noting that the clinic claim she had never asked them to take it down.
Anyway, I try and address the major critisisms and accusations made against the clinic below to give a more balance view. I will also provide evidence to back up what I say which is more than the Vivtoria Derbyshire show did!
“Authorised for use on the NHS” – a Deeper Look
Authorised for use on the NHS
This was brought up time and time again in both articles and seemed to be used to say that if a drug was not licensed for use on the NHS then it should never be used. The impression given was that the NHS authorisation process was some sort of Gold standard for the efficacy of drugs. So I think this needs looking into a bit more deeply as that isn’t the case.
So how are drugs authorised for use by the NHS? Lets have a look at a few links:
- NHS – An overview (its actually not easy to find any detail from the NHS).
- Cancer Research UK – gives a slightly more detailed description of the drug approval process.
- Institute of Cancer Research (ICR) – gives a bit more detail on how long cancer drug approval takes.
So we’re looking at a process that waits for the European Medicines Agency (EMA) to approve something, then the The Medicines and Healthcare products Regulatory Agency (MHRA) consider and approve it for use on the NHS, then The National Institute for Health and Care Excellence (NICE) get involved to “assess it to see whether it should be widely available on the NHS in England” (Scotland, Wales and N.I. have their own verions of NICE and they don’t always agree). Essentially NICE are involved in price negotiations and restrict access to approved drugs on the basis of cost.
As you can see from the ICR link, in 2016 the average time from patent to NICE approval was 14.1 years between 2009 – 2016, and it is getting slower all the time.
It is also worth noting that drugs have to go through the full process for every separate type of cancer. Now there are only 5 main types of cancer but the way they are categorised (place of origin and type) means that there are many, many different forms of cancer, each has to go through the process separately. So Squamous Cell Carcinoma of the Head & Neck is considered a different cancer to Squamous Cell Carcinoma of the Skin so any drug that could be used to treat them both must go through two separate sets of trials etc.
Given the cost of running clinical trials, pharmaceutical companies tend to work on drugs that will be used on the largest patient populations. This is because when the drugs are authorised the drug companies can recover the cost of the trials and also make a profit. They simply do not bother with rare cancers and conditions unless they have a sound business reason to do so.
Also many drugs are already authorised elsewhere in the world before the NHS even consider them as the NHS wait for the EMA and the EMA tend to wait for the U.S. authority; the U.S. Food and Drug Administration (FDA).
Its quite easy to find what a drug is approved for in the U.S. you can look it up on Drugs.com. However, finding what a drug is approved for on the NHS is somewhat trickier; you need to know the generic name not the trade name and then find it on this 99 page PDF (dated 2019) If this link fails to work then there will be an updated version of the list available here. I then looked at the NICE evidence services for each drug which gives information about the drug, what it can be used for and lists in date order NICE decisions on the specific drug. (Not like the NHS to be opaque and make things hard to find is it?)
Lets look at some drugs that people typically go abroad for and when they approved by the FDA then what their status is within the NHS. :
- Avastin (bevacizumab) – FDA Approval: first in 2004, now approved for a number of cancers. Jim Reed (BBC reporter) claimed “science not clear on Avastin”.
- Avastin (bevacizumab) – NHS status: First line treatment of recurrent or metastatic cervical cancer in combination with chemotherapy (from 29 Jul 2016); third line treatment of low grade gliomas of childhood (from 29 Jul 2016); first line treatment of advanced epithelial ovarian, fallopian tube, or primary peritoneal cancer (from 29 Jul 2016) . Note: each of these approvals is subject to a long list of criteria for each one, please consult the PDF (link above) for details. NICE evidence services for Bevacizumab earliest decision 2007.
- Keytruda (Pembrolizumab) – FDA Approval: From Sep 2014 for advanced Melanoma, many other cancers since then.
- Keytruda (Pembrolizumab) – NHS status: treatment of locally advanced or metastatic urothelial cancer previously treated with platinum-based chemotherapy (16 Mar 2018) ; treatment of first line treatment of locally advanced or metastatic urothelial cancer in patients who are ineligible for cisplatin-based chemotherapy (27 Apr 2018) ; treatment of relapsed or refractory classical Hodgkin lymphoma in ADULTS who are stem cell transplant-ineligible and have failed brentuximab vedotin (25 Jul 2018); treatment of relapsed or refractory classical Hodgkin lymphoma in CHILDREN who are stem cell transplant-ineligible and have failed brentuximab vedotin (25 Jul 2018); adjuvant treatment of melanoma with high risk of recurrence (19 Dec 18); in combination with pemetrexed-based combination chemotherapy for treating untreated PDL1-positive or negative locally advanced or metastatic non-squamous non-small-cell lung cancer (22 Nov 2018). Note: each of these approvals is subject to a long list of criteria for each one, please consult the PDF (link above). NICE evidence services for pembrolizumab (earliest decision 2017).
- Ipilimumab (Yervoy) – FDA Approval: From March 2011 for late stage melanoma, combination therapy of Nivolumab and ipilimumab for melanoma approved 2015.
- Ipilimumab (Yervoy) – NHS Status: Doesn’t appear on PDF other than to say Nivolumab in combination with ipilimumab for treating advanced melanoma (funding started 25 Oct 2016). Note: this approval is subject to a long list of criteria, please consult the PDF (link above). NICE evidence services for Ipilimumab (earliest decision Dec 2012).
- Nivolumab (Opdivo) – FDA Approval: From Dec 2014 for advanced melanoma. Many other approvals up to Aug 2018, including combination therapy with ipilimumab.
- Nivolumab (Opdivo) – NHS Status: treatment of previously treated locally advanced or metastatic non-squamous non-small cell lung cancer (Sep 2017); treatment of previously treated locally advanced or metastatic squamous non-small cell lung cancer (Sep 2017); treatment of recurrent or metastatic squamous-cell carcinoma of the head and neck after platinum-based chemotherapy (Oct 2017); Nivolumab for the adjuvant treatment of newly diagnosed and completely resected stage III or completely resected stage IV malignant melanoma (Nov 2018); In combination with Ipilimumab 1st line treatment of intermediate or poor risk advanced renal cell carcinoma (Apr 2019). Note: each of these approvals is subject to a long list of criteria for each one, please consult the PDF (link above). NICE evidence services for Nivolumab (earliest decision Feb 2016).
So as you can see, drugs “Not approved for use on the NHS” does not mean that these drugs haven’t been through extensive trials prior to approval in other areas of the world. It isn’t a measure of a drug’s efficacy on a particular form of cancer.
You can also see that drug approval in the UK is typically 4 years behind approval in the U.S. A lot of people will die in that 4 year gap between approval dates because their cells won’t wait for NHS England to make a decision.
Also, even where drugs are now approved for use on the NHS, many of them are subject to a long list of very specific criteria and are only available subject to “specialist use only” criteria.
Using Avastin as an example; this is the drug Stephen Powell’s son Jayden was treated with at the Hallwang Clinic for his Gliablastoma. Avastin was approved for use on Gliablastoma on May 6, 2009 in the U.S.but is still not approved for use on the NHS.
Jim Reed (BBC reporter) described using Avastin: “Research shows that Avastin may lead to a small improvement in life expectancy, though the science is far from settled”. Its pretty settled in the U.S. and has been since 2009, also it was apparently working on Jayden. It just isn’t available in the UK on the NHS. Jim gives no evidence to back up his statement or what research he was talking about but he was clearly talking it down as it fitted the tone of his article. The old journalist adage is probably apt here; “Never let the truth get in the way of a good story.”
The lack of up to date treatment in the UK is one of the reasons UK patients look for treatment abroad. In this case the drug being used isn’t experimental, it has been through extensive trials and has been approved for use by one of the World’s leading drug agencies. But as it isn’t approved for use on the NHS this seems to be good reason to cast doubt on its use particularly to an uninformed audience.
Unproven & Untested Treatments
This again was an accusation aimed at the Hallwang Clinic a number of times in the second article, both by Jim Reed and the NHS consultant Dr Mark Saunders (I cover him separately below as I thought what he said was disgraceful with no evidence provided to back it up).
The Hallwang Clinic do not offer unproven or untested treatments. All the treatments they offer have either been extensively trialled or have been shown to work on patients with specific forms of cancer. Many are already approved in other countries, but are not approved by the NHS.
I hope I’ve shown above that just because something isn’t approved by the NHS that doesn’t mean it doesn’t work. The NHS is extremely slow to approve treatments compared with other countries and may also not allow treatment to be used on the NHS because they do not consider it “cost effective”.
One issue regarding The Hallwang Clinic is that they do not publish much information regarding the treatments they offer on their website, instead they tend to publish technical information on their facebook page. If you have a look at that, you can see how up to date they are and the academic research which backs up the treatment they offer.
The Hallwang Clinic does offer alternative therapies but hardly any of the UK Patients I met there bothered with them and they weren’t the main reason they had gone to the clinic.
Comparison with “Standard Care in the UK”
It is quite unfair to try and compare the treatment provided at The Hallwang Clinic to what Jim Reed refers to as “The standard of care in the UK”.
The Hallwang Clinic provide up to date treatment for many cancers that is simply not available in the UK. Also, most of the UK patients who go to the Hallwang Clinic have exhausted the treatment options available to them in the UK.
People being treated in the UK by the NHS are treated from initial diagnosis (which is often late), not from when they have exhausted treatment options. They are treated according to very rigid pathways and can only be treated with drugs authorised by the NHS for use on their specific cancer.
Now is probably a good time to include the case of Mark Hird whose testimonial was used in the second article (without his permission) in a pretty weak attempt to illustrate that The Hallwang Clinic tell patients they can “beat cancer” (they never tell people that in my experience).
This is what Mark wrote on Facebook immediately after the second article was broadcast:
Mark’s story is far better than mine at illustrating how ludicrous the approach to cancer treatment is in the UK. Despite him having an analysis of his biopsy confirming none of the authorised treatments will work, despite this analysis telling him what could work and despite his results from treatment proving it does work: he cannot have his cancer treatment funded by the NHS because the treatment that works on him is only authorised for Breast Cancer not Colorectal Cancer. How ludicrous and bureaucratic is that!
The ironic thing is that under the German medical system, having proved a certain treatment works on him, he would be fully funded by the German medical system for his cancer treatment. This says quite a lot about the “standard of care in the UK”.
Here’s an article from the Guardian in 2017 highlighting how far behind the UK is in terms of cancer survival rates compared with other countries and it is much easier illustrated by the website set up to compare incidence, mortality, spending etc.
Dr Mark Saunders, The Christie Hospital
I thought what this NHS consultant said was disgraceful and he didn’t back up a single statement with any evidence. So I’m going to look at what he said and try and put it in some perspective.
Jim Reed starts off this section with the now familiar voice-over suggesting that the clinic is doing something underhand. He says:
If a drug isn’t tested and licensed for a type of cancer the chances of it working are likely to be very low and there is a risk of serious side effects.Jim Reed, Victoria Derbyshire Program, BBC, 07/03/19
Now I’m not sure if he’s putting words into the consultant’s mouth or just suggesting he said this but either way its rubbish. All the drugs the Hallwang use are tested and usually well trialled or they wouldn’t use them. Just because a drug isn’t licensed in the UK doesn’t mean “the chances of it working are likely to be low”, I think we’ve demonstrated that enough (my case; Mark Hird’s case; all the people having to fund their own treatment on the NHS and progressing well, the same drugs licensed in the US but not licensed in the UK, etc). Finally, the part about “and there is a risk of serious side effects” is just a ludicrous statement that demonstrates the lack of knowledge about what he’s talking about. Pretty much any treatment can have serious side effects whether it is licensed or not. Radiotherapy can give you cancer, chemotherapy can kill you, immunotherapy drugs can also kill you. Its just the occurrences are rare, but I’ve signed consent forms for all these treatments in an NHS hospital confirming I’m aware of the risks.
Next Dr Saunders waffles on about “a particular patient who refused a lot of conventional treatments and was given a range of unusual treatments at one of these clinics – its very sad to see that happen”. We have no idea who or what treatments he’s talking about as he provides no evidence of any of this. A patient refusing conventional treatment is fairly unusual in my experience, although I wish I had as none of it did me any good.
Next he says “I’m not sure how the doctors at the clinic can sleep at night when they are giving treatments that are not proven”. Again no evidence or inkling about what he’s talking about, this is just a slur from someone whinging on as far as I’m concerned. What treatments is he talking about?
Next is a statement almost as pathetic as the last one; “I never received a letter from the clinic, I only got details from the patient”. The NHS obsession with sending and receiving letters! Why on earth should a private clinic in Germany send a letter to an NHS consultant? They probably don’t know he exists or has anything to do with whoever this mysterious patient is. I’ve tried to get NHS consultants to collaborate with the clinic regarding my treatment and have failed, usually due to consultant ego. In my case the clinic has far more experience of the treatment I received than anyone in the NHS as it isn’t available in the UK.
Lastly he says “When they come back with problems we have to deal with that”. I can’t dispute this as again we have no idea who he’s talking about but I very much doubt this is true, good on them if it is. Most people going abroad for treatment not available in the UK are shunned by the NHS when they return (happily I wasn’t) and there is little interest in the treatment you have received.
This part of Jim Reed’s piece was so weak I wondered why they had wheeled Dr Mark Saunders So I had a bit of a google of him.
- He is a consultant oncologist at The Christie in Manchester whose main interest is running clinical trials. Possibly why he poo poos anything not authorised for use in the UK.
- He also unsurprising works for Christie Private Care under HCA Healthcare.
- He’s also an advisor to Beating Bowel Cancer; a cancer charity. Given one of the main (unevidenced) accusations of the Victoria Derbyshire program about the Hallwang Clinic was that they tell patients they can “beat cancer” I find this pretty ironic.
- He comments in this article in the Telegraph from 2009 about doctors not telling patients about drugs that can help them. At the time “Top up funding” was much more widespread across the NHS but seems to have been quietly dropped by many hospitals and NHS England have no published policy on it. He doesn’t actually say that he didn’t tell patients about drugs that would help them but were’t available on the NHS but it looks like that’s what he did. How can he sleep at night?
- He also comments in this article from The Keighley News from 2016 on Sally Major who went to the Hallwang Clinic and the indications were the treatment she was getting there was working. He completely ignores this and trots out the same line about “unproven treatments, not been through clinical trials” etc. As you can see in the article; Sally Major was wrongly diagnosed for 4 years and then given weeks to live. Does anyone wonder why people go abroad for treatment? How does Dr Mark Saunders sleep at night?
I’m assuming that the article in the Keighley News was where Jim Read found Dr Mark Saunders, so he knew he’d get a suitable quote for his hatchet job on the Hallwang.
In the Keighley news article he also says:
“If they have the funds, there are private clinics here to get proven treatments not funded by the NHS; there is also a top-up option where patients can buy the treatments privately but still get the rest of the NHS service free. If anyone ever feels they are not getting the right answers from their consultant they can also get a second opinion.”Dr Mark Saunders, Keighley News, 13/02/2017
That may be the case if their doctor actually tells them about those drugs (see above). In 2016 I was told that I couldn’t be treated by the NHS in the UK even if I paid for the drugs myself. I couldn’t find anywhere who treat me privately either. I also found in early 2017 that trying to get a second opinion was a waste of time as well. Google NHS top up funding and see if you can find an NHS England policy.
So he’s pretty good at bullshitting by the looks of things. Maybe he just wants to make money out of patients by refusing them treatment then treating them privately? Surely not?!?
Interestingly Sally Major died at the Hallwang Clinic a few months after that article. After she died at the clinic her husband said “Whilst the treatment was working, her kidneys couldn’t handle anymore. The doctors and nurses here tried absolutely everything and have been brilliant.” Its a shame she was diagnosed 4 years late and then given up on.
The Hallwang Clinic
Firstly, its worth pointing out that the Hallwang Clinic are absolutely baffled by the Press they get. As far as they are concerned they are offering the latest cancer treatments to patients who are otherwise unable to get them and attend voluntarily. They don’t understand why everyone who writes about them runs them down, usually with no experience of the clinic and no (or hardly any) contact with patients or their families.
So Why do People from the UK Go?
Is It Because of The Hallwang Clinic’s Marketing?
If you click here you can see what Google UK returns when you search for them. It doesn’t take long to start finding very negative blog posts and articles on the clinic (I may discuss them in other posts when I get more time but I may not as I don’t want to give them publicity). One of my blog posts is about at the bottom of the first page so I’m quite pleased with that.
The point I’m trying to make is that their online marketing and online presence generally is pretty poor, they are not very good at it. I’ve taken this up with them before, when I was visiting but they haven’t really addressed it.
This is something to bear in mind when you see the articles talking about the Hallwang Clinic’s marketing; it is actually non-existent in the UK.
Patients are Failed by the NHS
I firmly believe that people are given a terminal prognosis (and are thus given up on) far too early in the UK.
In my case I had just been through all the conventional therapy and was recovering from it. All the talk before the treatment was along the lines “best chance of a cure”. I felt fit and well and was getting my physical strength back, I’d started to sail again. When I was told I was terminally ill with no treatment options, I could not understand it, I felt so well?
I was in shock for a day or so, then just thought I’m not having this I must be able to do something. And that is what led to this blog.
After a terminal prognosis you move from treatment to palliative treatment. Everyone has decided you are dying so nobody will even consider attempting to save you, its very frustrating and disheartening. I have a suspicion that terminal patients have their budget for treatment cut to a bare minimum as I always have to nag and nag to get anything. Certainly nobody is proactive, if you don’t bother badgering your consultant and others, nobody checks how you are. You can literally go home and wait to die and nobody from the NHS will get in touch with you at all, as far as they are concerned you’re a goner.
I’ve also commented in this blog about how reluctant your NHS consultant is to discuss treatment that is not authorised by the NHS but may well be of use to you. (See also the section on Dr Mark Saunders).
A lot of patients find themselves in this position but are shocked to find that there is apparently nothing that can help them. If they are not inquisitive, they will just die of their condition. However many are inquisitive and their desire for survival comes to the fore so they start researching to see if there is anything they can do for themselves. That is what I did and I’ve documented it in this blog.
It should be said that many patients at The Hallwang Clinic had horror stories about their NHS treatment and the care they were receiving. In my case I wasn’t particularly happy to find that all the conventional treatment I had been given had never been successful on any other patient with my condition ever, apart from the surgery. If you can create a fire break in your body so the cancer can spread no further, this had helped people.
So researching brought up a few things I could try and something in the regime I came up with started to slow the spread of my cancer down (see this blog post from Aug 2015 and this from Feb 2016) I even managed to reduce my tumour size slightly when officially I was receiving no treatment. I’m convinced that the regime I adopted slowed down my cancer but I never had any idea if it was a combination of things or just one element. But it never stopped my cancer spreading, just slowed it down.
We carried on looking at things through 2016 (Cannabis oil, re-purposed drugs etc) and then hit on immunotherapy (see this blog post from Jan 2017). Now by this time I should have been dead, I had been given 3 to 18 months in May 2015 but was still alive in Jan 2017 (not very well but still alive). I know prognoses are not very accurate but mine was pretty wide and I’d beaten it. I found later that the NHS stated mean prognosis is “less than 2 years” from diagnosis of metastasis; I had by now lived for just over 3 years so had beaten that too.
So in this situation, when you find something that you think has a really good chance of helping you, its very difficult to get any useful information in the UK or get anyone to take you seriously.
Many UK cancer patients find themselves in the same situation; no treatment options; treatment not working, sent home to die, etc. If they find a treatment that has been used with great success on their condition they are refused access on any basis in the UK. So they look elsewhere.
But as I found when trying to find somewhere to treat me with immunotherapy drugs, The Hallwang Clinic didn’t even come across my radar.
UK Press Coverage of The Hallwang Clinic
In Jan 2017 I found an article in The Times on people crowdfunding their cancer treatment abroad. A couple of the people in the article mentioned The Hallwang Clinic and I contacted them and the clinic. The patients only had good things to say and the clinic approached my case professionally. After the ridiculous second opinion from The Royal Marsden I decided to go to The Hallwang Clinic.
The UK Press have publicised a number of patients going to the Hallwang Clinic in a very favourable way and it is mainly this coverage that brings The Hallwang Clinic to people’s attention and convinces them to go, quite often without looking into it too deeply.
The same elements of the Press are also happy to jump on the bandwagon when somebody else runs the clinic down though, no wonder people shouldn’t believe what they read in the Press.
Let’s see if we can find some examples; The Daily Mirror is a serial culprit for contradicting what it has previously published. Here’s the Daily Mirror article on The Hallwang Clinic (now taken down from their online site) which ran immediately after The Victoria Derbyshire Show articles.
In it you’ll see that they make the point that one patient “went because of Gemma” referring to Gemma Nuttall. Here’s the Daily Mirror’s article on Gemma Nuttall from Feb 2018 where they describe the clinic Gemma attended as “a German wonder clinic”. Its not a difficult step to find that Gemma went to the Hallwang Clinic.
I’ve spoken to The Hallwang Clinic and they say that the number of UK patients going to the clinic rose exponentially after the coverage of Leah Bracknell deciding to go there. Here’s the Daily Mirror’s article on Leah deciding to go to The Hallwang Clinic “a specialist clinic” and “The couple say the hospital’s cutting edge techniques, which are not available on the NHS, have seen previously diagnosed “incurable” cancers put into remission.”.
They also promote Leah’s fundraising page but have clearly now decided that crowdfunding for overseas is terrible and that these clinics are peddling “false hope”. Anyone else smell the hypocrisy?
Of course it isn’t just The Daily Mirror, The Daily Mail are just as good at promoting the Hallwang Clinic then saying its terrible.
- Daily Mail on Leah Bracknell
- Daily Mail on Gemma Nuttall (4 Feb 2018)
- Daily Mail’s outrage after Victoria Derbyshire Show articles – they state that “A German cancer clinic has been accused of using a British mother it failed to cure as ‘marketing material'” despit the fact that their article above stated their treatment had go her clear of cancer (see also the section on Helen Sproates below).
There are dozens of other examples of the Hallwang clinic and others being reported as “wonder clinics” by the UK press and media, including other BBC programs (This Morning parictularly). Its a bit hypocritical in my opinion for them to then turn round and accuse the clinic of “peddling false hope” when actually the reason most UK patients are there is because they read about the Hallwang Clinic in the press or heard about it on TV.
The Hallwang Clinic Costs
This is brought up time and time again about the clinic and not just by The Victoria Derbyshire Show Articles. To the people of a country where the majority of people never directly pay for their medical treatment and private medical care is usually the perk of people’s jobs, the costs of actually paying for private care come as quite an unwelcome surprise.
In my answer film I ridicule Jim Reed for walking up and down outside the Hallwang Clinic saying “A single stay can cost tens of thousands of pounds, many patients come not once, but time and time again”. I’ll look at the actual costs further down, but to sound surprised that people don’t get cured of cancer in one visit is disingenuous at best and infantile at worst. Its barrel scraping journalism.
The first visit usually does cost far more than any subsequent visit because of a number of reasons. Many patients arrive with other issues or in a state where they are not fit to be treated, these issues have to be dealt with before the actual cancer treatment can begin. An Australian who was there during one of my visits had contracted an infection which had to be cleared before he could be treated, he was adamant that he’d picked it up in the clinic or local hospital and wouldn’t listen to the suggestion that perhaps a 22 hour flight with a trashed immune system may have been the cause. Sometimes the initial treatments have to be done over a number of days whereas return visits for treatment usually only take one or two days.
In my case my first visit lasted a week and cost me £60,000 approximately. This was because I had an underlying issue which had to be treated. I also needed a PET-CT scan to provide a base scan to measure the treatment against (I had been refused PET-CT scans in the UK as I am only entitled to palliative care). The vaccine treatments needed to be done multiple times (six) at the beginning of my treatment for them to be the most beneficial, whereas I only needed one on subsequent visits.
Another thing to bear in mind is that the cost of treatment at a Private Clinic in Germany is subject to “Mehrwertsteuer” which is their equivalent of VAT and is charged at 19%. So of my first weeks costs; about £11,400 went in tax to the German Government.
So let’s look at the actual costs and try and compare them (where possible) to private treatment elsewhere.
First the cost of staying at the clinic (figures from my bill from 26/04/17, inc of 19% tax):
- For a patient the cost of an overnight stay in the clinic is €650.00 – this covers 24 hour on site medical care, all your meals and any other drinks and refreshments you have.
- For a relative accompanying a patient (staying in the same room) is €135.00 – this again covers all meals and refreshments.
Now it quite difficult to get an accurate equivalent cost for an overnight stay in a private hospital in the UK to compare this with, as they tend to only advertise the cost of various procedures. Two sources that I did find are as follows:
- Netdoctor says the price per night is £275.00, but that seems to be just for the room, it isn’t clear whether that includes meals. It certainly doesn’t include consultant or nursing costs. I doubt a relative could stay with you.
- Dorset County Hospital have published their private patient tariff for 2018/2019 – this puts the price of a room at £400.00 and again isn’t clear whether that covers meals. It doesn’t cover any medical care.
- NHS Improvement have published a tariff but I couldn’t make any sense out of it, you’re welcome to try.
So the overnight stay cost at The Hallwang Clinic looks pretty much in line with any private hospital in the UK when you take into account what is covered. If you have to stay in a private hospital for an extended period, obviously the costs to stay will quickly mount up.
The biggest cost to any patient at The Hallwang Clinic are the cost of the drugs you are being treated with. Usually these are recent developments and as the clinic is so small it cannot negotiate the same discounts as the NHS can, they are also a business so have profit margins. It’s very difficult to obtain comparative costs for the drugs used but I’ll try my best.
So the main drugs I was treated with (with costs in 26/04/17 including 19% tax) were:
- Pembrolizumab (100mg) – €11600.00
- Ipilimumab (50mg) – €5500.00
- THX Vaccine – €4500.00 (I had 6 of these the first week I attended).
Firstly, Pembrolizumab; in 2016 when I discussed this with my NHS Oncologist, he struggled to get a definite price for it (mainly as the NHS wouldn’t treat me with it anyway) but he told me that it would be in the region of £7000.00. So the price I was charged at the Hallwang doesn’t look so terrible if you convert to Euros and add 19%.
In late 2017 when Pembrolizumab and Ipilimumab had been in use for a while within the NHS, I was treated at Southampton University Hospital on the same drugs (same doses) . The price provided for both drugs was £5,617.45 per treatment. Now this is considerably lower than I was charged at The Hallwang Clinic but by now the NHS had negotiated considerable discounts with the manufacturers as they were treating thousands of patients.
I am currently being treated with the two immunotherapy drugs at my local NHS hospital on the basis that I fund the drugs. I was initially told that the cost would just over £4000.00 per treatment but the first bill was just over £4800.00. I don’t know how this breaks down as despite requesting an itemised invoice, one has not yet been forthcoming. So 2 years on from my treatment by The Hallwang Clinic, the price to the NHS has fallen again.
At the beginning of the year I was offered the opportunity of being treated privately in the UK and was told the cost of 4 treatments (of both drugs, same doses) would be in the region of £50,000. That wasn’t including any overnight stays and wasn’t broken down in any way as to the cost of drugs, facilities etc.
I cannot find any sort of comparison for the vaccine treatment as in all honesty I don’t quite know what it was. It was a generic vaccine (i.e. not produced from my tumour tissue) and its purpose was to break down the protein Survivin which my cancer was using to hide itself from my immune system.
So was I overcharged? Personally I don’t think so, but that is probably because the treatment worked on me and almost cleared my body of cancer. The Hallwang Clinic was the only place I found that would treat me, and give me definite costs for that treatment, at the time and I didn’t have time to shop around as I was almost dead.
I think the real difficulty people have with the cost of treatment at The Hallwang Clinic is that the cost of private treatment is completely unknown to them as hardy anyone in the UK is actually used to paying for private treatment. It’s easy to shock people by telling them it costs “tens of thousands of pounds” as The Victoria Derbyshire program did.
The cost of a course of private treatment for cancer is high wherever you go, particularly for leading edge treatments. The majority of people cannot afford it either. In truth I couldn’t afford it, I emptied my personal pension and used my Army pension lump sum to fund my treatment as I reasoned that I wouldn’t need them if I didn’t try the treatment. I had no doubt I was close to death when I went to The Hallwang Clinic in early March 2017.
I can’t sustain paying the NHS for my cancer treatment either but I have to to remain alive. NHS England has refused funding 3 times now despite the overwhelming evidence that this treatment works on me and there is no other licensed treatment for my condition.
I’m currently being treated with the two immunotherapy drugs (self funded) and am responding really well. Yet I doubt this will be considered when I next put in a funding request. I’m not alone in this predicament and that is the real scandal that The Victoria Derbyshire show should investigate, but that would take a bit of proper journalism.
Other Points Regarding The Hallwang Clinic
The clinic is not perfect, I don’t think anyone who has been would say it is. Some of the things said in the articles about them were fair points, but they are happy to address these things if somebody takes them up with them and suggests what might be a better way of doing things. I certainly do.
But for me, what isn’t in doubt is the excellence of their approach to personalised cancer treatment, the standard of facilities and the standard of the medical care.
They do have a high Doctor/Nurse to patient ratios and one of the reasons for this is because the are a tiny clinic. There are usually only half a dozen or so patients there at any one time. The rooms are really well equipped and comfortable, they look like hotel rooms but are actually individual private medical suites. The food is fantastic, it is designed to be fresh and nutritious in a way that it is positive for cancer sufferers. Relatives can stay there extremely cheaply (see costs) but the price for patients is high as they provide 24 hour nursing care, and some people need it.
They don’t have a very good success ratio, but are successful with a number of patients including me (and Gemma Nuttall). Nearly all the people that I met there have passed away since the end of my treatment. But this is because everyone is already terminally ill when they go and are often very ill when they get there (I was, and many were in a worse state than me). The clinic try their best but they cannot save everyone, particularly as most people are quite near to death on arrival.
Many of those I met were incredibly grateful for the extra time they had been given, I feel the same; I would have died in April 2017 if it wasn’t for The Hallwang Clinic.
One of the doctors at the clinic lamented “if people came earlier, we would have a better chance of success with them” and that’s a fair point. The NHS are diagnosing patients so get in at the start, a lot of people die from cancer whilst being treated in the UK. These are Cancer Research UK’s stats on cancer deaths in the UK.
Helen Sproates & Gemma Nuttall
I find this part probably the most difficult to write as I am well aware that Helen Sproates has lost her daughter to cancer and her grand-daughter has lost her mother at an incredibly young age.
Gemma’s story was absolutely tragic, I read it at the time and thought “Good grief, I thought I had problems”. Someone so young faced with that diagnosis and prognosis at a time when she was pregnant. She was given the option of possibly saving herself but losing the child, or having the child and then having progressed too far to be saved. That is not something anyone should have to face in their 20’s.
However given the amount of time in the two pieces taken up with this story, her comments were very influential. I feel that Helen Sproates has completely misrepresented her case and she is particularly (and unjustifiably) unfair on the clinic. I feel that her case should be set out clearly so people can judge whether the clinic is to blame for her daughter’s death or not, as I feel that was the tone of both articles. They should be able to determine whether the clinic’s role was beneficial or not to Gemma as well.
Writing this and criticising her will undoubtedly bring accusations of me being cruel, and that is not my intent. I just think she misrepresented her case unfairly to shed a bad light on the clinic. Unless she was also misrepresented by the Victoria Derbyshire program by careful editing as Stephen Powell says he was.
Another issue is that Gemma was reported in the press as having experienced a “miracle cure” at the Hallwang Clinic. In fact she got incredible press coverage throughout because of Kate Winslet’s involvement in her fundraising (and Leo di Caprio’s). Many people have been encouraged to go to The Hallwang Clinic because of seeing her story in the press and on TV, yet Helen has hardly a good word to say about the clinic. I don’t understand that.
So what actually happened in this case? Well there is so much online from the various press sites that it is difficult not to be able to get a full idea of the story.
If you click here you will see the Google results for “Gemma Nuttall Kate Winslet” and there is plenty to go at. All stages of her journey can be found documented in press articles, on youtube and facebook as well as her fundraiser that Helen Sproates ran. So I’ve used information from all these sources to put together a timeline from her story.
- 2014 – diagnosed with Ovarian Cancer when 16 weeks pregnant. Refuses termination.
- At 36 weeks has C-section to have child and also facilitate tumour removal with no risk to the child.
- Late 2016 scans show cancer has returned and spread to her brain and lungs.
- Told no more treatment available in the UK and given 6 months to live.
- Raised £17882.83 justgiving.com (campaign closed 6/10/2016)
- Started fundraising on Gofundme approximately 29 months ago (End of 2016)
- 24 Jan 2017 – Rossendale Free Press reports Gemma planning to go to Dr Klehr Institut in Munich
- Mar 2017 – GoFundMe compaign update 4 states planning to visit Munich clinic.
- Apr/May 2017 – visits Hallwang Clinic (GoFundMe campaign update 5 says funding campaign reopened)
- May 2017 – begins treatment at Hallwang Clinic (update 6)
- May 2017 – Kate Winslet gets involved in fundraising
- June 2017 – reports astounding results after 1 treatment at Hallwang Clinic, no treatment in UK for 10 weeks, sent ho,e with no treatment options. (update 9)
- Aug 2017 – reaches target of £300,000 on Gofundme (update 12)
- Sep 2017 – Continuing visits to Germany, talks about maintenance program
- Sep 2017 – Comments on my blog post about my treatment plan at Southampton. This is the only mention I can find anywhere where she says she is grateful to the clinic, yet she clearly still doesn’t trust them. She talks about “ALL our money” when it isn’t her money and talks about finding alternatives to the clinic in the UK (“try the Southampton route”). You can read about the resulting email exchange here.
- Oct/Nov 2017 – Update 15 announces full body scan and head MRI scan of Gemma both come back clear (No Evidence of Disease – NED). Talks about going to the Christie in Manchester, hoping for maintenance program to be put in place there.
- Oct 2017 Rossendale Free Press reports Gemma cancer free.
- Jan 2018 – Quite a bizarre update to her fundraiser (update 16). Talks about “No happy Christmas and now no happily ever after either” ??? Her daughter has been declared clear of cancer! I don’t understand. She goes on to talk about her daughter’s grim future as a single mother as well; “the life you saved is a pretty miserable one” and “not a life at all, it is an existence” – very odd, I’d be doing cartwheels if I was clear. Then she says “we have used half the funds raised to date” and “it won’t take long for £175,000 to disappear” so they are continuing to fundraise to make memories. I actually don’t understand any of this, Gemma is clear of cancer and, to me, £175,000 is a hell of a lot of money! I have no idea if Gemma is still being treated anywhere at this time but they do mention a scan coming up in Feb.
- May/Jun 2018 – A scan shows Gemma’s cancer has returned to her spine, she is unable to fly, they are talking to the Christie about immunotherapy. It looks like she has had no treatment since Sep 2017 but it isn’t clear. (Update 17)
- Sep 2018 – (update 18) The cancer has spread to Gemma’s brain, lungs, spine and spinal cord. The Christie has now offered her some immunotherapy, so this suggests she hasn’t had anything but radiotherapy between Sep 17 and Sep 18.
- Oct 2018 – Lancashire Telegraph reports Gemma’s death.
Now that timeline makes for tragic reading, the whole saga is so sad and I really do feel sorry for Helen Sproates and particularly for Gemma’s daughter Penelope. It is heartbreaking.
But it doesn’t actually match the impression given by Helen Sproates of her case on the Victoria Derbyshire program does it?
As far as I can see they raised around £350,000 for Gemma’s treatment, spending £175,000 on treatment at The Hallwang Clinic which got Gemma from brain and lung metastases with no treatment options to NED in 6 months.
After that, they didn’t return to the clinic and also don’t seem to have had any further treatment (other than radiotherapy) after leaving the clinic. This is despite mentioning on my blog and in their funding campaign that the clinic recommended a maintenance program and also having £175,000 of other people’s money to pay for it.
I contacted the Hallwang clinic last weekend and they told me she would have needed maintenance treatment every 6 months., so that £175,000 would have lasted a few years. Personally I don’t understand any of the decisions Helen Sproates made for her daughter after September 2017.
But the main thing is, in the Victoria Derbyshire show she sits on her sofa moaning about the Hallwang clinic and giving the impression that Gemma’s death is their fault. I hope that the timeline above shows that it isn’t.
Finally, she complains about Gemma’s testimonial being still on the Hallwang Clinic’s web site despite the fact that Gemma died in 2018. I contacted the clinic the other weekend and they told me a number of things that I didn’t know when I made the films above:
- They are unable to annotate testimonials with updates on patients due to EU Data Protection laws which prevent them publishing patient data.
- Helen Sproates has never asked them to take the Testimonial down. They have emailed her but received no reply.
- Helen Sproates is still fundraising on Gofundme using her daughter’s story. The front page gives no indication that Gemma has died, you have to go through the updates to find out.
The last update (20) is a fundraiser which mentions the Gemma Rose Foundation which Gemma was setting up when she died. This is apparently a charitable foundation so isn’t listed on the Charity Commision website and I can’t find a list of Charitable Foundations. The fundraiser raised £5000 according to an update on this petition and The Mirror have reported on it too as have Lancashire Live. But other than that I can’t find anything about it online. Presumably this is where the remaining £175,000 from the funding campaign went?
Throughout their press coverage, Helen & Gemma repeatedly thank Kate Winslet for enabling Gemma to go to The Hallwang Clinic, but I struggle to find any mention of any thanks to the Hallwang Clinic for getting Gemma to the point where the NHS declared her NED (no evidence of disease).
Then I remembered that in September 2017 Helen Sproates commented on a blog post of mine! The full comment is shown below and it says some odd things:
Hi Paul ,Helen Sproates, blog post comment, 16/09/2017
what an amzing write up you give yet again – This is amazing news for you and well done for all the time and effort you must put in to “discover ” all the things you do .This is sooo informative to people like myself who are maybe a couple of steps behind you on thIs journey with my daughter Gemma. we to have had some amazing news with a recent PET scan done in June and MRI & CT scans does just last week Gemma is now Cancer free after flying to the Hallwang for treatment every 3 weeks like yourself since Early june this year . I am now t the point of being VERY grateful to the Hallwang for saving Gemma’s life but am also at the stage of “what do I do now ” ? We have some amazing support financially and lots of people have donated on her gofundme Page However I don’t want to continue flying to Germany indefinitely as our costs are around 35,0000 euros per trip
We simply cant just carry on doing this …but stopping is scary -the hallwang of course have said keep on coming !! however I am also aware like you pointed out its a business and obviously they want us to spend ALL our money with them – The doctors were not even there last time we went to discuss what happens next – we just got a “we will see you in 3 weeks time ” . I think I am going to try the Southampton route – Do you have the name of the Man I need to contact Please – This would be amazing for us and our money will go a lot further or be kept safe until we need it again ever ?? Thank you for such an amazing piece if information , you have achieved your wish of helping others , my 28 year old daughter and her 3 year old daughter who needs her mummy around for a lot longer , so thank you
So I did get in touch by email, I’m always happy to help anyone, but particularly fellow patients.
At the time the comment was posted, I was on my annual holiday in Cyprus. I was sitting by the pool of our rented villa, with a glass of wine, basking in my new lease of life and having just secured the promise of further treatment in Southampton. Life was good!
With hindsight, Helen Sproates had started buttering me up with the blog post comment, then continued gaming me with emails. Essentially she wanted the details of who I had arranged my treatment with at Southampton, so she didn’t have to do the legwork that I had.
I said I’d only managed to sort it all out due to my results and the type of cancer (skin) that I had, so I was being seen by a skin cancer and immunology specialist. She told me her daughter had the same cancer as me. So I gave her my contact’s details and asked her not to mention my name as I didn’t want to jeopardise my treatment.
As I say, I was felling good about life and had had a couple of glasses of wine and was watching the sun go down over the sea. I was off guard. So it was only afterwards that it occurred to me what a coincidence it was that someone else had the same very rare cancer as me. So I started googling Helen Sproates.
It wasn’t long before I saw Gemma had ovarian cancer (a tad difficult for me to get!) and Helen had just been prising information out of me with any lie that came to her. I wasn’t very pleased, so I emailed her again and pointed out the discrepancy and asked why she had said what she said.
A stream of abusive emails followed. I eventually said I didn’t understand why she was being as she was, particularly with someone who had just been through what her daughter had, and asked that she stopped communicating with me. (I think I might publish the email exchange in a pdf with email addresses removed to verify what I say).
I felt a bit of a fool, I am not usually so gullible. But thankfully Helen Sproates never crossed my path again until the airing of the Victoria Derbyshire programs on March 6 & 7 2019. There she was, as odious as ever, moaning about everything and casting the blame at The Hallwang Clinic.
Who am I and What is My Relationship with The Hallwang Clinic?
I’m writing this because I was a patient at the Hallwang Clinic from March 2017 to June 2017. They treated my terminal metastatic skin cancer (which I still have) and so far I’ve had 2 extra years of good quality life mainly because of the treatment they gave me.
More to the point, I now know there is treatment that can definitely extend my life considerably with a good quality of life, and I have proof of my recovery in the form of PET CT scan images. Unfortunately the NHS continue to refuse me funding for this treatment so I am having to pay the NHS to keep me alive. Even this is a step forward, its taken me 2 years to get my local hospital to agree to this. Everything I get in the UK is a result of waving my results from the clinic about. I had to go there because nobody (NHS or private) in the UK would treat me in 2016.
I have terminal cancer. I’ve been treated at the clinic, I’ve been treated by the NHS as well, I have met other patients & heard their stories. I have experience of what I’m writing about.
I run a (very) private Facebook group for UK Patients at The Hallwang Clinic (open to patients and their close relatives) which allows us to keep in contact between visits ( they are short and rarely coincide with the same other patients), discuss our treatment and progress and also discuss the clinic in a group that has experience of the place. Nobody gets in the group unless the Hallwang Clinic confirms they are a patient or close relative. We don’t want the noise prospective patients or those unable to go to the clinic make on other groups as it is distracting. We’ve had journalists trying to join, we’ve had Hallwang staff trying to join.
So I have a good feel for the different things that drives UK Patients to the Clinic and what their concerns are whilst they are there and often afterwards as well.
I get on well with the doctors and staff at the clinic, they did save my life after all! I have kept in contact but made it clear I cannot afford to go back there. I run treatment advice past them, not because I think they know better but to get an alternative, non-censored, unbiased view of treatment.
I also get drugs from them that I can’t get in the UK: Celebrex is an anti-inflammatory arthritis drug that has a surprise side effect of attacking the protein survivin which some cancers use to protect themselves from the immune system. My tumours express survivin (I know this because the clinic tested them) so this could help me. Nobody will prescribe it for me in the UK because it is authorised for arthritis not cancer.
I pay for these drugs but I don’t pay for any of the advice and assistance I get from them. They are pleased with my response, they want to continue treating me and if I had the money, I’d be on the next plane.
I have emailed and spoken to the Clinic about these pieces, I have defended them on social media and I’ve told them I’m writing this piece. I have also asked for their permission to use information from my treatment and invoices (which are confidential) and they happily agreed.
I do not think the clinic is perfect in any way, I have my criticisms of it as well, I have already spoken to them about these criticisms.