The Charity Commission, The NHS, The Department of Health and The Way Forward

Following last week’s social media post announcement of the refusal by the Charity Commission to register The Cumbria Hyperbaric and Complementary Therapy Trust as a charitable incorporated organisation (CIO), we release the following statement and comments regarding what we think of this decision and what we plan to do next:

The long and short of it is we plan to change nothing really. We aim to move ahead, ‘onward and upward’ as they say, raise funds in the community and buy a hyperbaric chamber capable of at least getting us going and one which will benefit the wider Cumbrian community. Indeed anyone who wants to come and visit. We simply do not need permission to operate the service we want to, and we certainly DO NOT need anyone’s permission to lower the price of this service to put it within the reach of the poorest within our community.

We had originally wanted to be registered as a charity for two main reasons.

  1. Charitable status affords an organisation credibility in its mission, confidence from donors and a sense of ownership by the community. It also makes it easier to raise funds in a legitimate way which is tightly regulated and overseen by the charity commision. This is what we wanted. A tightly regulated organisation in which it would be impossible for the considerable assets to be misappropriated in any way. As we say elsewhere on this website, hyperbaric chambers don’t come cheap. Our dream is a 20 seater 6 atmosphere chamber that we can run 4 times a day serving 80 people daily with minimal staffing. A chamber of this design rings up at about £500 000. And that’s just for the chamber, it’s compressors and oxygen generator. This amount does not cover the insurance, buildings, salaries for staff and so on. A rather significant chunk of change in anyone’s book. We had envisaged corporate donors making up the bulk of this amount which we we will now struggle significantly to do. Accordingly corporate donors will rather be offered their own bespoke contractual terms which will safeguard any investment they wish to make. This may be in the form of shares in a limited company, or other oversights being built into the funding. We did have the choice of either becoming a regular company, a CIC (Community Interest Company), or a CIO. We chose CIO because it is what we are all about. The proposed trustees are all long serving charitable folk from the Cumbrian community having served the Wigton and surrounding area with countless hours of actual work as well as financial contribution at no charge whatsoever for most of the 10 years they have been here since moving and settling from South Africa. Third sector is in our blood. We do not seek profit or glory. We simply wanted to help our community after meeting so many people who could benefit. The decision by the Charity Commision to refuse registration does not stop us from doing what we want to do, it serves only to limit how much control the Commission themselves have over our activities. It doesn’t make any sense at all.
  2. The second main reason we would have preferred charitable status is the most important of all. Simply put, the charity and its purposes would survive us. No one lives forever. As a limited company it is unlikely that it would continue beyond our life span. As a charity though, it is likely that it would do exactly that with a board of trustees taking it forward beyond our working capability or geographical location. We won’t be here forever and wanted to ensure the continued survival of the organisation beyond this time. This cannot be guaranteed as a regular company. Granted, there may be ways to ensure ongoing service through corporate partners and if someone is interested enough in getting involved. But it’s not as likely as it would have been if we were a charity.

The Charity Commission cite grounds for refusal as:


Reply: Clearly no one from the Charity Commission has taken 5 minutes to do their job and look at the volumes of work already done. Information dissemination and raising awareness is indeed a service, we already exist with charitable intention and in deed. It’s certainly charitable when it is done for free at the cost of the trustees. The simple concept of only raising funds after registration seems to completely escape them also. At £500k it’s not surprising that a chamber won’t yet be in position. If we had the money to do this we wouldn’t need to be a charity, we would simply open a company and decide for ourselves to give charitable rates. We deliberately delayed fundraising so that ANY and ALL funds raised would be raised under scrutiny.

Their considerations follow:



Reply:

If other similar UK charities including the British Hyperbaric Association qualify for registration then why not us? We find this discriminatory and monopolising and suspect undue influence from those in this industry who seek to unreasonably monetize this modality and charge unreasonable amounts for treatment. Our model of either free or very cheap treatments is a threat to their business model and we believe the commision has been poorly informed and influenced in this regard. Private clinics in the UK charge anything from £150 per session to as much as £500 per session. Over the required 20 or 30 session this totals staggering amounts. How is it not charitable to provide the same for as little as £20 or £30 per session? In the event donations were sufficient, we had even planned to offer this therapy entirely free along with other complementary therapies. We believe the commision have acted completely against the public interest and failed in their mandate to encourage the growth of third sector organisations in a responsible manner. They have single handedly ensured that we have no other choice but to proceed as a company, pay full tax and consequently charge more for the service potentially putting it out of the reach of many if we were not inclined to just bear this cost ourselves. The trustees were fully aware of their roles. So much so that we all offered to step down after registration and appoint a third party board of people not “connected”, as the commision describes it. In this way there would have been no risk of conflict of interest at any time in the managing of the charity. We simply would have willingly given up control so we could operate the charity within regulations. Cumbria is one of the counties that doesn’t have this facility and unfortunately following this decision, may now never have. It seems the commission would rather we not operate a charity at all rather than doing a little extra work with us to ensure its success.


And they find that:



Reply:

Read that insert again. “The promotion of health and well being is not a charitable purpose”. Absolutely astounding isn’t it? If we wish to provide a free or almost free well-being and health improvement service compared to the private sector, this is not a charitable purpose? What the hell? They also claim that “Neither is the improvement of the quality of life a charitable purpose”. When this is the official position of the state, we certainly do live in broken times!


The commission further claims that there is insufficient evidence of the efficacy of HBOT to provide benefit in regards the various conditions we have written about. This section of the refusal letter is available to anyone who wishes to read it. It is simply longer than this release allows for as a screenshot. In simple terms however they dismiss the efficacy of HBOT despite having registered numerous other charities in the UK for the same purpose. A contradiction to say the least. It is clear that there has been a recent shift in the attitude of the Commision and this makes us question what influence has caused this. There is much politics in this field. It seems a worm has wiggled into the ear of many state organs in this regard.

Something that should be noted: It is not the jurisdiction nor the mandate of The Charity Commission to determine the efficacy of a medical or complementary therapy. This is well beyond their scope or right to render a decision on. They are not the Health Department, the NHS or the Care Quality Commission. They have made a statement which is particularly politically dangerous to the British community. They have drawn a conclusion on a subject which is under ongoing scrutiny and the subject of ongoing study and discussion. There is no foundation to draw a conclusion. Even the experts cannot draw a final conclusion. It is, in fact, precisely the opposite of that with ever increasing evidence and a shift, albeit a slow shift, toward favouring the use of HBOT for an increasing number of conditions. At one time HBOT was used only for decompression sickness. Now it is used for 14 approved conditions globally, evidence that this is an evolving and dynamic area of study. Do the commission think they are qualified to draw a final conclusion in a scientific discipline? Who is qualified at the commission to make this decision? Who are their scientists that are more qualified than global experts, professors and research experts? One of our missions is to engage the Department of Health, the NHS and Parliament and contribute to shifting the understanding government currently has of HBOT. This doesn’t have to be an antagonistic process. This kind of decision makes it antagonistic and adversarial. That’s not what we want, but it seems to be what the authorities want.

A visit to the links and references page of this website will show any serious reader that there is absolutely no shortage of valid evidence in support of HBOT. These are standardised, controlled, blinded, placebo controlled trials and research projects which follow the global research standard. The very thing the Commision claims the discipline can’t provide. They have been peer reviewed and are accepted as scientifically proven in many other areas of the world. Seemingly not in the UK though. The papers we cite constitute a very small number of a huge amount of research available to both the NHS and the Charity Commision on the subject. They couldn’t have looked very far when coming to a decision. It appears that someone is too lazy to read it or more concerned with being correct than being open to shifting their position in the face of solid evidence. The UK is uniquely stuck about 50 years behind many other countries in regards the use of HBOT. The United States, Russia, Japan, China, South Africa, Australia and South Pacific all recognise the accepted indications for the use of HBOT.

The interesting thing is that the ECHM (European Committee for Hyperbaric Medicine) also accept the UHMS list of approved indications. But not the UK.

The commision and the NHS cite old data, out of date and since reviewed research, and poorly researched conclusions to support their short sighted policies. They really are behind the global curve on this. As much as we respect and revere the NHS, they need to come into the 21st century on this. Unfortunately this means admitting that their position is erroneous and this is something they would rather not do. They also simply cannot afford to have to explain why a valid therapy has never been commissioned. This is probably also due to the aforementioned cost of a chamber. This decision by the Charity Commision serves as an indication of things going forward, and it prevents future charitable organizations from making their own chambers available to the NHS for an affordable amount and leaves them with only the option of paying extortionate amounts of money to the private sectors such as diving and specialist units for the use of their facilities. The NHS doesn’t need to fund their own chambers, there are hundreds of chambers nationally that would be only too happy to provide a cost effective service. The promotion of charitable organizations like ours, which is now refused permission to exist, would provide a network of chambers that the NHS could make good use of reducing the cost load of patient care considerably at a time when funding is a key consideration. Why are the regulatory influencers opposed to this? The answer to that question tells a story.

Notwithstanding the current commissioning policy and NHS position on how beneficial HBOT is, we seek to operate as a complementary therapy. We accept that the position of the health department is not currently in favour of HBOT for more than decompression sickness. We state as much many times in our articles and discussions. This is another matter that does not concern the Charity Commision. This is an ongoing discussion with a huge amount of people contributing to the discussion daily from around the world. Anyone who regularly reads the NHS Commissioning Board’s policy on HBOT will also know that there has been a significant shift in the language used, indicating that there is a growing number of medical professionals within the NHS pushing for a modernised approach and policy on HBOT. This shift in language indicates growing internal pressure to make this available for more people and for a wider range of illnesses than only decompression sickness and arterial gas embolism. I see a future in which the NHS and charitable, and private sector chambers, work together to make available this modality nationwide. Who knows where the Cumbria Hyperbaric and Complementary Therapy Trust may have gone. Maybe national with hundreds of centers available to the NHS? The poor decision making of the Charity Commision directly compromises this potential.

Time will eventually change this position though, and we are a patient bunch. We can wait. In fact, parliament even agrees that type 3 HBOT should be allowed and promoted in the community under the 2008 deregulation from medical regulatory frameworks of type 3 hyperbaric oxygen services. A deregulation which was actually proposed by the Department of Health. We have a copy of that proposal document and amendment too if anyone would like a copy. It states that the motivation for deregulation is to allow small operators to operate more easily without the burden of compliances which don’t apply to complementary therapy. It seems the Charity Commision hasn’t looked further than the end of a Friday to properly research the matter. What’s more, they didn’t even bother to ask us for further supporting motivation or evidence of which we have volumes. “No correspondence was entered into”. Draw your own conclusions on that score.


If we are to be curtailed and regulated, then I lay down this challenge to the authorities. Bring us back into the medical regulatory framework, and in doing so you will unavoidably admit publicly that HBOT has medical benefit for more than it is currently commissioned for by the DOH and the NHS. To regulate this therapy under medical regulations is to admit it is a medical modality with medical benefit. The questions that follow for the NHS Commissioning Board will certainly be interesting and telling in a public forum. The NHS will finish up with no other option BUT to commission HBOT for wider use.


Otherwise… leave us alone to operate as a complementary therapy, charitably so, if we choose that path in life! It really is that simple. Private sector can do their thing, all we ask is that we be left alone to do ours without undue interference from the physician cartel.

Note:

The is also no direct SCIENTIFIC evidence that acupuncture, dance therapy, music therapy, equine therapy, meditation, reflexology and so on and so on are beneficial. Yet we believe in these, and they exist without hindrance in the UK. Ask yourself why is it then that HBOT is the one therapy that draws more attention. A therapy which is tantamount to self administration which is no different from buying your own aspirin. Because it works, and it’s worth a lot of money to those who are only too happy to charge an arm and a leg for it. For us diabetics, that’s exactly what it costs us in reality. Again this begs the question, how does this decision benefit the public?

Sadly this is one type of myopia that won’t go away in 4 to 6 weeks following treatment. This is a far more serious type of short sightedness that will take the ongoing lobbying of select committees and parliament to effect change. Something we look forward to doing, in excess.

With that we conclude. We aim to ‘keep on keeping on’ regardless of this decision. We do not wish to appeal or take it to tribunal. We simply don’t have the resources to avail ourselves of this. The choice has been made for us. We will proceed as a company like anyone else. We have already made the necessary changes to the website and social profiles. We hope we can rely on your continued support.

We could have chosen the profiteering route, and we could get rich to be honest. People pay a lot of money for this. We choose not to though. We choose to remain charitable in nature if not in title and registration status.

Fundraising is open at GoFundMe. Help us to help the community.

‘Onward and upward’ as they say, and thank you one and all for listening.

Hayden.

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