Categories
Thoughts

Digging Deeper into The Transplant Trust


This article is a follow-up to a previous entry entitled ‘The Transplant Trust (formerly Transplants in Mind) – What Happened?’. I would recommend reading the previous article before reading this one.


After writing my previous entry on the fate of The Transplant Trust, I received several interesting comments and consequently undertook some additional research the charity’s fate, trying hard to pin down precisely what happened between the 2008/2009 and 2009/2010 financial years (running April-March of those respective years), that resulted in the calamitous fall of a charity that had hitherto been running for almost 20 years.

An addendum to my previous article noted a report by Third Sector on court action that was levied against The Transplant Trust in order to recover an unpaid £3650 PR bill for National Transplant Week (NTW) in 2009.

My previous assumption, based on this entry at the Charities Commission website, is that the charity had ceased operation by March of 2009, but the aforementioned Third Sector report refers to the NTW held in July of 2009. Clearly the charity was still running at this point, and its purported closure date appears to have been specified simply to coincide with the end of the 08/09 financial year. More digging was clearly needed, and after an extremely helpful and informative call to the Charities Commission, I can relate the following:

Two charitable entities under the name ‘The Transplant Trust’ exist. These are distinct, seperate organisations that have been founded with individual mandates and governance. Specifically:

1001374 – The Transplant Trust, was registered as a Charitable Trust in 1990, and it is this organisation which ceased operation in March 2009. Their activities are listed as:

Supporting research into clinical aspects of transplantation. Tissue engineering of chondrocytes and bone marrow stem cells were two main areas supported during this financial year.

1095611 – The Transplant Trust, was registered as a Membership Organisation (run under a constitution) in 2003, and according to the Charities Commission is still registered. Their activities are listed as:

THE RELIEF OF SICKNESS AND DISTRESS BY THE IMPROVEMENT OF THE SUPPLY OF HUMAN ORGANS FOR TRANSPLANTATION THROUGH THE PROMOTION OF HUMAN ORGAN AND TISSUE DONATION AND THE ADVANCEMENT OF PUBLIC EDUCATION, IN PARTICULAR THROUGH THE PROVISION OF RESEARCH AND THE PUBLICATION OF THAT RESEARCH. RAISING AWARENESS BY RUNNING NATIONAL TRANSPLANT WEEK, THE DONOR BUS AND DONOR DAYS.

It is clear that these two entities were both the same overall organisation, with the former apparently having a more clinical research focus. The one set of public accounts still available for this charity for the 05/06 financial year which notes a turnover that just surpasses £26,000. The accounts for a charity are only published publicly in the event their gross turnover exceeds £25,000, and so it would seem this was the only year on record where this criteria was met. Any other accounts held below this threshold, while not public, should still be obtainable via a Freedom of Information request to the Charities Commission, and so I provide the results here for information:

The Transplant Trust (1001374) Annual Report & Accounts for 2003-2004

The Transplant Trust (1001374) Annual Report & Accounts for 2004-2005

The Transplant Trust (1001374) Annual Report & Accounts for 2005-2006

The Transplant Trust (1001374) Accounts for 2006-2007

The Transplant Trust (1001374) Accounts to March 2008

The Transplant Trust (1001374) November 2008

Arguably the most revealing result from this request was a letter to the Charities Commission in February 2009 that declares the cessation of The Transplant Trust (1001374) and to transfer its assets to ‘Transplants in Mind[sic] 1095611’.

Looking at these accounts we can see the steady decrease of turnover and activity supporting the ‘clinical aspects of transplantation’, as specified in its founding mandate, since the formal creation of the second Transplant Trust member organisation in 2003. It’s interesting that it is this which has officially ceased, and not the second, more public face of the charity with which all of its supporters will be familiar. To clarify, I refer to the part which had the website, the donor bus, and which ran and received government funding for National Transplant Week. One charity had a turnover that didn’t exceed £25k, and the second (the Membership Organisation), had a turnover of more than £150k.

As far as the Charities Commission is concerned, this organisation still technically exists, albeit with Accounts and Annual Returns that are heavily over due for the 2008-2009 financial year, although I have recently noticed that an Annual Return (but not accounts) has been returned for the 2009-2010 year as of 26th January 2011. I enclose a screenshot of the Charity Commission entry for The Transplant Trust (1095611) as I see it today:

Here we see a huge leap in income to £285k (up from £107k in 2008), albeit with £296k of spending putting the charity further into deficit. As these figures are somewhat incongruent to the known activity of the charity since 2009, I can only speculate that this figure is a combination of the financial years 08/09 and 09/10. Although why it would be presented in this way is not evident.

The question of ‘What Happened?’ is still as mystifying as it was, however I am penning this update primarily because several weeks ago I sent another Freedom of Information request to the Department of Health, who, to remind you, provided significant amounts of public funding to support The Transplant Trust’s activities, including National Transplant Week.

My request, and the responses to which, were as follows:

Request 1: The amount and type of funding provided to the charity since its creation (c. 1991), summarised by year up to and including the charity’s last year of operation. 

Response 1: Organisation name – Transplants in Mind – for a  project called National Transplant week.

Financial year:

2004/05: £20,000.

2005/06: £10,000.

Reference Document 2003/552

For a second project called – Donor Day – they received 3-years grant as follows:

2005/06: £25,000.

2006/07: £30,000.

2007/08: £35,000.

In 2008/09 we funded £84,000 to Transplant Trust to promote National Transplant Week 2009 and identify the most appropriate and effective medium to reach the under 25s demographic and implement an initiative to target this group to increase the number of people on the Organ Donation Register.  In 2009/2010 we funded £7,500 to publish a Transplant book written about the experiences of those waiting for a transplant.

Request 2: All documentation, including memos, emails, and other communications as appropriate that discuss or otherwise investigate the closure of the charity in 2009.

Response 2: DH had no dealings with the charity re their closure, but please see correspondence annexed below where, on hearing that Transplant Trust was facing financial difficulty, we wrote to John Wallwork asking for confirmation that DH funding was not going to be used for redundancy payments. I also attach the charity’s funding report that they sent to DH giving a breakdown of their proposals, and two award letters to Time for the Funding of National Transplant Week from 2000/2001.

Note that we have redacted the names and direct contact details of officials who are not Senior Civil Servants or otherwise persons in the public domain, in accordance with s40(2) of the FOIA, which relates to the personal data of living individuals whose release would be in breach of the Data Protection Principles as set out under the Data Protection Act.

Request 3: Information on the intended future distribution of the funds that would have otherwise been granted to the charity had it continued in operation. i.e. Has or will this been re-apportioned to a similar charity/project in future.

Response 3: We hold no recorded information which would address your question about ‘the intended future distribution of the funds that would have otherwise been granted to the charity had it continued in operation. i.e. Has or will this been re-apportioned to a similar charity/project in future.’

The department within the Department of Health that deals with Freedom of Information requests is deserving of serious criticism. My request was handled so incredibly badly that as of today I still have not received the specific items of documentation that relate to my original request. In their first response they referenced documents but did not provide them, even when they explicitly state that they had been included. I have asked for the charity’s funding report which they noted in ‘Response 2’ more than once, but my requests are seemly dealt with people of surpassing incompetence and illiteracy. My original request to their department was made on the 3rd December 2010, and they have far exceeded the 20 working days allocated by law to respond to such requests.

When I pointed out that the documents they referenced had not been included, they insisted on treating this as a new Freedom of Information request, thereby giving them another 20 working days to correct their error. That would be bad enough had their eventual response not once again omitted the information requested. Eventually I was sent this PDF document, which is a mish-mash of referenced material with no good explanation of what is included. The DoH then insisted this was the entirety of the information they held, despite that clearly not being the case. I have again appealed to them for records pertaining to the funding given over the course of the time period requested, and again I’ve been given yet another FOI reference number. It seems to me that this constant generation of new reference numbers is simply a way of fudging their response statistics. They can respond to a singular FOI request poorly, close it, and if anyone has any follow-up queries about the paucity of information provided, they merely open up a new reference and respond to that within their 20 days. By opening and closing multiple references for what is ultimately ONE request, I imagine it would be very easy to make it look like the department was responding to 100% of all requests on time.

So I apologise if the information above is not as detailed as it might be, and I will update this article should the DoH manage to grind together enough braincells to comprehend which documents they still need to send me.

In any case, some scraps of this information were useful. I was particularly interested in the nature of the £7500 provided for the publication of a ‘Transplant book’. I can only assume it refers to this website and while there is a scant mention of The Transplant Trust, there is nothing that mentions them as a source of funding for its publication. I will enquire directly to the author and update this article with any information.

A Stumbling Summary

The situation remains rather unclear. The aspect of the charity dealing with research was wound up in early 2009 with any remaining assests transferred to the second charity at that time. The second charity has been missing in action since mid-2009. It has no website, it no longer accepts donations, its Just Giving membership has expired, and yet still technically appears to exist. The recent Annual Return that now appears on the CC website merely adds to the intrigue.

The donor bus, noted in my previous article, is allegedly still run by Ray Pearson, the ex-Donor Bus Manager of the Transplant Trust, under the name ‘Brightside of Life charity’. This is not a charity that is registered with the Charities Commission (which it would be obligated to do if it had a turnover of greater than £5000), and it has no significant online presence that makes mention of the bus’ activities. As far as I can work out the donor bus is also not part of any other larger charity connected to transplantation. If the closure letter referenced above is to be believed, the bus along with any other assets should still technically remain the property of the remaining Transplant Trust charity.

Many questions still need to be answered. What is actually going on? Will the charity attempt to rise from the ashes and overcome its continued financial woe? Will their website be restored to operation? Will there be a public statement as to the fate of the charity? And most critically, who is organising National Transplant Week in 2011?

I will continue to post any information that becomes available, and comments remain welcome.

Categories
Thoughts

The Transplant Trust (formerly Transplants in Mind) – What Happened?

If you have come to this page wondering what happened to The Transplant Trust (formerly Transplants in Mind) but don’t wish to read the whole article, I’ll cut to the chase: They don’t exist any more.

Transplant Trust Logo

If you’d like to know why, read on. I’ll start by mentioning that I am a former supporter of this charity and, for reasons I’ll come to shortly, I withdrew my support in late 2007. Out of curiosity I recently decided to see what they’d been up to lately, and the answer was: Nothing. Not just nothing, but their website had disappeared, and I could find no meaningful reference to them online or any indication as to what had happened. For a charity that had existed since 1990, to suddenly disappear without trace or explanation is unusual, but knowing this charity as I do, I am not surprised in the least. So what went wrong?

I became involved in Organ Donation awareness in 2007, though not for any particular reason. I have no personal connection to transplantation and hitherto had never known anyone needing a transplant. I did however think it was a worthy cause and found Transplants in Mind (as they were then called) to be the single national charity concerned with raising awareness. To that end I raised around £1000 for them by running in a 10k and a couple of other personal fundraising drives. Having made myself known as a supporter, I was then invited to an awareness-raising event (Donor Day North) in Manchester in late March 2007. I was proud and pleased to have been invited, donned my suit and went along keen to see the charity at work.

Disappointing Event

To say I was disappointed is an understatement. Donor Day North is supposed to be a major, prestigious awareness-raising event, and the main venue for the day was the Manchester Science and Industry museum. As far as locations in Manchester go, this could hardly have been more secluded from the busy footfalls of the city centre. My impression is that they’d merely pulled up their Donor Bus outside (and I’ll get to the bus more shortly) , and had stood around all day hoping to capture the relatively few visitors to the museum. The evening event promised a presentation of the charity’s work and a speech from a representative of the Donor Family Network. Wearing my suit with my girlfriend at my side, I could hardly have felt more overdressed and out of place. The staff and supporters from Transplants in Mind (and for ease, I’ll merely refer to the charity as ‘TTT’ from here on) were all dressed in casual t-shirts, but the most appalling aspect was the sheer lack of attendance to the event. Aside from myself, a handful of disinterested students, and the TTT team, there was nobody there. Aside from myself nobody appeared to have been pre-invited and those that weren’t appeared to have been visiting the museum on the day and convinced to come back for the presentation.

Meanwhile the representative from the Donor Family Network proceeded to tell us a truly warming and genuine story about his decision to donate his daughter’s organs shortly after her death, helping no fewer than 7 people needing transplants in the process. It was a very moving speech and would certainly have convinced anyone undecided on the issue to have signed up to the organ donor register on the spot. I felt it a complete waste that the gentleman had made the trip up north to convince a pitiful few that hadn’t really needed convincing.

The worst, most damning part was saved to the last. After the presentation the catering appeared. Not just catering, but expensive-looking individually prepared bowls of food, dessert, and plenty of wine. For the numbers that had turned up and the tone of the venue, there was far too much food presented in an incongruously expensive manner. My worry over the cost of such a spread was worsened when I witnessed the TTT staff tucking into the food, and more importantly the wine, with gusto. By the end they had all downed several glasses each and for all appearances were having a jolly old time.

I was utterly appalled. I saw the event to be a wash-out, entirely ineffective, and a shocking waste of the charity’s money spent on food and alcohol that benefited  TTT staff and close supporters more than it engaged public awareness. Before I left, I was given a tour of the much-touted Donor Bus.

The Donor Bus

The Donor Bus was a 40-year old Routemaster that once cris-crossed the streets of London and served as the centre-piece of TTT’s awareness campaigns. For reasons that remain a mystery to me, the existence and presence of this bus was consistently seen as a fascinating and novel conversation piece purported to assure the success of any event. Such was the inexplicable hype about the bus that TTT later went on to employ a full time ‘Donor Bus Manager’, to better utilise the valuable resource that this old broken-down heap was seen to be. The bus itself was nothing – dull, old interior, with nothing gracing it but a few leaflets and not particularly utilised on awareness days except as a large thing to look at and drape a banner from. It was also famed for being an expensive maintenance nightmare, suffering regular breakdowns.

It was at this point I decided to support the charity no more. The money I had raised was being wasted on feeble lip-service attempts at raising awareness but seemingly doing more to keep TTT staff in free food and wine. It was the last they heard of me, although I continued to pay attention to the charity for a little while afterwards.

The appointment of the Donor Bus Manager, as previously mentioned, is a particularly sore point worthy of further scrutiny. This was advertised as a full-time post to basically manage the bus and ensure it was dragged to various events around the country. Why the charity felt they needed someone to manage a single resource on a full-time basis is beyond me, particularly when at that time the charity had only one full-time member of staff, the Communications Officer, and a part-time Chief Officer. It was of grave concern when it transpired that the job was then given to a man who was introduced to me at the Donor Day North event as the long-term partner of the Communications Officer. A cynical person might speculate there to be an extreme conflict of interest in such an appointment, but I’ll let you make up your own mind about that.

Worrying Trends

At this point I was actively supporting another Organ-donation group, and in July 2007 we had planned an event in Birmingham to coincide with National Transplant Week. We were aware at that time that TTT were also in Birmingham the day before, and that the Donor Bus was in attendance. Because, if nothing else, the bus was a good place to hang a banner, we contacted the Donor Bus Manager to see if the bus, which wasn’t due to be used that day, could be brought to our event to help with awareness-raising. Incredibly, we were told that no, it wasn’t possible, because there wasn’t a driver available for the bus. Now, as the bus manager I’m going to go out on a limb and presume that he was capable of driving the bus, and given we knew they were holding no events on that day yet were still in Birmingham, I assumed at the time the rejection was more down to resentment at our ‘competing’ event, coupled with general apathy towards anything requiring effort. Of course, there could also have been a legitimate reason for the bus’ unavailability, but we’ll never know. It was certainly a missed opportunity to capitalise on what should have been our shared-interest – raising awareness.

There are other foibles to mention: the TTT poster advertising National Transplant Week – the one with the TTT telephone number on it. Given that UK Transplant handle the actual registration of donors to the register, putting TTT’s phone number on an advertising poster would just mean that when the phone was picked up – never a guarantee with a single member of staff – they’d be instantly told to call another number. Precisely the kind of needless obstruction that would make a wary person not bother to make that call.

For the 2008 running event – the one I did not attend, I noticed that the charity’s runners were wearing charity-branded t-shirts (something most credible charities do), except theirs were unusual on account of the fact a large company logo was emblazoned across the front. On investigating further I saw that the company advertised was one belonging to one of the charity’s trustees. Presumably provided by that company in return for the advertising – again, surely, a conflict of interest? What charity seeking credibility allows their runners to wear an advert for another company as the primary message?

I had originally suggested to them that they sign up to Just Giving, and also Missionfish (the company that allows eBay to receive charity donations), because they had done neither of these ball-breakingly basic things that any charity worth their salt would already be on to. The rest of what I know is just a catalogue of disappointment and failings of a charity that really did not seem to be honouring its mandate. At one point I did consider writing a letter to the Charity Commission pointing out the more worrying aspects of the behavior I’d witnessed, but in the end I did not, unconvinced that what I knew could simply be put down to either incompetence or ignorance, rather than criminal misconduct.

Writing on the wall

My knowledge beyond this point gets a little sketchy, as I stopped payment much attention. The name was changed from Transplants in Mind to The Transplant Trust at some point in 2008/2009. I think this change was an attempt to clarify and insinuate themselves to be the primary UK transplant charity, having come under increasing pressure from other awareness-raising groups that were doing a much better job without a tenth of the support, and frankly embarrassing them in the process.

I am vaguely aware that a Fundraising Manager was latterly employed in an attempt to boost their finances, but this doesn’t seem to have worked, and it appears that money was the ultimate cause of the charity’s downfall.

Time for some numbers, c/o the Charity Commission website. The accounts for TTT for the following years:

Financial year end (FYE)IncomeSpending
31 Mar 2009N/AN/A
31 Mar 2008£107,995£149,441
31 Mar 2007£186,477£161,103
31 Mar 2006£149,548£100,718
31 Mar 2005£62,963£42,321

We can see an ever so slight £41,500 deficit for the financial year ended 2008. Accounts for 2009 have not been received and are overdue. The record for the charity states that it ceased to exist on 3rd March 2009. Given it is now August 2010 I don’t think we can expect any final year accounts any time soon.

The accounts remain freely available on the Charity Commission website here. While I haven’t the patience to delve very deep to compare figures, we can easily see that income for the year ending March 2008 is significantly down on the previous year, while relative costs are up, creating a large black hole. The only piece of analysis I’ll hand you is that the Donor Bus expenses (including salaries) cost £18,559 for 2007, and £50,383 for 2008.  Total cost of salaries were up to £71, 608 in 2008 from £49, 416 in 2007.

The question of these increases is further compounded by the drop in income – evidently a financial reality that resulted in the immediate cessation of all activity. And it has been immediate – the website just dissapeared. No warning, no notices, no statement explaining the situation but wishing well to the supporters of the charity over the last 19 years – nothing. The only presence The Transplant Trust now has online is an outdated Facebook page, where erstwhile supporters of Organ Donation still go occasionally to identify themselves to the cause, completely unaware they’re talking to the spectre of a dead horse. One person even asks when the TTT website will be back online – and that’s ultimately the reason I wrote this article. The complete and undignified collapse of The Transplant Trust has left a confusing void and while I have speculated at length, this is just an indication of what has probably happened, rather than a definitive statement of what has.

What now?

TTT’s loudest trumpet was their ‘organisation’ of National Transplant Week, which is usually the first week of July every year. Thankfully other supporting groups are more than capable of taking this nationally-appointed week and using it for their own awareness-raising drives, and I would argue the greater majority of donor signups were always a result of activities entirely peripheral to The Transplant Trust. The work will go on.

A quick call to UK Transplant to formally enquire as to the fate of The Transplant Trust didn’t get me too far. The belief of the chap on the other end of the phone is that ‘their activities have been absorbed into the Transplant Support Network‘ as of ‘a few months ago’. I am not sure what this entails.

The Transplant Support Network (TSN), is also a registered UK charity albeit smaller in terms of turnover, taking in some £46,000 in income for the 2009 year. Cheerfully their finances look a good deal more viable than TTTs were, implying that they’re small but steady. They don’t appear to have a website. I found a link for transplantsupportnetwork.org.uk but as of today it is non-functional. The domain name expired at the end of June 2010 and has not been renewed. The phone number I was given appears to be for a residential address and was not picked up when I called. I don’t imagine charities of this scale have dedicated offices (and indeed, it’s probably best that when being this small, they do not), so I have left a message explaining my enquiry and will update this article if I hear anything back.

I do not know if the absorption of TTT’s activities is a correct statement, or the extent to which this might be true, but I hope for their sake that they’ve driven that damn bus off a cliff.

I am happy to make corrections or post updates to this article if you have any additional information.

Update – 1st December 2010

I have just stumbled across an article from Third Sector dated February 2010 that states the Transplant Trust were taken to court by the PR company they’d engaged to help promote National Transplant Week (held July 2009). This damning article rather speaks for itself, and the charity did eventually pay the outstanding £3650.00 after a court warrant. It also notes that the charity received £84,000 of public money to ‘in part to help fund the National Transplant Week campaign’, but that despite this  ‘The Department [of Heath] was satisfied that it had been appropriately spent’.

I don’t know about you but given the Charity Commission insists that the charity ceased operation in March of 2009, I think that serious questions must be answered as to what happened to the money, and not for the first time I’d like to see those overdue accounts for 2009.