Archive for the ‘Medical & Health’ Category

Why Sack the Sacklers

A  frenzy is taking place around the Sackler Trust and the belief that the trust’s funds arise from the abusive sale of the habit forming drug OxyContin. This drug has been sold for years by the Sackler family’s company Purdue Pharma. There are several high profile legal cases in America blaming the company for high levels of addiction. Should this affect the charity?

Previous Sackler Donations (examples)

  • The V&A the Sackler Courtyard,
  • The National Theater the Sackler Pavilion
  • The Royal Academy of Arts  the Sackler Galleries
  • The National Gallery the Sackler Room
  • Oxford University the Sackler Library
  • Sadler’s Wells’ Sackler meeting room
  • The Globe Sackler education studios
  • Alexandra Palace a new creative learning zone

Now the National Portrait Gallery, The Prince’s Trust and the Tate have decided not to accept or seek donations from the trust.

Concerns

  • Is this just virtue signalling that has little consequence for the addiction problems. Is this a media storm in a tea cup stirred by ‘squeamish’ trustees.
  • It is interesting that so much of the support has been given to  ‘state art’ organisations. Who will fill the funding void.
  • The OxyContin drug  continues to have significant medical benefits when  correctly prescribed and administered.
  • The trustees of the Sackler Trust UK Charity no. 1132097 say they ‘have taken the difficult decision to temporarily pause all new philanthropic giving, while still honouring existing commitments.’

Dealers in Drugs – Opioids for the Masses

Not all drug dealers have the negative connotations  one associates with street drug suppliers; consider the pharmaceutical based  Welcome Foundation or the Sackler family.

1128926 The Dr Mortimer And Theresa Sackler Foundation’s aims are  ‘the advancement of research and education in England and Wales and
elsewhere in the fields of art, science and medical research.’ The Sacklers funded the Medical Research Center at the University of Cambridge, our School of Clinical Medicine and the Faculty of Medicine at Tel-Aviv university as well as numerous other research programs and fellowships.

The wealth of the $multi-billion families of Raymond and Mortimer Sackler arises from Purdue Pharma a privately owned and operated global company which sells the opiate drug Oxycontin and Oxycodone.

Issues For Purdue Pharma

  • Major health concerns continue to surface about the use and abuse of synthetic opioid drugs. Increased mortality, reduction in life expectancy and more suicide & liver disease are cited.
  • Federal judges in Ohio are allowing public health organisations to sue opioid manufacturers and distributors.
  • In Connecticut the attorney general alleges that ‘the Purdue Pharma’s board and executives made huge financial gains by misleading doctors and patients about how addictive their prescription opioid medications were’.
  • ‘Massachusetts Attorney General Maura Healey said the family that owns the drug company Purdue Pharma is personally responsible for the company’s role in the opioid crisis’   purdue-‘pharma-family-oxycontin-abuse
  • Back in 2007 fraudulent promotion of OxyCotin resulted in a $600million fine for Purdue plus personal fines for the executives responsible. Perhaps this will now be an outbreak of litigation addiction.

Concerns Beyond Charity

  • Other drugs in widespread use in the UK including fentanyl, tramadol and methadone are prone to causing addiction and other health problems.
  • The United States is in the midst of a drug crisis, with dramatic increases in the rate of opioid overdose deaths. Australia’s drug research center says ‘Powerful opioid fentanyl poses serious risk of fatal overdose’. Wake up UK it is also happening here!
  • Can charity and business mix?
  • Who has the ability to police and prevent corporate and personal abuse of such powerful narcotics. Charities are left to pick up the pieces.

Bhopal a Basket Case

Bhopal a Man Made Disaster

What role should charity play as a result of a man made disaster? Strategically the polluter should pay then locally provided emergency help and ongoing victim support would be the norm. In some significant instance there are more needs for longer periods than first realised. Pushing the boundaries of science or more likely exploiting them for commercial gain created significant  issues at the Union Carbide pesticide factory in the Indian city of Bhopal. The ongoing failure to face all the corporate responsibilities leaves much for charities to do.

Bhopal Gas Tragedy

  • Bhopal chemical explosion at Union Carbide pesticide factory  happened as long ago as 1984. Bhopal Medical Appeal is a UK registered charity 1117526 that annually raises public  donations of over half a million pounds. There are negligible reserves to fall back on.
  • Most of the UK raised funds are spent in Bhopal on special clinics  run by the Sambhavna Trust and the Chingari Trust.
  • BMA spend 20% of their cash and resources campaigning for justice for survivors of the Bhopal gas disaster and question the lack of US political support.
  • The ground around the factory is heavily contaminated and poisonous drinking water has been the causing birth defects,  impacting on future births and creating medical problems not acknowledged by the company.
  • Dow Jones who took over Union Carbide has been accused in India of manslaughter but despite legal notices fought tooth and nail to avoid responsibility.

Issues And Concerns

A recent full page advert in the Daily Telegraph brought the issues back in to my conscious.  Keeping disasters in the public mind should keep health & safety on the agenda and help inform for future disasters.

The role of charities may be crucial but they are only bit players amongst lawyers, politicians, shareholders and corporate managers.

Update 4.8.19

Dow subsidiary, the Union carbide Corporation, remains wanted in India on the criminal charge of ‘culpable homicide not amounting to murder’, for its part in the Bhopal Disaster, but Union Carbide has never bothered to answer the charge, nor attend court, and is a ‘proclaimed absconder’ in the eyes of the Indian judicial system.

Securities and Exchange Commission filings for the new Dow reveal that it expects to assume Union carbide’s liabilities……….. This is the first occasion on which notice will have been served since the merger with DuPont and the subsequent split into three ‘new’ companies and, as such, marks an extremely important legal milestone. Dow is required to attend court in Bhopal on November 13 2019.  from Bhopal Medical Appeal

Concerted Fund Harvesting by Just4Children

Just4Children registered as 1164473 – JUST HELPING CHILDREN is fund raising for children to receive medical treatment, therapies, living environments, equipment and holidays that would not otherwise be available to them.

From what seems to be a standing start they have been a funding success, raising £948,000 in the first twelve months of operation to September 2016. It will be fascinating to see the 2017 accounts  probably not available until June next year.

The Basic Financial Model

The prime aim is for the ‘relief of sickness and preservation of health of children’ and this is achieved by managing the fund raising efforts of family, friends and the public primarily using individual children cases.

Individual fund raising pages are set up under the charities brand powered by Just Giving. The resulting income and other ‘designated funds’  collected through targeted fundraising campaigns are held by the charity pending expenditure.

General funds are raised from donations via methods and platforms other than Just Giving. Fund raising activities include collecting in public houses, a ‘weather lottery’ and many beneficiaries efforts.

The first year’s accounts reported over 70 case studies of individual children with ‘identified needs and desires’ that included; intensive Oxygen Therapy in Slovakia, £35,000 for physiotherapy and care in Canada  from a pioneering rehabilitation centre, American treatment, at a cost of  £300,000 for a boy with intractable epilepsy, £15,000 to fund post ‘Selective Dorsal Rhizotomy’ operation therapy and other examples.

 Concerns

  • Funds are ‘Unrestricted Designated funds’ or unrestricted general funds. There are currently no restricted funds. The legal distinctions may not be obvious to contributors or beneficiaries.
  • Conflicts may arise if the required sum is not reached or the need for treatment changes.
  • When using the many other recommended methods of raising funds for a specific case the software did not seem to guarantee the funds would be accurately designated.
  • The charity is breaking new ground in a difficult and emotion driven area. Progressively more time will be needed to monitor bad faith cases, unacceptable treatments, exploiters and manipulators. Is the organisation a gatekeeper and financier rather than a provider of medical assistance and support.
  • Even large charities like Action for Children with 150 times more annual income than Just4 children  and 140+ years behind them can disappear. Scope could not come to charitable terms with new Cerebral Palsy procedures. It is not a comfortable life being a trustee.

What is in a Name

Looking at one aspect of one charity, (in this case fund raising in a public house and Just4Children) many varied issues may surface. In a confusion of names Just4Children is a registered charity called Just Helping Children 1164473.  In a further confusion their  marketing and fund raising should not be confused with Just4Kids 1151263 aka Chloe’s and Sophie’s Special Ears Fund.  Action for Children helped children and young people for 148 years until Septemebr 2016 when it was put into administration along with brand names 4Children, 4Children (Trading) Limited, 4Children (Direct) Limited, 4Children (Gloucestershire) Limited, 4Children (Plymouth) Limited, 4Children (Worcestershire) Limited (collectively “the Charity”) all in administration.

Scope, Cerebral Palsy and Charity

There are 29 registered Cerebral Palsy (CP) charities in England & Wales based on a search of the Charity Commission website. This excludes Scope, Contact Brainwave and other organisations formerly well recognised in this field. There are also 32 registrations under the term ‘spastics’, a throw back to when Scope did what it said on the tin.

Scope Today

It is 10 years since the short-lived chief executive Anthony  Manwaring laid out plans to close the charity’s 50 residential homes to the dismay of many parents. He claimed the charity was providing services that should be funded by Government. 22 remain but the number and CP speciality is dwindling.

After continuing the closure  programme, Scope is maneuvering into new areas calling itself a pan-disability charity. The revised focus moves them from being a charity that provides care to a campaigning organisation.

Active, almost aggressive fund raising during 2017 has seen a lot of paid/commissioned volunteers and door to door ‘champions’ trying to sign up donors.

Concerns

Loss of prime focus to become  ‘Jack of all trades master of none’ can irreparably damage a charities image and supporter goodwill.

The government appears to be funding the service provision as intended by Scope. HMG provides Scope with around half their £100m p.a. income via payment for treatments and other grants.

If we ever get a Royal Commission on the National Health Service the role of ‘charity service providers’ and campaigning groups should be included in the brief.

Double Costs for the NHS?

The public sector plays a significant role in the discovery and funding of  new medicines. This applies to diseases that predominantly affect poor countries but also includes Prostate cancer, Arthritis and Multiple Sclerosis drugs. Some of these drugs are then sold by the pharma industry to the NHS at excessively high cost.
Other  medicines developed for exploitation by pharmaceutical companies are often built on work funded or instigated by charities and the tax payer. According to new research published by Global Justice Now Trust 1064066 and the charity Stopaids 1113204.- ‘The commercialisation of these discoveries by pharmaceutical companies has generated huge private profits from public funds.
  • Pharmaceutical companies claim that these high prices are needed to provide a commercial incentive for them to undertake further R&D for new medicines. But when the public purse is funding a large proportion of this R&D, the justification for monopoly pricing is hard to sustain.
  • Pharmaceutical companies consistently spend more on sales and marketing than on R&D for new medicines.
  • Many companies also spend disproportionately more on shareholder dividends.’

Examples from the Report

  • Abiraterone (Prostrate cancer)Discovered and developed by the primarily publicly funded Institute of Cancer Research and later bought by a subsidiary of Johnson & Johnson. The advanced prostate cancer treatment was deemed too expensive for the NHS for years. The NHS now spends £98 per day per patient on the drug, despite a generic alternative being available for less than £11 per day per patient.
  • Infliximab (Arthritis): Initially developed by Universities in the US and UK, with support from charity and industry funding, before being bought by Centocor Biotech. In 2014/15 it represented the fourth highest expenditure on a single medicine in the NHS, at £159 million. The following year the NHS spend on Infliximab rose to £178 million.
  • Alemtuzumab (MS): Developed at Cambridge University and purchased by Sanofi Genzyme, it was approved to treat B-cell Chronic Lymphocytic Leukaemia (B-CLL). Cambridge scientists discovered it could also be used to treat MS and it was utilised for this non-licenced purpose at a cost of around £2,500 per treatment course in 2012. Sanofi Genzyme withdrew the drug from the market and re-launched later as an MS medicine at a far higher price per dose. It now costs £56,000 per treatment course, a 22-fold price increase.

Full Report  pills-and-profits-report-web.pdf

Concerns

Many questions are raised by this report including : How can the public good be balanced against private gain? Is the current balance equitable, measurable and controllable? Can the NHS  benefit from a better and potentially fairer structure?

The report calls for Effective governance and accountability, the Attachment of public interest conditions to R&D funding and more Transparency including on the ‘net price’ for NHS drugs. A revolution may not be needed but some improvement is surely called for.

Read On…

Sex Worker Supporters

Basis Yorkshire Ltd 1120350 – is one of those invaluable ‘hands on’, smaller charities that work with sectors of society that do not attract a great deal of charitable support.

‘The charity’s principal activity is the protection and preservation of good health of women and young people who are, or who are at risk of becoming involved in prostitution in the city of  Leeds or it’s immediate neighbourhood. ….. by the provision of an advice and counselling service, pastoral and practical care, and the advancement of education for the public benefit.’  One way this is achieved is by  offering free sexual heath supplies including a range of condoms, lubricant, dams, gloves, and sponges. Another is support on health and sexual exploitation.

Welcome Support

  • Plastic bags for food parcels –
  • Donations of (unopened) toiletries; toothbrush, towel, shower gels, clothes etc.
  • Non- perishable food items crisps, soup, chocolate, tins etc. to give out on Outreach!
  • Not to mention cash which can be sent by cheque in addition to other methods including Just Giving.

Comment

‘Helping with outreach in Holbeck – offering hot drinks, food, condoms and a friendly conversation – is my small way of making an active contribution to Basis’ incredible work. It is one thing to talk about an important cause, it is quite another to go out and meet the people you want to support’. A Current volunteer

Seeing Charity In Action

The Royal Commonwealth Society for the Blind is a UK registered charity 207544 and SCO38110 trading and branded as Sightsavers.
Facts You may Not Know
  •  31.2 million people  are blind when they needn’t be. With drugs and support Sightsavers have protected 330 million people from becoming new victims from river blindness or trachoma.
  • Sightsavers  2016 income was a massive £300million pounds. £230million of this was in the form of gifts in kind and donated service. – Merck & Co Inc. donated Mectizan®
    tablets shipped to Benin, Cameroon, Cote D’Ivoire, Ghana, Guinea, Guinea Bissau, Liberia, Malawi Nigeria,
    Togo and Uganda for distribution to those people at risk of developing river blindness.
  • International Trachoma Initiative (ITI), an independent not-for-profit organization dedicated to eliminating trachoma also donated via  Pfizer, Zithromax®  for Sudan.
  • Individual donations and legacies were £48m and £24m was received from various governments and other sources.
  • A Million Miracles is Sightsavers campaign to fund one million operations that will restore, save and protect people’s sight in some of the poorest parts of the world. £6million has been invested in neglected topical disease.
  • Sightsavers was founded in 1950 originally called the British Empire Society for the Blind, then the Royal Commonwealth Society for the Blind.
  • Compared to many other charities, cash and reserves are not overly large which may imply that money is being made to work hard.
  •  Sightsavers fund raising costs £18m each year!

Good and Bad Alzheimer’s

There are 69 registered charities that come up on a search for dementia or Alzheimer’s. This post contrasts the largest from the charity commission list and a registered charity that didn’t even feature in the 69 from the search.

Alzheimer’s Society Benchmark Facts & Figures

  • Annual income to March 2016 £100 million
  • 2,550 staff 10,000 volunteers –
  • Income has grown 40% in 5 years
  • Over 80% of income is spent on charitable activities
  • Cost of fundraising is 16% Income is derived more or less equally from Donations 37% and  Contracts 36% with Legacies 23% an important contributor.
    Investment income, trading and other is 4%

Alzheimer’s Society  spends £6.5m on research grants but delivers the majority of service via staff including ;-

  • Day and home care, Dementia support and advisers, Support groups, Befriending and Advocacy. An admirable range of service and support.
1133624 – Age Sentinel Trust
I was hooked in at the weekend by a face to face collector in our local garden center. The ‘shaken tin’ had a blue Alzheimers like logo but the collector showed me his Age Sentinel badge and said they collected face to face whilst the Alzheimer’s Society no longer did.  I moderated my contribution resolving to follow up.

I am not the first: Charitable Sentiments blog has interesting information on small charities and Age Sentinel who collect in retailers including Marks & Spencer and Tesco’s. It looks like I paid a Gumtree recruit rather than giving to anAlzheimer’s cause .

Age Sentinel annual income over the last 5 reports and accounts varies between £43k-£52k. Only 50% is spent on charitable work by making grants, providing information and logistical support,  special communication devices or home adaptations to individuals and number of voluntary organisations without any detail.

Concerns and Problems

Small ill disciplined charities damage donor goodwill:

  • Lack of clarity about the beneficiaries leaves donors cynical.
  • 33% costs apparently paid as commission.
  • Use of the illness brand  ‘Alzheimer’s’  in face to face unlicensed collection on private retail premises.
  • Age Sentinel shares a trustee and locations with 1141908 – Child Sentinel Trust. Their income and expenditure is also obscure and social media presence non-existent.

 

Accounting for Abortion

British Pregnancy Advisory Service (bpas) 289145  was established as a registered charity in 1968. As the leading provider of abortion services in the UK it has come to the fore this month with the announcement that the NHS will now fund abortions for people traveling from Northern Ireland.

Interpreting The Accounts

  • The charities 2016 income was £29.4 million the majority of which came from NHS charges for services provided, bar private work and four thousand pounds from donations and legacies. (more donations are being solicited in a full page advertising campaign in the LRB).
  • 40% of all expenditure in 2016 was spent on Head Office and Support Costs!
  • 16 staff were paid over £60,000 in the  year to March 2016. The top salary exceeded £160,000 plus pension contributions.
  • Average staff cost per whole time equivalent were £39,682 (so it seems many staff must be lowly paid.)
  • bpas purchased computer services for £672,000 over the last 4 years from a company in which one of the senior management has an interest.

Concerns for Trustees

  • Are your financial controls appropriate, adequate and regularly reviewed. Are you firm but fair when considering difficult issues that arise beyond your normal core service expertise.

Blood and Bone Marrow Cancer Charities

Cancers and diseases of the blood particularly in children generate a high level of fear and emotive concern.  Putting the ‘Child’ in the title of a charity may help with fundraising but is also a focus for remembering the pain and anguish that can be caused by cancer and blood problems.

Looking at a sample of the charities currently operating in this area they can be placed in three categories. Those supporting sufferers and their families with support information and advice. The funding charities who support clinical and related research and thirdly the local ‘light touch’ charities who have been motivated to extraordinary efforts by personal circumstance.

Our motivation for focusing on these charities is to highlight some of the good work but also the concerns for continued or increasing effectiveness.

Blood Relative Charities

216032 Bloodwise  was formerly called Leukaemia & Lymphoma Research until 2015. The rebranding and name change has led to some confusion and cynicism. Early problems with web site changes damaged confidence as does spending 31% of income  on fund raising. Given the high proportion of Legacy income this cost of fund raising seems excessive. Bloodwise partner with  the Calendar Girls, musical,  film and calendar raising £4m.
One of  over 50 registered Leukaemia charities Bloodwise  has  spent £500m over the last 56 years to fund world-class research into what they say are 137 different types of blood cancer.

1107328 – CLIC Sargent was created from a successful merger between ‘Cancer and Leukaemia in Childhood’ (CLIC) and Sargent Cancer Care for Children named in memory of the conductor Sir Malcolm Sargent. For children with cancer teams can provide nursing and specialist support to help families limit the damage cancer causes beyond their health.

1156384 -Child & Teenage Cancer & Leukaemia Foundation registered in 2014 had a small income £12,648 in 2015 and no current accounts. Information is scant despite a positive web site. They, like many small charities hit the radar via fund raising activities.

1118733 – The Maria Watt Birmingham Foundation for Childhood and Teenage Leukaemia.  Formed after the death from leukemia of 17 year old Maria. Over £400k has been raised and  The Maria Watt Foundation was instrumental in setting up the Be Child Cancer Aware campaign see below.

1141987 Be Child Cancer Aware has provided millions of ‘child cancer awareness cards’  to thousands of UK schools. BCCA is primarily concerned with helping the early-identification of cancers by disseminating the signs and symptoms of childhood cancers as widely as possible. Income includes charity bag collections.

For more on Hepatitis and Haemophilia read Bloody Issues

Who Controls Bone Marrow

803716 -Anthony Nolan generates annual income of £47m of which £34m is from donor provision. They help maintain a register of volunteer adult bone marrow donors who are prepared to donate their bone marrow to unrelated patients in need of  transplants.

They searche worldwide on behalf of UK patients for suitable donors prepared to donate stem cells. Additionally Anthony Nolan undertake pioneering research to improve the outcome of stem cell transplants.

1153917 – The Rik Basra Leukaemia Campaign a low income charity punching above its weight by running  stem cell registration events to add donors to the UK stem cell register.

1150056 DKMS Bone  Marrow Donor Center Branded as ‘DELETE BLOOD CANCER UK’, DKMS launched in February 2013 and already generates £3.6m revenue mainly from donor typing services and service provision. Their key mission is to recruit, retain and motivate potential stem cell donors to be on standby to save blood cancer patients’ lives. They are part of DKMS a 501(c)(3) non-profit organization based in the United States and Deutsche Knochenmarkspenderdatei  GmbH –

Concerns

  • There is  international commercial activity to register and match potential stem cell and bone marrow donors. It is more the role of Government than the charity commission to control and monitor these activities.
  • Why are there so many smaller charities dedicated to childhood forms of cancer. It must be possible to establish a method to optimise personal commitment and involvement to maximising the benefits from legacy or donation income.
  • Changing names, rebranding, launching social media and new web activity needs clear plans, trustee backing and sound capable management.
  • Charities need a ‘narrative’ or cohesive brand story to maximise impact and awareness. From small beginnings great charities can grow: the Eastwood family started Leukemia Research Fund, CLIC started by Bob Woodward, Anthony Nolan family and Sir Malcolm Sargent memorial all have made strong contributions. We should encourage and help new visions.

Bloody Issues

The blame game over contaminated blood supplies from USA in the 1980’s trundles on. Thousands of UK citizens developed Hepatitis C and HIV after being given infected blood and blood products. New pressure for a third inquiry was highlighted in a recent BBC Panorama programme and by Andy Burnham.

Charity Sector and Other Involvement

288260 -The Haemophilia  Society

Haemophiliacs and all people affected by bleeding disorders are represented, offered support and information by the charity .’  It has a limited income of  £645k per annum with smaller incomes at charities in Wales, Scotland  and the Irish Haemophilia Societies.

The Skipton Fund

This organisation is akin to a  Quango set up as a company ‘to implement and manage the UK-wide ex gratia payments scheme for people infected with the hepatitis C virus (“HCV”) from treatment with NHS blood, blood products or tissue. The Company acts as agent for the Department of Health and the Devolved Administrations.’ Its annual income and expenditure is a significant £12m.

298863 The Macfarlane Trust (MFT)

MFT was set up in 1988 by the British Government to support people with haemophilia who were infected with HIV as a result of contaminated NHS blood products, their spouses, parents and dependents.
MFT currently receives approximately £2.2 million each year from the Department of Health spent on discretionary regular payments to those who were infected and to bereaved relatives. They also make small grants to refer beneficiaries for specialist benefits and money management/debt advice.

1142529 The Caxton Foundation

The Caxton foundation is a discretionary grant making trust with annual income of £2m.  It was set up and wholly funded by the Department of Health to provide financial assistance and other benefits to meet any charitable need of individuals who have been infected with hcv through contaminated blood products who have received stage 1 payment from the Skipton fund and their partners, parents, children and dependants.’

1104279 -The Hepatitis C Trust

With annual income of £946k the trust aims for the elimination of Hepatitis C by 2030 preventing new infections,  diagnosing the infected and curing more victims. The trust provides information, support and representation for people affected by Hepatitis C and aims to lower the stigma of this disease.

1028027 Eileen Trust

With annual income of less than £100k per year the Eileen trust is a discretionary grant making trust that was set up and is funded by the department of health to alleviate the financial need of those non-haemophiliac individuals infected with HIV through treatment with NHS blood or blood products.

Birchgrove Group

Birchgrove is a support group and platform for views for people  who were infected with HIV/AIDS and hepatitis C through blood products in Great Britain.

Victims of infection find it extremely difficult and  frustrating and Birchgrove provides  a platform to inform politicians, parliament and the public of the myriad of problems faced on an everyday basis.

The Forgotten Few

Is a support group that ‘exists to give Co Infected Haemophiliacs “who were dual infected with HIV and Hepatitis C”  representation to Parliament and other public bodies. Since the 1980s the co infected community have been ignored and many silenced due to the huge stigma associated with HIV.

Concerns

Delays, prevarications and procrastination for over 30 years does no one any credit and leads to suffering, dilution of resources and lack of focus.

The Department of Health obviously feel significant responsibility as evidenced by the funding of several groups and charities. Why hasn’t a full cohesive solution been implemented.

The charities, pressure groups and organisations involved appear to duplicate some efforts and have failed to achieve an equitable solution.