Select Committee on Culture, Media and Sport Appendices to the Minutes of Evidence


Memorandum submitted by the Association of Medical Research Charities

  The Association of Medical Research Charities has consulted its member organisations (a list of which is included as Appendix A[34] with regard to this evidence to the inquiry. The comments that follow focus only on those issues directly relevant to medical research charities and opinions are not given on issues that are outside the Association's specific remit of medical research and medical research charities.

  The Association of Medical Research Charities (AMRC) welcomes the Select Committee's decision to conduct this inquiry. The National Lottery has been very successful in raising new funds for a very wide range of activities but it is timely now for the Committee to collect views on the operation of the Lottery and consider how to make the most of the opportunities it provides for the future.

  There are 109 charities within AMRC. Membership includes both fund-raising and endowed charities and charities that support only medical research and others that support a wide range of activities including patient support and care. There are only five charities that make medical research grants totalling more than £10 million per annum and the vast majority of the rest spend much less than £0.5 per annum on UK medical research. The total expenditure of all member organisations was £966 million in 1999-2000 of which £532 million supported medical research in the UK. This total includes endowed charities such as the Wellcome Trust (which alone accounts for over half of the research expenditure). Further analysis of expenditure and types of charities is attached as Appendix B*

The special contribution of the charity sector

  The public, through their generous support of charities that fund medical research, have had an important impact on the landscape of medical research in the UK. The research supported by them is very different in its priorities and focus from that which tends to be funded by the Medical Research Council, other Government agencies or the pharmaceutical industry. For example, it is often disease specific with priorities identified from the interests of patients and the public. Relatively few charities fund clinical trials and they do not generally support the development of new drugs.

The promotion and public image of the National Lottery and the impact of the National Lottery upon charities and charitable giving

  The National Lottery remains strongly associated with the concept of supporting "good causes" and to some extent the public continue to confuse this with the idea of supporting "charities". There was undoubtedly an impact on donations to charity in the initial two years of the Lottery and this coincides with an overall drop in income for AMRC fund-raising charities during those years. The majority of member charities believe that the negative impact of the Lottery on charitable giving has now largely passed though there are concerns amongst smaller organisations about the way in which a new operator might seek to promote it (for example as a "people's lottery").

The operation of the National Lottery Distribution Fund, the level of those funds for good causes, including whether the good causes should be reviewed, whether some should be dropped and/or whether new good causes should be introduced

  The AMRC would wish to see the distribution of funds to good causes reviewed and would support a reassessment of the areas that should benefit from the National Lottery. Under the present mechanisms, medical research is not a significant beneficiary of the Lottery even though there is consistent evidence from opinion polls and charitable giving that the UK public considers medical research to be a "good cause". Moreover, as the public continues to equate the term of "good causes" with "charity" or "voluntary" activity they express surprise that the Lottery does not mirror their own willingness to contribute to medical research for public benefit. To date, medical research projects have received £18.8 million of the £8.9 billion Lottery funding: just 0.211 per cent.

  AMRC would not wish to argue that any of the current good cause areas should not have benefited from the National Lottery. However, it does not believe the long-term credibility of the National Lottery and public support for it can be maintained if the beneficiary areas are cast in stone and are not reviewed from time to time. AMRC does not believe medical science should permanently be excluded. Certainly the public would consider medical research to be a "very good cause" and AMRC believes that there would be strong public support if medical research were amongst the good causes to benefit from the Lottery in the future.

  In comparison with some of the other beneficiary areas medical research is less able to secure alternative sources of income to develop. To put this in context there are some examples from activities that currently receive Lottery support. For the two years from 1997-99, the Royal Opera House received £55 million in Lottery grants. In the same period the ROH returned £31 million in trading income and £28 million in corporate sponsorship and donations. Medical research charities do not have this level of trading or corporate support. The smaller charities in particular, find it very hard to attract corporate donations of any kind, and certainly find there is no opportunity for corporate sponsorship which would require a much higher profile than they currently enjoy. Nor do the activities of medical research and patient care offer much opportunity for trading links. There is little or no opportunity for corporate sponsorship of research as the independence of the researchers and the research must be maintained. In the area of sport there are also significant opportunities for sponsorship and trading that far exceed the alternative sources of income available to medical research: Sport England identifies 900 potential UK corporate bodies that have a track record in sports sponsorship.


  It has been suggested that those who play the Lottery should be given an opportunity to indicate which areas of "good causes" they would wish to contribute to. Several medical research charities have said they favour this though the AMRC is aware that this would be a challenge for any operator and could be difficult to administer. However, the current UK National Lottery is, we understand, the largest single regular lottery in the world and it faces no serious competition. AMRC would like to suggest that the Committee might look at the possibility of breaking up the single lottery to provide for three or four specific lotteries for areas such as sports and the arts, social welfare, children and ageing and health and science (to include medical research). Experience from the Netherlands suggests that the vast majority of players still play a lottery to win but that a section of the population is encouraged to participate because they identify with the final beneficiaries. Such a change would also address the public's concern about the level of prizes, as it would serve to split the weekly jackpots.

National Lottery Charities Board

  The National Lottery Charities Board had not originally intended to include research of the kind supported by members of AMRC in its grants programmes[35], but eventually in April 1996 it introduced the first of two research grants rounds within a wider Health Disability and Care programme. Health and medical research grants accounted for just £6.2 million of the awards made. In 1998 the NLCB introduced a second Health and Social Research Round and this time a total of £12.6 million was awarded for medical and health research projects. This amounts to £18.8 million for health and medical research from a total of £1.7 billion in grants, or just over 1 per cent. There has been no research funding available from the NLCB since 1998. The Board has announced recently that it will in the future introduce a regular general research grants round which it is expected will amount for around 3 per cent of the NLCB's income—or approximately £8 million per annum—not all of which will be for medical research.

  AMRC acknowledges that the NLCB is under enormous pressure in seeking to tackle the huge area of poverty and disadvantage within which so many voluntary organisations (including those that focus on poor health) have a role. But in comparison to the research programme, the NLCB has awarded £107 million to UK based charities working overseas from four international grants programmes and has recently announced a further programme for this area to run from 30 October this year.

  It is not clear to AMRC how the relative priorities of the NLCB have been agreed: we know that public consultation has been part of this process and we know that within this medical research emerged as an area supported by the public. The process of prioritisation has not been totally transparent and there has been concern that the nature of the Board membership may not have been supportive of some areas of charitable activity. The NLCB has made reference to "relative" need and some Board members have suggested that medical research is "relatively" expensive, should be funded by Government, is too far removed from relieving suffering and simply serves to support academic scientists. There has been little support within the Board for the sort of research that the charities themselves identify as important which will often be laboratory based science or early clinical work. AMRC has worked very hard to dispel these misunderstandings, and medical research charities are indeed grateful that they now at least have found a place in the NLCB's programme, however modest.

New Opportunities Fund

  It may be possible for the New Opportunities Fund to support a medical research related programme, for example a scheme that focused on the development and use of new technologies in medicine. Although the NOF has already encompassed some health related programmes there has been no obvious link with research and therefore no opportunity for using the proceeds of the Lottery to develop medical research in the new directions now available.

  The New Opportunities Fund is disadvantaged by a perception that its grant programmes are overly influenced and directed by Government policy and priorities. One of the real advantages of the strong UK medical research charity sector is that it has established a medical science base in the UK that is in part independent from Government and cannot be influenced by a single body or group of people. It seems unlikely that the NOF would be able to support an area of research activity that the Government itself had not identified as a priority. This could mean that a NOF research programme may not fit well with a charity sector which inevitably focuses on the things that it perceives Government has failed to do or does not place as a high enough priority. For example, many charities, even quite small ones, are already the only or principle source of funding for research in their field in the UK: examples include the fields of cancer, cystic fibrosis, diabetes, Alzheimer's disease, heart disease and arthritis. This is true also of many of the very small organisations within AMRC that support work on rare conditions that do not focus in the priorities of Government funding agencies.


  AMRC considers that it is important that Lottery proceeds are primarily used to fund projects and activities that are additional to those already included within Government's tax-funded plans. AMRC believes that concerns about additionality should not mask the reality that many voluntary organisations work closely with and alongside the statutory sector delivering activities that at the very least overlap those already supported through taxation. Medical research is a good example of this. However, the priorities of the charities can be rather different and the key consideration is, AMRC believes, that initiatives funded by the proceeds of the Lottery should not be those that would normally be supported directly by government and are not part of departmental spending priorities. Lottery funding should be used for new and different initiatives that are not an essential part of statutory provision and are not designed, directed and dictated by Government.

The need for expertise

  AMRC believes that to support medical research effectively any distribution body will need to have an advisory mechanism drawn from a broad base of expertise that will enable identification of the best and most timely opportunities for medical research to exist.

October 2000

34   Not printed. Back

35   In April 1995 the National Lottery Charities Board published details of its priority which would focus on the "lives of people suffering poverty, disadvantage and discrimination". Within this the Board indicated that it would support "research and development into technological advances which may benefit those falling within the priority area of disadvantage". The Board confirmed that scientific and academic research into such fields as gene therapy were outside their priorities but developing new aids for the disabled would be within them. Clearly this would have left most of the research supported by UK charities outside the NLCB's remit. Back

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