Committee
Public Petitions Committee, 23 Oct 2007
23 Oct 2007 · S3 · Public Petitions Committee
Item of business
New Petitions
Endometriosis (Research Funding) (PE1057)
Andrew Billson-Page:
Watch on SPTV
Thank you.An overview of endometriosis is perhaps unnecessary, given the Scottish Parliament's previous discussions on the issue. The Parliament's research note on endometriosis—dated 25 June 2001—gives the following description:"The condition is defined as one in which tissue almost perfectly resembling the uterine mucous membrane (the endometrium) and containing typical endometrial granular and stromal elements occurs aberrantly in various locations in the pelvic cavity."That neat medical definition adequately summarises the biomechanics of endometriosis.However, such definitions can never convey the level of suffering that is endured by those unfortunate women who have first-hand experience of the symptoms of the condition. Apparently, endometriosis is the second most common gynaecological problem in Scotland. The symptoms vary, but they almost always include severe and debilitating pain and they can include infertility and fatigue. The condition is also known to cause gastro-intestinal and bladder-related problems. In addition, although the symptoms are largely physical, they can have effects on mental health.There is currently no known cure for endometriosis, although a range of treatments is on offer. Unfortunately, those are mainly geared towards controlling and relieving symptoms. Treatments include pain-killing medication, hormonal treatments that prevent ovulation and surgery—which, at its most drastic, can include hysterectomy. In many respects, those treatments are less than ideal and they are certainly inadequate. However, until there is a better understanding of the causes of endometriosis, treatments will inevitably have limited effectiveness. Therefore, research is urgently required if progress is to be made. The immediate priority must be more effective treatment and earlier diagnosis.The fact that current thinking on the potential causes of the condition is confused, contradictory and speculative underlines my case for increasing responsible medical research into the problem. One theory is that endometriosis is caused by retrograde menstruation—an explanation that is favoured by the National Endometriosis Society—but, for example, a clinical group from the national university hospital in Iceland suggests that it is due to a genetic or hereditary predisposition. It has also been claimed that endometriosis is a by-product of the impact of the toxins and chemicals that are included in our diets and in products that are in use in our everyday lives. Another theory is that the condition is caused by remnants of tissue that remain from the earliest stages of pre-birth development. All those theories are plausible, but we need to explore them further. The scientific and medical institutions are failing women—including Scottish women—by speculating on, rather than facilitating, solutions.Some progress has been made. The United Kingdom has an all-party parliamentary group on endometriosis. In 2004, the National Endometriosis Society received £25,000 from the UK Government. Groups such as the National Endometriosis Society have done a great deal to increase endometriosis awareness, as has a recent grant from the European Union. However, as the National Endometriosis Society affirms, funding for research is the central issue. Although facilitating research is one of the society's stated aims, the society itself concludes that it is currently not in a position to do that. Instead, its activities are limited to awareness campaigning. For me, that is not enough.On 9 June 2003, in a House of Commons written answer, Jacqui Smith conceded that Government funding had fallen from £1.8 million in 1998 to £1.2 million in 2002. I cannot extrapolate the Scottish statistics from those figures, but they demonstrate that a sympathetic stance from our elected representatives in the Parliament is incompatible with a backdrop of Government funding cuts.In her motion for a debate on endometriosis in the Scottish Parliament in 2001, Annabel Goldie, the leader of the Conservative group, urged the Parliament to acknowledge"the need for greater awareness of this disease amongst the general public and the medical profession",and to encourage"greater co-operation between relevant organisations and individuals to facilitate the early diagnosis and treatment of the disorder."Annabel Goldie's comments were welcome and are still pertinent six years later, because we have not moved forward. It is unfortunate that she stopped short of making recommendations on funding, but she stressed the importance of co-operation. In my call for funding, I say that co-operation is needed, because research has been piecemeal and inadequate.Malcolm Chisholm said in a written answer on funding:"The Chief Scientist Office … has responsibility for encouraging and supporting research into health and health care needs in Scotland. The CSO has previously contributed £201,000 to research projects on causation and treatment options for endometriosis but is not currently funding any research into endometriosis. The CSO responds to research applications … and this role is well advertised throughout the health care and academic community."—Official Report, Written Answers, 13 August 2003; S2W-1558.I appreciate that funding arrangements for scientific study are complex and often not understood by the public—or the MSP who asked Mr Chisholm the question. However, it would be facile to suggest that we are talking about an exclusively scientific research project; we are talking about finding a permanent solution to a pertinent health question. It is a matter of social justice.In 2001 Annabel Goldie had a vision of a Scotland in which early diagnosis and treatment of endometriosis was a reality. For that to happen, we need more than well-intentioned discussion; we need significant research funding, which will increase understanding among the medical and scientific communities and lead to more effective treatment. Such an approach is likely to have significant economic benefits as the need for drastic surgical intervention is reduced. For those reasons, I ask members to give my petition due consideration. I am sorry if I have overrun my time.
In the same item of business
The Convener:
Lab
I welcome our first oral submission this afternoon. Petition PE1057, by Andrew Billson-Page on behalf of the Save our NHS Group, calls on the Scottish Parlia...
Andrew Billson-Page:
Thank you.An overview of endometriosis is perhaps unnecessary, given the Scottish Parliament's previous discussions on the issue. The Parliament's research n...
The Convener:
Lab
You have done so slightly, but do not worry about it.You raised a number of issues in your petition and your statement. Members have debated what the Governm...
Robin Harper (Lothians) (Green):
Green
I ask Andrew Billson-Page to clarify a comment that he made towards the end of his statement. Did he say that currently no research is going on in Scotland?
Andrew Billson-Page:
That is what Malcolm Chisholm said in 2003. He referred to a one-off donation of £201,000, which the Scottish Executive had made in 2001. There was no regula...
Robin Harper:
Green
Forgive me, but I am not clear about how things are done. Does the CSO commission research or does it respond to and fund research proposals from universitie...
Andrew Billson-Page:
My understanding, which is limited, is that a research proposal would have to come from the academic institutions. That is the difficulty. Endometriosis is a...
Rhoda Grant (Highlands and Islands) (Lab):
Lab
Have you asked scientific institutions whether they are willing to do the research that you talk about and to bid for funding for it? Do you know where they ...
Andrew Billson-Page:
I am a medical student, so I have a medical understanding. When I put the petition together, I spoke at length with Dr Jean Turner when she was an MSP. Her t...
Rhoda Grant:
Lab
Are you aware of research that is being done in other countries?
Andrew Billson-Page:
Research is being conducted in Iceland, but it seems controversial. Organisations in other countries refute some of the evidence that is claimed to have been...
Nanette Milne (North East Scotland) (Con):
Con
I am not sure of the up-to-date position. I was first involved in the issue of endometriosis when I became an MSP in 2003. I was in contact with people in Ab...
Andrew Billson-Page:
Some research is still going on. My main point is that central Government has cut funding by a third. That is a concern, because the amount of research that ...
Nanette Milne:
Con
On a slightly different tack, I was under the impression three or four years ago that an application might be made to the Scottish intercollegiate guidelines...
Andrew Billson-Page:
I am aware of nothing of note since 2002, apart from the rather speculative claim from Iceland that endometriosis is exclusively genetic.
Tricia Marwick (Central Fife) (SNP):
SNP
Do any self-help organisations in the United Kingdom deal with endometriosis?
Andrew Billson-Page:
Obviously, there are many self-help groups for women generally, but two major organisations deal with endometriosis: the Endometriosis UK foundation and the ...
Tricia Marwick:
SNP
Does either of those organisations fund research? I know that the Multiple Sclerosis Society has funded much research into MS. Is research being done through...
Andrew Billson-Page:
The National Endometriosis Society has a stated aim of researching endometriosis. Unfortunately, it concedes that because of the economic restrictions that i...
Robin Harper:
Green
I take your point about Iceland. Iceland's population is quite small—it is roughly that of Aberdeen—so the sample is rather too small to draw conclusions fro...
Tricia Marwick:
SNP
I was present in the chamber when Annabel Goldie led the members' business debate on the subject in 2001—a lot of women MSPs were there. Part of the purpose ...
The Convener:
Lab
Andrew, you mentioned that you are a medical student. Is the condition part of the area that you are specialising in, or is it just an issue that you feel st...
Andrew Billson-Page:
I have been strongly affected by it. I would like to have children, but my wife is not able to. That is not an endometriosis issue but, from there, I came in...
The Convener:
Lab
That is fine—I am not criticising that. If such a number of women are affected, why have we not been able to get key players to give the condition more prior...
Andrew Billson-Page:
When the public think about health, they mainly think about hospitals, as I am sure you, as MSPs, will appreciate. The public tend also to focus on life-thre...
The Convener:
Lab
With that discussion and those suggestions, I have now heard from members on the matter. We would like to write to the Cabinet Secretary for Health and Wellb...
Rhoda Grant:
Lab
The National Endometriosis Society was mentioned as a voluntary organisation interested in the scientific research. It would be good to write to it for infor...
The Convener:
Lab
Do members have any other suggestions?
Nanette Milne:
Con
I raised the SIGN guidelines issue because I knew that there were no guidelines for dealing with endometriosis. There is a process to follow, which I thought...
The Convener:
Lab
More will happen at the next stage, but those are good and sensible suggestions from members—I hope that the clerk noted all of them. We will write to those ...