There are many people who have helped with the formation of ICP Support but too many to name here individually. Jenny has included those people who were instrumental in helping achieve the key points of the charity’s development mentioned below and wishes to thank everyone else who has also assisted her along the way, in particular all the families who have donated samples to the research, held fundraising events and been there to support her efforts.
Jenny Chambers’ first baby, Victoria, is stillborn. No reason can be found, and the itching she mentioned during the pregnancy is dismissed as ‘normal’.
Her second baby, Alex, is born. Again, she itches and once more is told that that there is nothing wrong. Her pregnancy is induced at 38 weeks because of her previous history of stillbirth.
Jenny suffers a second stillbirth: another daughter, named Olivia. This pregnancy is Jenny’s worst for itching, but she is repeatedly advised that this is normal for pregnancy. After Olivia’s death her notes are looked at by another consultant, Dr Judith Weaver, and the diagnosis of OC is finally made. It is discovered that in all the pregnancies (one was at a different hospital) liver function tests had been performed and, although abnormal, had been ignored. It transpires that because Jenny was not jaundiced the doctors had not considered that there was a problem.
Jenny quickly realises that very few health professionals know about the condition, and this means that any woman who may have OC is unlikely to be aware of it either. In an attempt to raise awareness she establishes the Obstetric Cholestasis Support & Information Line. The decision to settle on the name obstetric cholestasis (OC) is dictated by the clinical research papers Jenny finds on the condition and through personal preference. Over time the term OC is used more frequently.
Jenny has her second son, Tim. She develops the condition again in this pregnancy and helps to trial two drugs, the second of which (ursodeoxycholic acid) seems to help to improve her abnormal liver function tests. At this point bile acids are not being measured, but Dr Elwyn Elias is setting up the facility in Birmingham to do so. Jenny’s blood is stored and later tests reveal bile acids of over 150 µmol/L, leaving no doubt about her diagnosis. Bile acid testing is formally introduced into the UK by 1994. An informal research group has also been established by Judith and Elwyn and Jenny is part of the group.
Bounty publishes information about the condition in their Bounty Book after Jenny contacts the publisher. Practical Parenting is the first baby magazine to write about the condition. Over the next few years other media articles follow that help to raise the profile of the condition. As a result, Jenny is contacted not only by women but by health professionals wanting to know more about it.
Jenny contacts Alison Rogers at the British Liver Trust and a meeting is held. As a result the first information leaflet on OC is produced. This is only possible following a generous donation by the former employers of Dawn Bennell, one of the women who contacted Jenny following the stillbirth of her son. The British Liver Trust very generously offers support for Jenny by funding the Support & Information Line, and for a while she is affiliated to them as a support group before deciding to become independent again.
As a result of increased media attention, the Support & Information Line is becoming busier and Jenny realises that despite raising awareness of the condition virtually all UK maternity hospitals have little or no knowledge of the condition. Although her own consultants are extremely supportive, she realises that she needs other centres for referrals. With the help of Jane Redfearn, whose daughter was stillborn because of OC, contact is made with Professor Nick Fisk, who has conducted some research into OC and she is put in touch with Dr (now Professor) Michael de Swiet, who replies that Jenny can let women know about the referral facility and suggests that for the future, if enough women are interested, there is the potential for research to be conducted.
With the support of Ralph Settatree, director of the West Midlands Perinatal Audit Unit, Jenny is invited to take part in a study called SATS (Stillbirths and Antepartum Term Study), investigating term stillbirths, that will form part of the CESDI 5th Annual Report. Whilst the aim of this study is not to look at the incidence of stillbirths in OC, a consequence of the findings is a potential stillbirth rate of 4.49%. In the worldwide literature stillbirth rates of between 5% and 15% have been quoted.
Jenny meets Dr Catherine Williamson, who is an obstetric physician and who has trained under Michael de Swiet. Catherine has made the condition one of the focal points of her research. Building on the suggestion that Michael had previously made about possible research ethical approval is extended to include women from across the UK and the Support & Information Line will be the conduit for women who are interested in providing samples for Dr Williamson.
Jenny begins her training towards a degree in counselling so that she can ensure that the helpline is maintained safely and professionally. Whilst she will not formally counsel people who contact her, she can use counselling skills to better support them. After some time out in 1998 following the death of her father, she graduates from Birmingham University in 2005.
Jenny and Tracey Smith, a mother who had contacted Jenny for information about the condition, take part in a programme by the BBC called ‘Trust me I’m a Doctor’. This helps to build awareness of OC.
While bringing up her two children, Jenny continues to raise awareness of the condition through media coverage that includes radio, newspapers and magazines. She is also invited to talk about the condition and her experience of it at maternity hospitals. She continues to work on the Support & Information Line and her records from this time contain details of thousands of phone calls from hundreds of women.
Jenny is formally employed by (now) Professor Catherine Williamson at Imperial College London to help with research recruitment, data collection and collation within the hospital and around the UK.
With the support of Carol Townes, Jenny treks in China to raise funds for research. She and Carol pay for their own costs to get them there so that all money donated goes directly to research.
Dr Saskia van Mil and Victoria Geenes, colleagues of Jenny, persuade her to join the 21st century and the first website is designed and maintained (for free) for her by Dr Edu Dorland. The name OC Support UK is decided on. A forum is introduced for women to be able to contact each other.
Jenny is invited in her role as Founder of OC Support UK to be a co-investigator in PITCH, the first trial of ursodeoxycholic acid, a drug used to treat the condition, in the UK. Judith Hibbert, a mother who has had OC and who supports Jenny in her work, is invited to be the lay-rep for OC Support UK and will sit on the Steering Committee. This firmly establishes the organisation’s involvement within the health sector.
Jenny holds her first major fundraising ball in London, helped by Rachael Rawlings, Kelly Ivil, Kelly Taylor and Lesley Bender, who Jenny has met through OC Support UK. Up until this point most of the donations that have come through to Jenny have been given to research into the condition. Genesis Research Trust has very generously been allowing Jenny to use their charity number to fundraise and as a result around £30,000 has been raised so far.
Two forums are set up on Google Groups, replacing the original forum.
A new look for the OC Support UK website is designed (again for free) by Ian Kingston and is launched. It begins to attract more women to the site. The first Facebook group is also launched.
January 2011–September 2011
Up until this point Jenny has always been reluctant to register as a charity because of the work involved. After much thought and encouragement by Karen Grundy, Sian Eaton, Jenn Deasington, Alice Tuson and Rachael Woodcraft who offer a long-term commitment to help her she decides to formally register OC Support as a charity, dropping ‘UK’ from the name in recognition of the organisation’s increasingly international reach.
September 2011–March 2012
Further help is offered by Magdalen Rees, Judith Hibbert, Dr Peter Dixon, Dr Victoria Geenes, Jude Gray and Andy Edgecombe who all become Trustees together with those mentioned above. Professor Catherine Williamson and Kim Medcalfe accept their invitations to become Patrons.
Formal charitable registration is granted and the charity is launched together with an information film about the condition, made (for free) by Vicki Psarias.
Jenny proposes that the charity’s name should be changed to ICP Support. There are two reasons for this. The first is to encourage the use of the correct scientific term for the condition (intrahepatic cholestasis of pregnancy). The second is that up until this point women have been using two different names for it: OC and ICP. The charity receives many emails from women in other countries, so referring to the condition by the most common name used should reduce any confusion and help to unite women all over the world.
The name is formally changed and the revised website is launched.
The first year of the charity sees the production of its first promotional leaflet, further media coverage of the condition, myriad fundraising events including a national awareness day, a commitment for the charity’s presence at conferences and baby shows and a new pin-badge. Plans are in place for an information leaflet to be launched in the autumn of 2013.
ICP Support’s first Awareness Week hits its target of raising £5000 for research.
Having outgrown the space available in Jenny Chambers’ home, the charity moves into an office.
The charity takes on its first part-time employee.
The Royal College of Midwives publishes an iLearn training module (an online training course) on ICP, written by Jenny Chambers and approved by Professor Catherine Williamson.
After consultation with the Charity Commission, Jenny Chambers is appointed CEO of ICP Support on a part-time basis.
Actress Helen George becomes a patron of ICP Support after being diagnosed with ICP during her first pregnancy.