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ITP Awareness Month
House of Commons September 2011
A packed Jubilee Room at the House of Commons was the venue for the Invitation Tea Party where the ITP Support Association sought to raise the profile of ITP and also lobby for the establishment of 16 Centres of Excellence across the UK.
Twelve year old Ella Ellis, who has suffered from ITP for almost two
years
The event was attended by a number of MP`s including our host, Alistair Burt, Stephen Timms and Yvette Cooper as well as most of the UK's leading clinicians in ITP. Also in attendance were representatives from major pharmaceutical companies including GlaxoSmithKline, Amgen, Baxter and Grifols. The guest list was completed by many ITP sufferers and their families, plus the ITP Support Association volunteer team and members of the press.
The proceedings began with an introduction from Shirley Watson MBE , Chief Executive and founder of the ITP Support Association. Shirley started by thanking one of the guests, Dr Mike Smith, for his pivotal role in the founding of the Association in 1995 when, as resident doctor on Radio 2's Jimmy Young Programme, he read out Shirley Watson's letter of intent to start a support group. She then focused on why there is a need to do even more in respect of raising awareness of ITP, which is so little known, and how this impacts on the lives of ITP sufferers. In addition Shirley confirmed that after starting the ITP Support Association back in 1995, a key requirement now was to see Regional Centres of Excellence established across the UK to offer better treatment, diagnosis, research, care and support for ITP sufferers and their families. To this end she reported that her meeting earlier in the day with leading ITP specialists from around the UK had resulted in a forum being formed under the chairmanship of Dr Bolton-Maggs to draw up criteria for the centres.
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Three ITP sufferers then related their own experiences of ITP. These presentations were given by Lt Colonel Crispin Black MBE, and Anthony Heard who is also the Communications Administrator with the ITP Support Association. These two speakers gave the perspective of what it is like to be an adult ITP sufferer, recounting their own case histories and sharing some of the lowest lows of ITP with some of the steroid induced highs of the condition. Between these two thorns, so to speak, the audience also heard a presentation from the rose of speakers, twelve year old Ella Ellis, who has suffered from ITP for almost two years. Her beautifully written and bravely spoken presentation was faultlessly delivered and it left a few moist eyes in the house. The afternoon then saw Professor Adrian C. Newland CBE, Professor of Haematology at Barts and The London School of Medicine speak and duly acknowledge the sterling efforts of the ITP Support Association in continuing to raise awareness of ITP and acting as a beacon of advice and inspiration for ITP sufferers and their families. The event was brought to a close by our host Alistair Burt MP, who thanked all those who had attended and confirmed that in his role it was absolutely key to provide a sounding board and platform for those causes where wonderful work is being done day in and day out , largely by volunteers. He was absolutely delighted to throw his weight behind the ITP Support Association and its` campaign to raise awareness of this rare condition. The ITP Support Association would like to acknowledge its gratitude to Alistair Burt for hosting this prestigious event and to his wife Eve Burt who did so much in the background to make the day run smoothly. It was certainly a day to remember for those present, and we hope to get reports into many papers and journals to assist the awareness drive.
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 Lt Colonel Crispin Black MBE |
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