There was an excellent attendance at the 1st Annual Hackney Sickle Cell & Thalassaemia Patient Conference on Saturday 18th October. The meeting was held in Clissold House, Stoke Newington; originally called Paradise House, and built by Jonathan Hoare in the late 18th century, it was inherited by Augustus Clissold in 1811, acquiring it’s modern name at that time. Jonathan Hoare was a Quaker and anti-slavery campaigner. His brother, Samuel Hoare, was a founder member of the Society for the Abolition of the Slave Trade and was also instrumental in encouraging the formation of a colony in Sierra Leone for freed slaves. It was fitting therefore that the meeting was entertained at lunchtime by local poet Nelissa Mendy, who read several of her poems, including one powerful piece about the persistent effects that the slave trade has on current generations.
The first part of the morning was devoted to “the science”. Dr Banu Kaya, from the Royal London Hospital, gave a well balanced talk on bone marrow transplantation, and the pros and cons of it’s use in sickle cell disease. She thought that the first adult transplants for sickle cell disease in the UK would probably happen in the next few years. Dr Pavel Kotouchek then spoke about hydroxycarbamide therapy, quoting Nelson Mandela to try and increase uptake of this drug, which has proven benefits in sickle cell.
Don’t be put off by imagined fears take the drug for a trial period and see whether it benefits you!
Dr Ruben Nzouakou talked about iron overload and the options available for managing this complication. These options have improved enormously with the advent of MRI technology, for assessing the degree of iron overload, and the invention of drugs like Exjade, which are effective and much easier to take than conventional iron chelators. The science contribution was completed in the afternoon by Dr Dimitris Tsitsikas, who presented exciting data on the benefits of automated red cell exchange transfusions. The automated programme has now been running for three years at Homerton Hospital; over 1000 procedures have been undertaken to date with an impressively low rate of complications. Interestingly, patients on the programme for poorly controlled pain, show a progressive, year on year reduction in pain frequency and hospital attendance, a phenomenon not previously reported, and these remarkable benefits are achieved without any iron accumulation, despite the large volumes of blood used. Dr Tsitsikas is hoping to publish these impressive results in the near future.
There was then a session on social issues. Pam Jones gave an overview of the changes to the welfare benefits system, introduced by the current conservative government, and how they will affect patients with sickle cell disease and thalassaemia. The changes have clearly brought increased complexity into the system, making it more difficult for individuals to access the welfare support to which they are entitled. Claudine Matthews then summarised her work helping patients with inadequate or inappropriate housing. Again the system is complex and difficult to negotiate and further hampered by the lack of affordable housing in Hackney. Claudine made a plea for realistic expectations, but emphasised that working together and bringing pressure to bear from various quarters often achieved surprisingly good outcomes. To complete this section of the day Tim Hendry, from Hackney Shine (Seasonal Health Interventions Network) discussed the work of this Council based organisation. Their aim is to tackle fuel poverty and reduce seasonal deaths, ill health and hospital admissions. All very relevant to sickle cell disease where the cold winter months are often greatly feared by patients.
During the final part of the conference Kevin Lester, Chair of the Homerton Hospital Sickle Cell & Thalassaemia Support Group talked about the work of the group and made a plea for a volunteers to take on the role of Treasurer and to offer IT support. Keisha Osmond-Joseph discussed the arrangements for transition from child to adult services in Hackney and there were some refreshing observations from the young adults in the audience. She also made a plea for new parents, with a baby with sickle cell disease or thalassaemia, to come along to the New Parent Coffee Mornings at the Sickle Cell Centre. Finally, Natasha Lewis talked about new developments to the service, including changes to the management of acute and chronic pain on the Medical Day Unit, the holistic therapies sessions, which are now up and running, very popular and heavily oversubscribed, and the plans to introduce a 24 hour helpline in the new year. Natasha made the point that money is tight in the NHS and there is always a battle for funding. It was vital that service users feed back their experience and views about new services since this is critical evidence to maintain the funding streams and keep the services up and running.
All in all an excellent and informative day. We are all looking forward to the 2nd conference next year.
Hackney Sickle Cell & Thalassaemia Centre 0207 683 457
Citizens Advice Bureau 0208 525 6350
Hackney Community Law Centre 0208 985 8364
Hackney Service Centre 0208 356 2929
Housing Homes Repairs 0208 356 3691
City and Hackney Carers’ Centre 0207 923 8750
Hackney Shine 0800 281 768