UK ITP Forum

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ITP Nurses' Forum

'For thousands of people in the UK suffering from long-term conditions, one type of health care professional provides a level of care and support that they couldn’t do without – specialist nurses.'  (Royal College of Nursing leaflet, Specialist nurses Changing lives, Saving Money)

 

ITP Clinical Nurse Specialists (CNS)

An ITP Clinical Nurse Specialist (CNS) has specialist skills, knowledge and experience in caring for patients with ITP. They are key members of a multi-disciplinary team involved in the management of adults or children with ITP. Only a limited number of hospitals have an ITP Clinical Nurse Specialist.
The role of the ITP CNS is to offer patient support and to provide continuity of patient care, such as:-
Helping the patient and their family understand the management plan of their ITP.
Explaining treatment dosage and any possible side effects.
Assisting the patient or parents of children with ITP to make decisions about their care
Answering any questions from the patient or family members.
Listening to any patient concerns or problems.
Passing on details of the ITP Support Association and ITP phone app.

Meetings

In October 2018 the first meeting of the ITP Nurses' Forum was arranged by CNS Siobhan McGuckin of University College London Hospital who reported on the event as follows:

We held our inaugural ITP Nurse Education Day on Tuesday 30th October in The Royal College of GPs, Euston, London. We had a mixture of Adult, Paediatric and Clinical Trials Nurses in attendance alongside representation from The ITP Support Association.
The day proved to be extremely educational for everyone and it was also a fabulous opportunity for all of us who are involved in caring for ITP patients to meet and share experiences. All presentations were very well received and generated lots of questions. My huge thanks to all of the speakers: Dr Drew Provan, Dr Nichola Cooper, Camelia Vladescu and Will Watson for their participation in the Education Day. Our patient representative, Xenia Norman, gave an excellent account of her ITP journey. This was much appreciated by all of the audience, and it was really interesting for ITP nurses to hear the patient perspective of living with ITP. It is hoped that we can continue to drive the Nurse Education programme forward and to attract more ITP nurses to future meetings.
My personal thanks go to Shirley Watson from the ITP Support Association for all her help with the Education Day and to Professor Marie Scully from UCLH for her support and for financing the Education Day, enabling it to be held in The Royal College of GPs.

Siobhan Mc Guckin
Clinical Nurse Specialist
UCLH

Directors of ITP Clinical Centres

ITP Clinical Centres for ITP in Adults

Dr Steve Austin St George's Hospital, Tooting, London
Dr Catherine Bagot Glasgow Royal Infirmary
Dr Benjamin Bailiff Coventry & Warwickshire University Hospitals
Dr Gary Benson Belfast City Trust
Dr Charlotte Bradbury Bristol Royal Infirmary

Dr Nichola Cooper Hammersmith Hospital, London
Dr Gillian Evans East Kent Hospital Trust
Dr Mamta Garg University Hospital of Leicester
Dr Rashid Kazmi University Hospital, Southampton
Dr Quentin Hill St James University Hospital, Leeds
Dr Will Lester Queen Elizabeth Hospital, Birmingham
Dr Hamish Lyall Norfolk & Norwich Hospital
Dr Vickie McDonald The Royal London Hospital, Whitechapel, London
Prof. Mike Murphy Oxford University Hospital
Dr Tim Nokes Derriford Hospital, Plymouth
Dr Rachel Rayment University Hospital of Wales, Cardiff
Dr Sue Robinson Guys and St Thomas Hospital, London
Dr Marie Scully University College Hospital, London
Dr Emily Symington Addenbrookes Hospital, Cambridge
Dr Kate Talks Newcastle Royal Infirmary
Dr Jecko Thachil Manchester Royal Infirmary
Dr Henry Watson Aberdeen Royal Infirmary

ITP Clinical Centres for ITP in Adolescents (13 - 20)

Dr Victoria Grandage University College Hospital, London

ITP Clinical Centres for ITP in Children

Dr Tina Biss  Newcastle Royal Infirmary
Dr Philip Connor Children’s Hospital for Wales
Dr Nichola Cooper Hammersmith Hospital, London
Dr Michael Gattens Addenbrookes Hospital, Cambridge
Dr John Grainger Royal Manchester Children's Hospital
Dr Gregory Harvet University Hospital, Southampton
Dr Christine MaCartney Belfast Children’s Hospital
Dr Jayashree Motwani Birmingham Children's Hospital
Dr Tim Nokes Derriford Hospital, Plymouth
Dr Maria Pelidis Evelina London Children's Hospital
Dr Hafiz Qureshi Oxford University Hospital
Dr Emma Phillips Bristol Royal Hospital for Children

Dr Michael Richards Leeds Children's Hospital
Dr Keith Sibson Great Ormond Street Hospital, London
Dr Gordon Taylor Royal Aberdeen Children's Hospital
Dr Angela Thomas Edinburgh Children's Hospital

 

 

March 2018

A survey of forum members approach to the use of thrombopoietin receptor agonists (TPO-RA), led by Dr Jecko Thachil, has been published in the current issue of the British Journal of Haematology https://onlinelibrary.wiley.com/doi/epdf/10.1111/bjh.14395.  It is hoped that this will provide some guidance to clinicians managing problems such as how to titrate these drugs, how to deal with wide platelet count swings and when to consider stopping therapy.  For clinicians that would like to use a written plan to help guide ITP directed interventions around surgery, an ITP specific, perioperative template can be downloaded from the forum website at www.ukitpforum.org/guidelines.htm 

ITP Clinical Studies
Most ITP Clinical Centres are participating in the FLIGHT study comparing up front mycophenolate with steroid vs. steroid alone while a number are also participating in commercial studies of novel agents and other studies.  This forum website has a map showing the location of ITP Clinical Centres so please get in touch with them if you are interested in referring patients for clinical studies.

ITP Grant Award
The British Medical Association Foundation for Medical Research awarded the J. Moulton award to three directors of ITP Clinical Centres. Dr Nichola Cooper of Hammersmith Hospital is looking to understand clonality in T cells in ITP, Dr Charlotte Bradbury of Bristol is working on the development of a blood test to predict responses to steroid treatments in ITP patients and Dr Quentin Hill is researching the impact of Fc gamma receptor polymorphisms on treatment response in adult patients with primary ITP. (More about the BMA research awards and photos of the award ceremony that took place on December 5th can be found at www.bmafoundationmr.org.uk

ITP Centre Audit
The UK ITP Clinical Centres are undergoing their first national audit.The ITP Support Association survey of patients attending the Centres will close on 31st March.

ITP Patient Day, Hammersmith by Camelia Vladescu
The team of ITP researchers from Imperial College led by Dr Nichola Cooper, organised an ‘ITP Patient Day’ back in September 2017. The aim of the day was first of all to thank all the patients who have participated in research by donating blood and other tissue samples, who have allowed us access to their data and who have been happy to try out new drugs in phase I trials. 


The day started with an introduction to ITP including information about diagnosis, pathogenesis (which simply means what causes ITP), and different types of treatments available. The second part focused on research and included an introduction to the different types of research and touched on the various projects that we have running at the moment. A new app called ‘ITP Pocket log’ was also introduced. The app is now live and you can download it for free from your app store. The event finished with Shirley, who kindly agreed to speak on behalf of the ITP Support Association followed by a patient who presented her journey since being diagnosed with ITP. Attendees had the opportunity to ask questions throughout the event and also meet other patients and share their stories. 


We have received great feedback from the audience and would like to thank everyone who made the day possible, including all the speakers and of course, the ITP Support Association. A lot of patients and family members said they left with a better understanding not only of the condition but also of the current research. And most importantly, they liked being in a room where they were not the only ones with this weird, rare condition that sometimes people around them find hard to understand and relate to. So for all these reasons, we decided we will be hosting another ITP Patient day this summer. The date will be announced closer to the time so watch this space.


But enough of blowing our own trumpet! Before I finish, I would like to say that the event was a massive learning curve for us as well and we are looking forward to the next one! In the meantime, if you have any questions about the patient day, the research that we do or any suggestions please feel free to contact me (This email address is being protected from spambots. You need JavaScript enabled to view it.).


 

Studies and Clinical Trials

 UCB TP0001: Phase II study; A multicentre, open-label study of TP0001 in adult patients with persistent/chronic ITP; Inclusion criteria: platelet count ≤30 x 109/L. UK principal investigator Dr Nichola Cooper, Imperial College Healthcare Trust, London (Enquiries to Camelia Vladescu, This email address is being protected from spambots. You need JavaScript enabled to view it. 020 331 34306)

PRTX-100 in ITP: Phase 1b study; A multicentre, open-label Study of PRTX-100 in adult patients with persistent/chronic ITP; Inclusion criteria: platelet count ≤30 x 109/L. UK principal investigator Dr Nichola Cooper, Imperial College Healthcare Trust, London (contact Camelia Vladescu, This email address is being protected from spambots. You need JavaScript enabled to view it. 020 331 34306)

FLIGHT Study: A multicentre randomised trial of first line treatment pathways for newly diagnosed Immune thrombocytopenia to compare standard steroid treatment against combined steroid and mycophenolate https://www.cardiff.ac.uk/centre-for-trials-research/research/studies-and-trials/view/flight . Chief investigator Dr Charlotte Bradbury, University Hospitals Bristol NHS Trust (Enquiries to Julie Pell – This email address is being protected from spambots. You need JavaScript enabled to view it., +44 (0)29 2074 4370)

MRI Study: Can subclinical brain micro haemorrhages be detected in patients with thrombocytopenia using susceptibility sensitive MRI in order to better direct treatment. Inclusion criteria: At least one count ≤30 x 109/L since diagnosis. Willing to travel to Hammersmith Hospital, London. (Enquiries to Camelia Vladescu, This email address is being protected from spambots. You need JavaScript enabled to view it. 020 331 34306)

Paediatric Romiplostim Study: A Single Arm, Open-label, Long-term Efficacy and Safety Study of Romiplostim in Thrombocytopenic Pediatric Subjects With Immune Thrombocytopenia (ITP). This study is ongoing, but not recruiting participants.

The ITP Support Association

The Platelet Mission


Kimbolton Road


Bolnhurst,

Bedfordshire


MK44 2EL

web: www.itpsupport.org.uk   
email:This email address is being protected from spambots. You need JavaScript enabled to view it.   
tel: 01234 376559

Founded in 1995, the ITP Support Association promotes the welfare of patients with ITP, works with the medical profession to advance knowledge about ITP and funds research. The Association provides information through its website, numerous booklets and factsheets on ITP and associated topics, and a quarterly journal The Platelet. The charity holds annual patient conventions and runs occasional medical seminars for health professionals.
 Patients/parents can download an ITP Patient Leaflet or join the Association at https://www.itpsupport.org.uk/index.php/en/join-us/join-the-itp-support-association 
Download an ITP Patient Leaflet https://www.itpsupport.org.uk/downloads/itppatientleaflet2018.pdf
Download posters for hospitals https://www.itpsupport.org.uk/images/downloads/ITP_Poster2018.pdf

Please note: Patients need to liaise with their local GP or consultant if they wish to be referred to an ITP Clinical Centre.