ITP Support Association Local Group Meetings

 We are in the process of rolling out Local ITP Group Meetings around the country. These local groups are an opportunity for ITP patients, their family and friends to meet in an informal setting over a cup of tea/coffee and an opportunity to chat and talk about each other’s experiences with ITP.

If you would be interested in volunteering to help organise an ITP Local Group Meeting in your area please email This email address is being protected from spambots. You need JavaScript enabled to view it.

 

Cheshire ITP Local Group Meeting

Next Meeting: Friday 21st June 11:00am to 13:30pm De Trafford Arms in Alderley Edge

Venue: De Trafford Arms in Alderley Edge

 

Devon ITP Local Group Meeting

Next Meeting: September / October Date TBA

Venue: St Andrews Church Hall, Ashburton, TQ13 7DD.

Limited parking is available at the hall, if this is full then you can park on the forecourt of the residential home next door (St Andrews House).

 

Scotland ITP Local Support Group Meeting

Next Meeting: Thursday 3rd October 1.00pm to 3.00pm

Venue: Caiystane Hall, Fairmilehead Parish Church, 1a Frogston Road West, Edinburgh, EH10 7AA.

 

East of England ITP Local Group Meeting

Next Meeting: Wednesday 3rd July 2:00pm start

Venue: The Platelet Mission, Kimbolton Road, Bolnhurst, MK44 2EL

Limited parking is available at the Mission, if this is full then you can park on the road.

 

Nottinghamshire ITP Local Support Group

Next Meeting: Tuesday 25th June 7pm start

Venue: Grange Hotel, 73 London Road, Newark, NG24 1RZ

 

Sussex ITP Local Group Meeting

Next Meeting: 31st August 10:30am to 12:30pm

Venue: St Pauls Church Hall, St Pauls Church, Churchside, Chichester, West Sussex, PO19 6FT

 

 Legal Disclaimer: The information discussed at these local group meetings It is not intended nor implied to be a substitute for professional medical advice, diagnosis or treatment. You must contact your doctor who knows you and your medical history for more specific information and advice based on your individual circumstances. No liability whatsoever is accepted by the ITP Support Association, its staff, volunteers or medical advisors.

 

 

 

 

 

 

 

 

 

 

 

ITP Clinical Centre Survey Results

In late 2017 we invited patients who attended the various ITP Clinical Centres around the country to complete a short patient satisfaction survey. We wanted to assertain the patients perception of how the centres were performing.

The responses to the questions showed that, overall the centre were performing to a high standard. Although the on-line survey closed in February we continued to receive paper surveys until the end of April with 245 surveys being recieved overall.

Read more ...

Last year many of you may recall that a group of rare disease stakeholders came together to form a Priority Setting Partnership (PSP) to find out what matters to patients, carers and clinicians in the field of Bleeding Disorders. Some people experience problems with bleeding throughout their lives as the result of an inherited disorder such as haemophilia or von Willebrand disease. Others may have long-term problems due to an acquired problem such as immune thrombocytopenia and finally some people may have experienced problems only after childbirth or surgery.  To this end the PSP launched a survey 12 months ago asking for people to consider which questions they think are the most important for researchers to be asking.

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Holiday Arrangements Summary

Before you go:

  • Order the ITP Support Association's Holiday insurance and Travel Guide, which includes advice on insurance, flying, avoiding malaria, medicines and vaccinations, It also includes insurance companies recommended by our members.  
  • If travelling to Europe get a European Health Insurance Card (EHIC) to entitle you to free or discounted healthcare in European countries.
  • Discuss any required vaccinations with your doctor well in advance, bearing in mind that they are not effective within 3 months of certain drugs.
  • Order medication well in advance, ensuring you have enough to last the holiday. Inform your holiday insurance company about your ITP, or you may find you are not covered in the event of a claim (they may require a doctor’s letter).
  • Try to find out what ITP is called in the country you are going to, in case of an emergency. You may be able to obtain this from the country’s embassy.
  • Find out what the equivalent of 999 is in the country you are visiting.
  • Find out the locality of the doctor and hospital nearest to your accommodation.

Make copies of all important documents, such as passports, and leave the copies with a friend of relative. You may need the copy if your originals get stolen.

If you take prescribed medicine, take a copy of your prescription and doctor’s letter. 

Is Air Travel Safe?

Risk of bleeding?

The question of safety in air travel is one that needs to be considered individually. It is generally considered that there is little risk of bleeding if the platelet count is greater than 30 unless there is a history of bleeding problems at this level. If the platelet count is below 20 there may be a greater risk, although this is not necessarily related to flying but to the condition of the patient. There is no clear correlation between a low platelet count and bleeding manifestations, so it is better to discuss this individually with the doctor who knows your symptoms.

The ITP Support Association’s medical advisors recommend that if the platelet count is around 30 or above and there are no bleeding problems, flying should present no additional risk. Some consultants express concern about their patients going on long-haul flights in pressurised cabins, but the Association’s medical advisors in the UK and US agree that they know of no evidence that there is any increased risk of bleeding relating to air travel.

The national ITP guidelines approved by the British Committee for Standards in Hæmatology (published in the British Journal of Hæmatology back in 2003 contained the following statement: ‘There is no evidence that air travel predisposes to bleeding in patients with ITP; there is no indication to treat the count prior to holidays other than to cover activities’ . There has been no change of advice issued since. However, if you are prone to nose or mouth bleeds that require medical intervention you should consider whether you could cope with this mid-air.

Deep vein thrombosis

The possibility of deep vein thrombosis on long-haul flights is now accepted as a recognised hazard for travellers. Extended periods sitting in a plane in cramped conditions (plus a spot of dehydration, booze and caffeine!) may encourage blood platelets to clump together in the veins to cause thrombosis. This is possible even with a low platelet count, and particularly with certain treatments.

Aspirin should always be avoided by thrombocytopenic patients, despite the advice to other passengers that it be taken when flying. Flexing toes, ankles and knees while seated, plus a periodic walk up and down the plane, will help to keep the blood moving during the flight. Drink plenty of water and avoid too much alcohol.

ITP Research Grants

The ITP Support Association periodically awards funding to support ITP research in the UK. Preliminary project applications (up to £40,000 in value) are invited and proposals requesting smaller sums are also welcomed. The closing date of the next grant round will be announced when sufficient funds become available. (Email This email address is being protected from spambots. You need JavaScript enabled to view it. if you wish to be informed when the next grant round opens). Applications are invited from all areas of ITP research, but preference will be given to applications that show a short- to medium-term patient benefit.

Please click here for an application form in Microsoft Word format. Applications are required electronically by filling in this form and returning it by email, please do not scan or print for hand-filling.


Please see project guidance notes available here.

The ITP Support Association Team

 

Chief Executive

Mervyn Morgan

 

Office and Fundraising Co-ordinator

Liz Gooch

  

Social Networks Administrator

Hayley Howie

Book Keeper

Sally Gilpin FCCA ATT

Building & Electronics Maintenance

Frank Watson

ITP Patient Mentors

Rhonda Anderson
Derek Elston
Dave Farrow

Founder

Shirley Watson MBE


Charity Registration No. 1064480

ITP Support Association Trustees

 

Acting Chair

Professor Adrian Newland CBE MA FRCP FRCPath

Adrian Newland is Professor of Haematology at Barts and the London School of Medicine and Dentistry, Queen Mary University of London and is an Honorary Consultant at Barts Health NHS Trust. He has a particular interest immune thrombocytopenia and hosts the only tertiary referral centre in the UK; the UK ITP Registry.

He has an interest in novel treatments and support therapy and is involved in guideline development and the multi-disciplinary approach to patient care. He has a research department within the Medical School. He has recently stepped down as Director of Pathology for the Trust. He was chair of the London New Cancer Drugs Group and the Cancer Drug Fund for London and Deputy Chair for the National Chemotherapy Clinical Reference Group. He is chair of the NICE Diagnostic Assessment Programme and of the Healthcare Forum for the UK Accreditation Service and is currently the National Clinical Advisor in Pathology to the NHS.

He has published extensively on Immune thrombocytopenia and supported Shirley Watson when she formed the Association in the mid-90s and is a strong believer in involving patients in their disease and care. He has been a medical advisor to the Association since then. His clinical department hosts many clinical studies and the research department is looking at aspects of the immunology of autoimmune disease and he was instrumental in the development of the national ITP Clinical Forum.

He was President of the British Society for Haematology in 1998 and President of the Royal College of Pathologists from 2005-2008 and is the immediate past-President of the International Society of Hematology. He received the CBE in the 2010 New Year’s Honours List.

 

Vice Chair

Derek Elston FRICS

Derek Elston, a chartered surveyor by profession, was born and bred in the Wirral and educated at Kingsmead School in Hoylake and at Ruthin School, N.Wales. On leaving school, he qualified in the valuation of industrial plant and machinery installation. His professional career has taken him on assignments to many countries throughout the world.

Derek has been an external tutor at the College of Estate Management, part of the University of Reading and has also been an examiner in the valuation of plant and machinery for the Incorporated Society of Valuers and Auctioneers. In 1976 he had the honour of being their National Junior Chairman and in the same year was appointed to the board of that professional body, prior to their amalgamation with the Royal Institution of Chartered Surveyors.

He was diagnosed with ITP in 1994 and became a member of the ITP Support Association in 1997. He was appointed a trustee in 2009 since which time he has developed the European connections and is the ITP European representative on the European Haematologist Association patients advocates board. He has attended many patient workshops sponsored by the European Parliament and has participated as patient representative in several other research organisations/committees in the UK and Europe including NICE. He has presented papers in Portugal, The Hague and Brussels on the patients' perspective on ITP and its treatment.

 

Colin Williams BA FCA

Colin has suffered from ITP for a number of years and is a retired Chartered Accountant who has considerable experience of working with Charities.  Currently he is the Chairman of a Charitable Trust which is required to financially assist the  “poor and needy” of Bristol.

Historically he was a Member of a former District Health Authority which had responsibility for the local teaching hospitals. This necessitated close liaison with the adjacent medical school which, together with his professional activities, has led Colin to have an interest in academic medicine.

Colin has written a book on the history of his old school, travelled extensively around the world including being a cruise ship lecturer talking on globalisation and is a passionate supporter of his local football team, Bristol City. He has also been very active in public life and is an Honorary Alderman of the City and County of Bristol.

 

 

 

 

Xenia Norman

Xenia is 63 and still determined to get the most out of life despite her ITP and the fatigue that goes with it. She enjoys travelling and getting out into the country when possible . She is lucky to live on the edge of Horsell Common (famous for the Martians landing there at the start of War of the Worlds) and the Surrey Hills. She also enjoys the cinema and theatre and the odd book when time allows. She has been to nearly all the ITP conferences and was delighted to be the lay member on the research committee. She hopes that being a trustee will allow her to both learn from and give more to the ITP Support Association (the Association)

Before she retired she worked as a pensions lawyer in the City, often training and advising pension scheme trustees.  Although she is a bit rusty, she will be able to bring this training and experience to benefit the  Association and her fellow trustees. Law was her second career. She first qualified as a social worker with a special interest in placing older and more difficult children in foster and adoptive homes. She hopes to bring both her experience and  a creative, can do attitude to her role and to help the Association as it moves forward to confront new issues and medical developments. Never forgetting that the bedrock of its work is to inform and support those suffering from ITP and those who treat them.

 

The ITP Shop is now online and open

The updated ITP Shop is now online with all your favourite fundraising items, Wristbands, Pens, even a Cuddly Toy.

All proceeds from sales goes to help the ITP Support Association continue its work supporting those affected by ITP.

Click here to visit the Online Shop

Renew

To Renew as UK Member Click here

To Renew as an Overseas Member Click here

We value your continued support and thank you for renewing your membership.

What are the benefits of membership?
Membership of the ITP Support Association mailing list brings you:

The Platelet, our quarterly journal, access to our Friends counselling volunteers, further information on ITP, treatment and the latest research, through our numerous free booklets and factsheets, a free ICH alert card in case of a bleeding emergency, advice from our medical advisors on difficult conditions, concession ticket price for the annual ITP Support Association Conventions featuring visiting ITP specialists and occasional optional surveys to gather data on ITP.

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