NEBATA Awareness and Conferences

Every year we host an educational Thalassaemia Awareness conference and workshop, which are free and open to the public with a focus on patients, their families, doctors and nursing caring for patients with Thalassaemia and anyone who is interested in learning about the various aspects of living with Thalassaemia. . The conference consists of speakers who are experts in the field talking about the newest advances in therapy for Thalassaemia as well as new management protocols and upcoming events in the Thalassaemia community. We are all about creating a community where everyone can discuss their issues and we work to improve the upcoming conferences and events. Not only do we host national conferences but we provide financial aid so that patients can travel abroad for international conferences on Thalassaemia. The conference will take place in the morning and consists of six different presentations by Thalassemia consultants. This is followed by a workshop, which gives our patients the opportunity to ask any questions in smaller groups. The benefits of this are that it increases their knowledge and improves their understanding of Thalassaemia.

This year International Thalassaemia Day spanned a weekend. On 8 May itself NEBATA volunteers were out in full force, with a stall in the foyer of the Royal Manchester Children’s Hospital, which is a very busy and vibrant area of the hospital bringing lots of different people to the stall.

At the Children’s Hospital volunteers gave out information about Thalassaemia and engaged with the public about the risks and problems associated with Thalassaemia. Sodexo very kindly donated some cupcakes, which was a great point of attraction for children and parents alike. Among the information given out were leaflets commissioned by the Sickle Cell and Thalassaemia Screening Programme. Many people found this information interesting and NEBATA’s own information leaflets were also well received. Mrs. Sue Lunt, the RMCH Hospital Director, was a great help in organising the stall and cupcakes from Sodexo. NEBATA is always grateful to all its supporters.

On 9 May NEBATA took part in an interview on the community channel, Ummah Channel, which would be broadcast live and then repeated later in the week. Among the panellists from NEBATA was Dr. Shruthi Narayan, a Haematologist from Manchester and NEBATA committee member, who talked about the clinical features and issues of Thalassaemia, Mrs. Zanib Rasul, Co-ordinator of NEBATA and Nighat Khan, a Counsellor who works closely with patients with Thalassaemia. There were many interesting questions from the viewers and the feedback from the station was very positive, which helps build a relationship with the community to further our work in improving awareness about Thalassaemia. This was all possible with the kind help of committee member Shakil Salaam, who is the presenter on the health show that hosted the NEBATA panellists.

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2014 marks 25 years of NEBATA being active. We started off in 1989 as the Blackburn and district bone marrow trust fund in the living room of some very scared new parents of patients with Thalassaemia. Now NEBATA is an internationally recognised organisation run from our headquarters in Manchester, supporting patients and their families from Bolton to Oxford and Leeds to Birmingham. In these 25 years we have seen dear friends leave us earlier than we would have liked, but this only made us stronger in our fight to educate, empower and befriend all those affected by Thalassaemia. Amongst the heart ache we have witnessed many of our patients get married and have very healthy families, graduate and go on to full active careers and raise beautiful healthy babies.

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Initially established to raise funds for the Royal Manchester Children’s hospitals Bone Marrow unit, the group moved on to provide respite for patients and their families. This led to further develop our support network and change of direction to provide educational support as well as emotional support, through the establishment of NEBATAs Annual Awareness Conference. Over the years the conference has grown and expanded reaching patients, families, doctors, nurses, students and many more.From an early stage NEBATA’s aim was to help people affected with Thalassaemia to thrive, grow and live. This was done with schemes such as the patient point of view forum, our Calendar Art project for the younger patient and our outreach work, through the media, including radio broadcasts, TV appearances and plugs on the BBC news. NEBATA and Mrs. Rasul are now auite a household name on channels such as Ummah Channel! Behinds the scenes NEBATA has worked with organisations such as TIF to bring all the new information to the patients and their families. NEBATA has also been active with the National Sickle Cell and Thalassaemia Screening programme as a patient representative for the North. Plans for the future include our Family fun day in August and parents evening outs, information for which you will see on posters around the venue.

Through the years we have had excellent support through our fantastic chairmen, beginning with Dr. Evans and up to our current chairman Dr. Andrew Will, who has been invaluable in his advice and care. It is, however, through the kindness and great support of Mr. Peter Mount that we have been able to really set roots and grow, through the establishment of our headquarters. Members have come and gone but still in the thick of it, still a key driving force in the work NEBATA has done and will continue to do is Mrs. Zanib Rasul. She has tirelessly worked for the last 25 years to bring NEBATA to where it is now and to have affected so many lives and to have helped in some way, however big or small.
This year’s conference was no different from our others in the high quality content and great experience for patients and their families. Feedback suggests the workshops were the most popular element of the conference and so a summary of each report has been prepared for this report.

2014 Conference Workshops

Growing up with Thalassaemia

This is a difficult time for all patients going through the stages of transition from paediatric care to adult care.This combined with the usual struggles of growing up in the modern world brought to the table discussion about responsibility, compliance and most importantly, independence; not only independence from parents but also while going on to higher education dealing with health professionals and treatment. A strong message from the group was that although at times it can be tough you can overcome challenges through strength built by forming a good network with health professionals, other patients and their families and knowing you are not alone on this long journey. More importantly was the message that there is hope for a better future through contact with NEBATA and other sources of information.

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Chelation Therapy

As ever the Chelation Therapy workshop was very popular and brought up some interesting questions and points. Patients and families raised concerns about taking medication and advice was shared amongst the group on the best way to take chelation and to be sure compliance is maintained. Another important topic with in the chelation therapy group was the ideal iron level and the process of MRI imaging to assess iron loading in vital organs. The conclusion to these significant issues was that close monitoring and regular therapy are the best methods for effective management.

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Panellists for the Professionals, Expert Patients and Parents Q&A session

Expert patient service feedback

This was a very productive workshop with six crucial subtopics being discussed and fed back to the main conference.

Need to come forward themselves not rely on others

There was a great deal of emphasis from amongst patients, on the importance of coming forward and owning the service that is available to patients. Many felt that if there was no ownership treatment and management of Thalassemia is harder. This really encouraged younger patients and in particular those on the brink of embarking on new lives at University for example.

Concerns for services where lots of young people

This group also felt some concern about services for young people. This overlapped a little with discussions held in the “Growing Up With Thalassaemia” workshop, though with a different angle. These important concerns, about appropriate facilities for young adults in units being available and a general move to ensure as smooth a transition to adult life and health care.

Expert patients

It was inspiring for many younger patients to sit together with older expert patients and share experience. It is certainly clear that expert patients are a resource for the community, patients and hospitals. Through this
peer support communities such as the Thalassaemia community – often referred to as the “Thal Family” people feeling isolated in relation to their Thalassaemia gain a point of contact and an opportunity for encouragement and support. Through this ideas such as a Buddy System were discussed, where expert patients would be paired with younger patients as a mentor. The over-arching theme for the workshops was the ability to raise questions in an informal setting, with opportunity to direct questions at health professionals. The comradery experienced by all is second to none and was most likely the basis for the success of the workshops.

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Winners of the First Prize in the Raffle

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Winners of the runners up in the Raffle

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TIF delegates in the stands at Manchester United Football Club and attendees at the 15th Annual Awareness Conference

NEBATA 15th Annual Awareness Conference, 2013

NEBATA’s fifteenth Annual Awareness Conference was held at the historic and world famous Manchester United Football Ground, Old Trafford. The venue and the programme made this conference an event to remember, and as such NEBATA had the privilege of welcoming guests from the Executive board of the Thalassaemia International Federation (TIF, Cyprus).
The programme was packed with information for patients, families and health care professionals, with the day beginning with an ecouraging introduction from NEBATA’s then Patron, Mr. Peter Mount. The rest of the day was filled with great talks such as Dr. Will’s presentation about Vitamin D deficiency and “The role of TIF in the lives of Thalassaemia Patients”, given by Mr. Englezos and Dr. Eleftheriou from TIF.
The afternoon session was dedicated to workshops covering varying topics such as Iron Chelation, chaired by Dr. Shah, Consultant Haematologist at Whittington Hospital London and Psychosocial issues, chaired by Miss. Trenchard, Child Psycologist at the Royal Manchester Children’s Hospital. These workshops were an excellent opportunity, as ever, for patients and family members to ask questions and discuss issues they have been too afraid or never had the chance to ask.
The day was rounded off with a much anticipated tour of the grounds, where our Thalassaemia legends were able tread where footballs legends have been before.

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Workshop

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Patients Group Photo

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A workshop in progress

Letter of Commendation:

NEBATAs 15th Annual Thalassaemia Awareness Conference, 8 June 2013.

img5”The agenda of the meeting was extremely interesting and it gave the opportunity to TIF to understand comprehensively about the new changes on the national health system of the united kingdom, that directly and indirectly affect chronic diseases and in particular the haemoglobinopathies. Our particular interest was to hear about the peer review and the criteria set for reference centres and very importantly concerning the spread of reference centres including networking outside London. In TIF’s opinion lack of networking was the most important weaknesses in the UK health system with regards to the haemoglobinopathies.
Manchester’s efforts have been of great value and on behalf of the board we would like to express admiration for the way Manchester doctors have been promoting services for improving better health and quality of lives of patients with haemoglobin disorders. We would like to congratulate Dr Andrew Will, Mr Peter Mount, Dr Farukh Shah, Miss Sian Trenchard and Dr Kate Ryan for their very enlightening information.
Last but not least TIF has been extremely impressed with the work, devotion and commitment of the NEBATA association and in particular with the Rasul family. Such volunteers and families are those that truly make the difference in the environment of patients with chronic disease. In particular haemoglobinopathy diseases which are multi organ diseases have considerable economic and social repercussions.
Congratulation to all at NEBATA and as we feel that after our visit they gave us the opportunity to really admire the work and commitment that has been shown all these years. Through this very short and brief letter of admiration we would like to reiterate the commitment of TIF for supporting NEBATA in as many ways as possible.”


Dr. Androulla Eleftheriou, Executive Director, TIF

Representing Thalassaemia Patients’ Interests

The Steering group met at Bishopthorpe in York for the last time in February 2014 as with great sadness the Most Reverend and Right Honorary Dr. John Sentamu stood down as chairman of the Steering Committee for the Sickle Cell and Thalassaemia Screening Programme. He will be greatly missed as he brought both excellent governance and a smile to the proceedings. With his help the Progamme has rached great success and his hard work has meant it will continue to grow.

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A fairwell photo with Rev. Dr. Sentamou and the rest of the Sickle Cell and Thalassaemia Screening Programme Steering Committee

Issues discussed at this meeting included the role of the primary care and the general practitioners in the community, where they might offer testing for Sickle Cell and Thalassaemia to new registrants at a GP practices. There was no firm conclusion for this suggestions but will be given due consideration for further development. Further public consultation that included the opportunity to find out carrier status even if only for information was discussed and it was reported that criticism had been received from GPs and other health professionals about inadequate consultation. It was felt that lessons must be learnt about handling these issues with communities that feel at risk and channels of communication maintained between hospital and community health care professionals.

The meeting concluded with planned actions including correspondence with NHS England regarding adult peer review and how specialist commissioning was hoping to make changes around the poor levels of service; this follows the outcome of the Peer Review in 2010 of Children’s Services.

This year TIF held their 4th Pan European conference in Athens, Greece. The epic backdrop of the Pathenon was the perfect setting for a great meeting of associations from around Europe to meet and share ideas and knowledge.
Four members of NEBATA, Mrs. Rasul, Mrs Patel, Amina Sajid and Sajid Hussain were sponsored to attend the conference by TIF for two days and three nights, in Athens. The programme was excellent and a lot was learnt. A great deal of hope was gained for the future of Thalassaemia , such as advances in gene therapy. The NEBATA delegates also took part in the capacity building workshop, which was of great benefit. As a voting member NEBATA was invited to attend the meeting in Athens and we look forward to the next TIF meeting.

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NEBATA delegation to the conference in Athens, Greece

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Panellists at the 4th Pan European in Haemoglobinopathies and Rare Anaemias

The 31st October 2012 marked another milestone in the departments long term development programme for “improvement to the blood transfusion service”.

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The moment the Blood Fridge was opened at the Manchester Royal Infirmary; Left to right Dr. Robert Pearce,Dr. Kate Pendry, Mr. Yameen Rasul, Mrs. Gill Heaton with Senior Nursing Staff.

With an official opening ceremony for the phase 1 blood collection and tracking system. representatives of the trust executive team assembled with members of the hospital transfusion team and the medical and nursing teams on the clinical haematology ward 44 for a ribbon cutting ceremony by one of our long standing patients.
A project team was established in 2010 to consult with over 40 key stakeholders including clinical users, porters and laboratory staff and to prepare the business case for installation of a blood tracking system to provide the electronic recording of blood in and out of fridges through allocated barcodes and pin numbers. The system went live on 6th march 2012 and thanks to a comprehensive communications plan and training programme , involving over 2500 staff, the system has recorded over 890000 collections/transactions from the patient blood fridges serving MRI/ Royal eye hospital, St marks, the RMCH and several other satellite fridges .
On behalf of the trust Mr Bob Pearson , trust executive medical director , acknowledged the hard work of the hospital transfusion team in delivering a system that helps reduce the risk of “wrong blood transfusion” never events by ensuring that the right blood is collected for the right patient .The ceremony was concluded when MRS gill Heaton OBE trust executive director of patient services/ chief nurse awarded the hospital transfusion team with a certificate in recognition of the project in the “ we are proud of you “ awards.

NEBATA Family Fun

“NEBATA recognises that families are an important support structure for Thalassaemia patients. This is why our activities are aimed towards creating environments where patients and families can get together to share experiences, develop new skills and enjoy themselves”.

img14Eight families were treated to a fun filled holiday at Haven Holiday park in the beautiful setting of Presthaven, Wales. With summer coming to an end, patients and their families enjoyed a sun filled retreat, with seven different kinds of swimming pools, a beautiful beach, outdoor activities and art and crafts. The group consisted of eleven patients, nine siblings and seventeen adults and careres, who took part in all of the activities and most importantly were able to bond, relax and take pleasure in the surroundings and the company of other Thalassaemia families from across Greater Manchester.

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Sahad Ul Hassan and Amina Sajid, at the special birthday lunch

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Everyone enjoying the lunch party

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Everyone enjoying the party atmosphere

img18The excitement and party atmosphere was increased by the birthday celebrations of Amina Sajid, who turned 18 years old and Sahad Ul Hasan, who was ten years old. NEBATA arranged for the birthday boy and girl and the rest of the group, a special evening meal and birthday cakes.
This was a lovely end to a fabulous care-free weekend at the brilliant caravan park. NEBATA’s aim was to give patients an opportunity to forget about their hard treatment for a short while and enjoy a special time with their friends and family. From the feedback received we are happy to report this was certainly the case.

To get the new year off with a bang NEBATA organised a late Eid party lunch/ AGM meeting for the thalassemia children and their families . The party was very kindly catered for by my lahore, who provided a delicious two course lunch including three starters as a donation to the charity for the party. Mylahore were excellent in their service and the quality of food was brilliant.

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After lunch the games began. There was pin the tail on the camel which left everyone in a spin. Teams were then formed to battle it out for the title of balloon ball champions; independent adjudication informs me team A won although everyone got a fair share of the chocolate. To finish off the fun afternoon at the Sickle cell and Thalassaemia centre a parcel was passed to many a tune to finally reveal a Terrys Chocolate Orange n the centre of the parcel .While the children had fun the parents attended NEBATA Annual general meeting (AGM).

There was a great turn out for the AGM, where we discussed the annual awareness conference and other activities from 2013/2014, the accounts were presented, approved and seconded and future projects were discussed. Three new committee members were also elected during the meeting including mrs shazia khan, dr shruthi narayan and mrs aqila masoood . These are the new elected members, however the other members of the committee remains the same.