Thalassaemia Awareness and Support Group (TASG) Project Report April 2011 SUPPORTED BY OSCAR SANDWELL FUNDED BY Page 1 of 9
This is a 2 year project of TASG and the time scale of this report is the first 6 th month period of the project, November 2010 to April 2011. TASG is a patient-led support group. Thalassaemia patients came together to setup this support group to help people like themselves that need support as they believed that not much support it out there for Thalassaemia patients. TASG has setup a database that combines adults and children from Birmingham, Sandwell and from surrounding areas. AIMS OF THE PROJECT: Reduction in patient s isolation through home, treatment centre and hospital visits and activities within the community. Patients will gain new skills through various training programmes/sessions designed to empower individuals to manage their health condition and wellbeing. (Programmes such as Staying Positive which is designed for young children with a health condition from the age of 12 18 years old) Empower the patients to champion the cause of Thalassaemia to raise awareness about the condition within the community and general public. DELIVERY OF THE PROJECT YEAR 2010 November Eid & Diwali Thal Hungama OSCAR Sandwell and the members of TASG held the Eid and Diwali event to raise awareness about Thalassaemia to the wider Asian community and to make young Thalassaemia patients and their families aware of that there is a support group out there for them. This event was aimed to create a social gathering between the community and the young Thalassaemia patients including their families as to break social isolation which they face every day of their lives and by joining in to celebrate Eid and Diwali it would create an overwhelming atmosphere. Abdul Alim, Community Champion started the event by welcoming everyone and wishing everyone Happy Eid and Diwali as the event was to celebrate these two events together with the Thalassaemia patients and the community. TASG did a presentation about What Thalassaemia is and TASG s role. TASG spoke about the effects on an individual and their family also how it is passed on. Abdul, Community Champion and then raised the profile of TASG (Thalassaemia Awareness and Support Group) a short insight was given to why this group was established and the overall aims which TASG will thrive to achieve. After the presentation questions were asked and answered. People were happy to know about Thalassaemia as it was an eye opener for them. Lunch was served to everyone. People enjoyed the food and watched a marvelous performance by a dance group company called Nachda Saansar. Young children from the ages of 6 to 11 did a routine Asian dance with instruments called Dhol. We had an attendance of over 50 people including adults, young children and Thalassaemia patients. Page 2 of 9
December - Recruitment Planning In December TASG and OSCAR Sandwell started planning the recruitment process to employ 2 Sessional workers. We planned to advertise the posts at the hospitals where Thalassaemia patients get treated as we were looking to employ people with Thalassaemia, carers or someone that lives with them and understands what they go through. YEAR 2011 January - Recruitment During the end of January TASG and OSCAR Sandwell held the interviews. There were 4 members that sat on the interview panel, 2 members from TASG, and one member each from OSCAR Sandwell and OSCAR Birmingham. Lunch was provided for the panel members. We interviewed 3 people from whom were 2 patients and a carer. After the interviews the panel discussed and decided on employing 1 of the patient and the carer. They were all sent letters of the panel s decision. Hara Lioliou and Afia Begum, Sessional Workers started working in February 2011. They both had an introductory week where we explained and went through our policies with them, introducing them to staff members and local organisations that we work with. They were also taken to meet the staff and patients at the Haemoglobinopathy Unit, Birmingham Children s Hospital and SCaT Centre, City Hospital where Thalassaemia and Sickle Cell patients are treated. Sessional Workers: AFIA and HARA Page 3 of 9
January Awareness Session At Shakti Day Centre and Apna Ghar Day Care TASG did an awareness session at these two Day Care Centres with males and females. The awareness session was delivered in different languages, which included: Urdu, Punjabi, Gujarati, Hindi and Bengali. The older people were very interested in the subject of Thalassaemia as it was the first time they had heard about it. They had plenty of questions which we answered and also requested them to inform their family about this blood condition and they all agreed that they will raise the topic with their family and friends. They were happy to learn something new. In total we spoke to 35 old aged people from both of the Day Care Centres. February Birmingham Play Care Networks Workshop TASG attended this event to promote and work in partnership with other out of school settings and organisations. The aim of the event was to: Identify and network with settings and supporting organisations across Birmingham To understand the importance of networking To explore the barriers and benefits of partnership working For settings to share their knowledge and experiences TASG were able to network with different organisations and promote the services that we provide and raise awareness about Thalassaemia which a lot of the population are not aware of. We were able to take an interactive part in the event by talking to the general public that were attending the event with their children and were also able to take part in different workshops. The workshops consisted of 6 groups and all groups had different case scenario s relating to different circumstances of children. Each organisations representative had to say how their organisation could help solve the situation of the child. At the end of the group discussions everyone came back together and gave a feedback of the ideas. This was a way of learning more about each of the organisations that were at the event and how their services could help and support a young child. February Awareness Session at Malling Health Surgery GPs and Clinicians TASG & OSCAR Sandwell were able educate GP s and clinicians from West Bromwich. We went through the inheritance pattern on how a child gets Sickle Cell or Thalassaemia and how it affects them on a daily basis. Also the medications and treatments they require. The GP s requested a supply of information on Sickle and Thalassaemia so they can display it at their surgery for the general public to read about. They all found the awareness session very useful and informative. February Adolescent Transition Day at SCAT Centre TASG and OSCAR Sandwell were invited to give a talk at SCAT Centre during a transitional visit by the young teenagers from Birmingham Children s Hospital and the staff from the children s unit. Speeches were given by different organisations which included OSCAR Sandwell, OSCAR Birmingham, TASG and Sickle Cell and Thalassaemia Screening Service. There were also personal testimonies by Sickle Cell and Thalassaemia patients that use the services at SCAT Centre. The young patients were given a tour around the centre and the main hospital. They were familiarised to where different departments are as they would sometimes use their facilities. We visited the X-Ray department, Diabetes section and they were taken to the pharmacy as they will be collecting their medication by themselves. This was quite empowering for them as moving to the adult centre would mean more responsibility for them. Page 4 of 9
The youngsters found the day very well conducted and informative. They were able to ask questions. They were all looking forward to moving to the adult unit. Young Sickle Cell patients spoke about his experiences March Awareness Session with Elaine Bennet at SCAT Centre TASG was invited by SCAT Centre to give a talk to Elaine Bennett about what Thalassaemia is and what services TASG provides. Elaine Bennett is a Birmingham resident and has been donating to Sickle Cell and Thalassaemia organisations for years and recently found out about SCAT Centre and decided to kindly donate to them. She was delighted to meet TASG and learn more about how we support young and adult Thalassaemia patients and the way we raise awareness about Thalassaemia. Elaine is part of a community group in Birmingham and every year they organise a Community Christmas party where they fund raise. She said that she would invite SCAT Centre and TASG to take part in the Christmas event this year. March TASG and PNSG (Patient Network Support Group) at The National Haemoglobinopathies Project Seminar TASG registered to attend a seminar held in the Methodist International Centre (MIC), 81 103 Euston Road, London NW1 2EZ. This seminar aimed to meet Sickle Cell and Thalassaemia patients, carers and voluntary organisations that support Sickle Cell and Thalassaemia patients. The seminar was held by two Haematologists to get views from everyone on what services are important to them and why. The reason they held this seminar is due to the government cutting back on a lot of departments in the NHS and the fear is that the Haemoglobinopathy departments might get affected by this. By speaking to patients and carers they wanted to get information which would help them to demonstrate to commissioners the importance of these services for the patients and what difficulties young and adult patients would go through without these services. People came from all over the UK. There were Sickle Cell patients and carers from Leeds, Nottingham, Coventry and Birmingham and also Thalassaemia patients from Kent, London, Manchester and also Birmingham. Everyone had different experiences, some had good and some not that good. Page 5 of 9
April Meeting with Professors at De Montfort University Abdul attended a meeting with Professor Simon Dyson two of his colleagues at De Montfort University. The meeting was to discuss ways to look at how the university could work with TASG and OSCAR Sandwell to carry out a research to look into transitional and the issues that come from the process where a Thalassaemia patient is being transferred from the children s department into the adults unit. OSCAR Sandwell and De Montfort University have worked together in the past and have a good working relation together. We discussed ways of collecting information about transition, from patients that are going to be in the transitional process and those have gone through it in the past 5 years. We also looked at ways how we could apply for research funding as it s going to be setup as a pilot scheme first. It can be a very anxious time moving from children to adult services, a whole new department and becoming grown-up taking more responsibility for their appointments and medications. A lot was discussed on behalf of TASG s younger Thalassaemia patients as we have seen in the previous years and currently what young patients have to go through when transferring to a different department, away from the children s. It has a great effect to them as it s a whole new environment that they move into and more responsibility they have to take. TASG has been involved in an Adolescent Transition Day at the SCAT Centre where we introduced and welcomed new transitional patients and allowed them to ask questions regarding TASG and OSCAR Sandwell s services and involvement with patients like themselves. April - Awareness Session at SADWICA Day Nursery TASG held an awareness session with the staff at SADWICA Day Nursery. They were very pleased to learn about Thalassaemia as they have never heard of it before but one staff member mentioned that she was a carrier of Thalassaemia but did not know much about it and how it affects a child living with this condition. They have asked if TASG could come back to do another awareness session when they have students that are on placement and if we could talk about Sickle Cell as well. TASG agreed to come back in the future with OSCAR Sandwell to talk about both Sickle Cell and Thalassaemia. Page 6 of 9
April Fun Day Out at the ThinkTank, Birmingham We had a set programme for the day (the programme is attached with this report) which we adhered to. Everyone met up together and they were put into groups of two which separated the younger children and teenagers from each other as we had different activities to cater for both groups. We also named 2 of the groups. The younger children s group was called Lil Champs and the teenagers were Teen Champs. The children liked the group name idea as it resembled them in a way. We started the children s activities on time. Teen Champs first activity was a training which was delivered by Sandie Granville from Birmingham. She tried to keep the training simple as it was a taster session to see how the teenagers interacted with her. They brainstormed on a chosen role model and what makes that person their role models. The teenager s parents and carers also were getting involved in the session as it gave them a chance to work with the children as a team and help them build up their confidence. After the session finished the children were looking happy and they all thanked Sandie for her hard work. During the day they filled in an evaluation form which asked them to state if they found the session Good, Ok or Hard. Majority of the children that filled in the forms said that the session was good and they liked it as it was something new which they have not done before. We also asked them if they would like something similar next time and they all said yes by raising their hands. The Lil Champs went into a workshop where they were taught how to control a robot with the computer. They were shown different buttons which had different functions for the robot. During their workshop a trainer spoke to them about health and safety. She asked questions around health and safety and all the children interacted with her well. During lunchtime the children were talking about the activities that they carried out and were also looking forward to for the next part of the day. Page 7 of 9
During the second part of the day the Lil Champs made posters on what they like doing at home, school and hospital. This activity was very strong and engaging for them as they visualised what the reality is for them and then they portrayed it onto the paper by using coloured pencils. We arranged the children to get a family picture which they were able to take home and remember their good time from this event. The last session of the day was a discussion with all the children. We spoke about what they need to do in order to keep well and active. They came up with a lot of different answers such as eating well, exercising, taking medications on time and sleeping enough. We were able to see that these children are becoming more knowledgeable and soon will be able to take care of themselves generally and in relation with their condition. They all received a TASG goody bag at the end of the day. All the children and their parents enjoyed the day and were looking forward to the next event. OUTCOMES SO FAR TASG have been visiting young Thalassaemia patients at home and hospital making regular weekly visits. Some visits have been general and others have been in terms of supporting them with different problems. The parents have said that without TASG and OSCAR Sandwell they would not have known any other places to get help from. Our clients value our service and we value and give them priority. This project has been able to achieve some of it aims as to reduce social isolation. A lot of the young Thalassaemia patients do not get out of the house often as they feel that people would not want to play and talk to them due to their condition. Young Thalassaemics isolation is compounded by their condition and their inability to talk about how they feel. Their capacity for achieving is now less than their peer group. They just need the motivation and enthusiasm, practical support with their medication. Throughout our hospital and home visits we tell the young children to aim high and not to look down as they have got a long way to go. We also encourage them to attain their aspirations and in order to do that they have to be well and to be well they have to take their medications regularly. Some patients do not comply with their medications and become unwell and start missing out from school and social activities. Page 8 of 9
We have started completing the base line survey with the parents and we will be working close with them to find out what work needs to be done with them. Some parents are open and others are quite closed but it will take time and good effort work with them. We have been able to raise awareness about Thalassaemia to over 400 people that come from Birmingham, Sandwell and from the surrounding areas. These first six months of the project through our activities such as awareness sessions and local events have enabled us to reduce patients and carers isolation. Our regular one to one visits within patients homes have allowed us to build up a strong relationship which will help us to engage with them in the future of the project. Patients have begun to gain new skills through the empowerment workshop that took place in April. Young Thalassaemic and their carers have been given information about training opportunities such as Staying Positive programme and Expert Patients Programme. We are in discussion with Sickle Cell and Thalassaemia Centre, City Hospital Birmingham to put together a tailored training package for the young Thalassaemia and Sickle Cell patients who will undertake the transitional process from children s services to adult services. This training will empower them to better manage their health condition and general wellbeing. In the next six months we feel the Thalassaemia patients will have gained the confidence to champion the cause of Thalassaemia and raise awareness within the community and the general public. We will interview patients to get their experiences of living with Thalassaemia. We will take these testimonials and promote these in newsletters, Facebook, OSCAR Sandwell s website, YouTube, TASG publicity, at OSCAR Sandwell, OSCAR Birmingham and TASG events, etc. We believe these first six months have been very busy and positive and we expect this to continue over the next six months of the project. Report by Abdul Alim Community Champion Page 9 of 9