C/O Retas The Roundhay Road Resource Centre 233-237 Roundhay Road Harehills Leeds, LS8 4HS Tel.: 07856978722 Email.:sicklecellyorkshireasyabi@yahoo.fr Website: www.asyabi.co.uk Registered Charity Number 1148075 BUSINESS PLAN 2013-2016 Association name: Association of Sickle Cell sufferers of Yorkshire for Africa and Basic Information or ASYABI Main Project Title: Project Review to Strengthen Sickle Cell awareness in the Yorkshire areas and to support service users (patients and their families). ASYABI Board & Trustees: Mr. Olivier Mmounda Chair Mrs. Doris Mbarga Secretary Mrs. Emilia Mbunue Treasurer Scientific Adviser: Dr. Asa ah Nkohkwo, FRSPH Technical Adviser Legal Advisers: Mr. Jan Doerfel Barrister Dr. Hani Zubeidi Lawyer Executive Directors: Business address: ASYABI c/o Retas Leeds The Roundhay Road Ressource Centre 233-237 Harehills Leeds LS8 4HS Mr. Olivier Mmounda - Project Manager & CEO 1
DESCRIPTION OF BUSINESS / PROJECT Project title: Project Review to Strengthen Sickle Cell awareness in the Yorkshire areas and to support service users (patients and their families). The Association of Sickle Cell sufferers of Yorkshire for Africa and Basic Information (ASYABI) was funded in Leeds in June 2008. It is a registered charity led by volunteers and people affected by Sickle Cell Anaemia and Thalassaemia aiming to provide self-support and information, advice and other helps needed to people and their families affected by sickle cell and thalassaemia. Support and advice is provided by telephone, email and through home visits. ASYABI work with the support from Health Care professionals to ensure that individuals with sickle cell and thalassaemia get the optimum service from health, education or social care. Since 2009, our self-help patient group also known as ASYABI, has been able to provide conferences, leaflets, etc. on this issue to raise awareness of sickle cell disorder in Leeds and Yorkshire. Since the end of 2008, we have been offering annual public conferences on this condition to encourage the change of perception by sharing experiences for a selfbelieve to improve their live. Our work includes visiting other suffers who suffer from social exclusion and the added stigma attached to our chronic and incurable illness. This project is an expansion of our current services, for the past four years ASYABI work has been supported by volunteers with different capacity and skills who are still acting as Trustees, volunteers and this work was supported by other advanced charities in the field such as: The Sickle Cell Society in London, Oscar Sandwell in West Bromwich, Oscar in Birmingham, the Patients Network Support Group, the Haematology Clinic now in St James Hospital where adults with this condition meet regularly their Haematologists Consultant doctors. All these charitable and public bodies and organizations were supporting our work campaigns of raising awareness across Leeds and Yorkshire by promoting and distributing our leaflets and posters on our social events. We are well known nationwide and this led us recently to enter into a formal partnership with some doctors from York University about their research which mainly involved those who are carriers of the sickle cell gene and parents who for the past three years have had a child with sickle cell or thalassaemia. Some representatives of these organizations will support this proposal on Advisory Capacity. Sickle Cell Anaemia is a genetic illness of the blood which is hereditary but it is not contagious. Sickle Cell is the result of the abnormal haemoglobin (HB) calls HBS. Usually children and adults who are affected like us suffer from pain in the muscles and bones when they have an attack generally calls (Sickle Cell crisis). ASYABI has found out, through our own research, the following number of patients in Yorkshire and surrounding areas: St James's University Hospital, Leeds has 95 patients (adults), Bradford, 20 patients, Manchester Royal Infirmary, 267 patients (adults), Manchester Childrens Hospital, 213 patients (children), Nottingham University Hospitals, 85 patients, Homerton Hospital, 80 patients, Sheffield Teaching Hospitals, 75 patients (adults), Sheffield Childrens Hospital, 63 patients (children) 2
According to NHS sources (http://www.nhr.nhs.uk/pdflinks.aspx), there are more than 200 patients in the Yorkshire area which may suffer from Sickle Cell and associated illnesses which this project will target for support. In link to the current ongoing statistics provided by the National Haemoglobinopathy Registry (NHR), more than 200 patients from the Yorkshire area will directly benefit from this project. Please note that 95 patients (adults) from this figure are based in Leeds. According to the ongoing data of the NHR, the current estimation of patients with sickle cell in the UK is 5,457. However, this data is below the standard figures provided previously by the largest voluntary group in the field known as the Sickle Cell society who suggests that there 14,000 to 15,000 of sufferers with this condition in the UK but in connection to the higher stigma associated to this common and painful genetic condition, a very fewer of patients are giving their consent to be registered in the government data base. All charities in the field are now taking this issue as a matter of emergency. According to the Sickle Cell Society based in London. Facts in the UK: There are more than 14,000 of Sickle Cell sufferers in the UK. 240, 000 people are carriers of the Sickle Cell gene. 300 babies are born annually with Sickle Cell Anaemia or Disorder (SCD). Each year hundreds of children & adults will be left disabled or chronically sick. Hundreds will spend months in hospital or isolated at home. See more at: http://www.sicklecellsociety.org Worldwide statistics, according to Dr Williams from Oxford University, 80% of cases are in Africa with 200,000 new born every year. Dr Jemima Dennis-Antwi, Regional Advisor (Anglophone Africa), International Confederation of Midwives, if nothing is done by 2020, the number of new born with this condition in Africa will be increasing by 400,000 every year. This condition affects many countries across the world (1 in 4 West-Africa and 1 in 10 Afro- Caribbeans, and is also found in people who originate from the Mediterranean, Asia and the Middle East. It is less common in Caucasians). PROJECT AIMS AND OBJECTIVES 1- To promote the relief of people suffering from sickle cell and thalassaemia disorders. 2- To advance education of the public in order to increase knowledge and understanding of sickle cell and thalassaemia disorders 3- To promote research into the nature, prevalence treatment and the prevention of sickle cell and thalassaemia disorders and disseminate and publish the useful results thereof. 3
Objectives and Powers: 1- Collaborate with other associations, public and private health system infrastructures in the United Kingdom and Europe that are fighting against Sickle cell and endemic and non-endemic illnesses through the exchange of information, symposia and conferences. 2- Develop partnerships with other public and private organizations in the United Kingdom to reach and fulfil our objectives. To help other Sickle cell projects and associations in Africa and in other developing countries. 3- To raise funds and to invite and receive contributions provided that in raising funds the Committee shall not undertake any substantial permanent trading activities; 4- To employ such staff (who shall not be members of the Committee) as are necessary for the proper pursuit of the aims of the Group as above; 5- To co-operate with other voluntary and community based organisations and authorities and agencies operating in furtherance of the aims of the group or of similar charitable purposes and to exchange information and advice with them; 6- To establish or support any charitable trusts, associations or institutions formed for all or any of the aims as above; 7- To acquire property and equipment; 8- To draw up any rules, policies or standing orders for the effective running of the Group. 9- To do all other such lawful things as are necessary for the achievement of the aims as above. Project Plan & Measurable: 1- Every three months a report on the progress of the project will be sent to our main funders and take part to any scheduled meetings organized by them when we are invited. 2- Annuals reports will be made. 3- Regular meetings of assessment and recommendations for improvement will be hosting every Friday by the project manager and his staff. 4- Other meetings, seminars of consultations with our service users (patients, families, close relatives and volunteers) will be available every two to three months about the long run project and what impact it has on them. 4
5- Involving when necessary other organizations in the field etc. in our meetings, seminars, conferences for experience exchanges. 6- Other meetings on some researches on how our proposal can be effective in other parts of the UK will be hosting every three months in collaboration with other organizations in cities like London, Birmingham, Manchester etc. to find out how they can also benefit from our services. 7- A strict supervision on the spending for specific project will be regularly reviewed by a professional accounting or a firm. ASYABI Agenda and Achievements 2008-2012: 1- Public awareness through talks at: Schools, Churches, Community events and distribution of leaflets etc. with the support of St. Bartholomew s Church in Armley, Leeds. 2- Informative Public Conference for the sickle cell awareness in November 2009 at St. Bartholomew s Church in Armley in Leeds. 3- An Annual Public Conference 2010 of Sickle Cell Awareness hosted at St. Aidan s Parish Hall. 4- Saturday 20 th August 2011, a public conference on Sickle Cell Anaemia has been held in Leeds (see a report linked to it in our website above). 5- On Saturday 25 th of August 2012, A Special Evening of Sickle Cell Awareness among Minority Groups and Yorkshire Population was organized with an audience coming from across the UK! 6- From the end of April 2013 Reaching Marginal Communities with Sickle Cell for a Change of Perception. 7- On Saturday 27 th of July 2013 ASYABI Sickle Cell & Thalassaemia Exchanges in Leeds. 8- New and innovative prospective from September 2013, launching of the long run project titled Project Review to Strengthen Sickle Cell awareness in the Yorkshire areas and to support service users (patients and their families). This proposal will support in the social aspect those who are affected by sickle cell in the Yorkshire to fight against the stigma that children with this long life condition face within their communities. In the UK less than 1,000 of patients are directly involved to sickle cell events because they do not want to present themselves as sufferers. It is linked to our repeated crisis we start to have from the childhood and held us to feel different from others. Through my long run experience both as a sufferer and campaigner, I will be inspiring them for a change of perception. More information about ASYABI achievements can be found on: www.asyabi.co.uk 5
Realistic: Supporting in the social aspect those who are affected by sickle cell in the Yorkshire to fight against the stigma that children with this long life condition face within their communities by providing information, advice and support to families and individuals affected by sickle cell and thalassaemia, by telephone, email and through home visits. Work with professionals to ensure that individuals with sickle cell and thalassaemia get the optimum service from health, education or social care. This painful and chronic genetic condition that thousands of children and adults affected by sickle cell like us suffer held them to feel different from other children; as a result of this social exclusion, across the UK despite the fact there are more 14,000 of sufferers but less than 500 of patients with this illness take part to social events, conferences and seminars on their own condition! Our proposal will help them for a change of perception and self-believe. Our motivation of setting this proposal is also based on the fact that; after Dr. Asa ah Nkohkwo, Nationwide Adviser on Comprehensive Care for Sickle Cell and Formerly CEO of the Sickle Cell Society in London has attended one of our conferences in November 2009, he was sufficiently impressed to express the view that our organisation could be considered for a role in linking people living with sickle cell to local health commissioners in the Yorkshire. He is currently seconded to the Department of Health to work on Comprehensive Care Strategy for people living with sickle cell disease in the UK. He is currently one of the Technical Advisers of ASYABI due to his long run experience as he had been for seven years the Chief Executive of the Sickle Cell Society in London. Based on his experience and skills on management, he provides in a voluntary capacity free advice and assistance to the ASYABI Board and has therefore, be given the role of Scientific Adviser of ASYABI. His experience and skills are very useful and helpful for the implementation of our goals. Targeted as to time: Providing information, advice and support to families and individuals affected by sickle cell and thalassaemia in Yorkshire and nationwide experience exchange, by telephone, email and through home visits. Work with professionals to ensure that individuals with sickle cell and thalassaemia get the optimum service from health, education or social care and raising awareness of this condition mainly focused on the Yorkshire population including other parts of the UK. Through this project, in the next three years, we expect to bring a huge change of perception from those who suffer of this condition in the Yorkshire and in the UK. However, this proposal will be reviewed annually by the ASYABI board and Trustees for new updates and improvement. Risk Assessment 1- Funds will be used for rent of premises, purchasing office equipments and other related material for the project to be launched in 2013 on the bursary or voluntary capacity of the ASYABI Trustees especially those with the required skills prior to employ professional individual with the right skill and experience as shown in the staffing structure plan. 2- Not sharing our methodology or approach with other similar advanced organizations or charities in the field may limit our vision and services for our clients or services users. 6
3- Failing to report progress or activities pending to local commissioners / stakeholders can jeopardize our further applications for funding. 4- Not consulting or involving volunteers and service users during the process or from the beginning of this proposal will highly jeopardize the proposal and we must therefore abide in accordance to the project plan and measurable. 5- Not providing annual reports may greatly be a failure of the project because we will not how to assess the project and where improvement will need to be done. 6- Prioritizing our needs step by step in order to secure from time to time our whole budget and future year s funds can widely affect the whole proposal so, we must made as much applications as we can in order to multiply our funds opportunities. 7- As highlighted above, ASYABI has the great privilege to benefit of the huge support and advice of the former Chief Executive of the Sickle Cell Society, Dr. Asa ah Nkohkwo, FRSPH, who is currently a scientific Adviser of ASYABI and his huge experience on the management greatly help the group to structure and assessing from time to time and step by step the current and future challenges that our marginal cause may face in order to be fully prepared to deal with them. 8- Finally, in order to keep our funders trust, any fund allocated to this proposal is directly paid in the ASYABI s main bank account in which according to our rules or governing document at least two trustees must sign for any withdrawal of funds. Funds given for this proposal will be managed by at least two members of ASYABI staff and their work will be regular reviewed and assessed by the ASYABI s Trustees after thorough accounts given by the Chief Executive (CEO) of this project to the Trustees board. All cheques, donations and grants are made payable to ASYABI UK or paid directly into our community bank account. FUNDING REQUIREMENTS Main Source of Funds Amount Applied For Pfizer Foundation 30,000 Other sources 27,530 Offered See enclosed full break-down budget of this proposal for the year starts 2013-14 Total Expenditure Cost Year starts 2013-14 57,530 7