Education for Minority Ethnic Pupils: Young People with Sickle Cell Disease

Lead Research Organisation: De Montfort University
Department Name: School of Allied Health Sciences

Abstract

Abstracts are not currently available in GtR for all funded research. This is normally because the abstract was not required at the time of proposal submission, but may be because it included sensitive information such as personal details.

Publications

10 25 50
 
Title Sikul Sel Song (Song about Sickle Cell in Schools in Sierra Leone) 
Description During a visit to Sierra Leone, Dr Maria Berghs of De Montfort University worked with the Sierra Leonean Sickle Cell Society. Whilst adapting our Guide to School Policy to produce a Sierra Leone Version, a local person Sam Macauley was inspired to write a sickle cell song based on the content. It was later professionally produced and recorded with the voices of Freetown school children. It has been released as an open education resource (CC-BY-SA). http://www.sicklecellanaemia.org/news/sikul-sel-song-by-pupils-from-a-sierra-leone-school/ https://soundcloud.com/viv-rolfe/sikul-sel-song-sierra-leone 
Type Of Art Performance (Music, Dance, Drama, etc) 
Year Produced 2018 
Impact Played to radio audience of over 1 million by Eastern Community Radio (Eastern Radio) in Kono, Sierra Leone. 
URL http://www.sicklecellanaemia.org/news/sikul-sel-song-by-pupils-from-a-sierra-leone-school/
 
Description Sickle cell disorder (SCD) is a serious chronic illness that, in the UK, mainly affects minority ethnic groups. The project found that most local authorities did not know numbers of young people with SCD in their area. Less than half schools with a young person with SCD were complying with government guidance that all such children should have individual health care plans. Only two local authorities had specific had policies on SCD and most authorities referred to generic guidance on pupils with medical needs. However the current generic guidance does not address preventive health, and fails to challenge disability discrimination.The generic guidance covers providing medicines to pupils with medical conditions, but only one-quarter of young people with SCD reported having access to pain medication at school when needed.

Young people with SCD miss considerable time from school, on average 16 days a year, a level that exceeds the 15 days beyond which schools and local authorities have a statutory duty to make alternative arrangements. However the episodic nature of the school absences, typically in short periods of 2-3 days, meant that a narrow interpretation of the guidance (15 days "in a row") was being used. This leads to young people with SCD being unsupported.The majority of students with SCD reported that they are not helped to catch up their missed schooling. Half the children reported not being allowed to use the toilet when needed and not being allowed water in class; a third reported being made to take unsuitable exercise and being labelled lazy when tired from the severe anaemia associated with their SCD. Schools were therefore failing to take simple precautions that would enable young people with SCD to remain well at school.

Whether or not teachers know that the student has SCD makes no significant difference to reported negative experiences at school. Most young people with SCD favour disclosure to teachers, because they hope teachers will know what actions to take if they become ill and will make allowances for school absences. Some disagreed, citing instances of attracting unwarranted attention or of experiencing disabling attitudes. Attitudes to disclosing to peers were ambivalent between acknowledging the reality of their sickle cell, and not wanting it to be a central part of their identity. A change in wider school environments is required so that young people with SCD are supported irrespective of whether or not they want to speak out about their sickle cell.

Young people with SCD are found to be regularly and awkwardly positioned between the demands of their doctors, who advised on how they could remain well through self-care and taking appropriate precautions, and the practices of the school with its emphases on routines and consistent attendance. Even where good practice is in evidence in schools, the school concerned tends to address just one aspect of sickle cell in isolation and this is not consolidated into comprehensive school policies. A model school policy has therefore been produced by the project (available at: www.sicklecelleducation.com).
Exploitation Route The Guide to School Policy could be used by schools in implementing the 2014 Children and Families Act that requires governing bodies and schools to make provision for children with medical conditions.
Sectors Communities and Social Services/Policy,Education,Healthcare

URL http://www.sicklecelleducation.com
 
Description The project has improved the visibility of sickle cell disorders (SCD) within the policy process. It has been used as the main evidence in an All Party Parliamentary Group report on sickle cell and thalassaemia at the House of Commons. It has informed the production of leaflets for use by teachers and peers in schools to help young people with sickle cell, leaflets produced by young people living with SCD: My Pupil has Sickle Cell Disease: What do I Need to Know? and My Friend has Sickle Cell Disease: What do I Need to Know? The project has influenced policy on managing young people with medical conditions in schools. A policy guide Sickle Cell and Thalassaemia: Health and Safety in Schools: A Guide to School Policy was adopted by the Department for Children, Schools and Families. In early 2011 it was placed on the Department for Education website for teachers supporting children with medical conditions in schools. It was removed in late 2013. In 2016 a Second Edition of the Guide to School Policy on Sickle Cell: Education, Health and Care was produced. This reflected Section 100 of the 2014 Children and Families Act requiring school governors or academies to ensure children with medical conditions had an individual education, health and care plan. This revised guide was sent to 1000 secondary schools by the Sickle Cell Society and formed the basis of evidence given by the Health Conditions in Schools Alliance (convened by Diabetes UK) to a joint meeting of the APPG for Diabetes and APPG for Asthma in May 2017. The project has supported the advocacy work of a number of stakeholders. The policy guide (using Creative Commons Copyright, making the guide an open education resource that is free to copy and to adapt) has specifically supported the work of individual mothers of young people with SCD, and sickle cell voluntary support groups in Wolverhampton, Sandwell, Birmingham, and London. It has supported the work of specialist nurses in Newham, Sheffield, Northampton, Newcastle and Leicester, and the work of a consultant paediatrician in East London. The policy guide has influenced international stakeholders, being referenced in a Centers for Disease Control and Prevention Guide; prompting the Toronto District School Board to develop a policy on children with medical conditions in school; and prompting cultural impact through the use of the Sierra Leonean version of the guide to school policy in writing of a popular song played on community radio in Sierra Leone (Sikul Sel Song https://soundcloud.com/viv-rolfe/sikul-sel-song-sierra-leone).
First Year Of Impact 2014
Sector Communities and Social Services/Policy,Education,Healthcare,Government, Democracy and Justice
Impact Types Cultural,Societal,Policy & public services

 
Description All Party Parliamentary Group Diabetes (Health Conditions at School Alliance)
Geographic Reach National 
Policy Influence Type Participation in a advisory committee
URL https://twitter.com/APPG_Diabetes/status/836996334993489922
 
Description All Party Parliamentary Group on Sickle Cell and Thalassaemia_Advice to Department for Education Civil Servant
Geographic Reach National 
Policy Influence Type Participation in advisory committee
 
Description All Party Parliamentary Group on Sickle Cell_Advice_2009
Geographic Reach National 
Policy Influence Type Participation in advisory committee
URL http://www.dmu.ac.uk/documents/health-and-life-sciences-documents/sickle-cell/appgreportmarch2009.pd...
 
Description BBC Radio 4 Sickle Cell Appeal_Malorie Blackman_2016
Geographic Reach National 
Policy Influence Type Implementation circular/rapid advice/letter to e.g. Ministry of Health
Impact Malorie Blackman (former Children's Laureate) appeals on BBC Radio 4 on behalf of the Sickle Cell Society (the major NGO supporting sickle cell in the UK). In it she refers to a mother (Jacqueline) of a child with sickle cell, who finds a "helpful Guide to School Policy on sickle cell" to use for teachers. This refers to the DMU research-led Guide to School Policy on Sickle Cell arising form the ESRC project on sickle cell in schools.
URL http://bobnational.net/record/418074
 
Description Member House of Lords_Sickle Cell in Schools Policy Advice
Geographic Reach National 
Policy Influence Type Participation in advisory committee
Impact Response to a request from the Sickle Cell Society and Baroness Benjamin (a Sickle Cell Society Patron) for a briefing on sickle cell in schools to contribute to a House of Lords debate on the Children and Families Bill. Lord Boateng had secured a two and a half hour debate in the Lords to discuss Scope's 'Overlooked Communities' report which detailed the difficulties disabled people from black and minority ethnic backgrounds face in accessing the support they need. The debate took place on Thursday 10th January.
 
Description Parliamentary Health Committee (under Kevin Barron, MP)
Geographic Reach National 
Policy Influence Type Participation in advisory committee
 
Description Student Health Support Policy - Policy Development
Geographic Reach North America 
Policy Influence Type Citation in other policy documents
 
Description Toronto District School Board Minutes_2017
Geographic Reach North America 
Policy Influence Type Citation in other policy documents
URL http://www.tdsb.on.ca/Leadership/Boardroom/AgendaMinutes.aspx?Type=M&Year=2017&Filename=170208+Summ....
 
Description Higher Education Innovation Fund
Amount £26,434 (GBP)
Organisation Higher Education Funding Council for England 
Sector Public
Country United Kingdom
Start 10/2011 
End 07/2015
 
Title A Sierra Leonean Approach to Sickle Cell and School Inclusion. 
Description Adaptation of the Guide to School Policy on Sickle Cell by the Sierra Leonean Sickle Cell Society. The resulting document is entitled: A Sierra Leonean Approach to Sickle Cell and School Inclusion. 
IP Reference  
Protection Copyrighted (e.g. software)
Year Protection Granted 2017
Licensed Yes
Impact Used by the Sierra Leonean Sickle Cell Society in their campaigning, education and advocacy work
 
Title Guide to School Policy on Sickle Cell (Second Edition) 
Description Second edition of the Guide to School Policy on Sickle Cell (Copyrighted CC-BY-SA 4.0) adapted to reflect the requirement of the Children and Families Act 2014 for children with medical conditions to have an education, health and care plan. 
IP Reference  
Protection Copyrighted (e.g. software)
Year Protection Granted 2016
Licensed No
Impact Used by Sickle Cell Society (NGO)
 
Title Guide to School Policy_v1.1_UK 
Description A Guide to School Policy on supporting young people with sickle cell disorders at school. The guide has been produced as an open education resource using Creative Commons Copyright CC-BY-SA 
IP Reference  
Protection Copyrighted (e.g. software)
Year Protection Granted 2011
Licensed Yes
Impact This has been adpated for use under the CC-BY-SA Creative Commons Licence by: 1) A sickle cell NGO in Nigeria SCORE International, who have versions in English, Yoruba, Hausa and Igbo 2) A collaboration of NUPAD (part of the medical school at Federal University of Minas Gerais, Brazil) and CEHMOB (a health organization working on sickle cell in Belo Horizonte) [pending]
 
Title Lecture # 4 Sickle Cell and Education 
Description A narrated Powerpoint Lecture, produced as an open education resource using Creative Commons Copyright CC-BY-SA , on the subject of this published article: Dyson, SM; Atkin, K; Culley, LA; Dyson, SE; Evans, H and Rowley, DT (2010) Disclosure and sickle cell disorder: a mixed methods study of the young person with sickle cell at school Social Science and Medicine 70 (12) 2036-2044. [ISSN: 0277-9536] 
IP Reference  
Protection Copyrighted (e.g. software)
Year Protection Granted 2011
Licensed No
Impact None
 
Title Lecture # 5 Sickle Cell and Education 
Description A narrated Powerpoint Lecture, produced as an open education resource using Creative Commons Copyright CC-BY-SA , on the subject of this published article: Dyson, SM; Atkin, K; Culley, LA; Dyson, SE; and Evans, H (2011) Sickle cell, habitual dyspositions and fragile dispositions: young people with sickle cell at school Sociology of Health and Illness 33 (3): 465-483 [ISSN: 0141-9889] 
IP Reference  
Protection Copyrighted (e.g. software)
Year Protection Granted 2011
Licensed No
Impact None
 
Title Lecture #1 on Sickle Cell and Education 
Description A narrated Powerpoint Lecture, produced as an open education resource using Creative Commons Copyright CC-BY-SA , on the subject of this published article: Dyson, SM; Atkin, K; Culley, LA and Dyson, SE (2007) The educational experiences of young people with sickle cell disorder: a commentary on existing literature. Disability and Society 22 (6): 581-594. [ISSN: 0968-7599] 
IP Reference  
Protection Copyrighted (e.g. software)
Year Protection Granted 2011
Licensed No
Impact None
 
Title Lecture #2 on Sickle Cell and Education 
Description A narrated Powerpoint Lecture, produced as an open education resource using Creative Commons Copyright CC-BY-SA , on the subject of this published article: Dyson, SM; Abuateya, H; Atkin, K; Culley, LA; Dyson, SE; and Rowley, DT (2008) Local authorities and the education of young people with sickle cell disorders (SCD) in England International Studies in Sociology of Education 18 (1) 47-60. [ISSN 0962-1214] 
IP Reference  
Protection Copyrighted (e.g. software)
Year Protection Granted 2011
Licensed No
Impact None
 
Title Lecture #3 on Sickle Cell and Education 
Description A narrated Powerpoint Lecture, produced as an open education resource using Creative Commons Copyright CC-BY-SA , on the subject of this published article: Dyson, SM; Abuateya, H; Atkin, K; Culley, LA; Dyson, SE; and Rowley, DT (2010) Reported school experiences of young people living with sickle cell disorder in England British Educational Research Journal 36 (1): 125-142 [ISSN 0141-1926] 
IP Reference  
Protection Copyrighted (e.g. software)
Year Protection Granted 2011
Licensed No
Impact None
 
Title Lecture #6 on Sickle Cell and Education 
Description A narrated Powerpoint Lecture, produced as an open education resource using Creative Commons Copyright CC-BY-SA , providing an overview of several published journal articles on sickle cell in schools 
IP Reference  
Protection Copyrighted (e.g. software)
Year Protection Granted 2011
Licensed No
Impact None
 
Title Research Summary 
Description A public summary of the research produced an an open education resource, licenced using Creative Commons Copyright (licence CC-BY-SA). The ESRC logo is deliberately omitted from this open education resource as we cannot assign copyright on this logo. 
IP Reference  
Protection Copyrighted (e.g. software)
Year Protection Granted 2011
Licensed No
Impact None
 
Description 1st International Congress on Sickle Cell_Ghana 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Professional Practitioners
Results and Impact Two talks on (1) Sickle Cell and Education and Sickle Cell and (2) Sickle Cell and School Ethos were given to a mixed audience of professional practitioners and community sickle cell advocates.

Futher information was requested by a Nigerian NGO who were present, leading to future working.
Year(s) Of Engagement Activity 2010
URL http://www.chop.edu/service/hematology/our-programs/sickle-cell-center/sickle-cell-first-global-cong...
 
Description Advice to Community Workers at OSCAR Sandwell_April 2015 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach Regional
Primary Audience Professional Practitioners
Results and Impact Response to a request for advice from community workers working for the West Midlands sickle cell NGO OSCAR Sandwell

This enabled community workers to respond to complaints received, namely that pupils with sickle cell disorders were being bullied and that teachers were not understanding the issues faced by such pupils, by preparing talks based on the evidence from the research.
Year(s) Of Engagement Activity 2015
URL http://www.oscarsandwell.org.uk/
 
Description Advice to Foreign and Commonwealth Office_Nigeria_2015 
Form Of Engagement Activity A formal working group, expert panel or dialogue
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Professional Practitioners
Results and Impact Advice given to a representative of the Science and Innovation Network of the Foreign and Commonwealth Office, Nigeria, on sickle cell and UK-Nigeria links.

Requests for further information
Year(s) Of Engagement Activity 2015
 
Description Advice to Nottingham OSCAR_Jan 2016 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach Local
Primary Audience Public/other audiences
Results and Impact Communication from the sickle cell voluntary group confirmed their use of Guide to School Policy developed out of the research.

"In addition, a parent with two affected children at a Nottingham City School were falling foul of the education authorities because of persistent lateness, (partly due to the problems of Sickle Cell,) and it had become serious, with the risk of the parent being taken to court. Bringing to bear our long experience and skills, we were able to negotiate a way forward (the parent was not without past blame) which involved the children using the school breakfast club amongst other measures. The School Head Teacher was provided with information & Health and Safety Sickle Cell Guidance leaflets produced by De Montfort University and a promise was made that in the event of a recurrence, we would be consulted before drastic action was taken"
Year(s) Of Engagement Activity 2016
 
Description Advice to Nursing Researchers_ Dublin_ Eire_ February 2015 
Form Of Engagement Activity A formal working group, expert panel or dialogue
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Professional Practitioners
Results and Impact Dialogue with nurse researchers led to sharing of original research instrument for adaptation

Dialogue led to further sharing of original Guide to School Policy open education resource to inform the research in Dublin.
Year(s) Of Engagement Activity 2015
 
Description Advice to Public Health Suffolk_June 2015 
Form Of Engagement Activity A formal working group, expert panel or dialogue
Part Of Official Scheme? No
Geographic Reach Regional
Primary Audience Professional Practitioners
Results and Impact This was a response to a request from Public Health Suffolk for comments on their draft Health Needs Assessment on Sickle Cell Disease

Further requests for information, especially around the Guide to School Policy
Year(s) Of Engagement Activity 2015
 
Description Advice to School Nurse and School Staff in Surrey_2015 
Form Of Engagement Activity A formal working group, expert panel or dialogue
Part Of Official Scheme? No
Geographic Reach Local
Primary Audience Schools
Results and Impact School nurse reported that advice on sickle cell and school policy would be incorporated into the young person with sickle cell's individual health care plan.

Nurse reported that the advice would stimulate discussion about school policy on uniform for PE in inclement weather.
Year(s) Of Engagement Activity 2015
 
Description Advice to Sickle Cell Society on Leaflets on Sickle Cell for Teachers_2015 
Form Of Engagement Activity Participation in an activity, workshop or similar
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Public/other audiences
Results and Impact Advice requested from Sickle Cell Society who wished to reply to a request from a teacher regarding advice on sickle cell to teachers.

Further requests were made.
Year(s) Of Engagement Activity 2015
 
Description Advice to Sickle Cell Society on Racism and Disablism in Film Ted 2_2015 
Form Of Engagement Activity A press release, press conference or response to a media enquiry/interview
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Public/other audiences
Results and Impact Advice led to preparation of a letter to Universal Studies the producers of the film

The racism and disablism around sickle cell in the film Ted 2 led to extensive critical comments in social media
Year(s) Of Engagement Activity 2015
URL http://sicklecellsociety.org/a-letter-to-universal-studios-regarding-ted-2/
 
Description Advice to Suffolk Sickle Cell Group_2015 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach Local
Primary Audience Participants in your research and patient groups
Results and Impact Advice on current guidance on school policy for sickle cell

Further information and copies of Guide to School Policy on Sickle Cell requested.
Year(s) Of Engagement Activity 2015
 
Description BBC Newsround_2009 
Form Of Engagement Activity A press release, press conference or response to a media enquiry/interview
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Public/other audiences
Results and Impact Arranged for BBC Newsround, TV programme aimed at school age children, to interview one of our research participants about personal experiecnes of living with sickle cell disorder at school

Request for further information
Year(s) Of Engagement Activity 2009
URL http://news.bbc.co.uk/cbbcnews/hi/newsid_8120000/newsid_8129600/8129616.stm
 
Description BBC Radio 4 Case Notes_Children's Health at School 
Form Of Engagement Activity A press release, press conference or response to a media enquiry/interview
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Media (as a channel to the public)
Results and Impact Interview with Professor Simon Dyson on the ESRC-funded research into the experiences of young people with sickle cell at school as part of BBC Radio 4 Programme Case Notes [Minute 07.00 to minute 11.15 within overall 30 minute programme] aired on 16th September 2009



Mothers of children with sickle cell reported that they were able to refer schools to the programme as a warrant of what they had been (hitherto unsucessfully) telling the schools about their child's health needs.
Year(s) Of Engagement Activity 2009
URL http://www.bbc.co.uk/programmes/b00mk7rv
 
Description BBC Radio Leicester_2007 
Form Of Engagement Activity A press release, press conference or response to a media enquiry/interview
Part Of Official Scheme? No
Geographic Reach Local
Primary Audience Public/other audiences
Results and Impact An interview with Caribbean Connection, BBC Radio Leicester a specialist radio programme for African-Caribbean listeners

Further interest in particpation in research
Year(s) Of Engagement Activity 2007
 
Description BBC Radio London_2009 
Form Of Engagement Activity A press release, press conference or response to a media enquiry/interview
Part Of Official Scheme? No
Geographic Reach Regional
Primary Audience Public/other audiences
Results and Impact An interview with BBC Radio London on 21st June 2009 about the issue of sickle cell in schools.

Futher requests for information
Year(s) Of Engagement Activity 2009
 
Description Barking Sickle Cell Support Group 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach Local
Primary Audience Public/other audiences
Results and Impact A talk on Sickle Cell and Education: The Results of Two Surveys Barking, Dagenham and Havering Sickle Cell and Thalassaemia Support Group held at Barking Learning Centre, 6th June 2009

The community self-help group asked for further advice in writing health education materials on sickle cell
Year(s) Of Engagement Activity 2009
 
Description Birmingham OSCAR_Ladywood Health Centre 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach Local
Primary Audience Public/other audiences
Results and Impact A talk on Sickle Cell and Education: The Results of Two Surveys for Birmingham Organization for Sickle Cell Research held at Ladywood Health Centre, Birmingham, 3rd June 2009

Further requests for information from the audience
Year(s) Of Engagement Activity 2009
 
Description Birmingham Rotary Club_Sickle cell in Schools 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach Local
Primary Audience Public/other audiences
Results and Impact A lecture for the Birmingham Rotary Club on sickle cell with particular reference to the challenges facing young people living with sickle cell disorder at school in England.

The participants, many of whom were employers, agreed to help with any future research on the topic of sickle cell and employment.
Year(s) Of Engagement Activity 2013
 
Description Booklet for Peers of Children with Sickle Cell 
Form Of Engagement Activity A magazine, newsletter or online publication
Part Of Official Scheme? No
Geographic Reach Regional
Primary Audience Schools
Results and Impact The team contributed to the production of three resources on sickle cell for schools by providing information from the research. The resources were designed by young people living with sickle cell who were part of a North London support groups called Broken Silence. The resources included this booklet designed for use by the school peers of pupils who have sickle cell disorder.

Further request for joint working with the support group.
Year(s) Of Engagement Activity 2010
URL http://www.dmu.ac.uk/documents/health-and-life-sciences-documents/sickle-cell/brokensilencepupilbook...
 
Description Booklet for Teachers 
Form Of Engagement Activity A magazine, newsletter or online publication
Part Of Official Scheme? No
Geographic Reach Regional
Primary Audience Schools
Results and Impact The team contributed to the production of three resources on sickle cell for schools by providing information from the research. The resources were designed by young people living with sickle cell who were part of a North London support groups called Broken Silence. The resources included this booklet designed for use by teachers of pupils who have sickle cell disorder.



The support group requested help with design of grant applications.
Year(s) Of Engagement Activity 2010
URL http://www.dmu.ac.uk/documents/health-and-life-sciences-documents/sickle-cell/brokensilenceteacherbo...
 
Description Briefing for Journalist_Press Association_2015 
Form Of Engagement Activity A press release, press conference or response to a media enquiry/interview
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Public/other audiences
Results and Impact No specific information available
Year(s) Of Engagement Activity 2015
 
Description Briefing for OSCAR Birmingham_Feb_2016 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach Regional
Primary Audience Other audiences
Results and Impact OSCAR Birmingham, the main NGO for sickle cell in the West Midlands requested briefing information about sickle cell to help them prepare a bid for funding.
Year(s) Of Engagement Activity 2016
URL http://www.oscarbirmingham.org.uk/
 
Description Bristol Organization for Sickle Cell Anaemia Research 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach Local
Primary Audience Public/other audiences
Results and Impact A talk on Sickle Cell in Schools for Bristol Organization for Sickle Cell Anaemia Research, Bristol OSCAR, Stapleton Road, Bristol on 13th June 2008

Further collaboration in recruiting research participants
Year(s) Of Engagement Activity 2008
 
Description CDC_2011 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Professional Practitioners
Results and Impact A Webinar, organized by the Centers for Disease Control and Prevention, Atlanta, GA, USA.

Requests for further inforamtion and joint working.
Year(s) Of Engagement Activity 2011
URL http://www.sicklecellanaemia.org/teaching-resources/resources/scooter30-35/scooter35.html
 
Description CDC_Atlanta_2012 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Professional Practitioners
Results and Impact A talk entitled Where There is No Racism? Case Studies of Young People with Sickle Cell at School.

Requests for further information and joint working.
Year(s) Of Engagement Activity 2012
URL http://hht.org/wp-content/uploads/2014/01/Conf_Program-FINAL31212.pdf
 
Description Cardiff and Vale NHS Trust 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach Regional
Primary Audience Public/other audiences
Results and Impact A talk on Sickle Cell and Education for Cardiff and Vale NHS Trust, County Hall, Cardiff Bay, Cardiff 29th May 2010

Requests for further information from the parents of children with sickle cell present.
Year(s) Of Engagement Activity 2010
 
Description Centers for Disease Control, Atlanta, USA_2009 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Professional Practitioners
Results and Impact An invited talk to the Centers for Disease Control and Prevention, Atlanta, Georgia, USA

Further ongoing collaboration requested by CDC
Year(s) Of Engagement Activity 2009
URL http://www.cdc.gov/ncbddd/sicklecell/index.html
 
Description Children and Young Provider's Network, Nottingham_ Talk on Sickle Cell In Schools 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach Local
Primary Audience Professional Practitioners
Results and Impact A lecture on sickle cell in schools and other settings relevant to young people. The lecture was given to a meeting of the Children and Young Persons Providers Network, Nottingham.

Audience reported an intention to cascade the information to their own school and youth settings.
Year(s) Of Engagement Activity 2013
 
Description City Hall, Toronto_2011 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Public/other audiences
Results and Impact A talk on Sickle Cell and Education for the Sickle Cell Disease Assocation of Ontario, Toronto, Canada

Requests for further information and policy advice.
Year(s) Of Engagement Activity 2011
URL http://www.sicklecellontario.org/
 
Description City University, London, 5th September 2019 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach Regional
Primary Audience Undergraduate students
Results and Impact Sickle Cell in Schools City University Community Nursing Student Conference, London, 5th September 2019
Year(s) Of Engagement Activity 2019
 
Description Conference Call with Universal Pictures, CA, USA 
Form Of Engagement Activity A formal working group, expert panel or dialogue
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Media (as a channel to the public)
Results and Impact Discussion with representatives of NBC Universal Pictures
Craig Robinson Chief Diversity Officer NBC Universal http://www.nbcuniversal.com/values
Peter Cramer, President, Production, Universal Pictures http://variety.com/exec/peter-cramer/
Cindy Gardner, Senior Vice President, Corporate Affairs https://www.nbcumv.com/executive/cindy-gardner?filter_type[1]=news
and
John James, CEO, UK Sickle Cell Society
Discussion about inappropropriate joke about sickle cell in Univeral Pictures film TED 2

After discussion, Universla Pictures agreed to send an information package on sickle cell to the managers of all the local TV stations owned by universal (including ones in New York, Philadelphia, Chicago, Washington DC, Los Angeles) encouraging them to include a programme with interviews with people living with sickle cell anaemia in their Sunday morning schedules for September (September being Sickle Cell Awareness Month in the USA) . At the time of writing two of the stations had committed to do so.
Year(s) Of Engagement Activity 2015
URL http://sicklecellsociety.org/a-letter-to-universal-studios-regarding-ted-2/
 
Description Conference_Belo Horizonte_2012 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Professional Practitioners
Results and Impact Two talks (1) Social aspects and education policy - the school and the student with SCD and (2) Young People with Sickle Cell Disease at School: the importance of school ethos/school climate/school culture. Papers were presnted to the conference: Saber Para Cuidar: Doença Falciforme Na Escola, Hotel San Diego Lourdes, Belo Horizonte, Minas Gerais, Brazil, 26-27th June 2012

Request for further collaboration and joint working with NUPAD (part of the medical school of the Federal University of Minas Gerais) and CEHMOB (a health organization working on sickle cell).
Year(s) Of Engagement Activity 2012
URL http://www.cehmob.org.br/?page_id=4929
 
Description Contribution to article published in Times Educational Supplement_2017 
Form Of Engagement Activity A magazine, newsletter or online publication
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Schools
Results and Impact Contribution to an article published in the Times Educational Supplement. The journalist concerned also uploaded the Guide to School Policy on Sickle Cell to the TES Resources Web-site for teachers and linked to the resource form within the published article.
Year(s) Of Engagement Activity 2017
URL http://www.tes.com.c.tes.ent.platform.sh/news/school-news/breaking-views/how-schools-can-support-pup...
 
Description Croydon Community Focus_2010_community newspaper 
Form Of Engagement Activity A magazine, newsletter or online publication
Part Of Official Scheme? No
Geographic Reach Local
Primary Audience Public/other audiences
Results and Impact Publication for a community newsletter Croydon Community Focus for Black and Minority Ethnic (BME) communities in Croydon, London:

Dyson, SM (2010) Education and young people with sickle cell disorders Croydon Community Focus 4 (June): 6-7

This led to a local person with sickle cell being prepared to contribute a session "Personal Experiences of Living with Sickle Cell" to professional and community conferences orgnaized by the PI.
Year(s) Of Engagement Activity 2010
URL http://casscanfoundation.org/default.aspx
 
Description Department for Education_2014 
Form Of Engagement Activity A formal working group, expert panel or dialogue
Part Of Official Scheme? Yes
Geographic Reach National
Primary Audience Policymakers/politicians
Results and Impact No results recorded

No impacts noted
Year(s) Of Engagement Activity 2014
 
Description East Sussex School 
Form Of Engagement Activity Participation in an activity, workshop or similar
Part Of Official Scheme? No
Geographic Reach Local
Primary Audience Schools
Results and Impact Briefing on research results through provision to the mother of two children with sickle cell of the online in advance article on sickle cell in schools in the British Educational Research Journal

The mother repored back:-

"I had a meeting at my daughter's school regarding my child's educational welfare as I had already had issues with it. There had initially been a "confrontation" about this matter for which I had refused to bow owing to the fact that my child "matters" to me. I got the feeling that the school had already formed an idea about what sort of parent I was. This is because they played into everything that I said and as I pulled out copies of your article to give them, they themselves recognised it and let it out that they had spent the past few days researching on sickle cell (knowing that this meeting was forthcoming) and had come across your publication. To this effect, the school has promised to put in place every available resource in place to support not just my daughter's schooling but also the family. Arrangements are being made for me to address all the staff come September. Also regular reviews and protocols of actions were discussed and updating care plan, the first of which we did yesterday. Such articles help to support everybody involved to raise awareness". (Mother of two children with SCD, Sussex, email, 02/07/2009).
Year(s) Of Engagement Activity 2009
 
Description East and Midlands Specialised Commissioning Group_2012 
Form Of Engagement Activity A formal working group, expert panel or dialogue
Part Of Official Scheme? Yes
Geographic Reach National
Primary Audience Policymakers/politicians
Results and Impact Advice give on 19th December 2012 was:

I have been copied in to an email requesting comments on draft proposals for commissioning of haemoglobinopathies. The one factor I can see missing is any requirement to address school health for young people with sickle cell disease (SCD). Young people spend half their lives as children in school so care outside hospital to a large extent means care at school. Our research suggested that children with sickle cell are regularly made ill unnecessarily by schools falling to have any policies (and often any notion) of what they should be doing to keep young people with sickle cell well at school. It is clear that children with SCD are becoming ill and having expensive hospital treatment (1) because teachers will not permit drinking of water in class (or will not permit toilet breaks which then make the young person reluctant to drink water), (2) because 75% of schools with a child with SCD have no arrangements for giving painkillers to children with SCD, or (3) because PE teacher enforce unsuitable exercise making the young person ill. Less than half of pupils (43%) with SCD have an individual health care plan as suggested by guidance on managing health conditions at school. Our research also strongly suggested that these issues are NOT related to teacher awareness of SCD and so are NOT solved simply by greater awareness for teachers.

The findings may be summarised as follows: Young people with SCD reported missing an average of 16 school days per year. However, the intermittent nature of the absences (each period of absence from school being, typically, of 2-3 days duration, meant statutory requirements on local authorities to make special provisions were not applied. The majority of young people with SCD felt they were not helped to catch up the education they missed. Over 80% felt they were helped to catch up less than half of what they missed, 20% felt they were not helped to catch up any of what was missed, and only 5% reported they were helped to catch up all education missed. Half the children reported not being allowed to use the toilet when needed and not being allowed water in class (adequate hydration being a key preventive measure to reduce incidences of illness); a third reported being made to take unsuitable exercise (another potential trigger to unnecessary episodes of illness) and being called lazy when tired from the severe anaemia that characterises SCD. There was no statistical association between whether or not teachers/peers knew the young person had SCD ad whether or not the young person reported negative school experiences. Raising awareness is therefore insufficient for effecting change. A change in wider school environments is required so that young people with SCD are supported irrespective of whether they foreground or play down their disabled identity.

We (rightly) spend a great deal of public money on newborn screening and Transcranial Doppler Screening in order that young people with SCD reach age 5 as healthy as possible and then all these advances are thrown away because school health, and in particular preventive measures in relation to health at school, are the poorest of poor relations when considering health priorities. With this in mind, and on the basis of the only national study of the health of young people with SCD at school, I would suggest the following:


1) Directors of Public Health be required to notify annually to the Head of Children and Young Person's Services the numbers of people with SCD born in each school year cohort. In this way the relevant local authority should be made aware of the level of need within the education authority.
2) The School Nursing Service in conjunction with the local specialist sickle cell/thalassaemia nurses is required to audit the existence and annual maintenance of Individual Health Care Plans for young people with SCD at school.
3) The School Nursing Service in conjunction with the local specialist sickle cell/thalassaemia nurses is required to audit the existence and annual maintenance of a school policy on sickle cell and thalassaemia. A free-to-use example is enclosed. This policy guide is on the Department of Education web-site at http://www.education.gov.uk/schools/pupilsupport/pastoralcare/b0013771/managing-medicines-in-schools
4) The School Nursing Service in conjunction with the local specialist sickle cell/thalassaemia nurses is required to audit the existence and annual maintenance of arrangements for administration of painkillers for young people with SCD at school in cases where moderate painkillers and some rest would enable them to remain in school. We would not tolerate a child with asthma being denied its inhaler, or a child with diabetes its insulin. Why should school health be so crass as to be able to deny a child with sickle cell pain relief for mild to moderate pain that might enable them to remain included within the school environment?

I realise that the focus of the consultation is on clinical commissioning. However, unless the focus is broadened and important school health preventive interventions are specified then merely by dint of the age structure of communities having children with SCD, the number of people with SCD will rise to over 20,000 (360 babies a year x an anticipated average life expectancy in the future of 60 years for someone with SCD = 21,600) and the costs of treatment will increase accordingly. The fact that the commissioning is clincally focussed and focussed on acute care should not, in my view, exclude an initiative that will ultimately help to keep treatment costs closer to current levels by moderating the increase in demand caused by the increase in numbers, with the preventive measures suggested.


Submission of advice was acknowleged but it was stated that although school health intimately affected clinical costs that the narrow remot on provision of acute sevcies menat that the board could nottake account of comments. This was acknowldged as an issue. We were adviced to send commetns to the web-site of the national NHS commissioning team, http://www.commissioningboard.nhs.uk/ourwork/d-com/spec-serv/consult/
Year(s) Of Engagement Activity 2012
 
Description Equality and Diversity Group_Genomics England_2015 
Form Of Engagement Activity A formal working group, expert panel or dialogue
Part Of Official Scheme? Yes
Geographic Reach National
Primary Audience Public/other audiences
Results and Impact Contributed to discussion with members of Genomics England, clinical geneticists, GPs, Professors of Primary Care, ethicists, genetic counsellors, NGO representatives and members of the public.

Request for examples of good practice in public engagement around genetics and minority ethnic groups
Year(s) Of Engagement Activity 2015
 
Description Evidence Submission _Campaign for Social Sciences_2016 
Form Of Engagement Activity A formal working group, expert panel or dialogue
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Third sector organisations
Results and Impact Evidence submitted in response to a request from the Campaign for Social Science for evidence of contribution of social science to health. The case study presented, Sickle Cell in Schools, was relevant to a number of the key themes outlined by the Campaign for Social Science in their call, including:

• Tackling (ethnic) inequalities
• Improving safety (of young people at school)
• Prevention (of illness episodes requiring hospital admission)
• Care closer to community (in this case, school, which perhaps makes up half of children and young people's lives in the "community").
Year(s) Of Engagement Activity 2016
URL https://campaignforsocialscience.org.uk/
 
Description Forum for Acute Sickle Cell Nurses_2008 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach Local
Primary Audience Professional Practitioners
Results and Impact A talk on sickle cell in schools to the Forum for Acute Sickle Cell and Thalassaemia Nurse Specialists City Hospital, Birmingham 9th December 2008

Requests for futher information
Year(s) Of Engagement Activity 2008
 
Description George March Centre, Haringey, London 12th September 2019 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach Local
Primary Audience Patients, carers and/or patient groups
Results and Impact Sickle cell in schools and sickle cell and employment George March Centre, Haringey, London 12th September 2019
Year(s) Of Engagement Activity 2019
 
Description Guys and St Thomas Sickle Cell Course_2008 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Type Of Presentation keynote/invited speaker
Geographic Reach International
Primary Audience Professional Practitioners
Results and Impact A presentation on sickle cell in schools to a mixed audience of junior doctors, consultants, nurses, and international sickle cell NGO members.

Request for further information from African delegates
Year(s) Of Engagement Activity 2008
 
Description Hackney NHS Trust 
Form Of Engagement Activity A magazine, newsletter or online publication
Part Of Official Scheme? No
Geographic Reach Local
Primary Audience Professional Practitioners
Results and Impact A short article for the newsletter of the Hackney NHS Trust on the results of the research on sickle cell in schools

Request for advocacy support for a mother struggling with challenges of bringing up a young person living with sickle cell disorder
Year(s) Of Engagement Activity 2009
 
Description Harbourfront Community Centre_Toronto_2008 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Public/other audiences
Results and Impact A talk at the invitation of the Sickle Cell Disease Association of Ontario, Toronto, Canada,

Requests for further information, further talks in susbsequent years, and policy advice.
Year(s) Of Engagement Activity 2008
URL http://www.sicklecellontario.org/
 
Description Highfield Rangers_Leicester_2009 
Form Of Engagement Activity A magazine, newsletter or online publication
Part Of Official Scheme? No
Geographic Reach Local
Primary Audience Public/other audiences
Results and Impact A short article on sickle cell in schools for Highfield Rangers a Black Caribbean sports club in Leicester

Request for further information
Year(s) Of Engagement Activity 2009
 
Description Humber College_Toronto_2013 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Undergraduate students
Results and Impact A talk on Sickle Cell: The Need for School Protocols given to the conference for undergraduate health professionals, health professionals and community sickle cell advocates Humber College Institute of Technology and Advanced Learning Conference Sickle Cell: A Family Affair Toronto, Ontario, Canada, June 18-19th 2013

Requests for further information
Year(s) Of Engagement Activity 2013
URL http://healthsciences.humber.ca/assets/files/pdfs/SickleCell-AFamilyAffairBrochure20130517.pdf
 
Description Interview for Centro de Educação e Apoio para Hemoglobinopatias 
Form Of Engagement Activity A magazine, newsletter or online publication
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Public/other audiences
Results and Impact Simon Dyson provided an interview which was used as part of an educational web-site, developed in 2014, by the Centre for Education and Support of Haemoglobinopathies, a centre funded by the Brazilian Ministry of Health and supported by NUPAD, part of the medical school of the Federal University of Minas Gerais.

Request for further joint working at a workshop on sickle cell in schools at an international conference on sickle cell
Year(s) Of Engagement Activity 2014
URL http://www.cehmob.org.br/?p=6120
 
Description Interview with community activist Olamide Adesanya_2015 
Form Of Engagement Activity A magazine, newsletter or online publication
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Media (as a channel to the public)
Results and Impact Interview was placed together with an interview with a USA celebrity living with sickle cell disease (T-Boz Watkin of the group TLC) by the interviewer and released as a free MP3 file.

Requests for further information
Year(s) Of Engagement Activity 2015
URL https://soundcloud.com/olamide-adesanya/sickle-cell-feature-with-tboz-and-professor-simon-dyson
 
Description Ireland National Blood Centre_2014 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Public/other audiences
Results and Impact A talk on Sickle Cell in Schools to a mixed audience of doctors, policy makers (eg European MEP), and parents/people living with sickle cell disorders.

Request for further information
Year(s) Of Engagement Activity 2014
 
Description Journal of School and Public Health Nurses_I 
Form Of Engagement Activity A magazine, newsletter or online publication
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Professional Practitioners
Results and Impact Article for professional magazine:

Dyson, SM (2008) Children at school with sickle cell: Part I Journal of School and Public Health 2 (2): 13-15.

Invitation to future collaboration with the School and Public Health Nurses Association
Year(s) Of Engagement Activity 2008
 
Description Journal of School and Public Health Nurses_II 
Form Of Engagement Activity A magazine, newsletter or online publication
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Professional Practitioners
Results and Impact An article in the professional magazine:

Dyson, SM (2008) Children at school with sickle cell: Part II Journal of School and Public Health 2 (3): 29-31.

Increase in requests for information
Year(s) Of Engagement Activity 2008
 
Description Lecture_OSCAR Brimingham_August_2016 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach Regional
Primary Audience Patients, carers and/or patient groups
Results and Impact An invited presentation to Organization for Sickle Cell Anaemia Relief (OSCAR Birmingham) fundraising dinner dance, Emerald Club, Small Heath, Birmingham, Saturday 20th August 2016
Year(s) Of Engagement Activity 2016
URL http://www.oscarbirmingham.org.uk/
 
Description Leeds_2008 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach Regional
Primary Audience Public/other audiences
Results and Impact A talk on sickle cell in education for ASYABI a Leeds based NGO on sickle cell

Requests for further information.
Year(s) Of Engagement Activity 2008
 
Description Leicester City Primary Care Trust 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach Local
Primary Audience Public/other audiences
Results and Impact A talk on Sickle Cell in Schools for Leicester City PCT Sickle Cell Awareness Seminar Moat Community College, Leicester 24th June 2008

Networking possible with the Chair of the Board of Trustees for the Sickle Cell Society who was also a speaker.
Year(s) Of Engagement Activity 2008
 
Description Leicestershire Sickle Cell and Thalassaemia Services Conference Leicester Space Centre, 22nd June 2019 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach Regional
Primary Audience Patients, carers and/or patient groups
Results and Impact Sickle Cell in Schools Leicestershire Sickle Cell and Thalassaemia Services Conference Leicester Space Centre, 22nd June 2019
Year(s) Of Engagement Activity 2019
 
Description Liverpool Sickle Cell and Thalassaemia Support Group Abercrombie Health Centre_ Liverpool, 31st May 2019 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach Regional
Primary Audience Third sector organisations
Results and Impact Sickle cell in schools Liverpool Sickle Cell and Thalassaemia Support Group Abercrombie Health Centre, Liverpool, 31st May 2019
Year(s) Of Engagement Activity 2019
 
Description MA Healthcare Conference 2010 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Professional Practitioners
Results and Impact A talk on Sickle cell and education 2nd MA Healthcare Conference: Sickle Cell 2010 Institute of Physics 4th-5th November 2010.

Request to repeat the session for the following year
Year(s) Of Engagement Activity 2010
 
Description MA Healthcare Conference 2011 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Professional Practitioners
Results and Impact A talk on Sickle cell and education 3rd MA Healthcare Conference: Sickle Cell 2011 Institute of Physics 18-19th October 2011.

Not aware of any impact
Year(s) Of Engagement Activity 2011
 
Description MA Healthcare Conference_2009 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Professional Practitioners
Results and Impact The main dissemination event for the research project was a conference co-organized with the School and Public Health Nurses Association at University College London, 30th November and 1st December 2009

Request to repeat aspects of the conference for future years
Year(s) Of Engagement Activity 2009
URL http://www.dmu.ac.uk/documents/health-and-life-sciences-documents/sickle-cell/supportandmanagementco...
 
Description Manchester Primary Care Trust 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach Local
Primary Audience Professional Practitioners
Results and Impact A talk on The Experiences of Young People with Sickle Cell in Education for Manchester Primary Care Trust held at Manchester Sickle Cell and Thalassaemia Centre, Oxford Road, Manchester 23rd July 2008

Further requests for information from members of the public who were also in attendance
Year(s) Of Engagement Activity 2008
 
Description Mayday Healthcare NHS Trust 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach Local
Primary Audience Professional Practitioners
Results and Impact A talk on Sickle Cell and Education: The Results of Two Surveys for the conference entitled Sickle Cell and Thalassaemia: Challenges to Opportunities, Mayday Healthcare NHS Trust, Croydon, 21st October 2008.

Local support group asked to video record the presentation
Year(s) Of Engagement Activity 2008
 
Description Mediterranean Haematology Seminar_Rome 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Postgraduate students
Results and Impact A talk on Sickle Cell in Schools in the UK, presented to the Mediterranean Haematology Seminar on Sickle cell Anaemia, Facoltà di Medicina e Chirurgia A. Gemelli, Universita Cattolica del Sacro Cuore, Rome, 8th March 2013.

Request for further information and collaboration
Year(s) Of Engagement Activity 2013
URL https://www.youtube.com/watch?v=GsPFemVJbjg
 
Description Meeting with Local Government Association_Oct 2016 
Form Of Engagement Activity A formal working group, expert panel or dialogue
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Policymakers/politicians
Results and Impact Meeting with Ian Keating, Principal Policy Advisor and Clive Harris, Children and Young People Policy Team, Local Government Association, Smith Square, London.

Guide to School Policy will be distributed electronically to all SEN coordinators.
Year(s) Of Engagement Activity 2016
URL https://twitter.com/SickleCellUK/status/782918242977378304
 
Description Meeting with Toronto District School Board_2016 
Form Of Engagement Activity A formal working group, expert panel or dialogue
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Policymakers/politicians
Results and Impact Meeting with Tiffany Ford, elected member of Toronto District School Board for the ward of York West; and the board of trustees of the Sickle Cell Association of Ontario to discuss support for young people with sickle cell at school, specifically the possibility of TDSB developing their version of the Guide to School Policy on Sickle Cell.
Year(s) Of Engagement Activity 2016
 
Description Meeting_Florence Eshamoli_Greater London Assembly Member_2016 
Form Of Engagement Activity A formal working group, expert panel or dialogue
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Policymakers/politicians
Results and Impact A meeting was held at City Hall with Florence Eshamoli (Greater London Assembly Member for Lambeth and Southwark, elected May 2016); John James (CEO of the Sickle Cell Society) and Zoe Williams (Social Media Officer, Sickle Cell Society) to discuss sickle cell in schools and the need for policies. Florence agreed to make a request to the office of the Mayor of London for funding for workshops on sickle cell in schools for London.
Year(s) Of Engagement Activity 2016
 
Description NHS Commissioning Board_Advice_2012 
Form Of Engagement Activity A formal working group, expert panel or dialogue
Part Of Official Scheme? Yes
Geographic Reach National
Primary Audience Policymakers/politicians
Results and Impact Advice on sickle cell in schools was submitted to the onlien consutlation portal of the NHS Commissioning Board, part of NHS England.

The ID of the advice given was noted as ANON-TGU6-4S2J-9, but we remain unaware of any impact of the advice given.
Year(s) Of Engagement Activity 2012
 
Description NICE_2012 
Form Of Engagement Activity A formal working group, expert panel or dialogue
Part Of Official Scheme? Yes
Geographic Reach National
Primary Audience Policymakers/politicians
Results and Impact A written response to the National Institute for Health and Care Excellence (NICE) consulation on NICE Guidance Social and emotional wellbeing in secondary education (PH20). The referenced advice, covering ten separate submitted policy comments, was noted in a table of responses of stakeholders received in an email from NICE on 22 January 2013.

The referenced advice that generic guidance failed to address several aspects of needs specific to the circumstances at school for those with sickle cell disorders was noted, but no changes to guidance were made.
Year(s) Of Engagement Activity 2012
URL http://guidance.nice.org.uk/PH20
 
Description Newham Sickle Cell Centre_2007 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach Local
Primary Audience Public/other audiences
Results and Impact To give a talk on sickle cell in schools based on the review of the literature

Further requests for information.
Year(s) Of Engagement Activity 2007
 
Description Newham Sickle Cell and Thalassaemia Centre 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach Local
Primary Audience Professional Practitioners
Results and Impact A talk on Sickle Cell and Education for school nurses and sickle cell nurse counsellors

Requests to act as advocate for mother of child with sickle cell experiencing problems at school whsoe son had been excluded
Year(s) Of Engagement Activity 2010
 
Description Newsletter for Leicester NHS Sickle Cell Specialist_June 2015 
Form Of Engagement Activity A magazine, newsletter or online publication
Part Of Official Scheme? No
Geographic Reach Local
Primary Audience Participants in your research and patient groups
Results and Impact Requests for further information

Requests from NHS Sickle Cell Nurse Specialist to give a talk to the patient group.
Year(s) Of Engagement Activity 2015
 
Description Newsletter_Bristol OSCAR_2009 
Form Of Engagement Activity A magazine, newsletter or online publication
Part Of Official Scheme? No
Geographic Reach Local
Primary Audience Public/other audiences
Results and Impact Two linked short articles on sickle cell in schools for a sickle cell support group OSCAR Bristol

Requests for further information
Year(s) Of Engagement Activity 2009
 
Description Newsletter_Broken Silence_2009 
Form Of Engagement Activity A magazine, newsletter or online publication
Part Of Official Scheme? No
Geographic Reach Local
Primary Audience Public/other audiences
Results and Impact A short article on research into sickle cell in schools for use by the sickle cell support group based in Brent, London called Broken Silence

Requests for further joint working.
Year(s) Of Engagement Activity 2009
 
Description Newsletter_Northampton_2009 
Form Of Engagement Activity A magazine, newsletter or online publication
Part Of Official Scheme? No
Geographic Reach Local
Primary Audience Public/other audiences
Results and Impact A short article for local sickle cell support group in Northampton

Further information requests
Year(s) Of Engagement Activity 2009
 
Description Newsletter_OSCAR Birmingham 
Form Of Engagement Activity A magazine, newsletter or online publication
Part Of Official Scheme? No
Geographic Reach Local
Primary Audience Public/other audiences
Results and Impact A short article on sickle cell and schools for a Brimingham sickle cell support group

Further requests for joint working and talks
Year(s) Of Engagement Activity 2009
 
Description Newsletter_OSCAR Notts_2009 
Form Of Engagement Activity A magazine, newsletter or online publication
Part Of Official Scheme? No
Geographic Reach Local
Primary Audience Public/other audiences
Results and Impact A short article on sickle cell in schools written for the support group OSCAR Nottingham

Request for further inormation, talks and help with grant applications.
Year(s) Of Engagement Activity 2009
 
Description Newsletter_OSCAR Sandwell_2009 
Form Of Engagement Activity A magazine, newsletter or online publication
Part Of Official Scheme? No
Geographic Reach Local
Primary Audience Public/other audiences
Results and Impact A short article on sickle cell in schools for the Sandwell sickle cell support group.

Requests for futher joint working on a grant application
Year(s) Of Engagement Activity 2009
 
Description North Carolina_2011 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Public/other audiences
Results and Impact Two invited talks (1) Sickle Cell and Education, and (2) Sickle Cell and School Ethos given to Social Aspects of Sickle Cell Conference, North Carolina Sickle Cell Syndrom Program, Sheraton Hotel, Raleigh, Durham, NC, USA, 18th February 2011.

Request for further information and joint working, including from two representatives of the Brazilian Ministry of Health
Year(s) Of Engagement Activity 2011
 
Description Northampton Sickle Cell Support Group 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach Local
Primary Audience Public/other audiences
Results and Impact A talk on The Experiences of Young People with Sickle Cell in Education Northampton Sickle Cell Support Group, Northampton 5th December 2008

Contacts were made for a PhD student working on the topic of Black Carers
Year(s) Of Engagement Activity 2008
 
Description Northamptonshire Hospital and Outreach Education_Northampton 23 May 2019 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach Regional
Primary Audience Professional Practitioners
Results and Impact Sickle Cell in Schools Northamptonshire Hospital and Outreach Education, Delapre School, Northampton 23 May 2019
Year(s) Of Engagement Activity 2019
 
Description Nottingham City Council_Schools _2013 
Form Of Engagement Activity A magazine, newsletter or online publication
Part Of Official Scheme? No
Geographic Reach Local
Primary Audience Schools
Results and Impact Detailed advice deriving from the research on sickle cell in schools was combined with local information from the voluntary sickle cell group OSCAR Nottingham to write an article in SCENE, the Nottingham City Council newsletter for Nottingham schools.

OSCAR Nottingham requested further joint working to influence schools.
Year(s) Of Engagement Activity 2013
 
Description Nottingham Local Radio_Sickle Cell and schools 
Form Of Engagement Activity A press release, press conference or response to a media enquiry/interview
Part Of Official Scheme? No
Geographic Reach Local
Primary Audience Media (as a channel to the public)
Results and Impact An interview on Nottingham's African-Caribbean Community Radio Station KEMET FM as part of Nottingham's Sickle Cell Awareness Week. [Approximately 12 minutes]

Not aware of any specific impact
Year(s) Of Engagement Activity 2009
 
Description Nottingham OSCAR_Oceana Night Club 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach Local
Primary Audience Public/other audiences
Results and Impact A talk on Sickle Cell in Education as part of fund raising event for Nottingham OSCAR held at Oceana Night Club, Nottingham, 26th July 2009.

Further requests for talks and ongoing policy advice from the self-help group.
Year(s) Of Engagement Activity 2009
 
Description OSCAR Nottingham_2007 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach Local
Primary Audience Public/other audiences
Results and Impact To explain the study on sickle cell in schools to mebers of OSCAR Nottingham a sickle cell NGO and to invite participation in the study.

OSCAR Nottingham participated in recruitment and served on the advisory steering group for the project.
Year(s) Of Engagement Activity 2007,2014
 
Description OSCAR Sandwell_ Smethwick, Birmingham 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach Local
Primary Audience Public/other audiences
Results and Impact A talk on Local Children's Services and Guidance on Sickle Cell in Schools for Sandwell Organization for Sickle Cell Anaemia Research held at CAP Centre, Smethwick, Birmingham, on 28th January 2008.

Ongoing connection with local sickle cell support groups
Year(s) Of Engagement Activity 2008
 
Description OSCAR Sandwell_2007 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach Local
Primary Audience Public/other audiences
Results and Impact A talk to explain the purposes and help recruitment for the stud on sickle cell in schools.

The organization OSCAR Sandwell became a key participant in the ESRC-funded study
Year(s) Of Engagement Activity 2007
 
Description OSCAR Sandwell_West Bromwich_2011 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach Local
Primary Audience Public/other audiences
Results and Impact A talk on Sickle Cell and School Policy for OSCAR Sandwell, West Bromwich, 8th July 2011

Support group requested help with grant application
Year(s) Of Engagement Activity 2011
 
Description Presentation to Kings College Hospital Sickle Cell Patients Support Group_9th January 2020 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Patients, carers and/or patient groups
Results and Impact Presentation to Kings College NHS Foundation Trust Patients' Sickle Cell Support Group, Boardroom, Kings College Hospital, London. Attended by approximately 40 people.
Year(s) Of Engagement Activity 2020
 
Description Presentation_Sickle Cell Support Group Guy's and St Thomas' Hopsital, London, 21st Janaury 2020 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Patients, carers and/or patient groups
Results and Impact Presentation on sickle cell in schools to Sickle Cell Support Group Guy's and St Thomas' Hopsital, London, 21st Janaury 2020
Year(s) Of Engagement Activity 2020
 
Description Press Coverage_Training Journal_September 2016 
Form Of Engagement Activity A magazine, newsletter or online publication
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Professional Practitioners
Results and Impact Commentary on sickle cell in schools as part of an article for Training Journal
Year(s) Of Engagement Activity 2016
URL http://www.trainingjournal.com/articles/feature/sickle-cell-disease-do-nurses-and-teachers-need-bett...
 
Description Promotion of Guide to School Policy with Sickle Cell Society_Jan_09_2015 
Form Of Engagement Activity A magazine, newsletter or online publication
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Schools
Results and Impact Project led to increase in inquiries to the Sickle Cell Society about supporting young people with sickle cell in schools

Sickle Cell Society reported increase in numbers downloading the Guide to School Policy on Sickle Cell from their web-site.
Year(s) Of Engagement Activity 2015
URL http://sicklecellsociety.org/supporting-young-people-with-sickle-cell-at-school-a-guide/
 
Description Queen Elizabeth Hospital, Lewisham, London 2nd October 2019 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach Local
Primary Audience Professional Practitioners
Results and Impact Sickle Cell in Schools; Sickle Cell and Employment Queen Elizabeth Hospital, Lewisham, London 2nd October 2019
Year(s) Of Engagement Activity 2019
 
Description Radio Interview_RadioIIFunky_Leicester_2015 
Form Of Engagement Activity A press release, press conference or response to a media enquiry/interview
Part Of Official Scheme? No
Geographic Reach Local
Primary Audience Public/other audiences
Results and Impact Interview about sickle cell in schools and about sickle cell screening

Requests for further information
Year(s) Of Engagement Activity 2015
 
Description Romford_2007 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach Local
Primary Audience Public/other audiences
Results and Impact A talk to the Barking, Dagenham and Havering Sickle Cell and Thalassaemia Support Group to explain the ESRC funded project on sickle cell in schools and invite recruitment to the project

The Barking, Dagenham and Havering Sickle Cell and Thalassaemia Support Group joned the advisory steering group for the project
Year(s) Of Engagement Activity 2007
 
Description SE London Sickle Cell and Thalassaemia Centre, Lambeth, London 25th October 2019 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach Local
Primary Audience Patients, carers and/or patient groups
Results and Impact Sickle Cell in Schools; Sickle Cell and Employment SE London Sickle Cell and Thalassaemia Centre, Lambeth, London 25th October 2019
Year(s) Of Engagement Activity 2019
 
Description SE London Sickle Cell and Thalassaemia Centre, Lambeth, London 28th June 2019 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach Regional
Primary Audience Patients, carers and/or patient groups
Results and Impact Sickle Cell in Schools SE London Sickle Cell and Thalassaemia Centre, Lambeth, London 28th June 2019
Year(s) Of Engagement Activity 2019
 
Description STANMAP_Sickle Cell Specialist Nurses, Midwives, Allied Professionals Group_2016 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Professional Practitioners
Results and Impact An inaugural conference for around 60 specialist sickle cell nurses, midwives and allied health professionals. Request for electronic copy of the Guide to School Policy was requested for the email list of the group.
Year(s) Of Engagement Activity 2016
 
Description Sandwell _OSCAR_Villa Park 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach Local
Primary Audience Public/other audiences
Results and Impact A talk on Sickle Cell in Schools to Sandwell Organization for Sickle Cell Anaemia Research at Aston Villa Football Club, Birmingham 28th June 2008

Further information requested by many in the audience
Year(s) Of Engagement Activity 2008
 
Description School Poster on Sickle Cell 
Form Of Engagement Activity A magazine, newsletter or online publication
Part Of Official Scheme? No
Geographic Reach Regional
Primary Audience Schools
Results and Impact The team contributed to the production of three resources on sickle cell for schools by providing information from the research. The resources were designed by young people living with sickle cell who were part of a North London support groups called Broken Silence. The resources included this poster designed for use in schools where there are pupils who have sickle cell disorder.

Further requests for joint working with the support group.
Year(s) Of Engagement Activity 2010
URL http://www.dmu.ac.uk/documents/health-and-life-sciences-documents/sickle-cell/brokensilenceposter.pd...
 
Description School and Public Health Nurses_2008 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Professional Practitioners
Results and Impact A talk fr the professional body representing school nurses at their annual conference School and Public Health Nurses Annual Conference Centennial Centre, Birmingham October 8th 2008.

Requests for written information
Year(s) Of Engagement Activity 2008
 
Description School and Public Health Nurses_2010 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Professional Practitioners
Results and Impact A talk on Sickle Cell The Challenge for Education, School and Public Health Nurses 4th Annual Conference, Centennial Centre, Birmingham 27th-28th September 2010.

Requests for further information
Year(s) Of Engagement Activity 2010
 
Description Scotland Sickle Cell and Thalassaemia Support Group Glasgow Caledonian University_13th June 2019 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Third sector organisations
Results and Impact Sickle cell in schools Scotland Sickle Cell and Thalassaemia Support Group Glasgow Caledonian University, Glasgow, 13th June 2019
Year(s) Of Engagement Activity 2019
 
Description Sheffield_ACE Centre 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach Local
Primary Audience Public/other audiences
Results and Impact A talk on Sickle Cell and Schools Policy for Sheffield Sickle Cell and Thalassaemia Foundation ACE Centre Sheffield, October 6th 2011

Support group requested further information and guidance on resisting cuts in their funding
Year(s) Of Engagement Activity 2011
 
Description Sickle Cell Disease Association of America_2009 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Professional Practitioners
Results and Impact Two talks: Reported School Experiencesof Young People with Sickle cell in School, and Sickle Cell and School Ethos, were given to a mixed audience of professional practitioners and community sickle cell advocates.

This led to futher requests for talks, including one subsequently requested by and given to the Centers for Disease Control and Prevention
Year(s) Of Engagement Activity 2009
URL http://www.sicklecelldisease.org/
 
Description Sickle Cell Foundation for Research_Florida_2013 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Professional Practitioners
Results and Impact A session of three papers including (1) Sickle Cell and School Policy, (2) Sickle Cell and School Ethos, both given by the project team, and (3) A linked presentation by the CDC on developing a guide to school policy for the USA. Session of the conference: 7th Annual Sickle Cell Disease Research and Educational Symposium and 36th Annual National Sickle Cell Disease Scientific Meeting SICKLE CELL DISEASE IN THE POST-GENOMIC ERA: CHANGING PERSPECTIVES IN LABORATORY, CLINIC AND COMMUNITY Intercontinental Hotel, Miami, Florida, USA, April 14th-18th 2013.

Requests for further information from the audience
Year(s) Of Engagement Activity 2013
 
Description Sickle Cell Nurse Counsellor 
Form Of Engagement Activity Participation in an activity, workshop or similar
Part Of Official Scheme? No
Geographic Reach Local
Primary Audience Professional Practitioners
Results and Impact The manager of the sickle cell nursing service attended the conference organized in conjunction with the School and Public Health Nurses Association (December 2009) at which a presentation of the findings was made and copies of the journal article made available to delegates. The manager subsequently contacted the project for advice on the content of materials produced:



After receiving further information the nurse counsellor reported back:

"Thank you for your comments Simon, they are very much appreciated and valued. It's so nice to be able to discuss things with someone who really understands the social aspects of SCD. Sometimes I feel as if we are an invisible layer between the acute department and the maternity services. I used to feel a bit disheartened by this when I first started the job but have realised that we must keep battling and never lose our voice as a service". (Lead Nurse Counsellor/Manager Sickle Cell & Thalassaemia Service, 09/06/2010)
Year(s) Of Engagement Activity 2010
 
Description Sickle Cell Society AGM_2008 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Public/other audiences
Results and Impact A talk on The Experiences of Young People with Sickle Cell in Education; Sickle Cell Society 29th Annual Meeting Emmanuel Centre, Westminster, London 19th July 2008

Further requests for talks from community groups. Led to a request from the Sickle Cell Society to become a Scientific Advisor to the society.
Year(s) Of Engagement Activity 2008
 
Description Sickle Cell Society Newsletter_2008 
Form Of Engagement Activity A magazine, newsletter or online publication
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Public/other audiences
Results and Impact An article for a sickle cell NGO newsletter:

Dyson, SM (2008) Education and Young People with Sickle Cell Disorders Update January 2008 Sickle Cell Society Issue 1 Summer 2008: 18.

Update for a voluntary organiztion on the progress of research to which mnay of their members were contributing as participants
Year(s) Of Engagement Activity 2008
 
Description Sickle Cell Society Newsletter_2010 
Form Of Engagement Activity A magazine, newsletter or online publication
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Public/other audiences
Results and Impact Article for the newsletter of the Sickle Cell Society, the UK's largest sickle cell charity/voluntary group

This article was to share the results of a study to which many Sickle Cell Society members had themselves contributed. As such it contributed, though demonstrating a committment to share results in an accessible and timely manner, to consolidating good working relationships between social researchers and sickle cell communities of interest.
Year(s) Of Engagement Activity 2010
URL http://www.sicklecellsociety.org/
 
Description Sickle Cell Society Newsletter_2011 
Form Of Engagement Activity A magazine, newsletter or online publication
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Public/other audiences
Results and Impact An update on the research for the largest sickle cell voluntary group newsletter:

Dyson, SM (2011) Young people with sickle cell disorder (SCD) in schools Sickle Cell Society Summer 2011 Issue 7: 17.

Request for further information
Year(s) Of Engagement Activity 2011
 
Description Sickle Cell Society Newsletter_Autumn_2007 
Form Of Engagement Activity A magazine, newsletter or online publication
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Public/other audiences
Results and Impact An article in the newsletter of the Sickle Cell Society, the UK's largest sickle cell NGO.

Increased participation in research on sickle cell in schools
Year(s) Of Engagement Activity 2007
 
Description Sickle Cell Society Newsletter_Spring_2007 
Form Of Engagement Activity A magazine, newsletter or online publication
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Participants in your research and patient groups
Results and Impact A short article in the Sickle Cell Society Newsletter explaining the purpose of the research and inviting participation

The article contributed to raising awareness of the research with several local sickle cell groups who subscribe to the national newsletter
Year(s) Of Engagement Activity 2007
 
Description Sickle Cell Society_AGM_2006 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Public/other audiences
Results and Impact A talk designed to explain the background and elicit volunteer participants for the project

A number of individuals and support groups volunteered to take part in the study
Year(s) Of Engagement Activity 2006
 
Description Sickle Cell Society_Campaign in London Mayoral Election_2016 
Form Of Engagement Activity A magazine, newsletter or online publication
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Professional Practitioners
Results and Impact The main UK NGO for sickle cell, the Sickle Cell Society, used work on the development of a Guide to School Policy on Sickle Cell in a blog and Twitter campaign to lobby candidates in the 2016 London Mayoral election.
Year(s) Of Engagement Activity 2016
URL http://sicklecellsociety.org/support-sickle-cell-in-schools-a-message-for-potential-london-mayors/
 
Description Sickle Cell Society_EIRE_2013 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Public/other audiences
Results and Impact A talk on Sickle Cell in Schools for a mixed audience of teachers, health professionals, policy makers and members of the public.

Request for futher information and future collaborations
Year(s) Of Engagement Activity 2013
 
Description Sickle Cell Young Stroke Survivors_Peckham 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach Local
Primary Audience Public/other audiences
Results and Impact A talk on Sickle Cell and Education for support group Sickle Cell Young Stroke Survivors at Damilola Taylor Centre, Peckham, 30th October 2009.

Further requests for talks and policy advice from the support group.
Year(s) Of Engagement Activity 2009
 
Description Sickle Cell and School Policy_Talk to NHS Newham_West Ham Football Ground_2015 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach Regional
Primary Audience Public/other audiences
Results and Impact Talk resulted in questions and requests for copies of the school policy

Talk resulted in questions, requests for copies of the school policy, and requests to speak again in the future.
Year(s) Of Engagement Activity 2015
URL http://www.newhamrecorder.co.uk/news/health/boleyn_ground_hosts_sickle_cell_awareness_conference_1_4...
 
Description Sickle Cell and School Policy_Talk to OSCAR Sandwell_2015 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach Regional
Primary Audience Public/other audiences
Results and Impact Talk led to discussion and request for further advice

One mother asked for more specific advice with respect to her daughter with sickle cell disease.
Year(s) Of Engagement Activity 2015
URL http://www.oscarsandwell.org.uk/
 
Description Sickle Cell and Schools Policy_Second World Sickle Cell Congress_2014 
Form Of Engagement Activity Participation in an activity, workshop or similar
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Professional Practitioners
Results and Impact The talk was part of an engagement activity with Brazilian researchers and Ilma Fatima de Jesus, a Minister for Education for the Brazilian state of Minas Gerais to share results of ESRC funded study and to look at the Brazilian adaptation of the Guide to School Policy on Sickle Cell developed in the UK as an open education resource as part of the ESRC project

Further requests for information and the possibility of developing a similar guide for the country of Ghana
Year(s) Of Engagement Activity 2014
URL http://www.hemorio.rj.gov.br/CongressoGSCDN/
 
Description Social Aspects of Sickle Cell Conference_2010 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Type Of Presentation paper presentation
Geographic Reach International
Primary Audience Professional Practitioners
Results and Impact 85 delegates from eight countries attended a three day conference Sickle Cell The Next 100 years. Five papers from the ESRC research project were presented by project team members.

Plans were made for future conferences on social aspects of sickle cell (which took place in Atlanta, USA in 2012 and Rio de Janeiro, Brazil in 2014).
Year(s) Of Engagement Activity 2010
 
Description Southwark College 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach Local
Primary Audience Schools
Results and Impact A talk on Sickle Cell in Education for Southwark College, as part of Aiming Higher initiative Southwark, 8th June 2011

Aiming Higher Co-ordinator requested further information.
Year(s) Of Engagement Activity 2011
 
Description Steve McCabe MP 
Form Of Engagement Activity Participation in an activity, workshop or similar
Part Of Official Scheme? No
Geographic Reach Local
Primary Audience Policymakers/politicians
Results and Impact Following a MP's surgery at which he was approached by the mother of a child with sickle cell disorder, the MP for Selly Oak Steve McCabe requested a (1) a meeting with the PI; (2) a breakdown of the national results to show similarities and differecnes with results in his own region; (3) a briefing paper for hisuse as a campaigning MP

A local MP's campaign on sickle cell
Year(s) Of Engagement Activity 2009
 
Description Stroke Association/SCYSS Lambeth 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach Regional
Primary Audience Public/other audiences
Results and Impact A talk on The World of the Child with Sickle Cell in Education for a joint conference of The Stroke Association and Sickle Cell Young Stroke Survivors held in Lambeth on 31st January 2008

Led to further request from the Stroke Association for (i) critical comments on their health literature on sickle cell and strokes and (ii) a further request for a talk in Birmingham.
Year(s) Of Engagement Activity 2008
 
Description Stroke Association_Sickle cell and Strokes in Schools 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach Regional
Primary Audience Public/other audiences
Results and Impact A lecture to the community conference Action on Stroke Month on the experiences of young people with sickle cell and who have undergone a stroke (about 11% of all young people with sickle cell) at school

Stroke Association asked for further advice in developing their education materials on sickle cell
Year(s) Of Engagement Activity 2013
 
Description Study Visit on Sickle Cell in Schools for Brazilian Delegation_Jan_2015 
Form Of Engagement Activity Participation in an activity, workshop or similar
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Professional Practitioners
Results and Impact A range of sickle cell practitioners in UK and sickle cell practitioners in Brazil were able to exchange ideas and experiences around sickle cell in schools.

A number of UK practitioners expressed interest in Brazilian distance learning materials for continuing professional education of teachers on sickle cell. Brazilian delegates took away range of UK materials on the subject.
Year(s) Of Engagement Activity 2015
URL http://www.cehmob.org.br/?page_id=222
 
Description Talk for Newham Sickle Cell 6th Annual Conference_2016 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Patients, carers and/or patient groups
Results and Impact A talk for Newham Sickle Cell and Thalassaemia Service 6th Annual Conference at East Ham Town Hall. The local MP for East Ham Stephen Timms was present and asked for a briefing on sickle cell and schools to be sent to him
Year(s) Of Engagement Activity 2016
 
Description Talk for South Yorkshire Sickle Cell Organization_2016 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach Regional
Primary Audience Public/other audiences
Results and Impact Talk given on Sickle Cell in Schools: A Guide to School Policy. Specialist sickle cell nurse counsellors, acute specialist sickle cell nurses, and paediatric haematologists are now using this guide in Sheffield Schools. The guide was also given to Councillor Denise Fox current Mayor of Sheffield.
Year(s) Of Engagement Activity 2016
 
Description Talk to Croydon Sickle Cell and Thalassaemia Support Group_11 February 2017 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach Local
Primary Audience Patients, carers and/or patient groups
Results and Impact A presentation on sickle cell in schools to the annual general meeting of the Croydon Sickle Cell and Thalassaemia Support Group. members asked for multiple copies of the Guide to School Policy for use in local schools
Year(s) Of Engagement Activity 2017
URL http://cscats.org/_wp/
 
Description Talk to SE London Sickle Cell Centre_Jan_2015 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach Local
Primary Audience Professional Practitioners
Results and Impact Talk led to questions, discussions, and request for further support materials

The talk led to requests for use of further support and educational materials on sickle cell in schools.
Year(s) Of Engagement Activity 2015
 
Description Talk to West Yorkshire and Humber Haemoglobinopathy Group 
Form Of Engagement Activity A formal working group, expert panel or dialogue
Part Of Official Scheme? No
Geographic Reach Regional
Primary Audience Professional Practitioners
Results and Impact Talk to West Yorkshire and Humber Haemoglobinopathy Group (consultant haematologists, consultant paediatricians, sickle cell clinical nurse specialists, genetic counsellors and patient groups) at Bradford Royal Infirmary
Year(s) Of Engagement Activity 2017
 
Description Talk_Hopital TENON_Paris_2015 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Professional Practitioners
Results and Impact Talk, led to further questions about the situation for people living with sickle cell in England.

Request for a meeting with those practitioners and social scientists working on social aspects of sickle cell
Year(s) Of Engagement Activity 2015
 
Description Talk_Newham Multi-Agency Forum_Jan 2016 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach Regional
Primary Audience Professional Practitioners
Results and Impact Talk prompted questions and discussion

The Newham Multi-Agency Forum and the Newham Sickle Cell and Thalassaemia Counselling Service agreed to develop a joint pilot project working to implement the Guide to School Policy on Sickle Cell (developed as an output of an ESRC-funded research project) in Newham Schools
Year(s) Of Engagement Activity 2016
 
Description Talk_North London Sickle Cell Society_Hackney_2017 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Patients, carers and/or patient groups
Results and Impact Saturday 28th October 2017: a presentation on School Policy and Sickle Cell to the North London Sickle Cell Society at the Redmond Community Centre in Hackney, London. Other speakers at the event included consultant haematologists and paediatricians from the Royal Free Hospital and Homerton Hospitals, and Dianne Abbott, MP for Hackney North and Stoke Newington.
Year(s) Of Engagement Activity 2017
 
Description Talk_Northamptonshire Hospital and Outreach Education_Kettering_2019 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach Regional
Primary Audience Professional Practitioners
Results and Impact Sickle Cell in Schools Northamptonshire Hospital and Outreach Education, Gatehouse School, Kettering 21 May 2019
Year(s) Of Engagement Activity 2019
 
Description Talk_OSCAR Sandwell_2016 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach Regional
Primary Audience Professional Practitioners
Results and Impact Talk to mixed group of professionals, students and patients on Guide to School Policy on Sickle Cell at the Organization for Sickle Cell Anaemia Research (OSCAR) Sandwell, in West Bromwich.
Year(s) Of Engagement Activity 2016
URL http://www.oscarsandwell.org.uk/
 
Description Talk_SE London Sickle Cell Centre Community Nurses Conference_6 Feb 2020 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach Regional
Primary Audience Professional Practitioners
Results and Impact Talk on sickle cell in schools to a conference of around 50 school nurses, health visitors and other community health professionals at SE London Sickle Cell Centre, Lambeth, London
Year(s) Of Engagement Activity 2020
 
Description Talk_Sandwell General Hospital_2016 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach Regional
Primary Audience Professional Practitioners
Results and Impact Talk given to 40 members of Sandwell General Hospital Paediatric Services as part of their Quality Improvement Day. Requests made for more information on the Guide to School Policy on Sickle Cell produced on the basis of the research, and the doctors concerned wrote to the heads of school nursing services for both Sandwell and Birmingham respectively to encourage them to learn about this guide.
Year(s) Of Engagement Activity 2016
 
Description Talk_Sickle Cell Health and Wellbeing_Use of School Policies_OSCAR Nottingham AGM_2015 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach Regional
Primary Audience Public/other audiences
Results and Impact Talk led to several discussions with stallholders at the Health and Wellbeing Day

Requests for further information
Year(s) Of Engagement Activity 2015
 
Description Talk_Sickle Cell in Education_Coventry University 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach Regional
Primary Audience Other audiences
Results and Impact Talk for University of Coventry (Professional services staff, academic staff, students, general public) on sickle cell in education
Year(s) Of Engagement Activity 2018
 
Description Talk_Sickle Cell in Schools_Croydon Town Hall_2019 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Third sector organisations
Results and Impact Talk on sickle cell in schools for Croydon Sickle Cell and Thalassaemia Support Group
Year(s) Of Engagement Activity 2019
 
Description Talk_Sickle Cell in Schools_Highfields Library_Leicester 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach Local
Primary Audience Public/other audiences
Results and Impact Talk prompted several questions from audience and discussion

Local community health worker expressed interest in promoting the Guide to School Policy in local inner-city schools. An elected city councillor who was present also expressed an interest in the guide.
Year(s) Of Engagement Activity 2015
 
Description Talk_Sickle Cell in Schools_Nottingham Multi-Agency Forum_2015 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach Regional
Primary Audience Professional Practitioners
Results and Impact Talk prompted discussion and questions

Interests expressed in the talk being given to other relevant Nottingham agencies (e.g school nurses) and discussion started concerning use by the NHS Trust of the Guide to School Policy on Sickle Cell developed from the research .
Year(s) Of Engagement Activity 2015
 
Description Talk_Sickle Cell in Schools_Nottingham Organization for Sickle Cell Anaemia Research_NGO_2015 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach Regional
Primary Audience Public/other audiences
Results and Impact Talk led to requests for copies of the Guide to School Policy for Sickle cell

Request made for further talks.
Year(s) Of Engagement Activity 2015
 
Description Talk_South London Sickle Cell Society_2017 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Patients, carers and/or patient groups
Results and Impact A talk on sickle cell in schools and development of a Guide to School Policy on Sickle cell in Schools delivered to the South London Sickle Cell Society Link Project at Canada Water Library, Lewisham, South London, 4th November 2017.
Year(s) Of Engagement Activity 2017
 
Description The Vine_2008 
Form Of Engagement Activity A magazine, newsletter or online publication
Part Of Official Scheme? No
Geographic Reach Regional
Primary Audience Public/other audiences
Results and Impact A briefing about the research for The Vine a West Midlands community magazine for BME communities

Request for an update when full results of the study were known.
Year(s) Of Engagement Activity 2008
 
Description The Vine_2009 
Form Of Engagement Activity A magazine, newsletter or online publication
Part Of Official Scheme? No
Geographic Reach Regional
Primary Audience Public/other audiences
Results and Impact An update on the results of the research on sickle cell in schools for the publications The Vine, a community magazine for BME communities in the West Midlands.

Request for futher information
Year(s) Of Engagement Activity 2009
 
Description The Voice_Newspaper_2009 
Form Of Engagement Activity A press release, press conference or response to a media enquiry/interview
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Public/other audiences
Results and Impact Interview about sickle cell and education The Voice Newspaper 22nd-28th June 2009

Increase in requests for information
Year(s) Of Engagement Activity 2009
 
Description The Voice_Newspaper_2013_Part 1 
Form Of Engagement Activity A magazine, newsletter or online publication
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Public/other audiences
Results and Impact As part of a talk to the Sickle Cell Society EIRE in Dublin, one of the team (Simon Dyson) was interviewed by The Voice

Not aware of any impact
Year(s) Of Engagement Activity 2013
URL http://www.voice-online.co.uk/article/sickle-cell-ignorance-slammed
 
Description The Voice_Newspaper_2013_Part 2 
Form Of Engagement Activity A press release, press conference or response to a media enquiry/interview
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Public/other audiences
Results and Impact As part of an invited talk to the Sickle Cell Society of EIRE in Dublin, one of the team (Simon Dyson) was interviewed by The Voice, a leading Black Newspaper.

No specifc impact noted
Year(s) Of Engagement Activity 2013
URL http://www.voice-online.co.uk/article/sickle-cell-sufferers-ireland-get-new-voice
 
Description Tower Hamlets_2007 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach Local
Primary Audience Public/other audiences
Results and Impact A talk on sickle cell in education to explain the proejct and invite recruitment

The local support group helped with recruitment to the study.
Year(s) Of Engagement Activity 2007
 
Description Trinity College Dublin_2009 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Other academic audiences (collaborators, peers etc.)
Results and Impact A talk entitled Mistaking Disaffection: Sickle Cell in Schools, given at a conference for Health Professionals and University Health Lecturers

Audience became more aware of the size of the sickle cell population in EIRE
Year(s) Of Engagement Activity 2009
 
Description Website_www.sicklecelleducation.com 
Form Of Engagement Activity A magazine, newsletter or online publication
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Public/other audiences
Results and Impact This is a web-site designed to host many of the major outputs of the project (articles, video clips, dowloadable leaflets and leaflets and policy guides). The site is hosted through the University server but has a short, accessible url:- www.sicklecelleducation.com

Increase in requests for further information
Year(s) Of Engagement Activity 2011
URL http://www.sicklecelleducation.com
 
Description West Bromwich Sickle Cell_2009 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach Local
Primary Audience Public/other audiences
Results and Impact A talk on Sickle Cell and Education: The Results of Two Surveys for Sandwell Organization for Sickle Cell Research held at Bethel Convention Centre, West Bromwich, 8th May 2009

Ongoing collaboration with a key sickle cell community group
Year(s) Of Engagement Activity 2009
 
Description West Midlands Paediatric Haemoglobinopathy Group_2016 
Form Of Engagement Activity A formal working group, expert panel or dialogue
Part Of Official Scheme? No
Geographic Reach Regional
Primary Audience Professional Practitioners
Results and Impact The inaugural day-long meeting of the West Midlands Haemoglobinopathy Network requested input to the multi-disciplinary network to improve the services for young people with sickle cell/thalassaemia in the West Midlands and surrounding counties. Information was provided around care of the young person with sickle cell at school and sickle cell/thalassaemia trait.
Year(s) Of Engagement Activity 2016
 
Description Workshop_ Mothers of SCD_Newham_2016 
Form Of Engagement Activity Participation in an activity, workshop or similar
Part Of Official Scheme? No
Geographic Reach Regional
Primary Audience Public/other audiences
Results and Impact A workshop for mothers of young people living with sickle cell disease (SCD) held at Newham Sickle Cell and Thalassaemia Centre on 21st July 2016. Audience included mothers, young people living with SCD, community nurse specialists, school nurses, nursing students.

The workshops resulted in plans for the Newham Sickle Cell and Thalassaemia Service to liaise with schools in Newham, starting with the two schools with highest numbers, to ensure young people with SCD have education and health care plans.
Year(s) Of Engagement Activity 2016
 
Description You Tube_Sickle Cell at School_2010 
Form Of Engagement Activity A magazine, newsletter or online publication
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Public/other audiences
Results and Impact A ten minute You Tube clip, describing the main findings of the paper published by Elsevier:

Dyson, SM; Atkin, K; Culley, LA; Dyson, SE; Evans, H and Rowley, DT (2010) Disclosure and sickle cell disorder: a mixed methods study of the young person with sickle cell at school Social Science and Medicine 70 (12) 2036-2044. [ISSN: 0277-9536]

Request for further information: Lanetta Jordan, Chief Medical Officer of the Sickle Cell Disease Association of America used the clip to advertize a session on sickle cell in schools at a 2013 conference in Florida to which the team contributed two papers.
Year(s) Of Engagement Activity 2010
URL http://www.youtube.com/watch?v=IIlKuSv70EQ
 
Description Young People Speak_Video Clips_2010 
Form Of Engagement Activity A magazine, newsletter or online publication
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Public/other audiences
Results and Impact Following previous engagement with the sickle cell support group Broken Silence, members of the group living with sickle cell disorder agreed to record a series of 15 short on-line video clips illustrating the key findings of the research project by reference to their own personal experiences on

1) Being denied water in class
2) Being denied toilet breaks when needed
3) Being called lazy when tired from their anaemia
4) Being made to undertake unsuitable physical exercise
5) Problems with the pian of sickle cell when at school
6) Problems related to lack of school policies to prevent or compensate for absence from school
5)

Request for further information from a policy advisor in Bahrain
Year(s) Of Engagement Activity 2010
URL http://www.sicklecelleducation.com