I. Sickle cell society members
II. Key contacts within NHSE
III. Key contacts within HCC Network
IV. AHSN Spectra Optia Leads
V. Spectra Optia National Working Group Members (NHS BT clinical leads and Terumo)

We will facilitate a lot of discussions around key topic areas such as:

• Informed decision making and talking to clinicians
• Out of hours care for Sickle Cell
• Travel and transport arrangements
• Barriers in attending treatment: pain, fatigue and the waiting
• Pain relief: the wait, under prescribing and overdose

Please feel free to sign up and to take part in these important discussions which will help inform the provision of services.

Seminar details:
20th April 2023
Time 10-12pm
Webinar link: https://www.eventbrite.co.uk/e/sickle-cell-disease-appropriateness-in-access-to-automated-red-blood-cell-tickets-608610810317

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One of the clear findings of the sickle cell care inquiry conducted by the Sickle Cell Society and the APPG on Sickle Cell and Thalassaemia, as detailed in the ‘No One’s Listening’ report, was that inadequate staffing levels for sickle cell care are a key factor in the care failings sickle cell patients encounter. The inquiry was told of “chronic under-staffing”, with fears that the problem is on course to get worse without action, due to an ageing staff demographic and too few replacements.

The report also detailed evidence that the lack of specialist nurses for sickle cell care means that patients encounter healthcare professionals without the appropriate knowledge of their condition, which exacerbates issues around stigmatisation, lack of joined-up care and care failings.

The Sickle Cell Society is now undertaking a research project to gain a more detailed understanding of the current level of nurse staffing for sickle cell (and other rare anaemias), the impact this has on patients and clinicians, and what needs to happen to ensure there are sufficient numbers of nurses to deliver a good standard of care to people with sickle cell disorder.

What the research project aims to explore:

The Sickle Cell Society would welcome evidence from a range of individuals and organisations, such as individuals with sickle cell disorder, family members and carers of people with sickle cell disorder, healthcare professionals, healthcare bodies and other relevant organisations. We have suggested below questions that may be most relevant to different respondents but please feel free to answer any questions you wish to respond to:

For patients and carers

• In your experience, is there generally a sufficient number of nurses to provide a good standard of sickle cell care?
• In your experience, is there a sufficient number of nurses who specialise in sickle cell?
• In your experience, how does the level of nurse staffing in the community compare with in-patient hospital settings?
• What is your impression of how the level of specialist nurse staffing for sickle cell compares with other conditions such as cystic fibrosis and haemophilia?
• What impact does the current level of nurse staffing have on your (or your loved one’s) care?
• What is your impression of the impact the current level of nurse staffing has on the nurses who deliver your (or your loved one’s) care?
• What do you (or your loved one) require from the nurses who care for you? What does good care and support look like?

For nurses and other healthcare professionals

• In your experience, is there generally a sufficient number of nurses to provide a good standard of sickle cell care?
• In your experience, is there a sufficient number of nurses who specialise in sickle cell?
• What factors affect how many nurses choose to specialise in sickle cell?
• To provide a good standard of care, what would you say the ratio should be of number of sickle cell patients per specialist nurse employed? What is the current ratio in your service?
• How does the level of nurse staffing in the community compare with in-patient settings?
• What is your assessment of the level of availability of nurse counselling for sickle cell patients?
• How does the level of nurse staffing for sickle cell compare with other conditions such as cystic fibrosis and haemophilia?
• How has the level of nurse staffing changed during the time you have been working? Is it better, the same or worse? What are the reasons for this? What impact did the pandemic have?
• What impact does the current level of nurse staffing have on you and your colleagues?
• What impact does the current level of nurse staffing have on sickle cell patients?
• If you believe the current level of nurse staffing for sickle cell is insufficient, what do you believe needs to happen to increase numbers? Are there steps other than increasing funding that need to be taken?
• What needs to happen to increase retention of the sickle cell nursing workforce?
• What is your expectation of what will happen to sickle cell nursing workforce levels in the coming years without a change of approach?
• Is regular training on sickle cell provided to nurses in your NHS Trust who are not specialists in sickle cell? If so, can you describe this training and its frequency?
• What does or what would a good training pathway to develop specialist sickle cell nurses look like?
• [If you work in the community] To what extent do you feel you have appropriate coordination with colleagues in secondary care?
• [If you work in secondary care] To what extent do you feel you have appropriate coordination with colleagues in community settings?

For healthcare bodies

• Is there generally a sufficient number of nurses to provide a good standard of sickle cell care in England?
• Is there a sufficient number of nurses who specialise in sickle cell?
• What factors affect how many nurses choose to specialise in sickle cell?
• Are there challenges in filling sickle cell nurse vacancies? If so, why is this?
• To provide a good standard of care, what should the ratio be of number of sickle cell patients per specialist nurse employed?
• How does the level of nurse staffing in the community compare with in-patient settings?
• What is your assessment of the level of availability of nurse counselling for sickle cell patients?
• How does the level of nurse staffing for sickle cell compare with other conditions such as cystic fibrosis and haemophilia?
• What impact has the pandemic had on the sickle cell nurse workforce?
• What impact does the current level of nurse staffing have on nurses and other clinicians?
• What impact does the current level of nurse staffing have on sickle cell patients?
• If you believe the current level of nurse staffing for sickle cell is insufficient, what do you believe needs to happen to increase numbers? Are there steps other than increasing funding that need to be taken?
• What needs to happen to increase retention of the sickle cell nursing workforce?
• What is your expectation of what will happen to sickle cell nursing workforce levels in the coming years without a change of approach?

The Sickle Cell Society will consider the evidence presented to it and present its recommendations in a report to be published in late 2023.

Submission guidelines:

Submissions of written evidence should follow the guidelines below:

• Be submitted as a Microsoft Word document
• State clearly who the submission is from, and whether it is sent in a personal capacity or on behalf of an organisation
• Be no more than 2,500 words in length
• Comprise a single document attachment to the email.

There is no requirement to answer every question above and respondents should feel free to choose the questions they can most usefully cover. Accounts of personal experience and anecdotal evidence is welcome. The Sickle Cell Society would welcome receiving submissions from individuals or organisations.

Written evidence received will form the basis for the Sickle Cell Society’s final report, alongside evidence gathered through focus groups and interviews. Some written evidence will be directly quoted in the report. Please explicitly state if any of the submission provided should not be directly quoted or should only be quoted anonymously.

Please submit written evidence to aidan.rylatt@sicklecellsociety.org by Friday 5^th May 2023.

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We celebrated Valentine’s Day about five weeks ago. Did you know it is reportedly the most celebrated day around the world besides New Year?  Saint Valentine’s Day is apparently named after a saint called Valentinus who it is said was imprisoned for performing weddings on soldiers forbidden to marry and for ministering to Christians who were persecuted under the Roman Empire.  Legend has it that he healed the daughter of his jailer and before his execution he wrote “from your Valentine” as a farewell to her!  By the 15^th Century, 14 February had become associated with romance and the tradition of courtly love and had pretty much evolved to what happens now – an occasion when couples (current or would-be!) express their love by presenting each other with flowers, chocolates, romantic gestures and cards known as ‘valentines’.

Why Care about Type?

From the type of people we might have been attracted to this past Valentine’s Day to the way we look and behave, there’s a lot we inherit from our parents through genes, including our haemoglobin genotype.  This tells you the two genes (i.e. codes) – one inherited from each parent – that determine your type of blood haemoglobin.  Haemoglobin is the substance in your blood that gives blood its red colour and carries oxygen around your body.  The type of haemoglobin genes you inherit or pass on can play an important role in determining whether you or your children are affected by two serious inherited blood conditions – sickle cell disease and thalassaemia.

Sickle cell disease is a serious inherited blood condition that can cause severe pain, anaemia and organ damage.  It mainly affects people who originate from Africa, the Caribbean, Asia, the Middle East and the Mediterranean.  However, sickle cell is not a ‘Black’ disease and can affect ‘White’ people too, though less frequently.  The reason sickle cell is more common amongst the ethnicities described above is because the sickle cell gene was a mutation to protect against malaria and being a ‘carrier’ of one copy of the gene (also known as being ‘trait’) offered some protection.  People with the trait survived malaria and could have children with other survivors, thus making sickle cell prevalent in areas that had malaria.  Thus, it is not a condition people should feel stigma about.  Also, please remember trait or not, everyone should protect themselves when in malaria areas of the world!

Out of the 15 million people estimated to have sickle cell disease worldwide, around 10 million live in Africa of which approximately 4 million are in Nigeria.  In the UK, an estimated 15,000 people have sickle cell disease and in 2019/20,  262 new babies were born with sickle cell and 8247 were ‘carriers’ or ‘trait’ (Data from NHS Sickle Cell and Thalassaemia Screening Programme Data Report 2019/20).

Thalassaemia is a condition most common among people originating from India, Pakistan, Bangladesh, Cyprus and China.  People can inherit Beta Thalassaemia major which affects their ability to produce enough red blood cells. This causes severe anaemia and organ damage and they need to be on regular blood transfusions throughout life.

The usual and most common type of haemoglobin gene people inherit is Haemoglobin A. Unusual haemoglobin genes include Haemoglobin S (known as ‘sickle haemoglobin’), Haemoglobin C and beta thalassaemia.   People can only get sickle cell or thalassaemia if they inherit two unusual genes for haemoglobin, one from each parent.  In the UK 1 in 4 West Africans are sickle cell ‘trait’.

Post Valentine’s be the perfect partner!

On 14 February 2023, many people will have established new relationships or progressed further with old ones.  Particularly for young couples who have not yet had children, now might be the right time to raise awareness of these two inherited blood conditions so individuals can consider finding out their ‘haemoglobin genotype’, as each time two people with trait have a baby there is a 25% chance the baby could be born with sickle cell disease or thalassaemia.  A simple blood test will determine if you carry a gene for sickle cell or thalassaemia and tell you your haemoglobin genotype.  For someone with sickle cell anaemia this will be ‘SS’ and for someone with sickle cell trait this is ‘AS’.  However, if people inherit the other unusual haemoglobin genes they will have other types of sickle cell disease apart from sickle cell anaemia, such as ‘SC Disease’ (common amongst Ghanaians) and ‘sickle-beta thalassaemia’.

There is an NHS Sickle Cell and Thalassaema (antenatal and newborn) Screening Programme which offers all pregnant women a screening blood test which is then offered to the father-to-be if the woman is found to be a carrier. The Programme also screens newborn babies for sickle cell.  In England only 60% of men are currently accepting their invitation for sickle cell screening and so more men need to step up!  If the father-to-be also carries the sickle cell gene then the ‘at-risk’ couple is given all the information that enables them to make an informed choice about the pregnancy.  If you are already a couple and you know that you both carry one of the genes for sickle cell or thalassaemia  then you should present to your GP early in your pregnancy or contact maternity services or your nearest NHS Sickle Cell and Thalassaemia specialist counselling services directly. You should also tell healthcare professionals if you want counselling and prenatal diagnosis (tests to see if the unborn baby has the condition) and not assume that all healthcare professionals will know what you want!

Preconception Testing

Testing for your haemoglobin genotype before pregnancy is called ‘preconception testing’. You can ask your GP for this blood test before you and your partner decide to start a family and especially if you know other family members who are carriers or who have sickle cell. You and your ‘Valentine’ can then discuss any risks and the choices that are right for you!  Recent discussions the Sickle Cell Society has had with students and young adults who have not yet had children indicate that there is now more awareness of sickle cell and that many are keen to find out their genotype before starting relationships. They are also keen to know options available to ‘at-risk’ couples. The Sickle Cell Society and UK Thalassaemia Society do a lot of outreach to educate the general public about sickle cell and thalassaemia  as more awareness will also help to remove the stigma associated with these two conditions.   The Societies are also planning to do even more preconception outreach so those planning children will be well informed.

Now the valentine cards, chocolates and flowers are over why not learn more about sickle cell disease and thalassaemia so you can make informed choices (about testing) if and when the need arises?  By so doing, you just might be considered that perfect partner after all!

Below are websites with lots of information to help you:

Sickle Cell Society

www.sicklecellsociety.org

Email: info@sicklecellsociety.org

UK Thalassaemia Society

www.ukts.org

Email: office@ukts.org

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Claudette is a pharmacist, with a career in NHS Organisations across London that spans over 25 years. She is currently the Head of Medicines Optimisation in South West London Integrated Care Board (ICB), which was previously South West London Clinical Commissioning Group (CCG)  Claudette holds a Bachelor of Pharmacy degree from Kings College, University of  London and a Masters’ in Healthcare Commissioning, obtained at  Birmingham  Business School, University of Birmingham and has a cultivated substantial experience in strategic planning,  and implementation of evidence-based practice within the UK health Service.

Claudette is passionate about addressing health inequalities and eliminating barriers that prevent people from navigating the health system and accessing equitable care. As a mother of a sickle cell warrior, she’s experienced first-hand the challenges faced by the sickle cell community living in the UK. Outside of work Claudette continues to pursue an avid interest in health prevention and is a qualified health coach and former level 2 fitness instructor. In her spare time, she will use these skills to facilitate people to make lifestyle modifications to improve their health and reduce the risk of preventable illnesses such as type 2 diabetes, stroke, and cardiovascular disease.

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Job Title:                     Volunteer Co-ordinator

Hours:                         21 hours per week

Salary:                        £16,200 pro-rata (plus NI & Pension)

Contract:                   Two-year fixed term appointment (with potential to extend)

Line Managed by:    Fundraising Manager

Responsible for:        Volunteer recruitment, co-ordination, support and development

Location:                    Remote working (One day minimum at 54 Station Road)

Job Purpose: 

Community Volunteers are vital to the work of the Sickle Cell Society. They help us in many ways such as increasing awareness and understanding of sickle cell, involving local people with the work of the Society and raising much needed funds to help us improve the lives of individuals with sickle cell and their families.

The role of the Volunteer Coordinator is to take responsibility and leadership in developing our existing volunteers and recruiting/growing the number of volunteers at the Society. Essential is your ability to deploy them into tasks/roles suitable to their individual skills; to enable them to have a positive experience in supporting the work of the Society.

Main areas of focus volunteers are required for include;

• Service-user/Members events e.g. Annual General Meeting, face to face and/or online workshops and project activities/events, children’s activities;
• Supporting the Helpline team to have advice stands at national events e.g. British Society of Haematologists, ASCAT (Annual Scientific Conference on Sickle Cell and Thalassaemia), universities’ and Black History Month events and activities;
• Annual Children’s holiday – a 2-3 day event during the summer;
• Community outreach to support awareness raising / engagement;
• HQ office support;
• Social media activity;
• Fundraising e.g. supporting regional and national community fundraising;
• Co-ordinating volunteers to support the successful development of local SCD support groups.The role will be supported by the Fundraising Manager and work closely across all our staff teams.

To Apply:

Before applying, please ensure you have read through the full Job Description and Person Specification.

Then, please complete the Application Form and the Equal Opportunities Form and return the completed forms to fundraising@sicklecellsociety.org

For further information or if you have any questions, please email fundraising@sicklecellsociety.org

Key Dates:

• Closing date: Wednesday 19th April 2023 at midnight.
• Interviews: Wednesday 3^rd May and Thursday 4^th May 2023

Additional Notes:

• Please make sure that you demonstrate how you are suitable for this role in your application by referring to the person specification.
• Please note that we do not accept CVs and all applicants must reside in the UK.
• This post will require a Disclosure and Barring Service (DBS) check at Enhanced Level.

About the Sickle Cell Society

The Sickle Cell Society is the only national charity in the UK that supports and represents people affected by a sickle cell disorder to improve their overall quality of life. First set up as a registered charity in 1979, the Sickle Cell Society has been working alongside health care professionals, parents, and people living with sickle cell to raise awareness of the disorder. The Society’s aim is to support those living with sickle cell, empowering them to achieve their full potential.

Job Description and Person Specification: Volunteer Co-ordinator

Application Form: Click here for the Application Form

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Hours: 35 hours per week Monday to Friday

Salary: £29,500 – £31.000 (Plus NI & Pension)

Contract: Permanent

Line Managed by: Fundraising Manager

Responsible for: Supporting the delivery of the fundraising strategy as a whole with emphasis on Community Fundraising and CRM management. If necessary, extensive online training available to suit ability.

Location: The Sickle Cell Society, 54-56 Station Road, London, NW10 4UA – Flexible work considered with at least one day (Wednesdays) at Head Office based in Willesden Junction.

Job Purpose:

To assist the Fundraising Manager in the delivery of The Sickle Cell Society’s (SCS) Fundraising Strategy and on-going development to achieve its fundraising priorities and targets. An exciting and varied role we are seeking a strong team player, and someone with the confidence and initiative to help develop and grow charitable income. The post holder will be someone with the enthusiasm to want to learn and get things done.

The post-holder will work closely with the Fundraising Manager, and wider team to provide an engaging supporter journey and timely, efficient donor care to existing and new supporters for the Society. Responsible for helping the team meet our agreed income targets; the post-holder will be keen on developing its Fundraising career and interested in expanding its the use of CRM databases, data management and the production of reports for effective donor stewardship.

You will be responsible for the membership and donors’ database (Raiser’s Edge) keeping up to date and reporting back on results, whilst ensuring data compliance and implementation of data. You will be highly proficient in the use of business IT systems in particular Microsoft Excel to analyse data, and you will also have at least one year’s experience, or equivalent, in producing detailed and insightful reports.

A natural self-starter, with a ‘can-do’ attitude, you will enjoy playing an integral role in supporting the Fundraising Manager with the on-going development and growth of fundraising across income streams such us: celebratory giving, challenge events, community fundraising and corporate payroll giving initiatives. You will also liaise with colleagues to identify fundraising opportunities that might arise through their project work. These opportunities might be fulfilled through volunteers.

The post-holder will be a confident communicator and collaborator with proven relationship building and creative and innovative fundraising skills. You will also support the development of our fundraising communications, monitoring performance across all channels driving best practice and income growth. You will generate and develop engagement through Facebook by producing e-marketing fundraising communications and be responsible for your own copywriting, including thanking our wonderful donors via the most appropriate communication channels.

This varied role will give you the opportunity to further your fundraising skills across a broad range of income generating activities as well as build strong, professional relationships to benefit the SCS’ charitable objectives.

The post-holder will also be proactive seeking out new initiatives and market trends in fundraising across the UK charitable sector.

To Apply:

Before applying, please ensure you have read through the full Job Description and Person Specification.

Then, please complete the Application Form and and the Equal Opportunities Form and return the completed forms to fundraising@sicklecellsociety.org

For further information or if you have any questions, please email fundraising@sicklecellsociety.org

Key Dates:

• Closing date: Wednesday 19^th April at midnight.
• Interviews: Wednesday 3^rd May and Thursday 4^th May.

Additional Notes:

• Please make sure that you demonstrate how you are suitable for this role in your application by referring to the person specification.
• Please note that we do not accept CVs and all applicants must reside in the UK.
• This post will require a Disclosure and Barring Service (DBS) check at Enhanced Level.

About the Sickle Cell Society

The Sickle Cell Society is the only national charity in the UK that supports and represents people affected by a sickle cell disorder to improve their overall quality of life. First set up as a registered charity in 1979, the Sickle Cell Society has been working alongside health care professionals, parents, and people living with sickle cell to raise awareness of the disorder. The Society’s aim is to support those living with sickle cell, empowering them to achieve their full potential.

Job Description and Person Specification: Fundraising and Database Officer

Application Form: Download the Application Form here 

The post Paid Vacancy: Fundraising & Database Officer appeared first on Sickle Cell Society.

Post:  Communications Manager

Base:  Flexible, at home initially and at Sickle Cell Society Office, 54-56 Station Road, London NW10 4UA.

Reports to: Chief Executive

Responsible for: Communications and Social Media Officer

Working Hours: Part-time (21 hours per week) Monday-Friday, flexible

Salary: £27,000 – £30,000 pro rata

Job Purpose

To lead on designing and producing accurate and current information materials that support and inform people with sickle cell disorders and their families drawing on the expertise of the Society’s medical, scientific and nurse advisors. And to take responsibility and leadership for increasing the awareness of the Sickle Cell Society (SCS) with a wide range of stakeholders including our own 2,500 Membership, the wider sickle cell community and patients, and health, social care and education professionals. The post holder will be responsible for leading on the implementation and development of a wide range of internal and external SCS communications including the co-ordination and development of SCS annual report, Members’ newsletters, the SCS website, awareness events, and campaigns linked to Black History Month and World Sickle Cell Day and more.

The successful candidate must have experience of supervising other staff/volunteers or expertise in co-ordinating multiple projects to support and have oversight of the Communications and Social Media Officer post.

About the Sickle Cell Society:

The Sickle Cell Society (SCS) is the only national charity in the UK that supports and represents people affected by a sickle cell disorder. We provide information, advice and support to enable and empower individuals and families to improve their overall quality of life. Approximately 15,000 people in the UK have a sickle cell disorder. These inherited conditions predominantly affect people of Black African and Black Caribbean heritage; and to a lesser extent people of Mediterranean, Middle Eastern, South Asian and Central/South American heritage. We assist and enable people living with SCD to realise their full potential whilst successfully managing the challenges they face in living with this potentially life-limiting condition.

We are a small, friendly and close knit team of 14 skilled and highly committed staff (9 part-time / 5 full-time) and approximately 30 active volunteers. We are looking for a confident self-starter, with communications experiences, who will take the lead in driving forward and building on the national and global reach of our Communications strategy.

Key responsibilities and duties

1. Communications and Information

• To ensure accurate and good levels of information literature is available to people with sickle cell, their families, and other external stakeholders through timely co-ordination and production of the SCS bi-annual news and monthly e-newsletters and SCS website, including liaison with our medical advisors to ensure accuracy of information resources;
• To take the lead in coordinating the production of SCS Annual Report and Impact Report
• Work with external partners and our volunteer designers and across SCS teams to create and implement timely communications and media campaigns e.g. for World Sickle Cell Day and Code Red
• To work closely with SCS Parliamentary Officer and other team members to draft, co-ordinate and post press releases and responses to government consultations
• To act as key media contact and increase SCS media reach through seeking proactive opportunities for media opportunities and responding to media enquiries and press releases relevant to the SCS community
• Line manage the Communications and Social Media Officer to provide a seamless approach to all SCS communications across all channels, including social media/digital
• To support online delivery and communications for patient education events and the society’s AGM
• To maintain and develop the SCS ‘brand’ through the style guide
• To line mange the Communications and Social Media Officer and work closely with the Fundraising Manager to promote fundraising opportunities and raise awareness of fundraising campaigns
• Liaise with the wider team to draft and co-ordinate personal stories / case studies of the experiences of people/patients with sickle cell for use in a variety of SCS comms.

2. Managing the SCS Website and database

• To lead in developing the SCS website as required
• To manage and maintain the SCS website content
• To ensure the accurate integration of data between our membership data base and website
• To review the SCS website at regular intervals to identify opportunities for development.
• Overseeing the tracking of reach and growth of all comms channels inc web, social media, newsletter etc and reporting results quarterly to the senior management team

3. General

• To respond to press enquiries by telephone, emails and written correspondence
• To ensure that all work with partners, patients/families and other external stakeholders are managed effectively, and that regular liaison internally and externally, takes place.
• Work collaboratively across the charity to encourage and support consistent and SCS branded communications and information to all our stakeholders.
• To act as a member of the SCS team and carry out any reasonable duties as requested.

4. Skills and Experience

• Communications, journalism or similar qualification and/or proven experience of at least 3 years in a similar role
• Experience of leading on the development of successful communications, campaign and media strategies
• Demonstrable excellent copy-writing, editing and proof-reading skills
• Strong and enthusiastic communicator who is comfortable liaising with people at all levels
• Experience of co-ordinating and writing reports
• Creative eye for design and detail and understanding of developing powerful and engaging communications
• Excellent IT skills across a wide range of channels including website content management platforms, Microsoft, survey platforms, social media tools, graphic design, video editing and experience of Content Management Systems.
• A strong team player who is also self-motivated with the initiative to identify opportunities for campaigning and engagement.
• Ability to multi-task, meet deadlines and add value, develop in the role.

To Apply

Please complete our Application Form and the Equal Opportunities Form and return the completed forms along with your CV to info@sicklecellsociety.org before the closing date.

Please note that applicants must reside in the UK.

Closing date for applications: 28th March 2023

Interview date: Tuesday 11th April 2023

Job Description and Person Specification: Comms Manager Vacancy

Application Form: https://www.sicklecellsociety.org/wp-content/uploads/2022/07/SCS-Job-Application-Form-2022-002.pdf

The post Paid Vacancy: Communications Manager appeared first on Sickle Cell Society.

SCS are seeking a new Treasurer to join our Board of Trustees.

Our Treasurer will help to ensure that the board of trustees fulfils its duties and responsibilities for the proper financial governance of the organisation, including overseeing its strategic financial planning, financial viability, including ensuring that proper process and procedures exist for assuring all financial records, decisions and delegations are maintained.

Role of the Treasurer to the Sickle Cell Society Board of Trustees:

To assist the Chair, other honorary officers, the Chief Executive and  Finance and Administration Manager in ensuring that the board of trustees fulfils its duties and responsibilities for the proper financial governance of the organisation.

To maintain effective governance of the Society’s financial affairs, ensuring its strategic financial planning, financial viability and ensuring proper process and procedures exist for assuring all financial records, decisions and delegations are maintained.

Key Responsibilities

1. Strategic

• To work closely with the Chief Executive and Finance and Administrative Manager on all aspects of the organisation’s financial planning , reporting and monitoring.
• To advise the Chief Executive and Finance and Administrative Manager on the development and formulation of the organisation’s strategic planning, ensuring that the Society has the resources to deliver the strategy.

2. Financial

• In partnership with the Chief Executive and the Finance and Administrative Manager, ensure that the board of trustees receives regular and appropriate budgetary and financial information on the work of the organisation, including annual accounts.
• To identify and bring to the board of trustees attention any financial risks facing the organisation.
• To scrutinise the proposed annual budget, financial forecasts and financial reports and advise and guide the board of trustees accordingly.
• To ensure the organisation’s financial resources are sufficient to meet current and future needs, advise the board of trustees on the reserves policy and to ensure this policy is reviewed and monitored regularly.
• To oversee the appointment of external auditors and contribute to the annual audit process, including relevant meetings with the external auditors.
• To mentor and support the Finance and Administrative Manager in executing his/her responsibilities and achieving their goals.

3. Governance

• To assist the Chair, other trustees, the Chief Executive and the Finance and Administrative Manager in ensuring that the board of trustees fulfils its duties and responsibilities for the proper financial governance of the organisation, in line with current legislation by the Charity Commission as well as in the organisation’s charity constitution.
• To advise the board of trustees on financial implications and operational risks arising from board decisions.
• To keep the board informed of its financial duties and responsibilities.

4. General role of trustee

• To set and maintain vision, mission and values of Sickle Cell Society.
• To support the operational management of the Sickle Cell Society through its Chief Executive and his/her leadership team.
• To enable the overall direction of the Sickle Cell Society by developing strategic priorities, setting overall policy and evaluating performance against objectives.
• To ensure the Sickle Cell Society always complies with its governing document, charity law, company law and any other relevant legislation or regulations.
• To review and monitor the Sickle Cell Society risk register.
• To safeguard the good reputation and values of the Sickle Cell Society.
• To promote the Sickle Cell Society and always act in the best interest of the charity, never in the interest of yourself or another organisation.
• To act reasonably and prudently in all matters relating to the Sickle Cell Society.

5. Person Specification

• Experienced Accountant with a recognised professional qualification.
• Knowledge of financial regulations governing charities and companies.
• Able to commit sufficient time to the role and work of the organisation.
• Team player.
• Ability to think strategically and forward plan.
• Commitment to the cause of sickle cell and the work of the Sickle Cell Society.
• Ability to digest, present and critically evaluate a range of information, including written reports, statistics and verbal communications.
• Ability to act as an ambassador for the Sickle Cell Society.
• Good interpersonal skills.

Successful trustees will be appointed for a three-year term from the date of commencement.

Download our job description here: Job Description

How to Apply

To apply to become a trustee, Please complete our Application Form and the Equal Opportunities Form and return the completed forms along with your CV to info@sicklecellsociety.org before the closing date.

The completed for should then be sent to Miriam.williams@sicklecellsociety.org. 

Please note that this job would be suitable for UK residents as it requires attendance to regular board meetings at our London office.

Closing Date: 28th March 2023

Interview Date: Thursday 13th April

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We have now been informed that preliminary findings from the ongoing worldwide clinical study called STAND (NCT038147460) indicates no statistically significant difference between Crizanlizumab 5mg/kg Crizanlizumab7.5mg/kg and placebo in making a difference to a sickle cell crisis. However, these findings are inconsistent with previous trial results from the SUSTAIN (NCT01895361) trial. As a result of this regulatory bodies such as the European Medicines Agency (EMA) will undertake a review of Crizanlizumab to evaluate the impact of these contrasting results on its currently authorised use.

We would like to reassure those who are taking Crizanlizumab , or who may be contemplating taking it, following discussions with their Health Care Professional, that it is safe. However, if you have any concerns, we recommend that you speak to your Consultant Haematologist in the first instance who will determine the best option for each patient depending on their individual situation.

We will provide more information when we have it.

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