Accountable to: Medical Director

Hours: 12 days per annum

Salary: £350 a day

Length of contract: Fixed term, 24-months (post will be continued subject to the outcome of negotiations with funders).

Job Purpose
Clinical Lead – Sickle Cell Children & Young Person’s Peer Mentoring Programme Clinical Leads will be working in partnership with all London ICB’s. The aim of the London Children’s and Young Person’s Mentoring Scheme is to improve the health and wellbeing of young people with SCD through training, emotional support from mentors and peer-support, improve young people’s understanding and management of the condition, improve young people’s ability to negotiate transition from paediatric to adult services, encourage young people’s involvement in volunteering to support others with the condition and engage more with their local community.

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 SCD. 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 SCD. These inherited conditionals 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.

Person specification:

• Senior medical professional with Full and Specialist registration (and with a licence to practise) with the General Medical Council (GMC), or General nursing council (GNC) – E

• Experience in managing children or young people with sickle cell – E

• Demonstration of leadership qualities – E

• Experience of participating in quality or safety improvement projects including critical incident reporting – E

• Teaching/Training experience – E

• Child protection level 3 training – E

• Good organisational and communication skills – E

• Team-player with experience of multidisciplinary working – E

• Ability to develop good working relationships – E

• Commitment to service improvement programmes – E

• Experience of working in multi-ethnic and multicultural communities – E

• Higher degree – D

• Management qualification – D

• Formal teaching qualification – D

• Voluntary sector work – D

• Clinic experience with transition / teenage and young adult services – D

To Apply
Please complete the Application Form and send it to mentors@sicklecellsociety.org before the closing date
Please note all applicants must reside in the UK.
Closing date for applications: TBC
Interview date via Zoom or Microsoft Teams; TBC

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.

Job Description and Person Specification: Clinical Lead Sickle Cell Children & Young Person’s Peer Mentoring Programme 

Application Form: Download the Application Form here 

Equal Opportunities Form: Download and complete our Equal Opportunities Form here

The post Paid Vacancy: Clinical Lead – Sickle Cell Children & Young Person’s Peer Mentoring Programme appeared first on Sickle Cell Society.

Right now, we are taking registrations of interest for referrals to the new service. The registration form can be completed by a healthcare professional.

Eligibility criteria for the scheme :

You must be:

– A Child or a Young Person aged between 10-24
– A London resident
– A patient under the care of a London based GP Practice
– A patient under the care of a London based Health care trust.

Register here

We will shortly be advertising for staff for the new service, so please watch our website and socials for details, and share widely.

The post Peer Mentoring Scheme extended across London! appeared first on Sickle Cell Society.

This is a well-deserved honour which recognises the incredible difference Dr Shah brings to our communities, and the lives of countless individuals.

The post MBE Congratulations appeared first on Sickle Cell Society.

Play Makers (Youth and Family) x 3
Sickle Cell Family Retreat : 11th August 2023 (3pm) until 13th August 2023 (3pm)
Pioneer Centre, Shropshire
Pay: £400  for the weekend + any prep work beforehand (freelance – responsible for own
tax)
**Food and Basic Shared Accommodation included. We are able to contribute a little
towards transport if required**

We are looking for three fun, enthusiastic and energetic freelancers to support our Sickle
Cell Family Retreat from 11th-13th August at the Pioneer Centre, Shropshire.

The three freelancers will work with our Family Retreat Coordinator to deliver an educational and
exciting holistic experience for around 30 families who have at least one child aged between
6 and 15 years old who has sickle cell, a painful genetic blood condition.

This role will involve:

● Leading pre-planned activities for the group – both fun (e.g. arts and crafts, lego) and
educational (e.g. peer to peer advice sessions)
● Accompanying groups to activities and modelling excellent interactions with children
● Helping to make sure everyone knows what is happening and when
● Supporting and empowering the Sickle Cell Society volunteers who are supporting
the retreat – some of whom may be leading activities – making sure they have the
perfect amount of things to do and are getting enough rest!
● Facilitating conversations and friendships between families
● Helping to troubleshoot any issues and proactively providing solutions
● Helping to ensure the families with particularly young children are supported so that
they get the most out of the retreat
● Making sure the retreat is well documented with photos and videos and helping to
label and file these. This may include posting during a social media ‘takeover’
● Supporting quieter children or those finding things difficult to find a way to enjoy the
retreat – noticing the families who are on the sidelines or overwhelmed and need
some extra support to get involved
● Leading games to fill gaps between activities, encouraging volunteers to take the
lead with this too
● Encouraging those with sickle cell to take breaks and drink lots of water and general
monitoring to ensure that pain is not hidden – and ensuring activity providers are
doing the same, or are aware so that the activity is appropriate for our group.
● Helping to set up and tidy up activities, meeting and greeting providers, helping us
with health and safety (hand sanitiser, wiped tables, medication access, redistributing
bed pads etc) – anything where our Retreat Coordinator may need to be in two
places at once otherwise!
● Helping ensure our safeguarding and accessibility is tip top
● Standing in for our Retreat Coordinator or other members of staff when they take a
short break
● Making fun things happen! This might look like dancing at the disco, leading an
action song in the dining hall, putting on face paint, setting up a (safe) challenge etc

Tasks will be split based on skills, interest and experience. This role may involve early
mornings and/or late nights, depending on the requirements of the programme. It is likely the
role will involve some degree of speaking in front of the whole group.

We would also like one freelancer to drive the holiday equipment from the Sickle Cell
Society Offices in London to the Pioneer Centre and back. We are able to pay mileage for
this.

Freelancers will be accountable to Jessica, our Family Retreat Coordinator, for the duration
of the event.

Person Description
The ideal candidate for these positions will:
● Have experience in working with children and young people
● Have lots of energy and enthusiasm
● Be able to take initiative, problem solve and think on their feet
● Able to lead a group
● Good at planning exciting activities that keep young people engaged
● Have previous knowledge about sickle cell
One candidate should be able to drive and be willing to transport equipment from London to
Shropshire – though this is not necessary for all candidates.

A DBS check is necessary for all freelancers.

To Apply:
Please send an up to date CV and a short covering letter (no more than 500 words) to
jessica.boatright@sicklecellsociety.org by 9th July 2023.

The post Paid Vacancy : Freelance Play Makers appeared first on Sickle Cell Society.

Over time, though, people with sickle cell disorder may experience a few complications, such as iron overload. This article looks at how it arises, and the treatments available.

Why Blood transfusions?

Sickle cell disease (SCD) is the most common cause of stroke in early childhood and 24% of sickle cell patients have a stroke by the age of 45. [1] There is an increased risk for stroke in sickle cell patients because sickled red blood cells have a tendency to clot together, blocking blood vessels and causing a stroke when moving to the brain.

For patients deemed at risk, regular blood transfusions reduce the likelihood of clotting and therefore stroke.

Blood transfusions are also used on occasions to help treat other complications of SCD such as acute chest syndrome, acute anaemia, or acute priapism[2].

Our Sickle Cell Society Give Blood Send Love  programme reaches out to get more people to give blood.  We focus on black heritage communities  to: raise awareness of the need for ethnically matched blood to treat people with sickle cell; increase levels of confidence in giving blood and recruit new donors to the blood donation register.

Ethnically matched blood is required as it is less likely to be rejected by people having frequent blood transfusions, and some blood types, such as the Ro subtype, are more commonly found in people of African and Caribbean heritage than people with white heritage.

How do Blood transfusions cause Iron Overload?

Blood transfusions are an important part of sickle cell care, and we strive to encourage more ethnically matched blood donations in order to service the needs of people living with the condition.

Sickle cell patients only experience iron overload after several blood transfusions have been administered[3]. In the absence of blood transfusions, iron levels are balanced in the body through control of the absorption of dietary iron. The body has no natural mechanism to excrete (or get rid of)  iron, which is why additional iron from blood transfusions is stored predominately in the liver, the primary iron storage site.

The degree of iron accumulation depends on the transfusion regime[4]. In the UK, the proportion of adult sickle cell patients receiving regular blood transfusions increased from 15% in 2000 to 19% in 2009, putting more patients at a higher risk of iron overload[5].

Why is Iron Overload problematic?

Iron is an essential element for blood production, so having extra iron in the body sounds like it might be a good thing. In fact, increased liver iron is toxic. If not managed, it can lead to fibrosis, cirrhosis and a higher risk of developing liver cancer. In a study of 141 deaths of SCD patients between 1976 and 2001, iron overload was found to be present in about a third of patients, with 7% of the deaths directly linked to iron overload.[6] As such, patients at risk of iron overload are treated with iron-removing medicine; drugs called ’chelators‘. Iron chelators work by binding to the extra iron so that it can be removed from the body through urine and/or faeces.

How is Iron Overload Diagnosed?

Ferritin is a protein inside your cells that stores iron. It allows your body to use the iron when it needs it. The amount of ferritin in the blood (serum ferritin level) is related to the amount of iron stored in your body. Measuring serum ferritin is used as an indirect indicator to tell us if there is too much iron in the body.  It helps predict overall trends, however, its ability to accurately tell us if there is too much liver iron,  is limited.

Historically, biopsy was used to measure the quantity of iron in the liver. This is a medical procedure where a small sample of tissue is taken for examination. Nowadays, this invasive procedure is no longer required to accurately assess liver iron loading. Instead, magnetic resonance imaging (MRI) is used as a non-invasive, pain-free alternative to quantify the liver iron concentration (LIC).

There are different MRI methods available. In the UK, FerriScan[7] is the most commonly used method to measure iron overload in sickle cell patients.

How does a Liver MRI work?

Depending on the MRI method used, the patient spends about 10-15 minutes in the MRI scanner. A contrast agent – a dye used to improve the visibility of tissues in the body during an MRI- is not required, but some methods require one or more breath-holds. The MRI images are then used to quantify the patient’s liver iron concentration (LIC). This is done either by analysis of the images by a hospital’s radiologists, by specialist external providers, or through automatic analysis using novel methods such as FerriSmart[8]. The resulting LIC report then helps doctors to make decisions about any adjustments that need to be made to iron chelator drug dosages.

A liver MRI test is typically performed annually in the presence of continuous blood transfusions and the need for iron chelation therapy.

Why does Liver MRI Matter for iron Chelation therapy?

Iron chelation therapy reduces the risk of organ damage from iron overload. It reduces tissue iron to a level at which damage no longer occurs.

Measurement of liver iron concentration helps doctors to decide on when chelation therapy should be started, whether the chelator dose should be increased or decreased, and when iron chelation therapy should be stopped.  In this way, tissue iron can be maintained at safe levels while minimising the risks of chelator toxicity.

Getting help

Iron overload is a complication of blood transfusions over time for sickle cell patients. However, blood transfusions are still an important therapy, and relied upon by many people living with the condition. Give Blood Send Love aims to increase the numbers of donors, and we encourage people to donate for World Sickle Cell Day.

If you have any questions about iron overload, or treatments for iron overload, please speak to your nurse or consultant, or reach out to our Sickle Cell Society helpline  sicklecellsociety.org/helpline/

[1] Verduzco, L.A., Nathan, D.G. (2009). “Sickle cell disease and stroke”. Blood (2009) 114 (25): 5117-5125.

[2] Howard, J. (2016). “Sickle cell disease: when and how to transfuse.” Hematology Am Soc Hematol Educ Program 2016(1): 625-631.

[3] Porter, J., Garbowski, M. (2013). “Consequences and management of iron overload in sickle cell disease”. Hematology Am Soc Hematol Educ Program (2013) 2013 (1): 447–456.

[4] Inati, A. et al. (2010). “Iron overload indices rise linearly with transfusion rate in patients with sickle cell disease” Blood. 2010 Apr 8; 115(14): 2980-1

[5] Drasar, E. et al (2011). “Blood transfusion usage among adults with sickle cell disease – a single institution experience over ten years”. Br J Haematol. 2011 Mar; 152(6): 766-70.

[6] Darbari, D.S. et al. (2006). “Circumstances of death in adult sickle cell disease patients” Am J Hematol. 2006 Nov; 81(11): 858-63

[7] https://ferriscan.com/

[8] https://ferriscan.com/ferrismart/

The post Iron Overload in Sickle Cell Disease appeared first on Sickle Cell Society.

Monday 19th June is World Sickle Cell Day

This year our theme is “Celebrating Progress” and we are celebrating the progress which has been made in recent years in terms of medical advances for people living with Sickle Cell, Improved Standards of Care (No one’s Listening) and raised awareness to talk about topics like Priapism.

The Sickle Cell Society supports and represents people, patients and families affected by sickle cell disorder to improve their overall quality of life. 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.

Launch of new Priapism Animation

We’re also celebrating the launch of our new animation and information page on Priapism. This project is the culmination of a multitude of hard work by SCS and other stakeholders to create a valuable resource for young men who may be experiencing Priapism.

We would love for you to join us and help raise awareness amongst your friends and families.

We have put together ideas and resources, which you can use on and around World Sickle Cell Day 2023.

Interested in fundraising for us?

World Sickle Cell Day is the perfect opportunity to run an event or fundraiser to let people in your community know more about sickle cell and help support those living with the disorder.

We would love to support you in running a fundraising and awareness event. All you need to do is visit our website, fill out the fundraising form and send it to our fundraising team.

The form can be found here: http://www.sicklecellsociety.org/fundraising/

Coming up with ideas can be difficult, so here are a few suggestions:

• Sponsored run, walk, or cycle
• Hold a Come Dine with Me themed evening with your friends
• Organise a quiz night
• Turn £10 into £50  – buy a sponge and bucket to clean 12 of your neighbours cars for £5

Spread the word!

If you are running an awareness and fundraising event or fundraiser, then why not share it with your local newspaper? Local papers love to share what people in their community are doing and it is a great way to raise even more awareness of World Sickle Cell Day. If you would like to speak to our communications team about us sharing your news on our social media channels or in the media please email Clare.rudd@sicklecellsociety.org

Make a difference

Another great way to celebrate World Sickle Cell Day is to make a difference to those who have sickle cell disorder by donating to the Sickle Cell Society.

We rely on your kind donations to keep doing the work we do. Every donation allows us to reach more people, run more activities, and improve the lives of those living with sickle cell.

If you’d like to donate visit www.sicklecellsociety.org/donate/

All social media assets and information to promote World Sickle Cell Day 2023 are available here

The post World Sickle Cell Day 2023 appeared first on Sickle Cell Society.

The post All you need to know about Gene Therapy and New Therapies for Sickle Cell Patient Education Day – 1st July appeared first on Sickle Cell Society.

The event will also include a performance from the popular B-Positive Choir, as seen on the Mobo Awards and Britain’s Got Talent, and food at 10am.

This event will take place from 10am – 2pm at the Cavendish Conference Centre, 22 Duchess Mews, London W1G 9DT. (7 mins walk from Oxford Circus).

We will also be hosting the event online and so if you can’t join us in person, you can register to watch the event online.

Book your free tickets here http://www.bit.ly/patient-education-day-23

AGENDA:

10.00 Registration – Teas & Coffee

10.15 Welcome address by Mr John James

10.30 B Positive Choir performance/Entertainment

11.00 Sickle cell – what treatments are currently available and why do we need curative treatments with Dr Rachel Kesse-Adu

11.20 About Bone Marrow Transplant with Dr Ben Carpenter/Dr Victoria Potter

11.40 About Gene Therapy with Professor Josu Delafuente

12.00 Tea Break

12.15 Live Panel Discussion – patient post-transplant/patient in run up to transplant/gene therapy patient. With Mr John James/Professor Josu Delafuente/Dr Ben Carpenter or Dr Victoria Potter/ and patients x 2

A psychologist

SC Specialist Nurse

13.00 Thanks and closing remarks by Mr John James – SCS Chief Executive

13.10 – 1400 Lunch

Please contact Sandra Reyes at the Sickle Cell Society with any questions you have about the event via email: Sandra.reyes-hayduk@sicklecellsociety.org

The post All you need to know about Gene Therapy and New Therapies for Sickle Cell appeared first on Sickle Cell Society.

Join us on the lower floor of the Saint David’s Dewi Sant shopping centre, Bridge Street, Cardiff CF10 2EF

11am – 7pm on Thursday 22nd June 2023.

The post Free Service – get tested for sickle cell and thalassaemia in Cardiff 22 June 2023 appeared first on Sickle Cell Society.

Post:  Genomics and Sickle Cell Partnership Manager

Base:  Flexible, at home, at Sickle Cell Society Office, 54-56 Station Road, London NW10 4UA and at Genomics England office 1 Canada Square, Canary Wharf London.

Reports to: Chief Executive with close relationship to Community Manager for Diverse Data at Genomics England

Responsible for: No direct reports

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

Salary: £27,000 – £30,000 pro rata

Contract: 18 months

Job Purpose

To coordinate and ensure the successful delivery of a partnership programme between Sickle Cell Society and Genomics England. This includes working with the James Lind Alliance to deliver a Priority Setting Exercise for future genomics research on Sickle Cell.

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.

Key responsibilities and duties

Support the delivery of a Priority Setting Partnership project with Sickle Cell Society and Genomics England:

• Organising teleconferences, Steering Group meetings and workshops for PSE and wider partnership activities
• Recruitment of individuals attending workshops: members of public, patients, experts, etc.
• Writing and following up on action notes
• Managing communications with stakeholders and the wider community e.g., liaise with Comms Leads at GEL and SCS to create relevant content
• Prepare any further supporting materials needed for meetings
• Communication activity such as preparing a website, communicating via e.g., Twitter
• Support producing and publicising the survey and downloading the survey results ready for the Information Specialist for PSP

Skills and Experience

• Engagement, project management or similar proven experience of at least 3 years in a similar role
• Experience of delivering on successful communications and health engagement projects
• Strong and enthusiastic communicator who is comfortable liaising with people at all levels
• Experience of co-ordinating and writing reports
• Eye for 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
• An interest in health research, rare conditions and genomics

To Apply

Please complete our Application Form and send it 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:  Friday 30 June 2023

Interview date: Thursday 27 July 2023

Secondments from other organisations will be welcomed.

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: Genomics and Sickle Cell Partnership Manager

Application Form: Download the Application Form here 

Equal Opportunities Form: Download and complete our Equal Opportunities Form here

The post Paid Vacancy: Genomics and Sickle Cell Partnership Manager appeared first on Sickle Cell Society.