If you have a question that you want to ask us, please select from the following topic areas below:
Media and Press
Q: I would like you to share my research/call for participants
A: We receive many requests to share research or for participants to take part in research projects. We may consider promoting your request, however you need to be aware that as our members get many requests, there may be a low take up. You should also look at other avenues of promoting your request, for example the sickle cell and thalassemia centres or support groups. We may also feel it is not appropriate for us to share.
Before getting in touch, please make sure you can provide us with the following (if applicable):
- A copy of NHS Health Authority Research approval or equivalent from your educational establishment showing you have ethical approval
- Background to your research
- A list of the questions you propose to ask/link to you survey
- Participant information sheet
- Details of how you plan to conduct the interview, e.g. face to face, skype, email, survey
- Details of the risk and benefits of the research
- Information about whether participants will be compensated for their time and travel
- On completion of the research, a copy of the outcome.
If you have the relevant information, please email it to info@sicklecellsociety.org
Q: I would like to use an image or graphic from the Sickle Cell Society website/leaflet
A: All our graphics are copyrighted but we are usually happy for people to use them to raise awareness of sickle cell. However, we stipulate that you credit the image to us, and where possible, please link back to our website. Please make sure that this isn’t in a way which implies we endorse your work.
Our images are often real people so we can’t give permission for their images to be used by anyone else.
Q: I would like to write a blog or article for the Sickle Cell Society
A: We are always looking to hear from people living with sickle cell. We aren’t able to publish everything, but read anything which is sent to decide if it is right for us. If you would like to write a blog or article, you can email it to matthew.neal@sicklecellsociety.org
Please note that we cannot pay for any articles and will only publish articles relevant to sickle cell and that we feel is appropriate for our audience.
Q: Do you have statistics on sickle cell or trait?
A: Statistics on sickle cell & trait can be found here: www.sicklecellsociety.org/about-sickle-cell/
Other research reports can be found here: www.sicklecellsociety.org/resources/
Volunteering
Q: What skills and experience do I need to volunteer?
A: For most of our volunteer roles, we simply ask people to be reliable and have a willingness to learn. Nevertheless, some of our roles do require to have specific knowledge and experience. Do have a look at our role descriptions for further guidance on this.
Q: Is there an age limit to volunteering with the Sickle Cell Society?
A: In most cases you will need to be over 16 years of age to volunteer independently and under 18s will be asked for parental consent. Younger people may get involved in some aspects of volunteering with us if they are accompanied by a responsible adult. We do not have an upper age limit for volunteers but there may be situations that require us to ask someone to stop volunteering – for example when health issues are considered a risk to the person concerned or others around them.
Q: Do you have a minimum number of hours that I need to give?
A: No. You decide the number of hours you want to volunteer depending on you and your circumstances. Some of our volunteers volunteer once a month, some undertake volunteering several hours per week. We also have a range of one-off opportunities. Have a look at our volunteer role descriptions to find the right fit for you
Q: Will volunteering affect my benefits?
A: Undertaking volunteering should not affect your benefits. If looking for employment, you simply have to show the job centre you are still actively looking for work.
Q: What expenses do you provide for volunteers?
A: Volunteers will be reimbursed for public transport travel expenses incurred through Society work. Reimbursement of taxi fare expenses will be allowed in exceptional circumstances, and must be pre-arranged through the Volunteer Co-ordinator/Project Manager. When it is necessary to travel by car or motor bike, mileage may be claimed at 35 pence per mile for car and 24 pence per mile for bike.
Where volunteers are working for the Society for 5 hours or more in any one day, a meal will be provided by the Society, or meal expenses will be reimbursed up to the value of £5.00.
Fundraising
Q: How do I explain what the Sickle Cell Society does?
A: The Sickle Cell Society is the only national charity in the UK that supports and represents people affected by sickle cell disease to improve their overall quality of life. We provide information, advice, advocacy, respite, support services, hold talks, patient education seminars and training.
Q: What is the best way to collect money and donations for a sponsored event?
A:The best way to get people to donate money is to set up an online sponsorship page. These pages allow you to personalise your campaign, donate, promote your event, collect Gift Aid and interact with your donors in just one click! They will also send your funding raised directly to us, so you do not have to worry about that part either. Find out how to set up your own online fundraising page here: https://www.sicklecellsociety.org/fundraising/
Q: How do I pay my money and donation in?
A:We accept donations in cash, by cheque, BACS (bank transfer) and online payments.
If you would like to send us a cash donation or a signed cheque you can do it to our Head Offices using the following postal address: Sickle Cell Society, 54 Station Road, NW10 4UA, London.
In the case you prefer to proceed with an online donation you can do it through the “Donate now” section in our website here.
If you decide that a bank transference is the best way for you to proceed please contact our Fundraising Officer and we will send you the details required.
Q: How do I know that my money and donations have reached you?
A: It can take us a few weeks to process your donations once we have received them, but as soon as we do receive your donation we will send you a thank you letter by way of receipt.
Please, be sure that we have your contact email and reference used in the transaction so we can locate your donation and send you the receipt.
Q: I am a tax payer, how do you claim Gift Aid from my donations?
A: As a registered charity, the Sickle Cell Society is allowed to claim back an extra 25p on every £1 donated to us in gift aid, with no extra effort for the fundraiser.
We need individual declarations for all donors. When donating through our website you can select the option “I am a UK tax payer” after reading the terms and conditions, and if you are donating in cash or cheque we would need you to fill the Gift Aid Declaration Form and send it forward to our Fundraising Officer.
Q: How do I claim Gift Aid on the money I raise in my online campaign or event?
A: For us to be able to claim gift aid you need to check the sponsor or donator is a UK tax payer, record their home address, postcode, donation amount and make sure they tick the Gift Aid box on your sponsor form or web page. Most of the websites ask for those details during the donation process, but if you are collecting cash donations you will need to use a form.
Find out more about Gift Aid here.
Q: Can I donate the money I raise to a particular country or project?
A: We aim to reach the maximum number of people in our community and redirect our resources where the are needed the most, so we would really like your donations to be ‘unrestricted’. This means that you are not restricting what project or area your fundraising and donations are spent on. It also helps our work to be more efficient by reducing our administration costs, making your money and donations reach more people.
Unrestricted funding also helps us to respond quickly and efficiently, wherever and whenever disaster strikes. When an emergency arises, a prompt response is vital, and COVID pandemic is the best example to illustrate this need.
Said that, it is completely up to you to decide where your donations will be invested, and if you communicate your willing to redirect your funding to an specific project we will locate it following your request.
Events
Q: How can I advertise and promote my event?
A: Social media is a great way to share your fundraising page or set up an event. We also have a social media toolkit! From cover images to profile pictures, you can find all you need to customise your social profiles here.
Why not contact your local newspapers for advertisement, put up posters in your area, contact local websites and post on community forums too?
Q: Where can I get benefit or advice information?
A: There are a few places that can give advice on benefits and may other things. Here are a couple: Citizens Advice and Turn2Us bother have facility which will show where and how you can get help or advice on a wide range topics.
Q: I am a full-time student; what benefits are available for me?
A: Please visit Turn2Us which has information for students and benefits.
Q: What benefits are available to me?
A: Benefits Calculator: Please see this link to find out what benefits you can claim.
Help with prescriptions: You may be able to claim help with your prescription costs if you are on certain benefits or partial help if you are on a low income. Please see this link which has further information.
Q: Is there any support to help me with employment?
A: The Access to Work and Disability Confident Employer schemes are available for employees and employers. Get support in work if you have a disability or health condition (Access to Work)
Q: What support should my employer give me as I have sickle cell?
A: Please see the following links for support with work.
Get support in work if you have a disability or health condition (Access to Work)
Disability Confident employer scheme and guidance
Q: What are suitable jobs for a person with sickle cell?
A: Please see the following link on Sickle Cell Work and Employment
Q: I am moving from DLA to PIP and have to reapply for benefit, can you help?
A: Please see here for guidance.
Q: Can you help me applying for PIP?
A: PIP claims are not assessed on your medical condition, but on your ability to carry out day-to-day tasks, mental health and mobility. You can work and claim PIP and any savings will not affect your claim.
The Citizens Advice provides a step-by-step guide on filling out the PIP claim form.
An overview of Personal Independence Payments can be found on the government website
If you would like to go ahead in applying, please see the information below that will help you fill out the PIP form.
Notes on filling out the form:
- PIP claims are not assessed on your medical condition, but on your ability to carry out day-to-day tasks, mental health and mobility. Therefore, you must be clear as to how the sickle cell (and any other medical condition) affects your ability to cook, eat, shower, walk, etc.
- In each section of the form write what it is about the specific task that you have difficulty with, highlighting when/how/why you may need assistance or supervision (due to e.g. crisis pain) and include information about any additional aids that you use.
e.g.
‘Due to the severe joint pain I experience most of the week, I find it very difficult to get out of bed and wash myself. I have to have someone physically help me get out of bed and into the bath. Due to the pain and physical exhaustion, I cannot lift up my arms to wash myself, and so my mum will use a flannel to wash me. Without her supervision and help, it would be very unsafe for me to wash myself and I could slip and fall because of the weakness in my legs.’
‘When I walk I am in pain all the time and after 15metres I have to stop because the pain is very intense and I can no longer continue. I am exhausted and breathless from the exertion of walking and am unable to continue without taking a break of 10 minutes to ease the pain. It takes me 2 minutes to walk a distance of 15metres and I cannot walk without support from another person.’
In looking at whether a descriptor applies, it should be done in a reasonable time period and to walk 15 metres in 2 minutes is more than twice as long as someone without a disability.’ - The PIP form is assessed on a point system. That means that your answers will be marked between 0-12 depending on the question. You must score between 8-11 points on the daily living component and mobility component to qualify for the standard rate of that component, and 12+ points to receive enhanced for each. Download the guide ‘PIP and other benefits at 16’ which the marking system is explained from page 17 onwards. Use the marking system to formulate answers.
Final important information:
- Most PIP applications go through to appeals, so do not be disheartened if yours does. If you feel you are eligible, keep fighting for your case.
- It must be made very clear in your case argument that your sickle cell causes disruption in going about tasks/activities on a daily basis. You must explicitly state/evidence that the medical condition causes difficulties over 50% of the time (or at least 6 months of the year) otherwise the individual affected will not be eligible for PIP. You can evidence that either in regards to length of crises and recovery times, the effects of associated conditions (e.g. osteomyelitis, avascular necrosis), or general daily pain, aches, tiredness, infections etc.
- You should put ‘bad days’ and ‘better days’, as ‘good days’ implies you won’t need extra help on these days.
- Highlight risks to health and safety if you did not have assistance.
- Ensure you include medical evidence to go alongside the application. It is best if a doctor/haematologist writes a letter, commenting on the nature of the condition, and specifically how the sickle cell affects your ability to carry out day-to-day tasks and mobility. You can also keep a journal of your general daily condition and care/supervision required to present with the form. The more evidence, the better.
- Consider carrying out a couple of walking tests when you are having a crisis and when you are not having a crisis. This simple test basically requires you and a friend to time how long and measure how far you can walk without experiencing pain, discomfort and breathlessness, and without needing to stop and take a break. Use this to calculate how many points you should score on the mobility component.
Usually, after you have submitted your form, you would be invited to a face-to-face medical assessment. However, because of the coronavirus pandemic this may be different. Please see the link below from Disability Rights regarding how the PIP claim will be assessed.
If the coronavirus situation changes and things go back to normal.
After you have submitted your form, you will very likely be invited to a face-to-face medical assessment. The medical consists of several parts:
- First, the health professional should read any documents relating to your case.
- Next, they ask you a series of questions about your condition and about your everyday life. They use drop down lists, multiple choice answers and text boxes to record information on a computer as they go.
- Then they may carry out a brief physical examination, checking things like your eyesight, your blood pressure and the range of movement in your limbs, if any of these are relevant to your condition.
- Whilst all this is going on they will be making informal observations about the way you look and behave. These observations can begin before the scheduled appointment time, and last up until after you have left the assessment centre.
- Finally, after you have gone, they will list which descriptors (points) they consider apply to you and justify their conclusions.
Please ensure you are consistent with the information provided at the assessment to what you have written on the form.
Q: Can you help with my PIP mandatory reconsideration appeal?
A: You can challenge a decision by asking for a mandatory reconsideration. This must be done within 1 month of the day of the decision letter, e.g. if the decision letter is dated 28th of October then your mandatory reconsideration must arrive at its destination before 28th of November.
Firstly, phone the DWP and ask for a copy of the health care professionals report to be sent to you. This would enable you to see what was written and address any inconsistencies and corrections when drafting the mandatory reconsideration. However, please do not delay in sending your mandatory reconsideration request if you are close to the time limit.
Please see the link below about how to create a mandatory reconsideration letter.
PIP claims are not assessed on your medical condition, but on your ability to carry out day-to-day tasks, mental health and mobility. Therefore, you must be clear as to how the sickle cell (and any other medical condition) affects your ability to cook, eat, shower, walk, etc. Ensure you include medical evidence to go alongside the application. It is best if a doctor/haematologist writes a letter, commenting on the nature of the condition, and specifically how the sickle cell affects your ability to carry out day-to-day tasks and mobility.
Also see, pages 32 and 33 of the guide ‘PIP and other benefits at 16’ and, ‘How to win an PIP Appeal’
Q: Can you help with my DLA application for my child?
A: DLA – Disability Living Allowance
Sickle cell symptoms like pain, fatigue, stress and depression resulting from normal activities meet the criteria for disability and the majority of people with SCD are deemed to be disabled. Even if your condition is controlled, you may still be considered disabled in the eyes of the law. This is because stress or adverse temperatures could trigger a crisis.
DLA application forms should be filled out as though currently experiencing a sickle cell crisis, for a better representation of your needs.
Sickle Cell patients must demonstrate that their condition affects them over 50% of the time.
Contact for Families with Disabled Children (Contact), has a DLA guide, which has useful information about the process and step-by-step instructions (see pg.17 onwards) on how to fill out a DLA application form.
Contact also has a helpline number 0808-808-3555 with a service that is very knowledgeable about DLA for children.
To make a successful claim for DLA, you need to show that your child needs substantially more care or supervision in comparison to a child of the same age, who doesn’t have a condition.
Many children with sickle cell disease are awarded DLA. Here are some notes that may be useful:
- It is important for you to highlight the debilitating and unpredictable nature of sickle cell, which requires frequent/regular/prolonged supervision
- And that this supervision/hands-on support goes beyond the needs of other children their age e.g. personal care during the night; when walking (see pg.11)
- PIP rules state that individuals’ ability to carry out daily tasks/mobility must be affected over 50% of the time for their claim to be accepted, which poses a challenge for individuals with sickle cell as their symptoms are very irregular and unpredictable. This is partly true for DLA also, and so you should highlight how extra supervision/support is needed even when the child is not in crisis, potentially due to associated condition (e.g. avascular necrosis, osteomyelitis), as well as due to the general day-to-day side effects of sickle cell e.g. tiredness, low physical energy etc, specifically commenting on how this affects their mobility and need for extra care.
- Write ‘bad days’ and ‘better days’, as ‘good days’ implies the child won’t need extra help on these days
- Ensure you provide medical evidence to go alongside the application. It is best if the child’s doctor/haematologist writes a letter, commenting on the nature of the child’s condition regarding extra care/supervision, and mobility. You can also keep a journal of the care provided and your child’s general daily condition to present with the form. The more evidence, the better!!!
- If your application goes to appeal, you must not be disheartened; many applications go to appeal and still win. If your application is not successful, see page 39 of the guide which has information on how to challenge the decision
- If you are successful with your DLA application, see page 54 of the guide which explains how an award of DLA can affect other benefits.
Q: Can you help with my DLA appeal?
A: Download ‘How to win a DLA appeal’. Also page 39 of the guide DLA guide by Contact for Families with Disabled Children, has information on how to challenge the decision.
Q: Can you give me information on managing sickle cell?
A: Managing Sickle Cell: Present. Today, over 99% of those with SCD born in the UK will survive to adulthood and mean life expectancy is in the 50s to 80s. Some patients still die early and have an increasing burden of chronic disease complications as they age, but ways of working are always improving.
VIDEO
First and foremost, I would like to reassure you that with the right care and treatment, individuals with sickle cell disease live long and full lives.
In order to live healthily with sickle cell, it’s really important that you/your child avoids infection e.g. having all of the routine vaccinations (flu-jab, meningococcal, pneumococcal, hepatitis B), and taking antibiotics (usually penicillin) and folic acid every day.
Folic acid is also good for stimulating red blood cells and improving anaemia. Foods rich in folic acid include leafy green vegetables e.g. broccoli, kale, spinach, peas; dried beans; almond milk. B-12 vitamin is also necessary for the production of red blood cells in the bone marrow. Foods rich in B12 vitamins e.g. fish, beef, lamb, cheese and eggs. These foods can help to increase haemoglobin levels, however, please ensure the food is age-appropriate.
It is also important that you/he/she remains hydrated, relaxed and calm, stays warm, avoids strenuous exercise, and eats well. These factors are major causes of crisis.
A further treatment is Hydroxyurea which research has shown to prove positive results.
For any other health concerns and ensuring you/your child receives the best treatment, please do ensure you speak to your haematologist/ your child is referred to a haematologist.
In regards to general care, please click on this link
You may also benefit from speaking to other individuals living with sickle cell, so please do check out our peer-to-peer service
In regards to general care, please click on this link
We also have a real lives blog and some podcasts which you may find interesting.
Furthermore, take a look at the resources we have on our website: https://www.sicklecellsociety.org/resources/
Here you can find documents that will provide you with an understanding of sickle cell, how to manage sickle cell, hydroxyurea therapy, and information regarding sickle cell and employment/school/hospital.
In addition, we have produced ‘Standards for the Clinical Care of Adults with Sickle Cell Disease in the UK 2018’ which you can view or download at this link.
And also Sickle Cell Disease in Childhood: Standards and Recommendations for Clinical Care.
You may find information of help from one of our past programmes, Self Over Sickle programme (SOS) which promoted improved physical, psychological, social and emotional wellbeing, primarily for young people aged 16-25. Focusing on areas of transition from moving away from home and dating to pursuing a career and raising a family.
Q: I am a parent with a child with sickle cell and would like advice on best ways to manage my child’s condition.
A: Here is a link to ‘A parent’s guide to managing sickle cell disease’. It has a lot of useful information.
You may also find the video by parents on children at school
We also have produced the two following easy to read publications for children:
Did you know about sickle cell ages 5-10
Did you know about sickle cell ages 11-16
You may also find useful – Sickle Cell Disease in Childhood: Standards and Recommendations for Clinical Care.
Q: Is there any information on nutrition and sickle cell?
A: Currently there is not much information about sickle cell and nutrition, although you may find it helpful looking at some personal accounts of other people with sickle cell at the link below.
In order to live healthily with sickle cell, it’s really important that you avoid infection e.g. having all of the routine vaccinations (flu-jab, meningococcal, pneumococcal, hepatitis B), and taking antibiotics (usually penicillin) and folic acid every day.
Folic acid is also good for stimulating red blood cells and improving anaemia. Foods rich in folic acid include leafy green vegetables e.g. broccoli, kale, spinach, peas; dried beans; almond milk. B-12 vitamin is also necessary for the production of red blood cells in the bone marrow. Foods rich in B12 vitamins e.g. fish, beef, lamb, cheese and eggs. These foods can help to increase haemoglobin levels.
Eating a varied diet which includes plenty of fresh fruit and vegetable is important. Foods that contain Vitamin D such as oily fish and eggs are important as Vitamin D deficiency is very common not only in the general population but also in sickle cell disorder and may exacerbate bone pain. Sunlight on bare skin is a good way to increase Vitamin D intake so every opportunity should be taken to benefit from the sun, if only at an open window or on a balcony, if sitting in a garden is not feasible.
Here is some information from the NHS about healthy eating which is general information and not specific to someone with sickle cell.
Your consultant may be able to refer you to a dietitian to avoid any nutritional deficiencies in your diet.
Please see the this link.
Also visit blogs posted via this link.
Q: Do you have information on stem cell transplants?
A: Speak to your haematologist regarding stem cell transplant. Your haematologist should be able to advise whether a transplant could be suitable for you in regards to your medical history etc. However, there is no way of telling how you may respond to this treatment. Usually, stem cell transplants are carried out in the UK as a ‘last resort’ in children and young adults, when they are not responding to any other treatments. This is due to the risks attached: patients are at higher risk of catching life-threatening infections due to chemotherapy and the immunosuppressants taken to avoid risk of graft-versus-host-disease (GVHD; when the donor cells attack the host cells). GVHD that does not respond to treatment can lead to organ damage or even death. A further risk is graft failure (when the donated bone marrow fails to take). Each risk has a 5-10% chance of occurring.
Developments of bone marrow transplants are being developed e.g. whereby chemotherapy is not needed, reducing the risks involved, however, recipients still require immunosuppressants. This treatment may still be in its early research stages, carried out by doctors in Nigeria and Chicago. Please contact University of Ibadan (Nigeria) or University of Illinois for further questions.
This link from the NHS provides information about bone marrow transplant.
Despite the financial costs and risks involved, many individuals do have successful bone marrow transplants here in the UK. After speaking to a haematologist, you may want to start seeking healthcare providers that carries out the treatment, e.g. Imperial Private Healthcare. One of their first steps would be to source a donor. The donor will ideally be a healthy sibling who is a cell/tissue match. There is about a 1 in 4 chance that a sibling will have matching tissue and be a suitable donor. If they are not suitable, the doctors may search for a match using the British Bone Marrow Registry or Anthony Nolan Trust.
Q: Do you have information on hydroxyurea?
A: Hydroxyurea/Hydroxycarbamide is a medication that is used in the management of sickle cell.
Please see this guide from Guys and St. Thomas’ Hospital which has more information about this. Page 12 has information about fertility.
We also have information on our website about hydroxyurea, please see the links below for further information.
If you have any further specific questions, please discuss these with your haematologist.
Research links for hydroxyurea:
Q: Can I have some information/guidance for sickle cell trait?
A: The Sickle Cell Society do not give medical advice and always refer that you speak to your GP or someone on your medical team. Below is some general information we have collected about sickle cell trait for you to consider. Also, some say food impacts your body and a natural holistic approach of food could help.
- Sickle cell trait means you carry one copy of the sickle cell gene (HbS) and one copy of the normal haemoglobin gene (HbA).
- If you have the trait, it means your body produces a very small amount of sickle haemoglobin, which means that under certain circumstances, your red blood cells can sickle.
- Because most of the haemoglobin in your body is normal, the majority of people with the trait don’t have any symptoms at all, and might not even think to get themselves tested.
- Everyone SHOULD get tested because if you’re a carrier (have the trait), your children could have sickle cell disease if the other parent is also a carrier.
- Being tested is also important if you’re having surgery: there’s a slightly higher rate of complications during surgery if you have the trait. However, if your anaesthetist knows, they can make sure you have extra oxygen, which reduces the chances of complications.
- Why oxygen? Lack of oxygen is one of the known causes of complications in people with sickle cell trait. So be careful if you’re at a high altitude (e.g. at the top of a mountain, long-haul flights).
- Other known triggers are high atmospheric pressure environments (such as scuba diving) and dehydration… so make sure you drink lots of water if you have the trait.
- Exercise is also a trigger. If you exercise, let your teacher/coach know you have the trait, and STAY HYDRATED.
- Complications can include pain, ruptured spleen, kidney damage.
- There is a slight risk of a rare type of kidney cancer called renal medullary carcinoma which mostly affects people with trait, but it is VERY RARE.
- There are variants of trait called haemoglobin S Antilles and haemoglobin S Oman. These show up on screening tests as sickle cell trait, but can produce symptoms similar to sickle cell disease under normal oxygen conditions. If you are experiencing severe symptoms with sickle cell trait such as frequent pain crises without flying a lot or climbing mountains or getting dehydrated, ask to be tested for haemoglobin S Antilles and haemoglobin S Oman: they need a further lab test.
- All that said, lots of people with trait can and do lead normal lives, and can even excel. For people with trait are often told they can’t do sport, and they can’t be at altitude, but that’s not true, you just need to take a little extra care.
Most research and leaflets/info online suggests the trait rarely carries any symptoms. However, it is gradually seen that the trait can cause pain in a number of individuals. For those with a sickle cell trait, 20-40% of the haemoglobin is HbS (in comparison to 80-100% in patients with a sickle cell disorder), suggesting that some sickling and the associated joint/crisis pain can occur.
To minimise any pain:
- Folic acid is good for stimulating the production of red blood cells and improving anaemia. Try taking folic acid supplements, and eating foods rich in folic acid e.g. leafy green vegetables (broccoli, kale, spinach, peas), dried beans, and almond milk. B-12 vitamin is also necessary for the production of red blood cells in the bone marrow. Foods rich in B12 vitamins include fish, beef, lamb, cheese and eggs. These foods can help to increase haemoglobin levels.
- It is also important that you remain hydrated, stay warm (minimising any draughts in the house) and do your best to stay relaxed as stress can cause crisis pain.
If you would like to read more into sickle cell trait, please click on the links below which explain situations where you need to take care.
Q: Do you have any information on gene therapy?
A:Gene therapy is a new emerging treatment for sickle cell and potentially a cure. Please see this link which has information and further resources about this.
Q: Can a white British person have sickle cell?
A: A child will have sickle cell trait when they inherit one sickle cell gene (HbS) from one parent and one normal haemoglobin gene (HbA) from the other parent.
Although sickle cell trait in Britain, is mainly found in people of African and Caribbean descent, it is not exclusive to this group and can occur in white British people.
This article from the Independent which is from 1999, may be of interest to read.
Q: Where can I get a sickle cell / sickle cell trait card?
A: The Sickle Cell Society do not provide sickle cell and sickle cell trait cards.
They are sometimes given out by a sickle cell and thalassaemia centre or hospital when the blood test is done. However, we have heard from that not all centres or hospitals still/can reissue them.
Contact your local sickle cell and thalassaemia centre, the details of which you can find at this link.
Q: I have sickle cell/sickle cell trait and I want to start a family/have a child?
A: The chances of a couple with sickle cell trait having a baby with sickle cell disease.
Please see the information on our website on genotype inheritance and testing baby during pregnancy.
Also on the following website is information on sickle cell trait.
NHS Screening Programme: Email
Helpdesk phone number: 020 3682 0890
Pre implantation genetic diagnosis is an option for a couple who do not want to have a child with a genetic disease. Please see the link below which has further information.
Q: What life insurance is there for a person with sickle cell?
A: Life Insurance for people with Sickle Cell Disease.
Here is some information from The Money Advice Service about buying insurance if you are ill or disabled.
The Genetic Alliance also has information about what questions insurance companies are allowed to ask.
Regarding Life Insurance companies, an insurance broker can search for suitable. Below, is a list of brokers you can contact. They will need information about your condition and how it affects you.
Please note these are not recommendations from Sickle Cell Society but a list for you to contact.
Rosemount Wealth Management
Specific contact: Email or call on 07985130259.
Resource #1
Resource #2
Resource #3
https://owlfinancial.co.uk/
Specific contact: Email or call on 07525394058
https://www.eunisure.co.uk/
Specific contact Cherelle Augustine or call 07858 328800
Also see our website but please note some may no longer be open.
Q: I am in need of financial assistance and asking if you give grants?
A: Although we are a UK national charity, I am sorry that we do not have the resources to make grants or donations available so unfortunately cannot offer any financial assistance.
You may wish to visit the following websites of organisations that may be able to assist but please note that these are not at our recommendation:
Q: I would like to offer my services as a motivational speaker
A:We don’t have any opportunities for a motivational speaker at this time. Sometimes professionals are sourced for workshops or events therefore please send us your details for our records. We are always in need of volunteers which you may wish to consider. Therefore, if you wish to volunteer please complete our Volunteer Application Form.
Q: I would like to volunteer/volunteer my skills
A: Please complete our Volunteer Application Form
Q: I would like to donate blood, who do I contact?
A: The Sickle Cell Society runs a blood donation project, ‘Give Blood, Spread Love’, aimed at raising awareness of the need for more black and mixed race blood donors. Ethnically matched blood is needed to provide lifesaving transfusions for people with sickle cell. For more details, please check here or call Tracy Williams, Project Manager, Blood Donation 07809 736099 or email.
Q: I would like a blood test for sickle cell, who do I contact?
A:To have a test done, contact your GP or you can consult a specialist sickle cell and thalassaemia centre which you can find at this link.
Q: Do you have leaflets, guides, publication on sickle cell and sickle cell trait?
A: Please click on the following links in the information below where you can download leaflets, posters, booklets, and other publications.
Sickle Cell Disorder and Sickle Cell Trait
Let’s talk about sickle cell poster A3 size
Did you know about sickle cell ages 5-10
Did you know about sickle cell ages 11-16
Here is a link to a guide called ‘A parent’s guide to managing sickle cell disease’. Although it is written for parents in the UK, it has a lot of useful information.
Please see the link below where you can download, Sickle Cell Disease in Childhood: Standards and Recommendations for Clinical Care can be downloaded for both the Adults and Children publications.
Sickle Cell Disease in Childhood: Standards and Recommendations for Clinical Care.
Standards for the Clinical Care of Adults with Sickle Cell Disease in the UK 2018.
Health Information and Advice
Q: I have sickle cell/sickle cell trait, do I need to shield?
A: Please see the government guidance on who needs to shield by clicking this link.
Adults with sickle cell disorder fall into the clinically extremely vulnerable group and therefore should follow the government’s guidelines.
Children with sickle cell disorder and anyone with sickle cell trait are generally not required to shield unless advised by their doctor.
General information about sickle cell and covid-19 can be found on our website.
Q: Can I have the Covid-19 vaccine and how safe is it?
A: The vaccines have been developed by Pfizer/BioNTech, Oxford-AstraZeneca and Moderna. All of these have approved for use in the UK. Other vaccines are being developed but they will only be available on the NHS once they have been tested.
Those identified to be at greater risk to Covid-19 will be prioritised first to receive the vaccine. Therefore, individuals will be contacted by the NHS with more information on when and how they will be invited to get the vaccine. Their local NHS will ensure that they can receive the vaccine as safely as possible, as well as any care and support needed. After receiving both doses of the vaccine, it is advised that individuals should continue to follow shielding advice until further notice whilst continued assessment of the impact of vaccination among all groups is being done.
Generally, it is said to be safe for most people but if you have had a serious reaction (see bullet points below) to a vaccination or a severe allergy before it is advised not to have the vaccine.
- a previous vaccine
- a previous dose of the same COVID-19 vaccine
- some medicines, household products or cosmetics
There is no known long-term complication as the vaccine is relatively new therefore it has yet to obtain years of collective data.
There’s no evidence the COVID-19 vaccine is unsafe if you’re pregnant or breastfeeding, but more evidence is needed before you can be routinely offered the vaccine. Women should discuss the benefits and risks of having the vaccine with your healthcare professional and reach a joint decision based on individual circumstances. Women who are breastfeeding can also be given the vaccine.
With more people living with sickle cell being offered the COVID-19 vaccine, the Sickle Cell Society has created videos to help answer people’s questions.
The first video is a presentation by Dr Anna Goodman (Consultant in Infectious Diseases) and can be watched here
Here is the second video on sickle cell and vaccine cab be watched here: Sickle Cell, COVID-19 & Vaccination (Presentation and Q&A).
The third video ‘Getting the COVID-19 Vaccine: Sickle Cell Patient Stories’ shares the stories and experiences of sickle cell patients who have had vaccine, asking why they got the vaccine and if they had any side effects.
Full information about the Covid-19 vaccine is on the NHS website via this link.
General information about sickle cell and covid-19 can be found on our website.
Q: What is bone marrow transplant?
A:Please see the information via the following link about bone marrow transplant from Evalina Hospital which explains about the procedure.
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Social Welfare