My take away tips for living with Sickle Cell
by Elizabeth Naamorkor Caulley, patient representative
Drink at least 2-3 litres of water per day
When you are feeling tired eat food to boost your red blood cells
Clothing – wear thermal undergarment and socks (M&S outlets)
Bedding – electric blanket (safety first) and flannelette sheets for autumn, winter & spring
Inform utilities companies (water, gas, electricity) about sickle cell disease and to be put on their priority list
Get your hospital treatment plan from the Sickle Cell Team at the hospital
Carry your medication with you Always
Keep track of your medical appointments
Get prescriptions filled/refilled regularly
Get Regular appt for dental, eyes etc.
Practice self-care – exercise (walking & yoga), healthy eating, sleep, drink plenty of water and seek professional help when needed by contacting sickle and thalassemia centre.
Flu & Covid vaccinations
Safe use of medications
- Ask your GP/Consultant about the benefits and risks of your medicine.
- Take your medicine exactly as prescribed.
- Report any side effects of your medicine.
Social Security for personal independent payment, go to De Monte University website for information on Pip https://sicklecellwork.dmu.ac.uk/social-security/. It has a real anonymised example of an applicant with SCD completing a PIP assessment form and renewal of PIP
Access to work – can help you get or stay in work if you have a physical or mental health condition or disability.
The support you get will depend on your needs. Through Access to Work, you can apply for:
- a grant to help pay for practical support with your work
- support with managing your mental health at work
- money to pay for communication support at job interviews
Access to Work could give you a grant to help pay for things like:
- BSL interpreters, lip speakers or note takers
- adaptations to your vehicle so you can get to work
- taxi fares to work or a support worker if you cannot use public transport
- a support worker or job coach to help you in your workplace
Website: https://www.gov.uk/access-to-work
- Sickle Cell & Employment – Know your rights under The Equality Act 2010
Given the nature of SCD it is likely that most people with the diagnosis will fall within the definition of disabled for the purposes of the Equality Act 2010. - Job Application Disclosure of Sickle Cell
- Flexible working or Working from Home
- Individual Support Plan
- Sickness Absences
Useful Links
Access to Work If you have a paid job, or are about to start or return to one, you can apply for an Access to Work grant to pay for:
- special equipment, adaptations, or support worker services to help you do things like answer the phone or go to meetings
- help getting to and from work
Disability Law Service Disability Law Service is a unique charity that has been providing free legal advice and representation for disabled people since 1975. This includes people living with sickle cell.
Disability Rights UK (The Right to Participate in Employment) Guidance on:
- Reasonable adjustments not made in recruitment process
- Asked about disability or health condition prior to job offer
- Support and Adjustments to do your job
- Inaccessible premises
- Sickness absence
- Disciplinary process
- Dismissal
- Promotion and Training
- Equal Pay
- Redundancy
- Harassment
- Victimisation
- Failure to provide support and adjustments to do your job
Equality and Human Rights Commission:
Trades Union Congress – practical advice for trade union reps on issues they are likely to encounter when dealing with the range of issues that can arise in the workplace
https://www.tuc.org.uk/union-reps
Resources for Equality & Discrimination: Age, Disability, Gender, LGBT+, Race, Religion
https://www.tuc.org.uk/union-reps/equality-and-discrimination
UNISON Proving Disability and Reasonable Adjustments https://www.unison.org.uk/content/uploads/2019/02/25362.pdf