Sickle Cell
Sickle cell is the most common single-gene condition in England. Around 17,000 people live with the condition in England. The sickle cell gene is more common in areas of the world that either are, or used to be, malarial. It is an inherited, life-long condition. People living with the sickle cell condition experience severe acute pain, chronic pain, chronic anaemia and fatigue. They may also develop long-term organ damage. Yet, the condition is very variable both between different people and within the same person over time. There are also new therapies improving quality of life and also genomic cures. The aim of the project was to produce evidence of barriers and enablers to employment. The project was funded from January 2018 to January 2020. As the Employment Rights Bill Employment Rights Bill – Parliamentary Bills – UK Parliament is being debated, we will be updating our resources in due time.
The project produced a Guide to Sickle Cell and Employment:
PDF Version_Guide To Sickle Cell and Employment Version_1.1_2019
WORD Version_Guide To Sickle Cell and Employment Version_1.1_2019
The final report of the project can be found here:
PDF Version_ Sickle Cell and Employment Report_2020 FINAL
WORD Version_Sickle Cell and Employment Report_2020 FINAL
The project was led by the experiences of voluntary organizations for people with SCD:
Sickle Cell and Employment Guides
We are pleased to provide a Guide to Sickle Cell Work and Employment for Employers and Employees
Guide to Sickle Cell, Work and Employment
PDF Version_Guide To Sickle Cell and Employment Version_1.1_2019
WORD Version_Guide To Sickle Cell and Employment Version_1.1_2019
Reasonable Adjustments
During the project a De Montfort University Graduate Champion was appointed to work on a short project. The project looked at key sickle cell symptoms and the reasonable adjustments that employers could make to better include people with sickle cell disorders (SCD) in the workplace.
SCD Symptoms and Reasonable Adjustments:
PDF Version 2.0_A-Z SICKLE CELL DISORDER AND REASONABLE ADJUSTMENTS
WORD Version 2.0_A-Z SICKLE CELL DISORDER AND REASONABLE ADJUSTMENTS
Thalassaemia and Employment
During the project a De Montfort University Graduate Champion was appointed to work on a small project, in conjunction with the UK Thalassaemia Society, looking at the relationships between beta-thalassaemia major and employment.
We are pleased to be able to share a short report on Thalassaemia and Employment, which is available here:
PDF Version_Thalassemia Employment Report FINAL Version
WORD Version_Thalassemia Employment Report FINAL Version
Travel to Work
One of the findings of the research is how workers with sickle cell face a challenge in commuting to work.
- They already experience chronic anemia and fatigue so a punishing commute leaves them tired even before work commences.
- Their loss of function of the spleen means they are especially vulnerable to respiratory infections when in close contact with other commuters.
- Exposure to cold in waiting outside for public transport, or switching between warm and cold environments is using public transport, is a risk for triggering a sickle cell painful crisis.
- Access to a car, to a disabled parking space at work, and to flexi-time to avoid the rush hour can help.
LONDON
Apply for a Please Offer Me A Seat card and badge to enable people with a hidden condition such as sickle cell to access the priority seats on buses, tube and trains.
If driving to work find out if you can be exempted or obtain a discount for the London Congestion Charge
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
- Victimization
- Failure to provide support and adjustments to do your job
Equality and Human Rights Commission has guidance and advice for individuals who feel they have been discriminated against: Individuals | EHRC
TUC: 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
Join UNISON and get essential cover Union resources and advice about differing forms of discrimination at work: Knowledge Base – UNISON National
Acas | Making working life better for everyone in Britain gives free and impartial advice. They can also advise with respect to new legislation which you can read about here Employment Rights Bill – Acas They have template letters for you to use: Templates | Acas for example to request reasonable adjustments. They can give advice if you are going through redundancy Redundancy | Acas or to aid with early conciliation What early conciliation is – Early conciliation – Acas if you are going to an employment tribunal.
Work and Sickle Cell
Currently disabled peoples are discriminated against in employment; underemployed (thus wasting talents of disabled peoples), and not seen as potential employers. Inclusion of disabled peoples in work is vital in economic as well social justice terms. This project aims to identify not only barriers and enablers to secure paid employment opportunities for black disabled workers living with SCD but seek to broaden the debate to testify to current societal contributions of people living with SCD (including employment, unpaid care, household work and voluntary work) and ways of living beyond narrow frames of paid employment.
This note may help in challenging discrimination alleging that sickle cell represents a “burden”
Health Economics Note for Community Groups
Women living with sickle cell
In addition to living with sickle cell, women face broader challenges associated with gender discrimination as well. Here are some useful links:
Maternity Action is the UK’s leading charity committed to ending inequality and improving the health and wellbeing of pregnant women, partners and young children – from conception through to the child’s early years. Home – Maternity Action
Rights of Women Helping Women through the Law
UNISON (Gender Discrimination) https://www.unison.org.uk/get-help/knowledge/discrimination/gender-discrimination/
WOMEN’S AID https://www.womensaid.org.uk/
PREGNANT AND SCREWED Home – Pregnant Then Screwed
ACAS with support for adoption and maternity leave which have legal rights and protections: Checking your rights – Maternity leave and pay – Acas
Social Security
Most people will have long careers but we understand that some people can become sick and disabled. Whilst our study is about the experiences of people living with sickle cell in employment, we know that sometimes simply living with sickle cell can be very hard work. If you become disabled and depending on your age and background, there are currently three main benefits:
Personal Independence Payment
Attendance Allowance
Armed Forces Independence Payment
Some people living with sickle cell who need support can need to apply for Personal Independence Payments (PIP) (previously Disability Living Allowance or DLA). You will not have reached state pension age yet. There are guides available: Personal Independence Payment (PIP) | Disability Rights UK
Personal Independence Payments Form
PDF Version_PIP Descriptors and points
WORD Version_PIP Descriptors and points
Presenting Your Case
Here are some ideas to think about how best to present your case as someone living with sickle cell in replying to PIP questions
PDF Version_PIP Consultation_SCD_V1
WORD Version_PIP Consultation_SCD_V1
Case Study Number 1 of a PIP Application
Here is a real anonymised example of an applicant with SCD completing a PIP assessment form:
PDF Version_PIP2_ SCD Example_ 2019
WORD Version_PIP2_ SCD Example_ 2019
Case Study Number 2 of a PIP Application
Everyone on PIP is reviewed frequently. This client was recently reviewed and she was kept on the enhanced rates without further face to face or virtual/telephone assessment.
PDF VERSION_PIP Review-Renewal_2020
WORD VERSION_PIP Review-Renewal_2020
If you have reached the state pension age, you can check if you or your carer are eligible for attendance allowance: Attendance Allowance: Overview – GOV.UK There is also advice about extra pension credit if you become severely disabled and need care. You can also contact the pension service to find out about your state pension and if you have a right to a pension credit if you are severely disabled: Pension Credit: Overview – GOV.UK and there is a guide here: Pension Credit | Disability Rights UK
Disability Rights UK has advice about receiving care and support in your home: Paying for non-residential care and support at home | Disability Rights UK
Early retirement will impact on your pension but there may be times when this becomes necessary due to ill health and disability. This can be the case if you have done a very physically demanding job. Early retirement, your pension and benefits: Personal and workplace pensions – GOV.UK
Plan your retirement income: step by step – GOV.UK
Asylum Seekers and Refugees
Some living with sickle cell may be seeking asylum or have been granted refugee status. Here are some of the services that might be able to offer help or guidance:
ASYLUM HELPLINES: https://www.gov.uk/asylum-helplines
SHELTER: https://england.shelter.org.uk/legal/housing_options/asylum_seekers
REFUGEE ACTION: https://www.refugee-action.org.uk/
LONDON DESTITUTION SERVICE: https://www.refugeecouncil.org.uk/get-support/services/london-destitution-service/
FIND A LEGAL ADVICE CLINIC NEAR YOU: https://www.lawworks.org.uk/legal-advice-individuals/find-legal-advice-clinic-near-you