We want to empower everyone with cystic fibrosis (CF) to live without limits, which means supporting the CF community with your career goals and aspirations.
Work can be important for many reasons – our financial security, as part of our identity, for our mental health, our social lives, and to give us confidence.
Work Forwards is our programme of free tailored careers information, advice, and guidance for people with CF and their loved ones.
This programme is supported by the National Lottery Community Fund.
How we can support you
We offer information, advice, signposting, and practical support to people with CF and people who care for those with CF through our Work Forwards programme.
Through Work Forwards, we offer:
- tailored one-to-one support from employment experts to help identify your career goals and find fulfilling employment
- support to find the right balance for you between employment and caring responsibilities
- support with employment rights
- group sessions to learn key employability skills
- a chance to share experiences of work and CF to inspire and support each other
We're funded by the National Lottery Community Fund to support people with CF to lead fulfilling lives with long-term financial sustainability through stable and secure work.
Get in touch
If you would like to get support from the Work Forwards team, you can get in touch via our Helpline.
We’ll be organising a programme of events designed to support people with CF and those who care for them with work and employment issues and share experiences. Keep an eye on this page and on our social media channels for the latest updates.
If you need urgent advice about working, you can speak to your CF social worker, or you can contact our Welfare and Rights advisor though our Helpline.
Finding the right job for you
Searching for jobs can be a difficult process, but the right job can bring you fulfillment and independence. On this page we look in detail at some of the stages you’ll go through to find the right job for you.
Writing a CV
The purpose of a CV is to help you to secure an interview with a prospective employer. While there are no specific rules for creating an effective CV, there are some widely accepted principles and guidelines that will help you. On this page, we look at the different sections you will need to include on your CV. We’ll also provide some suggestions for creating a structure and layout that is professional, clear and concise.
Balancing work and changing health
There may be times where you want to change the way you work because of your health. Be clear with your employer about what you can do and the skills you have, and focus on finding a creative solution.
Changing your current role
If you have been employed for more than 26 weeks you are allowed to formally ask your employer to change your contract so you can work more flexibly. It is up to them to agree or disagree within three months of the request. It would be worth putting in here that it might be worth asking for this flexibility in writing, and specifically asking if this flexibility would be considered a reasonable adjustment under the Equality Act. The UK Government have confirmed that they plan to make flexible working a right for employees from the first day of employment.
If you’ve told your employer about your CF, they should think about making reasonable adjustments for you at every stage of employment.
This can include:
- Spreading your contracted hours across the week, month or year instead of working
set hours every day
- Making your start and finish times flexible
- Reducing your working hours
- Working from home some or all of the time
- Working on the ground floor
- Avoiding tasks that would expose you to a high risk of infection
- Taking unpaid sick leave when you have appointments or hospital stays, or saving up overtime or annual leave days for absences.
Under the Equality Act 2010 (or the Disability Discrimination Act 1995 in Northern Ireland) employers must offer a very wide range of reasonable adjustments for people with a disability.
Changing to a different role
If you don’t think flexible working in your current role would be enough, you can talk with your employer about whether a different role in your workplace might suit you better and make life easier for you.
On the other hand, you might feel that moving to a different company will be better for you. This is entirely up to you. Many people find it difficult to prioritise their own health in their careers, whether physical or mental. You can talk to someone at our friendly Helpline if you have any questions or just need a listening ear.
If you are unhappy with an employer decision around reasonable adjustments, or feel they’re not doing enough, you should seek advice. If you’re already a member of trade union, (or a students’ union if you’re in study), they can provide advice and guidance on what you can do next.
If you’re unsure of where else you could get advice or support, get in touch via our Helpline, or email the Work Forwards team directly at firstname.lastname@example.org. We cannot provide legal advice, but can help identify other potential avenues for support.
- Spreading your contracted hours across the week, month or year instead of working
Schemes, grants and advice
Help at Jobcentres
Your nearest Jobcentre Plus has experts in disability employment who can give you advice about employment and help you find a job. They can help your current or potential employer understand how your CF affects your ability to work and can also support you and your employer while you are in employment. They can also give you more information about any of the schemes below.
The Flexible Support Fund
This fund can be accessed through a Jobcentre Plus adviser. If you are claiming benefits, speak to your work coach about this. It may also be able to support some lone parents, partners and carers. The fund can provide training and education that moves you further towards getting a job, as well as work clothing, childcare, and travel costs to interviews.
The Rapid Response Service
The Rapid Response Service is for people who are being made redundant. They can help you to find a new role, find training and can organise work trials for some job seekers. It may be able to help you with costs towards your job hunt such as travel, childcare and tools and equipment. There are different services in Scotland, Wales and Northern Ireland.
The Access to Work scheme can give you financial support and advice on some of the difficulties you might face at work. This can include:
- Funding alterations to buildings
- Financial help for special equipment at your work
- Helping with travel to work
- Funding a support worker
Disability Confident makes sure that an employer will interview someone with a disability if the minimum criteria for the job are met. The employers also must ensure the employee is encouraged to grow their skills and can stay in employment for as long as possible.
Grants for starting a business
The Prince’s Trust assists unemployed people between 18 and 30 to set up their own businesses. They provide low-interest loans and grants. You must have a business plan and have tried to raise the finances elsewhere.
We run the Helen Barrett Bright Ideas Awards to support people with CF who have a great idea for starting or growing their own business. If you’re over 18 you can apply for a grant to help you on your way.
An overview of benefits while working
Can I qualify for benefits while I’m working?
Yes, people who are in work can qualify for benefits.
However, your entitlement to benefits depends on many things, like who you live with, how much you earn, if you have a partner in employment, your savings situation, and your National Insurance record.
Universal Credit is a benefit for people of working age, in or out of work. It can be claimed online and there is no paper claim form. Universal Credit does not depend on your National Insurance Contributions, but it does take your household’s means (income, savings and other capital) into account.
There are no rules about the number of hours you can work. Your household income, however, will affect the amount of Universal Credit you receive.
If having CF or other health conditions limits your capability for work, you can still claim, but you should get a sick note (fit-note) from your doctor and will be asked to go through a Work Capability Assessment. This could mean that you get more money, without having to meet so many conditions to keep receiving benefit.
There may be extra payments if:
- you or another adult in your household have ‘limited capability for work related activity’, or are caring for someone (including you).
- you pay rent - Universal Credit can include a payment towards your housing costs. If you have a mortgage, you may be able to get some support with housing costs in the form of a government loan.
- you have children – Universal Credit can include a payment towards their living costs, and also towards the costs of childcare.
Other benefits you can claim
If you are working less than 16 hours a week and have made enough national insurance contributions, you may be able to claim New Style Jobseeker’s Allowance.
If you have children, you may also be able to get Child Benefit.
Personal Independence Payment (PIP) helps with some of the extra costs caused by long-term ill-health or a disability if you’re aged 16 to 64. PIP does not depend on how much you earn or have saved, and you can still receive it even if you work or are able to work. To qualify for PIP you will be assessed on how well you can carry out 10 daily living activities and two mobility activities. Each activity is divided into descriptors. Please contact our helpline if you’d like these to be sent out to you, so that you can assess yourself.
If you are currently receiving any legacy benefits (see below), it is very important that you seek specialist advice before claiming Universal Credit, as if you end up worse off on Universal Credit you will not be able to go back to legacy benefits.
Legacy benefits are:
- Child tax credit
- Housing benefit
- Income-related employment and support allowance
- Income-based jobseeker's allowance
- Income support
- Working tax credit
To check what benefits you might be entitled to quickly and easily, you can use an online benefit calculator.
It's a good idea to get advice about benefits, for example from an Advice agency such as Citizens Advice. You can also speak to your CF team social worker, or you can contact our Welfare and Rights Advisor through our Helpline who can check what you may be entitled to.
Discrimination and legal responsibilities
Before you start work
You are legally protected against discrimination in every stage of employment, including recruitment.
If you’re worried you may face discrimination, make sure to research a company before you apply for a job. Think about:
- What is the company policy on disability, and how widely is this circulated?
- Does the company actively promote employment opportunities for disabled people?
- Is your potential employer a member of the Business Disability Forum or Disability Confident scheme?
In England, Wales and Scotland, the Equality Act 2010 aims to stop employers asking inappropriate questions about your health before offering you a job. This is covered in the Disability Discrimination Act 1995 in Northern Ireland. If you think you are being asked inappropriate questions on an application form or in an interview with a potential employer, seek specialist advice. You may find that giving your employer information about your experience of CF helps.
If you do not make an employer aware that you have CF, you may lose the protection which would be available to you under discrimination law.
If your employer knows you have CF, you can ask for reasonable adjustments to your job. Each case is individual and can depend on what is reasonable and practical for your employer, and for you. The Access to Work scheme can help your employer to make adjustments.
Your health at work
You, your employers and your colleagues have responsibilities under The Health and Safety at Work Act 1974. Your employers must look at the potential risks to your health, and you all must work towards preventing them.
Ideas about risk can change because of culture and current opinion, and it is never possible to be risk-free. Talk about any potential risks to your health with your employer and perhaps with your doctors.
You are not allowed an unlimited amount of time off work for sickness or hospital stays. Your employer does have to make reasonable adjustments, though. It could be unlawful to treat you the same a person without a disability.
Taking action against your employer
The Equality Act 2010 (or the Disability Discrimination Act 1995 in Northern Ireland) makes it unlawful for your employer, or potential employer, to discriminate against you because of a disability. They must also make reasonable adjustments to your job.
If you think your employer has broken the law,
- You can try to solve things informally first – your employer might not realise they are discriminating against you. If you are a member of a trade union, you could seek their support. If you are a student, your University or College may have a Students’ Union (or a Students’ Association in Scotland) who may be able to provide advice.
- If this doesn’t work, ask your Human Resources (HR) department how to make a formal complaint. You could contact ACAS at this point, before taking legal action. They can give you advice and help you to resolve disputes with your employer.
- If you still aren’t happy with the outcome, the next step is legal action against your employer in an Employment Tribunal. The time limits are complicated and short. In general, legal action must be taken within three months the date of the actions which lead to your complaint. The time limit may be longer in some cases. If you think you might want to take legal action, get advice immediately.
This section gives only a basic introduction to complex law. You should seek proper advice for your individual circumstances. You should not rely on it for legal advice.
ACAS can give you free advice on your rights and help you to resolve discrimination disputes with your employer.
Citizens Advice is a charity that provides free, independent and confidential advice to people on their rights and responsibilities.
Disability Rights UK provides advice and information on your rights as someone with a disability.
Legal aid gives free legal advice for discrimination problems to people on low incomes.
Equality and Human Rights Commission is responsible for protecting human rights and stopping discrimination in Britain.
Trade Unions The Trade Union Congress have a page that helps people identify which Union might already cover their workplace.
Information for employers
You can give this information to your employers to help them understand more about CF and how it affects you.
Here to help
Our friendly Helpline team are here if you need us - whether you're looking for information, support or just someone to talk to.
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