If you’re facing a diagnosis of lupus, the last thing on your mind may be your finances. However, to try and avoid money worries building up, it is best to manage your financial situation as soon as you can. Worrying about money can often be a cause of stress, which in turn could potentially trigger a lupus flare.
What additional costs might I have because of my lupus?
A report published by the Extra Costs Commission found that the living costs of people with disabilities and long-term health conditions were higher. Some costs vary based upon the type of condition but others affect a diverse cross-section of people;
- Equipment, clothing and adaptations
- You might think essential equipment like a wheelchair you need is provided for free. Unfortunately people often have to find funding themselves to get the wheelchair that’s right for them. Other adaptations such as UV protective clothing/filters and low UV-emitting lighting can all add up.
- Transport can be a big cost for some people, with many having to rely on taxis or facing expensive parking charges just to do basic things like shopping, going to hospital appointments or getting to work.
- Basic travel insurance can be more expensive for people with lupus. Insurance isn’t the only problem either. Some people also miss out on last-minute offers and deals due to inaccessible hotel rooms, transport or destinations and many have to pay a premium to stay closer to facilities and attractions.
- Medical costs
- Whilst the cost of having multiple prescriptions in England can be mitigated with a Prescription Prepayment Certificate (PPC), many other health-related costs such as eye care, dental costs and wigs may not be covered depending upon your circumstances.
What can I do to get the most from my income?
One of the first steps in managing your financial situation is to make the most of your current household income.
Help from your employer
- Sick Pay
- You can get Statutory Sick Pay (SSP) for up to 28 weeks if you’re employed but unable to work and your average earnings in the two months before you stopped working were at least £113 a week.
- Ask for support so you can return to work
- If you feel that you may be able to return to work you have the legal right to ask your employer to make reasonable adjustments so that it’s easier for you. You can find more information about reasonable adjustments, your workplace rights and financial support for your employer in our lupus employment guides.
“I’ve found being honest with my line manager has been the best thing to do and this has then helped both my organisation and me. In my experience, if you don’t ask you don’t get and this is so important with the invisible condition that is lupus, so if you need help, ask! Colleagues and managers will surprise you!”
- Check your workplace pension
- If you’ve been paying into a workplace pension, ask your employer or pension provider whether there are any ill-health benefits you might be entitled to. If there are, find out how much they’re worth and how long they will last. For example, you might be able to retire early if you’re unable to continue working. The Money Advice Service has a helpful guide for early retirement because of illness or disability.
“I had to take early retirement at 46 due to ill health. I worked for the NHS for 30 years and had my own business for six years. I was very enthusiastic and passionate about my career. I also have Sjögren’s syndrome plus other autoimmune diseases and early stage multiple myeloma (blood cancer). At the time I was very upset having to take ill health retirement and think I cried for the first month non-stop. Now, one year down the road, I can see the benefits of not having to go to work; I can see friends and family when I’m well and concentrate on doing nice things on a good day and rest/sleep on a bad day! I now have no regrets.”
“I have only recently retired due to ill health, so it’s all a bit fresh and raw right now. However I’m now a few months into the process and I already see and feel the benefits. I can relax/rest when I’m having a bad day, and see friends/family when I’m having a good day.
Tips for anyone else entering the process:
– Ensure your manager and GP are on-board and fully understand what you’re going through. Don’t be afraid to admit how difficult things are for you.
– Accept this as a new (and better) stage in your life. I’m only 44 but I’m looking forward to getting a better quality of life, when possible.
– Replace work with a new hobby. I’m going swimming and getting a puppy very soon.
– Enjoy what you have and try not to miss what you had.”
“I retired from full time secondary teaching in 1996, aged 39. Since then I have been able to work two days a week, but I finally said goodbye to the classroom two weeks ago, age 59. By stopping full-time hours my quality of life changed dramatically meaning I could enjoy my fewer hours doing a job I loved. I was also able to come off some of my drugs.”
If you are going to have to manage on a lower income due to reducing hours or leaving employment completely, it’s important to look at your budget straightaway to make the most of your income.
A few organisations offer excellent free budget planning services;
– The Money Advice Service – Budget Planner
– Money Saving Expert – Budget Brain
– Citizens Advice – Budget Tool
“I think the most important thing is to be honest with yourself in terms of any lifestyle changes you need to make in order to ensure your health. I had a high stress job and realised it was impacting my health and so I specifically began searching for a job that would not trigger flares and allow me the flexibility to deal with my lupus. I took a pay cut but found a job that lets me work from home where I can manage my stress. I sold a more expensive house and moved to something I could afford on my salary. I have learned that it is better to do what it takes to be healthy and not resent/regret any necessary changes you need to make in your life to do that. A long life is better than a big house! There are more flexible jobs people with lupus can function well in, but you specifically need to look for them and adjust your budget as necessary.”
Saving on prescription costs
Lupus is not currently included in the list of medical exemptions, though some people with lupus may still be entitled to free prescriptions due to their circumstances or an overlapping condition.
If you do not meet any of the exemption criteria a Prescription Prepayment Certificate may be the best method of saving money on prescription charges if you need more than 12 prescribed medicines each year or more than three prescribed medicines in three months.
Claim on insurance
Some life insurance or mortgage policies offer protection that would cover your mortgage payments or replace some of your income. There is usually a waiting period before the policy pays out, so the sooner you send your claim the better. Examples of policies that could include this cover are;
– Critical illness insurance
– Income protection insurance
– Payment protection insurance
– Mortgage payment protection insurance
– Short-term income protection insurance
Is there any financial support I could be eligible for?
If you have been diagnosed with lupus, you could be entitled to disability benefits from the government. There are a range of benefits available with some that are means-tested (based on your household income) and others that are not. The Money Advice Service has a helpful guide, ‘Which disability and sickness benefits can I claim?’
You can also find out what additional support you may be eligible for by using an online benefits calculator.
“I applied [for PIP] and was given daily living but not enough points for mobility. I really do think it depends on the assessor you see! The best advice I can give is to be completely honest about how up and down you can be with the illness, and a big part of the assessment is how it affects you mentally. I also explained how even the most experienced doctors struggle to understand the condition and how different it can be from one day to the next.”
“My best advice is to look up (Google) the PIP descriptors and look at how your illness meets the criteria being assessed. Unless we describe how our illness affects our daily living and mobility we won’t get the points which means we’ll be declined the entitlement.”
To find out what award you may be eligible for when claiming Personal Independence Payments (PIP) or Employment & Support Allowance (ESA) you can use the free service from c-App.
If you need guidance when applying (or appealing a decision) for PIP or ESA, members of LUPUS UK can request free guides produced by the organisation Benefits & Work.
“Give examples of how lupus affects you every day. You may be completing the form on a good day, but think about your worst day and how you manage the activities.”
“Keep going! I got zero points as the Work Capability Assessment doesn’t work for someone with lupus. I went to appeal and it got overturned before I even got to tribunal. I have just lost a 25 year career to SLE. I wasn’t having a DWP assessor tell me I was fit to find a job. I had a job; lupus stole my health, my job, my social life. The DWP weren’t taking my ESA.”
Gas & electricity suppliers
It can be beneficial to inform your energy supplier(s) that you have a long-term health condition and ask them if you qualify for the government’s Warm Homes Discount (you could save up to £140 off your electricity bill). Your supplier might also:
– Register you for their priority service
– Carry out free annual safety checks
– Offer emergency call-out priority.
– Protect you from being cut off if you fall into arrears
Your local council
If your condition means you have difficulty getting around or doing day-to-day tasks your local council might be able to provide some additional support with things such as care, equipment or adaptations. The first step is to get your needs assessed by your council.
You might also be entitled to a discount on your Council Tax if you have to live in a larger property than you would have needed if you were not disabled. It’s called the ‘Disabled Band Reduction Scheme’. Contact your local council to apply for the scheme.
If you are on a low income and live in England you may be eligible to receive financial help through the NHS Low Income Scheme. The scheme covers:
– Prescription costs
– Dental costs
– Eye care costs
– Healthcare travel costs
– Wigs and fabric supports
You can apply for the scheme as long as your savings, investments or property (not counting the place where you live) don’t exceed the capital limit. In England, the limit is:
– £23,250 for people who live permanently in a care home
– £16,000 for everyone else
Any help you’re entitled to is also available to your partner and any dependent young people. For more information about requirements visit NHS: help with health costs.
There are many charities and organisations that provide grants to people and their families to help them cope with a lower income and the extra costs associated with being sick or disabled. You can search for grants based upon your circumstances and needs using the Turn2Us website.
Free cinema tickets for friends and careers (and other offers)
The Cinema Exhibitors’ Association (CEA) have created a card scheme that gives one free ticket for anyone accompanying you to a participating cinema. Apply for a card on the Cinema Exhibitors’ Association website.
Many other organisations and locations also offer concessions for people with disabilities and/or their careers. KDChave started a list of some of the providers.
Where can I get insurance policies at a reasonable price?
Insurance for people with lupus and their families is often expensive and confusing. Buying the right insurance policy at an affordable price can be tricky.
Scope has an excellent webpage with tips for buying insurance if you have a disability.
We’ve collected a list of insurance companies who offer travel insurance for those with pre-existing medical conditions. Some members of LUPUS UK have found them helpful in the past.
NLP Financial Management has a partnership with LUPUS UK. They offer a free consultation to discuss your life insurance requirements. They can act as a guide and help make the application process for life insurance as painless as possible.
As an additional benefit, they make a contribution of 20% of their initial fee from the insurer back to LUPUS UK to show their continued support. There is no charge to you to use their insurance services as they receive fees from the insurer once the policy is put in force.
For a free consultation call 020 7472 5555.
Where do I go for help?
General money advice
If you are in need of general money advice and/or further assistance with your personal financial circumstances, there is a range of organisations that offer free help;
The Money Advice Service
The Money Advice Service provides free and unbiased help and guidance on all money matters. Their service is available online, over the telephone (0800 138 7777) and is backed by government.
Citizens Advice provides free online help on many issues, including debt, benefits, money, employment and consumer rights. For face-to-face advice search for a Citizens Advice Bureau near you.
Citizens Advice Scotland
Citizens Advice Scotland offers advice on benefits, debt and money – find your nearest branch to make an appointment.
“A way of helping to manage finances that can be severely affected by any change of circumstances like illness is to go to Citizens Advice. They take a note of all income and circumstances and will run a benefits check to see what help you could be entitled to. They will help you fill the forms in too.”
This is a useful website especially for offering tips on saving money. It is free to use.
Which? campaigns for consumer rights and provides general money advice through its website, magazine, money helpline and legal service. It’s a subscription-based service, so you have to pay to be a member to access the money helpline, legal service and magazines. However, much of the money information on its website is free.
Financial Conduct Authority (FCA)
The FCA regulates the financial services industry in the UK. If you use a financial adviser you can check the FCA register to make sure the firm you’re dealing with is regulated. There’s also information about financial products, possible scams and how you can protect your money on their website and through their consumer helpline (0800 111 6768).
The Pensions Advisory Service
The Pensions Advisory Service gives free guidance on all pension matters. It also helps with problems, complaints or disputes you might have with your workplace or private pension arrangement. Its telephone helpline (0300 1231047) is staffed by pension specialists.
If you are experiencing stress and/or depression because you are worried about money, there are support services available for you to talk to. If you are experiencing stress or depression your GP or consultant are often good people to speak to as they can offer treatment and referrals for support.
“My GP arranged a short course of CBT counselling as I felt I’d lost my identity. Whilst I knew my health was more important and ‘retiring ‘ was inevitable it’s a big shift. It definitely helped and I’d recommend to anyone considering it, or struggling coming to terms with major life changes.”
If you would like to speak to other people with lupus for support, you can do so in our community forum, at a Regional Support Group meeting, with a trained volunteer telephone contact (contact us or check the back cover of News & Views Magazine for more information).
Further information about available support services can be found in our leaflet, ‘Lupus and Depression’,
Scope – Money
Gov.uk – Financial help if you’re disabled
The Money Advice Service – Charitable grants for ill or disabled people
The Money Advice Service – Getting free financial help and information
Citizens Advice – Sick or disabled people and carers
NHS Choices – How to cope with money worries